For several weeks my routine consisted of nursing visits and appointments at the wound care center. Everything was pretty much status quo, until one day when I went to the wound care center and my surgeon probed inside my wound. He told me, that we would have to go back to the operating room, again. At that point I listened to what he was saying but I guess I blocked it out because shortly after I left I couldn’t really remember what he had said. I can only assume that, that happened because the news was so unexpected.
My surgeon’s office got in touch with me shortly after I got home and we were able to schedule the surgery for two weeks later. I was pleased that it was able to be so soon, but that was short lived. A couple of days prior to the day it was supposed to be, the office called me back and explained that we needed to reschedule due to a conflict in my surgeon’s schedule. I wasn’t exactly thrilled that it needed to be postponed but was relieved to know that we would be able to reschedule it for just five days after the original date.
While I was waiting for the surgery date to arrive I couldn’t help but hear the news about impending Hurricane Sandy. I was hopeful that all of the reports were wrong and that everyone was overreacting and that nothing would need to be rescheduled for a second time. Sadly, I got a phone call from the hospital the day before and was told that the hospital was rescheduling everything and so my surgeon’s office would be in touch with me to get it done as soon as we possibly could.
Finally, the day of the surgery arrived, without any further rescheduling. My boyfriend went with me, as per usual. Prior to the surgery, I met with my surgeon and the anesthesiologist and we determined that for this procedure I would undergo general anesthesia. I was not super excited about this prospect but when my surgeon explained that the time previously, I was so aware and in pain that he felt it limited what he could do. Once I heard that I differed to his judgment. The last thing I remember before waking up in the recovery room was getting a kiss from my boyfriend and getting a bolus of something that would “take the edge off” and relax me a bit before I got in the operating room.
When I woke up in the recovery room I verified with the recovery nurse that I did have general anesthesia, she told me that yes I had, although I was pretty sure I had based on the tell tale sore throat and the incredible grogginess that I was experiencing. Shortly after the regular recovery room I was moved to where I would ordinarily get something to eat and then would be discharged. However, things were a little bit different this time around.
When I saw my boyfriend and got a sandwich, my nurse asked me if I was in pain and I indicated that yes I was. This was in and of itself, strange to me because I have very rarely, if ever, experienced post-op pain due to this particular problem. My nurse then gave me a pain pill that had been ordered, just in case. I ate my sandwich and hung out with my boyfriend and waited for the pain pill to take effect. When the nurse came back to see how I was feeling after the pain medication I told her that the pain was still the same as before I had taken the pill. The nurse told me that she was going to call my surgeon to get further orders. She appeared shortly thereafter, and told me that he had said to give me the second pain pill but that I should not go home until he had at least come to speak with me. I took the pill and awaited his arrival. While I was waiting, I started to hear people say that it had begun to snow. I was originally just amused by the snow and did not think much of it. Until, I realized that it could cause difficulty when we tried to go home.
When my surgeon came back, he asked me how I was feeling and I explained that I still had the same pain as I did before I had even had the first pain pill. My surgeon then informed me that it was snowing and the roads were somewhat slippery and asked what I wanted to do. At that point, I asked him what he felt I should do as far as going home was concerned. He explained that with the combination of the weather and the fact that I still had some discomfort he would recommend staying overnight at the hospital. My surgeon also said not to worry about my boyfriend because the hospital would most likely be able to provide a cot so he could stay with me. I agreed that staying over was probably the best thing and my surgeon said he would make the phone call to get me a room. Before, he left he told me that he himself was not going to be at the hospital the next day but that I could take my time and not feel rushed to leave first thing in the morning. He also verified that I knew how to get in touch with him if in fact I should need him the next day.
After, I got settled in the hospital room it dawned on me that I needed to make at least one phone call. I had previously agreed to call my visiting nurse after the surgery so that she would know that it went okay and also to get a general idea of what the upcoming wound care orders were going to be. I explained to her that the surgery was finished but that I was going to stay overnight due to some pain, and also due to the slippery roads. My nurse told me to feel better and to keep her posted as to what was going on. She also urged me to call my parents to tell them that I would not be coming home that day.
I am generally a private person and tend to only tell one or two people about any upcoming surgeries that may be necessary. My parents, in fact only know about half of the surgeries that have been necessary on my wound. Of those, I would say that they have been told about half of only after they had already been done. This may sound weird or cruel, some may say that they are my parents and they have the right to know what is going on, while I agree with that in theory, in practice my opinion is different. I know my family and they do not handle this sort of thing very well and tend to panic, which makes me nuts. I feel that it is in everyone’s best interest, including my own to keep certain things from my parents. That being said, I did agree with my nurse’s opinion that they should know I wasn’t going to be home that night.
I took a deep breath and picked up the phone to call my parents to tell them that I would see them at some point the next day. They may finally be realizing that I am an adult, because the reaction was not anything like I expected it to be. Basically, they just questioned if I needed a ride home the following day or if I needed them at the hospital right then. Being that aside from being in a little bit of pain and the fact that my boyfriend was with me I assured them that I was totally fine and was really just calling so that they didn’t think I was hurt traveling home in a snowstorm.
I spent the next several hours catching up on some sleep, while periodically asking for more pain medication. I have learned through many years of experience, to ask for pain medicine before the pain really starts to hurt, so I tried to take it on somewhat of a schedule so that my pain level never really got difficult to control. By late the next afternoon, I felt like my pain was at a reasonable level and that I would be fine to go home with just a prescription from my surgeon.
Sunday, December 16, 2012
Sunday, November 18, 2012
Mysterious Measurements
I know it has been entirely too long since I have last written and I apologize for keeping you all waiting. Now, without any further delay is another update.
The weeks that followed the surgery seemed to be going very well. My visiting nurses were pleased with the progress and my surgeon was also rather positive. During each nursing visit, the nurses would measure the length, width and depth of my wound. My nurses would always keep me aware of the measurements so that I knew what was going on. Suddenly, one of my nurses got a measurement that was drastically different then it had been previously. I questioned and she measured it again, getting a slightly smaller number but still a depth that concerned me.
When the visiting nurse left I called the wound care center and asked to speak to the nurse there that I was most comfortable with. Who had been the last person to measure it besides my visiting nurses and my surgeon. I left a message and she called me back the following morning. When she called, I explained what was going on and that suddenly the depth was being reported as a centimeter more than it had been just two days prior. The nurse that I spoke to emphasized, that if I was uncomfortable and felt that my wound should be seen by my surgeon, I should definitely come in. The nurse was able to get me an appointment with my surgeon the following morning.
The next morning I went to my appointment at the wound care center so that my surgeon could look at my wound and make sure that nothing was going wrong. When I got there, the nurse that I had spoken to on the phone came into the exam room with me. First, she asked what my feeling was. I explained that one of my visiting nurses got a measurement that I felt was a very drastic change. I wanted to be sure that nothing was going very wrong very quickly, but that small part of me felt like I was being a little overly paranoid and wasting everyone’s time by making an appointment. The nurse immediately told me that I had nothing to worry about and that if I wasn’t comfortable I had every right to come in to get it checked. The nurse also took the time to explain, that there were many variables that could have contributed to a slightly different measurement. I told her that I knew that and that was partially why I was hesitant to come in, in the first place.
It was then that my surgeon came into the room. When he came in he questioned if this was an actual appointment that he had requested or if I had decided to come in for some reason. I explained that it was because a measurement my visiting nurse had gotten concerned me. When the wound was measured my surgeon got a slightly larger result than he had the last time I had seen him but nothing near what my nurse had gotten. I was relieved to hear that it was not measuring what my nurse was saying.
The next day I had another visit with my visiting nurse, this time the one that I totally trusted, not the one that was sometimes getting the wacky measurements. She had already seen the documentations in my chart that the other visiting nurse had gotten and so she began to question what was going on, almost right away. That was when I explained to her that I had gone to my surgeon the previous day because I personally was concerned. My nurse said that I had made a good decision because if things had changed that much that quickly that it would probably be something not so good. I agreed and basically told her that it was my thinking also. The nurse and I also discussed what had gone on when I was at the wound care center and that the measurements by the other visiting nurse were inaccurate. It was sort of ridiculous that the nurse that, though I did trust, I also sometimes had a personality conflict with was the one that had gotten strange measurements. I decided, that from then on, while I was going to listen to her opinions and suggestions I was going to take her measurements with a grain of salt, at least until she was getting them somewhere in the ballpark of what my other healthcare workers were getting.
Once I decided to only somewhat take what one of my nurses said seriously I was able to calm down and focus on what the other people were telling me. I had decided to side with the majority instead of with the one that was telling me scary numbers. All of this was going well for several weeks, until one day when I went back to have another appointment with my surgeon at the wound care center.
The weeks that followed the surgery seemed to be going very well. My visiting nurses were pleased with the progress and my surgeon was also rather positive. During each nursing visit, the nurses would measure the length, width and depth of my wound. My nurses would always keep me aware of the measurements so that I knew what was going on. Suddenly, one of my nurses got a measurement that was drastically different then it had been previously. I questioned and she measured it again, getting a slightly smaller number but still a depth that concerned me.
When the visiting nurse left I called the wound care center and asked to speak to the nurse there that I was most comfortable with. Who had been the last person to measure it besides my visiting nurses and my surgeon. I left a message and she called me back the following morning. When she called, I explained what was going on and that suddenly the depth was being reported as a centimeter more than it had been just two days prior. The nurse that I spoke to emphasized, that if I was uncomfortable and felt that my wound should be seen by my surgeon, I should definitely come in. The nurse was able to get me an appointment with my surgeon the following morning.
The next morning I went to my appointment at the wound care center so that my surgeon could look at my wound and make sure that nothing was going wrong. When I got there, the nurse that I had spoken to on the phone came into the exam room with me. First, she asked what my feeling was. I explained that one of my visiting nurses got a measurement that I felt was a very drastic change. I wanted to be sure that nothing was going very wrong very quickly, but that small part of me felt like I was being a little overly paranoid and wasting everyone’s time by making an appointment. The nurse immediately told me that I had nothing to worry about and that if I wasn’t comfortable I had every right to come in to get it checked. The nurse also took the time to explain, that there were many variables that could have contributed to a slightly different measurement. I told her that I knew that and that was partially why I was hesitant to come in, in the first place.
It was then that my surgeon came into the room. When he came in he questioned if this was an actual appointment that he had requested or if I had decided to come in for some reason. I explained that it was because a measurement my visiting nurse had gotten concerned me. When the wound was measured my surgeon got a slightly larger result than he had the last time I had seen him but nothing near what my nurse had gotten. I was relieved to hear that it was not measuring what my nurse was saying.
The next day I had another visit with my visiting nurse, this time the one that I totally trusted, not the one that was sometimes getting the wacky measurements. She had already seen the documentations in my chart that the other visiting nurse had gotten and so she began to question what was going on, almost right away. That was when I explained to her that I had gone to my surgeon the previous day because I personally was concerned. My nurse said that I had made a good decision because if things had changed that much that quickly that it would probably be something not so good. I agreed and basically told her that it was my thinking also. The nurse and I also discussed what had gone on when I was at the wound care center and that the measurements by the other visiting nurse were inaccurate. It was sort of ridiculous that the nurse that, though I did trust, I also sometimes had a personality conflict with was the one that had gotten strange measurements. I decided, that from then on, while I was going to listen to her opinions and suggestions I was going to take her measurements with a grain of salt, at least until she was getting them somewhere in the ballpark of what my other healthcare workers were getting.
Once I decided to only somewhat take what one of my nurses said seriously I was able to calm down and focus on what the other people were telling me. I had decided to side with the majority instead of with the one that was telling me scary numbers. All of this was going well for several weeks, until one day when I went back to have another appointment with my surgeon at the wound care center.
Friday, August 17, 2012
What the Heck is Going On?!
My MRI was scheduled for three days after I had the appointment at the wound care center. I was very happy that it was able to be done so quickly. The MRI was a relatively long test but painless. At this point, these tests have become old hat to me so I was not at all nervous about having it done. When the MRI was completed I was told that the doctor that ordered it would have the results in just a couple of days. I also requested that the results be sent to my surgeon so he would be aware of what was happening when he returned. Within a couple days of having the MRI, the doctor that I saw at the wound care center called me with the test results. The doctor told me that the MRI results did not show evidence of osteomyelitis (infection in the bone). I was incredibly happy to hear that because if bone infection were present then it would take even longer for the wound to close not to mention could be painful. After hearing these results, we discussed scheduling an appointment for the following day with my surgeon.
The next day I went into my appointment relieved that my surgeon whom I was incredibly comfortable with had returned. It wasn't that I was uncomfortable with the doctor that was filling in it is just that my surgeon had treated me for so long and had gotten good results so there was a certain comfort level there. At my appointment, my surgeon explained to me that when he saw the MRI results his opinion was different; than that of the other doctor. He felt that their was potentially something still going on and that maybe something inside had caused the wound to reopen, as such he felt that the best option was for him to bring me back into the operating room and look around. I agreed that what he was saying sounded logical and so it was decided that I would either see him the day of the surgery or at the wound care center in a few weeks, whichever came first. The surgery ended up being scheduled for a few weeks later.
The day of the surgery I was not at all nervous or upset about what had happened. I did have my "moment" of "WHY?!" for a little while after the initial appointment with my surgeon but, by the day of the surgery I was no longer upset. I had decided long ago, to try not too get upset about this wound anymore. I made the choice to just take everything as it happened and deal with it the best way we knew how. My surgeon came in and explained again, what he was going to do in the operating room. All of it sounded incredibly familiar. My surgeon said that he was going to go in the wound and clean out any bone that needed to be gotten rid of and then he was going to pack the wound with antibiotic seeds. He then packed the wound with Calcium Alginate and covered it with a dry dressing. The procedure ended up taking less than an hour and afterwords I was able to have some lunch and was sent home with instructions to stay off of it as much as I could for next couple of days.
My visiting nurse came to my house two days after the surgery so that she could change the dressing and monitor me for any sign of infection. She said that everything looked good and that she was not concerned. I continued to have visiting nurses for the next few days and met with my surgeon eight days after the surgery. My surgeon said that he was happy with how it seemed to be progressing and, to keep doing what we were doing as far as using the Calcium Alginate and a dry dressing on top. I have had several visiting nurse visits and have seen my surgeon one additional time since the surgery. I am currently, approximately three weeks post-op and I am being told that my wound is continuing to get smaller in size. I am hopeful that my wound will close again relatively soon so that I can once again fully participate in my life.
The next day I went into my appointment relieved that my surgeon whom I was incredibly comfortable with had returned. It wasn't that I was uncomfortable with the doctor that was filling in it is just that my surgeon had treated me for so long and had gotten good results so there was a certain comfort level there. At my appointment, my surgeon explained to me that when he saw the MRI results his opinion was different; than that of the other doctor. He felt that their was potentially something still going on and that maybe something inside had caused the wound to reopen, as such he felt that the best option was for him to bring me back into the operating room and look around. I agreed that what he was saying sounded logical and so it was decided that I would either see him the day of the surgery or at the wound care center in a few weeks, whichever came first. The surgery ended up being scheduled for a few weeks later.
The day of the surgery I was not at all nervous or upset about what had happened. I did have my "moment" of "WHY?!" for a little while after the initial appointment with my surgeon but, by the day of the surgery I was no longer upset. I had decided long ago, to try not too get upset about this wound anymore. I made the choice to just take everything as it happened and deal with it the best way we knew how. My surgeon came in and explained again, what he was going to do in the operating room. All of it sounded incredibly familiar. My surgeon said that he was going to go in the wound and clean out any bone that needed to be gotten rid of and then he was going to pack the wound with antibiotic seeds. He then packed the wound with Calcium Alginate and covered it with a dry dressing. The procedure ended up taking less than an hour and afterwords I was able to have some lunch and was sent home with instructions to stay off of it as much as I could for next couple of days.
My visiting nurse came to my house two days after the surgery so that she could change the dressing and monitor me for any sign of infection. She said that everything looked good and that she was not concerned. I continued to have visiting nurses for the next few days and met with my surgeon eight days after the surgery. My surgeon said that he was happy with how it seemed to be progressing and, to keep doing what we were doing as far as using the Calcium Alginate and a dry dressing on top. I have had several visiting nurse visits and have seen my surgeon one additional time since the surgery. I am currently, approximately three weeks post-op and I am being told that my wound is continuing to get smaller in size. I am hopeful that my wound will close again relatively soon so that I can once again fully participate in my life.
Tuesday, June 26, 2012
You Have Got to be Kidding Me, My Bubble Burst
Everything had been going well in the six weeks since I was discharged from the Wound Care Center, and in the three weeks that I have been discharged by my visiting nurses. During this time I had continued to monitor the spot where my wound had been so that I would be aware from the beginning if anything changed. Last week I asked my boyfriend to take a picture of it so that I could see what was going on. I got a little nervous when I saw the photo. It seemed to us that a tiny bubble had developed at the same part of the wound that was the slowest to close. My instincts told me to call the doctor right away but for some reason I decided to wait. Why I decided to wait is completely beyond me, especially after all I had been through in the past three years. A few days later when I saw another photo I was less disturbed by it because the bubble seemed to have flattened out. I was calm, yet still felt like maybe it was worth a call to my surgeon. I decided to wait another few days, until I saw a third picture. The third picture wasn't exactly of a bubble but that spot had turned very red, it looked almost like a bright red jellybean, except a whole lot smaller.
I called my surgeon's office to try to get his opinion on what he thought I should do and it turns out that he was out of town. After I had sent messages to my surgeon through his office, I was told that he had said he would be back the following week but that I could go to the Wound Care Center before that if I did not feel comfortable waiting for him to return. He also said that I could also email him the pictures if I wanted his eyes as close to the situation as they could be at that point. Needless to say, I had had enough of waiting and immediately called and set up an appointment for the next morning, and then emailed the pictures to my surgeon. Obviously I was nervous about what was potentially happening but I also had it in my head that sometimes I get a little overly paranoid about this sort of thing and so there was a chance that I would be told that everything was fine when I had my appointment.
When I got there I saw one of the nurses that I had seen before and was very comfortable with and explained to him what was going on and that while I hoped I was just being paranoid I really couldn't be sure that I was. When the wound was looked at I was told that a small part of it had opened again. To say that I was displeased with this news was an understatement to say the least. When the doctor that I was seeing came in, I told her a little bit of the backstory and of what I felt was going on and then she proceeded to take a look. When the wound was probed she said that it had some depth to it. I held it together at that news but was incredibly unhappy. That is when I was told, that my instincts to get it checked were correct and that it was good that I hadn't been complacent. The doctor then told me that we would need to call and get my visiting nurses back and that she wanted me to use Hydrofera Blue again. She also said that although on physical exam she did not appreciate any bone involvement, she did want to order an MRI just to be on the safe side. At this point, being on the safe side is totally okay with me!
My instincts to get in touch with the doctor when I first saw that something may have been weird were correct. The feeling was not of absolute doom and gloom though so I waited. Waiting, though probably not the best decision was one that I myself made and I realize that beating myself up over it is not going to help anything. I am currently waiting for the MRI to be scheduled and hopefully that is able to be done before my surgeon comes back next week. I am now playing the waiting game until we find out more information.
I called my surgeon's office to try to get his opinion on what he thought I should do and it turns out that he was out of town. After I had sent messages to my surgeon through his office, I was told that he had said he would be back the following week but that I could go to the Wound Care Center before that if I did not feel comfortable waiting for him to return. He also said that I could also email him the pictures if I wanted his eyes as close to the situation as they could be at that point. Needless to say, I had had enough of waiting and immediately called and set up an appointment for the next morning, and then emailed the pictures to my surgeon. Obviously I was nervous about what was potentially happening but I also had it in my head that sometimes I get a little overly paranoid about this sort of thing and so there was a chance that I would be told that everything was fine when I had my appointment.
When I got there I saw one of the nurses that I had seen before and was very comfortable with and explained to him what was going on and that while I hoped I was just being paranoid I really couldn't be sure that I was. When the wound was looked at I was told that a small part of it had opened again. To say that I was displeased with this news was an understatement to say the least. When the doctor that I was seeing came in, I told her a little bit of the backstory and of what I felt was going on and then she proceeded to take a look. When the wound was probed she said that it had some depth to it. I held it together at that news but was incredibly unhappy. That is when I was told, that my instincts to get it checked were correct and that it was good that I hadn't been complacent. The doctor then told me that we would need to call and get my visiting nurses back and that she wanted me to use Hydrofera Blue again. She also said that although on physical exam she did not appreciate any bone involvement, she did want to order an MRI just to be on the safe side. At this point, being on the safe side is totally okay with me!
My instincts to get in touch with the doctor when I first saw that something may have been weird were correct. The feeling was not of absolute doom and gloom though so I waited. Waiting, though probably not the best decision was one that I myself made and I realize that beating myself up over it is not going to help anything. I am currently waiting for the MRI to be scheduled and hopefully that is able to be done before my surgeon comes back next week. I am now playing the waiting game until we find out more information.
Friday, June 22, 2012
Quite an Adjustment
Visiting nurses continued to come to my home for three weeks after I had been discharged from the Wound Care Center by my surgeon. They came to monitor the wound and ensure that it continued to do well even though I was starting to get back to my life and be up in my wheelchair on a more regular basis. It was very strange to go from having the wound be looked at three times a week to suddenly having someone monitor it only once a week. I was very happy that I had finally reached that point but, I had a difficult time trusting that I really was okay. The last visiting nurse visit was really difficult because I did not feel that I was ready to be discharged. My nurse then said that if I weren't really okay (physically) that she would not discharge me. She also tried to reassure me with the fact that I had been taught what to be aware of, and that I also still had both of my nurses phone numbers and of course I could get in touch with the surgeon if I really felt that things had gotten ugly again.
The first week that I didn't have any nursing visits was the strangest thing ever. I had to try to figure out how to get out of the patient mentality. I was a wound care patient for three years one month and approximately three weeks and during that time I do not feel like I had very many of my own choices. Obviously, nothing could be done without my consent so I was able to decide some things. I guess I didn't actually HAVE to listen to all of the directions I was given but I had done everything that was expected. As such, I had not really decided anything on my own regarding what I could or couldn't do or when I could do it. These adjustments were very difficult emotionally. It seems I had trusted my doctors and nurses so much that in the process I had forgotten how to trust myself. During this time I did reach out to one of my Twitter followers and was basically told that I would adjust. That it would just take some time and in the meantime I should take care of and nurture myself. That's pretty solid advice, I just needed to figure out how to take it.
As I said, I was also having trouble getting out of the patient mindset. Once I began this blog it seems that my brain was awoken and I actually craved knowledge about what was happening physically and how things work and also about patient's experiences. I figured that I could maybe pick up even more information based on what others had learned. While I was craving this knowledge, a book called 'The Take Charge Patient" by Martine Ehrenclou, M.A. was published which I downloaded a couple of days after it was released. The book was absolutely amazing. The author chose to write the book to teach current and future patients the importance of being proactive about their medical care. She accomplished writing this book, using both her own personal experiences and through interviews she conducted with patients, their families and with healthcare professionals. I cannot get into all of the spectacular information here, purely because there was so much of it but I am going to try to give a general overview of what I have learned.
Being a take charge patient begins with trusting your gut. The book explains that it is crucial to find a doctor that you can trust on a "gut level" because if you are seeing a doctor that you do not trust you will not take their advice. This made complete sense to me in a way, because looking back I realized that I never really questioned any of the advice that I was given by the surgeon that I did completely trust. Whereas, while I did follow the previous doctor's advice I did question her suggestions, I just did not have enough confidence in myself to question her directly. When I did question her suggestions I mostly did it in a critical "I don't think so" way and it was always to someone else while I was venting my frustration. The book encourages readers to pay attention to their gut feelings when deciding whether or not to see a particular physician.
The book also explains that patients need to be proactive about what is going on with their bodies so that they can be an active member of their healthcare team. It is suggested that patients gather and keep for themselves their medical record and that they provide it to any specialists that they see so that the information is as accurate as possible. That seems like a very good suggestion although I cannot say that I have ever done it. It may have been a good idea though because I the first visit to the wound care center was of course full of me giving the history of the wound and what had been done for it up until that point. I explained the best I could but admittedly some of the details did end up getting lost in the shuffle.
The author showed through her own lengthy medical ordeal and ultimate healing that she herself had to be persistent in finding both an accurate diagnosis and a physician that she trusted. Persistence is the key that stood out to me. During the two plus years that I was being treated at the first wound care center, I never once bothered to seek out another opinion or to research anything on my own, to either prove or disprove what my doctors and nurses were telling me. Obviously it is easy to point out all of the errors and things that could have and should have been done differently once the puzzle is completed but looking back if I had sought another opinion even after the first year my ordeal may not have been as lengthy as it was.
The Take Charge Patient is all about empowerment. It tells the reader that they know their bodies best and that as such they need to "speak up, ask questions and be assertive." That you, as the patient have not just the right but the responsibility to gather information and act as a member of your medical care team. This book is one that although I wish it were available to me three years ago, I do not know that I would have gained so much from it without having gone through this journey. I believe that in order for me to have fully appreciated this book I needed to have first hand experience on both ends of the medical care spectrum. From seeing a physician that I initially had a bad feeling about through all of the annoyances that went along with blindly following her instructions. To the great experience I had with a surgeon that I instantly had a good feeling about. One that I felt listened to me and that seemed to be willing to work with me instead of dictating what would happen.
Although, I have been discharged by both the wound care center and from visiting nurse visits I am still very much in tune with my body. This may border on paranoia occasionally but after this long I don't think I can be blamed for being so incredibly diligent about making sure that the wound stays closed and that I really do all I can to prevent one from happening again in the future. This ordeal was not anything that I would wish on my worst enemy but the awesome feeling of joy that it is done and of the self confidence I have gained is something that cannot be described. While I did get a job, I am still currently looking for something else that will hopefully be a more consistent position. I feel that if I keep a positive outlook that eventually the right opportunity will present itself to me.
The first week that I didn't have any nursing visits was the strangest thing ever. I had to try to figure out how to get out of the patient mentality. I was a wound care patient for three years one month and approximately three weeks and during that time I do not feel like I had very many of my own choices. Obviously, nothing could be done without my consent so I was able to decide some things. I guess I didn't actually HAVE to listen to all of the directions I was given but I had done everything that was expected. As such, I had not really decided anything on my own regarding what I could or couldn't do or when I could do it. These adjustments were very difficult emotionally. It seems I had trusted my doctors and nurses so much that in the process I had forgotten how to trust myself. During this time I did reach out to one of my Twitter followers and was basically told that I would adjust. That it would just take some time and in the meantime I should take care of and nurture myself. That's pretty solid advice, I just needed to figure out how to take it.
As I said, I was also having trouble getting out of the patient mindset. Once I began this blog it seems that my brain was awoken and I actually craved knowledge about what was happening physically and how things work and also about patient's experiences. I figured that I could maybe pick up even more information based on what others had learned. While I was craving this knowledge, a book called 'The Take Charge Patient" by Martine Ehrenclou, M.A. was published which I downloaded a couple of days after it was released. The book was absolutely amazing. The author chose to write the book to teach current and future patients the importance of being proactive about their medical care. She accomplished writing this book, using both her own personal experiences and through interviews she conducted with patients, their families and with healthcare professionals. I cannot get into all of the spectacular information here, purely because there was so much of it but I am going to try to give a general overview of what I have learned.
Being a take charge patient begins with trusting your gut. The book explains that it is crucial to find a doctor that you can trust on a "gut level" because if you are seeing a doctor that you do not trust you will not take their advice. This made complete sense to me in a way, because looking back I realized that I never really questioned any of the advice that I was given by the surgeon that I did completely trust. Whereas, while I did follow the previous doctor's advice I did question her suggestions, I just did not have enough confidence in myself to question her directly. When I did question her suggestions I mostly did it in a critical "I don't think so" way and it was always to someone else while I was venting my frustration. The book encourages readers to pay attention to their gut feelings when deciding whether or not to see a particular physician.
The book also explains that patients need to be proactive about what is going on with their bodies so that they can be an active member of their healthcare team. It is suggested that patients gather and keep for themselves their medical record and that they provide it to any specialists that they see so that the information is as accurate as possible. That seems like a very good suggestion although I cannot say that I have ever done it. It may have been a good idea though because I the first visit to the wound care center was of course full of me giving the history of the wound and what had been done for it up until that point. I explained the best I could but admittedly some of the details did end up getting lost in the shuffle.
The author showed through her own lengthy medical ordeal and ultimate healing that she herself had to be persistent in finding both an accurate diagnosis and a physician that she trusted. Persistence is the key that stood out to me. During the two plus years that I was being treated at the first wound care center, I never once bothered to seek out another opinion or to research anything on my own, to either prove or disprove what my doctors and nurses were telling me. Obviously it is easy to point out all of the errors and things that could have and should have been done differently once the puzzle is completed but looking back if I had sought another opinion even after the first year my ordeal may not have been as lengthy as it was.
The Take Charge Patient is all about empowerment. It tells the reader that they know their bodies best and that as such they need to "speak up, ask questions and be assertive." That you, as the patient have not just the right but the responsibility to gather information and act as a member of your medical care team. This book is one that although I wish it were available to me three years ago, I do not know that I would have gained so much from it without having gone through this journey. I believe that in order for me to have fully appreciated this book I needed to have first hand experience on both ends of the medical care spectrum. From seeing a physician that I initially had a bad feeling about through all of the annoyances that went along with blindly following her instructions. To the great experience I had with a surgeon that I instantly had a good feeling about. One that I felt listened to me and that seemed to be willing to work with me instead of dictating what would happen.
Although, I have been discharged by both the wound care center and from visiting nurse visits I am still very much in tune with my body. This may border on paranoia occasionally but after this long I don't think I can be blamed for being so incredibly diligent about making sure that the wound stays closed and that I really do all I can to prevent one from happening again in the future. This ordeal was not anything that I would wish on my worst enemy but the awesome feeling of joy that it is done and of the self confidence I have gained is something that cannot be described. While I did get a job, I am still currently looking for something else that will hopefully be a more consistent position. I feel that if I keep a positive outlook that eventually the right opportunity will present itself to me.
Saturday, June 2, 2012
Whoever Said 'change is good' Failed to Mention Change is Hard
Although I was very unhappy with what I saw in the picture I apparently sounded remarkably calm on the voicemail that I left my nurse. I told her that the wound was open again but to me it seemed like the open part was very small and as such I was just calling to give her a heads up about what she would see a few days later. It wasn't until the next day that she returned my call and explained that when she listened to my message she decided not to call me right then because, I did not sound overly upset. I then reiterated that what I saw was very small but that I was not upset about it that in reality I had just gotten really sad about what I was referring to as yet another setback.
The nurse then told me that she was still going to come to my home two days later to assess the situation, but that based on what I was telling her she was not concerned at all. Waiting those two days felt very strange, especially considering that in the past I had always erred on the side of caution and kept my surgeon updated whenever things seemed to be going in the wrong direction. Knowing what I knew about how quickly it had closed previously, I decided to try to keep calm about it until my nurse could really tell me what was going on and what she thought we should do about it.
When my nurse arrived she was still very positive that things were going well so she came in with a really positive attitude and sat and talked to me for a bit before even looking at the wound. When she finally looked at it she said that yes it was in fact open but that it was nothing to be worried about at all and that she was so certain it was fine that we did not need to get in touch with the surgeon. The nurse also decided that being that it was such a tiny portion that had opened and it did not have any drainage it also did not need to be covered and that my next visit would not be moved forward so it would be another week until a nurse would return. In the meantime I was told that I could be up more often and that I could still shower whenever I wanted to.
All of these things I was being told sounded good, yet odd. On one hand I was upset that it had opened again, yet I was encouraged by the fact that my nurse was not worried enough to even cover it. The situation felt odd because, I hadn't seen my surgeon that week and was not used to not needing to see him, especially when the wound had suddenly changed how it was doing.
Being that my nurse told me that I could be up even though it was not doing as well as I had hoped it would, I had decided that my life had been stagnant for too long and it needed to move forward. At that point I determined that I needed to start looking for a job regardless of how my wound was going. Hopefully, it would just continue to keep healing stronger each time that it closed while I began my job search.
The nurse then told me that she was still going to come to my home two days later to assess the situation, but that based on what I was telling her she was not concerned at all. Waiting those two days felt very strange, especially considering that in the past I had always erred on the side of caution and kept my surgeon updated whenever things seemed to be going in the wrong direction. Knowing what I knew about how quickly it had closed previously, I decided to try to keep calm about it until my nurse could really tell me what was going on and what she thought we should do about it.
When my nurse arrived she was still very positive that things were going well so she came in with a really positive attitude and sat and talked to me for a bit before even looking at the wound. When she finally looked at it she said that yes it was in fact open but that it was nothing to be worried about at all and that she was so certain it was fine that we did not need to get in touch with the surgeon. The nurse also decided that being that it was such a tiny portion that had opened and it did not have any drainage it also did not need to be covered and that my next visit would not be moved forward so it would be another week until a nurse would return. In the meantime I was told that I could be up more often and that I could still shower whenever I wanted to.
All of these things I was being told sounded good, yet odd. On one hand I was upset that it had opened again, yet I was encouraged by the fact that my nurse was not worried enough to even cover it. The situation felt odd because, I hadn't seen my surgeon that week and was not used to not needing to see him, especially when the wound had suddenly changed how it was doing.
Being that my nurse told me that I could be up even though it was not doing as well as I had hoped it would, I had decided that my life had been stagnant for too long and it needed to move forward. At that point I determined that I needed to start looking for a job regardless of how my wound was going. Hopefully, it would just continue to keep healing stronger each time that it closed while I began my job search.
Friday, May 25, 2012
Stop the Ride I Wanna Get Off
Two days later, my visiting nurse and I met at the wound care center so that she could finally meet the surgeon she had heard so many good things about. When we first got there I could tell that the nurse from the wound care center was a little worried that my nurse was with me. I can only assume that that is because a visiting nurse would typically only show up with a patient when things are not going well. My visiting nurse then explained that at her last visit that she had said it was closed.
After that, I personally do not remember anything else that happened at the appointment. My visiting nurse, however, filled me in on the rest of the visit when I spoke to her on the phone the next day. She said that she met the surgeon and that he poked at the wound several times in order to make sure it was closed. After which she told the surgeon that she wanted to actually hear him say the words "it's done." He apparently said it, although I have absolutely no recollection of those words or anything similar being said.
Usually, I remember even the smallest details about what goes on at my appointments, so I think it's weird that I do not know anything that happened. My guess is that I do not remember because I already knew it was good news even before the day of the appointment, so I sort of went into the appointment in a fog.
I know I left the appointment very happy but was still sort of in shock that it was really over. When I left my appointment I called my parents to tell them. Me being the way I am, I phrased it to my father as, "does the word discharge mean anything to you?"
My dad, being just as snarky and smart-assed as I am replied back with, "well if it's discharge coming from your wound eww gross, but if you mean discharged from the doctor then yay that's awesome!"
I laughed and told him the good news and left it at that. When I got home I must have still been shocked because it wasn't until about four hours later that I actually looked at my boyfriend and said, "so wait a sec, am I actually done? Like finished, as in no more wound."
He said, "yep, you're done. All better!"
I was excited to hear that but it still hadn't had time to sink in yet. It was about six hours after my appointment that I finally came to the realization that this journey had finally reached a conclusion. When I realized it was over, my reaction, can only be described as the 'ugly cry.' You know, the one where you have snot all over your face and you are crying so hard there is no sound? Yeah, that one. I believe this extreme reaction was due to the fact that two weeks before, the wound being closed was completely unexpected but this time I knew that the wound was closed based on what my visiting nurse had told me.
Based on the visiting nurse company's policy, I knew I would still have a few more nursing visits at my home just to make sure that everything continued to go well. It was a few days before my nurse was due to come that I started to get that weird feeling in my gut again. I wanted to believe that I was just being paranoid but I still asked my boyfriend to take a picture of it to show me. Moments after seeing the photograph, I was leaving my visiting nurse a voicemail.
After that, I personally do not remember anything else that happened at the appointment. My visiting nurse, however, filled me in on the rest of the visit when I spoke to her on the phone the next day. She said that she met the surgeon and that he poked at the wound several times in order to make sure it was closed. After which she told the surgeon that she wanted to actually hear him say the words "it's done." He apparently said it, although I have absolutely no recollection of those words or anything similar being said.
Usually, I remember even the smallest details about what goes on at my appointments, so I think it's weird that I do not know anything that happened. My guess is that I do not remember because I already knew it was good news even before the day of the appointment, so I sort of went into the appointment in a fog.
I know I left the appointment very happy but was still sort of in shock that it was really over. When I left my appointment I called my parents to tell them. Me being the way I am, I phrased it to my father as, "does the word discharge mean anything to you?"
My dad, being just as snarky and smart-assed as I am replied back with, "well if it's discharge coming from your wound eww gross, but if you mean discharged from the doctor then yay that's awesome!"
I laughed and told him the good news and left it at that. When I got home I must have still been shocked because it wasn't until about four hours later that I actually looked at my boyfriend and said, "so wait a sec, am I actually done? Like finished, as in no more wound."
He said, "yep, you're done. All better!"
I was excited to hear that but it still hadn't had time to sink in yet. It was about six hours after my appointment that I finally came to the realization that this journey had finally reached a conclusion. When I realized it was over, my reaction, can only be described as the 'ugly cry.' You know, the one where you have snot all over your face and you are crying so hard there is no sound? Yeah, that one. I believe this extreme reaction was due to the fact that two weeks before, the wound being closed was completely unexpected but this time I knew that the wound was closed based on what my visiting nurse had told me.
Based on the visiting nurse company's policy, I knew I would still have a few more nursing visits at my home just to make sure that everything continued to go well. It was a few days before my nurse was due to come that I started to get that weird feeling in my gut again. I wanted to believe that I was just being paranoid but I still asked my boyfriend to take a picture of it to show me. Moments after seeing the photograph, I was leaving my visiting nurse a voicemail.
Tuesday, May 22, 2012
My Life, the Roller Coaster
I spent the next couple of days stressed out about my wound that had opened and stayed off of it as much as possible. When my nurse came back a couple of days later she said that it was doing very well and seemed to be closing on its own. While I was very happy to be hearing this news I tried to temper my excitement, because of the major let down of a few days before.
During the next couple of days I put myself on strict bed rest hoping that staying off of the wound would help. Two days later when my nurse came back to check on the wound's status she said, 'I am going to call that healed'. She also told me that I could start getting out of bed more often and could even shower over the weekend if I wanted to.
Although she did decide to cover the wound for the weekend it did not really need it. It was a couple of days later that I called my nurse to make sure she really thought that getting it wet was okay. She told me that I could shower, but that she wanted me to take the dressing off before I did. She also wanted me to check the dressing for drainage so I could tell her about it the next day. Admittedly, I was nervous about taking the dressing off and especially about checking for drainage. I didn't think that I would see any drainage but I was still hesitant to look. I knew that my nurse would need to know the information so I took a deep breath and looked at the dressing. I didn't see any drainage whatsoever! I proceeded to take my shower and then decided to stay up in my wheelchair for a little while.
The next morning when my nurse came back, I was a little nervous about what she would see. I explained to her I was nervous but that I hadn't seen drainage the day before so I was pretty sure that everything was still going well. When she looked at it she said that it was still closed and it was fine. My nurse was at that point more excited than I was. Although I was happy that it had survived the weekend I knew that it was still sensitive and so I was trying to temper my excitement. My nurse then asked me if she could come to my next appointment at the wound care center, so that she could meet the surgeon that seemed to have so much common sense. I had no problem with them meeting, so we arranged to meet at my appointment two days later.
During the next couple of days I put myself on strict bed rest hoping that staying off of the wound would help. Two days later when my nurse came back to check on the wound's status she said, 'I am going to call that healed'. She also told me that I could start getting out of bed more often and could even shower over the weekend if I wanted to.
Although she did decide to cover the wound for the weekend it did not really need it. It was a couple of days later that I called my nurse to make sure she really thought that getting it wet was okay. She told me that I could shower, but that she wanted me to take the dressing off before I did. She also wanted me to check the dressing for drainage so I could tell her about it the next day. Admittedly, I was nervous about taking the dressing off and especially about checking for drainage. I didn't think that I would see any drainage but I was still hesitant to look. I knew that my nurse would need to know the information so I took a deep breath and looked at the dressing. I didn't see any drainage whatsoever! I proceeded to take my shower and then decided to stay up in my wheelchair for a little while.
The next morning when my nurse came back, I was a little nervous about what she would see. I explained to her I was nervous but that I hadn't seen drainage the day before so I was pretty sure that everything was still going well. When she looked at it she said that it was still closed and it was fine. My nurse was at that point more excited than I was. Although I was happy that it had survived the weekend I knew that it was still sensitive and so I was trying to temper my excitement. My nurse then asked me if she could come to my next appointment at the wound care center, so that she could meet the surgeon that seemed to have so much common sense. I had no problem with them meeting, so we arranged to meet at my appointment two days later.
Thursday, May 17, 2012
My Gut Knows
As soon as my boyfriend and I got back from dinner I asked him to check the wound to see if it was okay. I also asked him to take a picture of it so that I could see it as well. When he saw it he said that it 'looked okay'. When he showed me the picture, my opinion was drastically different. Instead of seeing scar tissue as I had seen after my appointment with my surgeon, I saw that it had opened. It was not the entire wound that opened but the part that had was enough to completely freak me out.
My boyfriend tried to calm me down and get me to realize that the open part was very tiny and would most likely be okay soon. His saying that got him absolutely nowhere. I was already way too emotional to listen to reason. My boyfriend knows that when I am that upset, the best thing to do is to stop trying to get through to me because it isn't going to work anyway. He went home after suggesting that I try to go to sleep. I did attempt to sleep that night but was completely unsuccessful. I could not get myself to calm down in the least, regardless of the fact that I knew the visiting nurse that I completely trusted and had become very close with was going to come the following day.
She called me the next morning and was walking into my room about an hour after we hung up. When she came in she instantly said 'uh oh, what's wrong'? That was based on the look on my face. I explained to her the way I had felt at dinner and what I had seen in the pictures my boyfriend had taken. When she looked at the wound, she did not say a word. After knowing her for two and a half years, I had figured out that her being silent could not mean anything good. I asked her what had happened and she said that yes it was opened but that I shouldn't really freak out. We called and left a message for my surgeon to call her so that she could tell him what was going on. In the meantime she covered the wound with a dry dressing and told me that she would call me once she had spoken to my surgeon.
As promised, she called me back a few hours later to tell me what my surgeon said about the situation. She told me that he had said her covering it the way she did was absolutely fine and that I was still able to take showers. I was surprised he had said that I was able to do that being that it had apparently closed during the time I was asked to refrain from showering. My nurse went on to say that my surgeon was very calm about the whole thing and did not seem upset and that if he really thought something were wrong he would have asked me to keep it dry. Although, all she was saying made complete sense I had been seeing my surgeon for practically a year and had never seen him anything other than completely steady.
During the entire three years that I had the wound I had only gotten marginally upset about setbacks. This time was completely different. I think it was different because this setback came just after hearing the best news I had ever heard about the wound. I spent the next couple of days in bed not doing anything, including sleeping. I was entirely too upset to calm down and go to sleep. That made for a very long weekend, while I waited for my Monday nursing visit. When the nurse arrived she had already been brought up to speed on what had happened and how I was coping (I wasn't). She examined the wound and explained to me that it was really nothing to be that upset about. Shortly thereafter, she figured out that nothing she said was going to help so she showed me another photograph of the wound and then instead of just telling me measurements she actually showed me on a ruler just how small it was. At that point I realized that it was not nearly as much of a problem as I had feared it was.
My boyfriend tried to calm me down and get me to realize that the open part was very tiny and would most likely be okay soon. His saying that got him absolutely nowhere. I was already way too emotional to listen to reason. My boyfriend knows that when I am that upset, the best thing to do is to stop trying to get through to me because it isn't going to work anyway. He went home after suggesting that I try to go to sleep. I did attempt to sleep that night but was completely unsuccessful. I could not get myself to calm down in the least, regardless of the fact that I knew the visiting nurse that I completely trusted and had become very close with was going to come the following day.
She called me the next morning and was walking into my room about an hour after we hung up. When she came in she instantly said 'uh oh, what's wrong'? That was based on the look on my face. I explained to her the way I had felt at dinner and what I had seen in the pictures my boyfriend had taken. When she looked at the wound, she did not say a word. After knowing her for two and a half years, I had figured out that her being silent could not mean anything good. I asked her what had happened and she said that yes it was opened but that I shouldn't really freak out. We called and left a message for my surgeon to call her so that she could tell him what was going on. In the meantime she covered the wound with a dry dressing and told me that she would call me once she had spoken to my surgeon.
As promised, she called me back a few hours later to tell me what my surgeon said about the situation. She told me that he had said her covering it the way she did was absolutely fine and that I was still able to take showers. I was surprised he had said that I was able to do that being that it had apparently closed during the time I was asked to refrain from showering. My nurse went on to say that my surgeon was very calm about the whole thing and did not seem upset and that if he really thought something were wrong he would have asked me to keep it dry. Although, all she was saying made complete sense I had been seeing my surgeon for practically a year and had never seen him anything other than completely steady.
During the entire three years that I had the wound I had only gotten marginally upset about setbacks. This time was completely different. I think it was different because this setback came just after hearing the best news I had ever heard about the wound. I spent the next couple of days in bed not doing anything, including sleeping. I was entirely too upset to calm down and go to sleep. That made for a very long weekend, while I waited for my Monday nursing visit. When the nurse arrived she had already been brought up to speed on what had happened and how I was coping (I wasn't). She examined the wound and explained to me that it was really nothing to be that upset about. Shortly thereafter, she figured out that nothing she said was going to help so she showed me another photograph of the wound and then instead of just telling me measurements she actually showed me on a ruler just how small it was. At that point I realized that it was not nearly as much of a problem as I had feared it was.
Tuesday, May 15, 2012
Is This The End?
The two weeks I spent waiting to see my surgeon were stressful but only because I was nervous. My visiting nurses kept saying that the wound was doing very well. While, I was very happy with what my nurses were saying I still wanted to hear it from my surgeon directly.
Finally, the day of my appointment arrived and I was in an incredibly good mood. I figured that I would give positive thinking a shot. When my surgeon came in the room and examined the wound he was super happy with what he saw. He then explained to me that it had no more depth and that it was basically done. That moment was sort of surreal, here I was in an exam room exactly three years and one month after the wound was first discovered and I was finally being told that I could shower whenever I wanted, instead of only right before nursing visits and, that we could start thinking about ending the nursing visits all together. While I was so incredibly happy to hear this news it did catch me off guard. While my nurses had been saying very good things they had not said that it was closed at the prior visit, just three days before the appointment with my surgeon. My surgeon said that I could go home and shower right then if I actually wanted to but that I should come back in two or three weeks so that he could make sure things were still going well. I made a follow-up appointment with him for two weeks later and left in the best mood ever.
I was able to hold it together just until my boyfriend and I got to the car, that is when I lost it and three years of tears started to flow. As soon as I got in the car I grabbed my cell phone so I could begin to tell those people that had been the most supportive through the entire ordeal that we could all breathe enormous sighs of relief. The two people that I knew without a doubt needed to be told in person were my parents. So after a quick stop to get coffee and snacks for everyone, my boyfriend and I went to my house to share the good news. When my parents first saw me crying, they initially thought that things had gone very wrong, until a big goofy grin appeared on my face. Soon, I was not the only one in tears.
I spent the rest of that day and the next day laying low and not really doing much of anything. Mostly, because I was not used to being able to do much and also because I was sort of nervous that it had just filled in, was left uncovered for the first time and that it was still probably going to be sensitive. After doing hardly anything for the day and a half following my appointment, I was ready to get up and go do something. My boyfriend and I talked it over and decided that we would go out to dinner. I got ready to go and for one of only a handful of times in the past three years, I was wearing jeans!
I was trying to enjoy one of my first times out that was not due to a special occasion, but I was sort of nervous that it was too soon. My boyfriend kept trying to assure me that I was okay and I believed him, until my gut said otherwise. All of a sudden I got a very creepy feeling in my gut that something wasn't right. This was not based on feeling any drainage or anything more than a little discomfort, it was just a huge knot in my stomach that would not go away. Again, my boyfriend tried to assure me that things were fine and while I wanted to believe him, he is not in my gut, feeling the way I felt. As we were leaving the restaurant, he assured me that he would check the wound when we got home.
Finally, the day of my appointment arrived and I was in an incredibly good mood. I figured that I would give positive thinking a shot. When my surgeon came in the room and examined the wound he was super happy with what he saw. He then explained to me that it had no more depth and that it was basically done. That moment was sort of surreal, here I was in an exam room exactly three years and one month after the wound was first discovered and I was finally being told that I could shower whenever I wanted, instead of only right before nursing visits and, that we could start thinking about ending the nursing visits all together. While I was so incredibly happy to hear this news it did catch me off guard. While my nurses had been saying very good things they had not said that it was closed at the prior visit, just three days before the appointment with my surgeon. My surgeon said that I could go home and shower right then if I actually wanted to but that I should come back in two or three weeks so that he could make sure things were still going well. I made a follow-up appointment with him for two weeks later and left in the best mood ever.
I was able to hold it together just until my boyfriend and I got to the car, that is when I lost it and three years of tears started to flow. As soon as I got in the car I grabbed my cell phone so I could begin to tell those people that had been the most supportive through the entire ordeal that we could all breathe enormous sighs of relief. The two people that I knew without a doubt needed to be told in person were my parents. So after a quick stop to get coffee and snacks for everyone, my boyfriend and I went to my house to share the good news. When my parents first saw me crying, they initially thought that things had gone very wrong, until a big goofy grin appeared on my face. Soon, I was not the only one in tears.
I spent the rest of that day and the next day laying low and not really doing much of anything. Mostly, because I was not used to being able to do much and also because I was sort of nervous that it had just filled in, was left uncovered for the first time and that it was still probably going to be sensitive. After doing hardly anything for the day and a half following my appointment, I was ready to get up and go do something. My boyfriend and I talked it over and decided that we would go out to dinner. I got ready to go and for one of only a handful of times in the past three years, I was wearing jeans!
I was trying to enjoy one of my first times out that was not due to a special occasion, but I was sort of nervous that it was too soon. My boyfriend kept trying to assure me that I was okay and I believed him, until my gut said otherwise. All of a sudden I got a very creepy feeling in my gut that something wasn't right. This was not based on feeling any drainage or anything more than a little discomfort, it was just a huge knot in my stomach that would not go away. Again, my boyfriend tried to assure me that things were fine and while I wanted to believe him, he is not in my gut, feeling the way I felt. As we were leaving the restaurant, he assured me that he would check the wound when we got home.
Wednesday, May 9, 2012
Making Progress?
When my nurse saw that the stitches were loosening, I was already reaching for my phone to get in touch with my surgeon before she even had a chance to say that it did not look like anything bad was happening. I called him and explained that while there was no drainage, the stitches were very loose and did not seem to be holding the wound closed anymore. My surgeon said that my nurse should just cover it with a dry dressing and that I should just come to my regular appointment that was scheduled for two days later. Waiting, did not feel like something I was willing to do so I called the wound care center and made arrangements to see him first thing the following morning.
Aside from being worried about the wound in general, the other reason I wanted to see him the next day was because he had previously said that I could go out that evening. I wanted to make sure that being up for several hours was not going to cause any major problems. When he examined the wound he decided to remove the stitches. When he took them out he explained to me that while the edges were not yet closed it was very small and that I could still go out that evening. I was very happy that he said I was still able to go, I just hoped that I would be able to forget about things for a few hours and enjoy myself. I did decide to go on with my plans, though at first I was very much distracted by the sutures not having fully done their job.
I saw the surgeon again the following week and he was incredibly pleased with how the wound looked. He said, that it was doing everything correctly and showed no signs of anything going wrong. I was thrilled to hear that it was now being referred to as very small and not very deep at all. The surgeon was going to be away from the wound care center the following week, so while I was nervous about skipping a week there was nothing I could do about it so I made an appointment for two weeks later.
Although, I knew that everyone was pleased with the way my wound was progressing I could not get a pattern out of my head. It seems crazy, but of the five times that my surgeon had said surgery was needed at least three of them were decided after having skipped over a week or two. Therefore, I was rather on edge while I waited for my next appointment.
Aside from being worried about the wound in general, the other reason I wanted to see him the next day was because he had previously said that I could go out that evening. I wanted to make sure that being up for several hours was not going to cause any major problems. When he examined the wound he decided to remove the stitches. When he took them out he explained to me that while the edges were not yet closed it was very small and that I could still go out that evening. I was very happy that he said I was still able to go, I just hoped that I would be able to forget about things for a few hours and enjoy myself. I did decide to go on with my plans, though at first I was very much distracted by the sutures not having fully done their job.
I saw the surgeon again the following week and he was incredibly pleased with how the wound looked. He said, that it was doing everything correctly and showed no signs of anything going wrong. I was thrilled to hear that it was now being referred to as very small and not very deep at all. The surgeon was going to be away from the wound care center the following week, so while I was nervous about skipping a week there was nothing I could do about it so I made an appointment for two weeks later.
Although, I knew that everyone was pleased with the way my wound was progressing I could not get a pattern out of my head. It seems crazy, but of the five times that my surgeon had said surgery was needed at least three of them were decided after having skipped over a week or two. Therefore, I was rather on edge while I waited for my next appointment.
Wednesday, May 2, 2012
A New Idea
A few days after my appointment with the surgeon someone from his office called me to set up the surgery. It was scheduled for only one week later. The morning of the surgery I woke up in an incredibly good mood considering that just a few hours later I would be laying on an operating table. When I got to the hospital, I met with my surgeon who explained to me what his game plan was going to be. He was first going to get rid of all non-viable tissue, including a small portion of the bone. Then he was going to place antibiotic seeds inside the wound cavity. His entire plan up till that point was very familiar to me being that he had done all of that previously. He then explained, that he was going to use something called GraftJacket inside the wound. Then he hopefully would just be able to suture the edges together.
GraftJacket is made of human dermal (skin) tissue components. Its purpose is as a repair matrix that will then rapidly be converted to the patient's own tissue by quickly renewing blood, cellular and nutrient activity throughout the matrix. Over time, the tissue graft aids in the repair of the wound and is replaced by tissue like the patient's own. As he explained it to me it would ideally help to fill in the tunnel of my wound.
All of this sounded like it was a good plan and again I went into the operating room with no hesitation in the least. The surgery happened exactly as the surgeon had planned for it to go and approximately an hour later I was being wheeled into the recovery room, aware of everything that had gone on and having heard, that at least for the meantime the wound was sutured closed. I was at home feeling very well within just a couple hours of the end of the surgery. When I got home, I called my nurse, just like I had said I would do and told her what the surgeon had done and what the following visits wound care orders were. All the surgeon wanted done was for the dressing to be looked at and if it was still intact and clean that it was to be left alone. The nurse came two days after the surgery for all of five minutes, the dressing was clean and dry so she did not change it. That was totally fine with me, although it did end up being changed the next day because it had gotten soiled. When the nurse changed the dressing she said that it looked great and that everything seemed to be fine. I was so incredibly happy to hear that, yet I was still trying to remain only cautiously optimistic.
Six days after the surgery, I was back at my regular wound care appointment so that my surgeon could make sure that everything was healing nicely. He said that it looked great but that he wanted to leave the stitches in place for another week, just to give it more time. By then I didn't really care what he said had to be done or not be done, I was just incredibly glad that things seemed to be looking in such a positive direction.
Things were going really well and I was doing my best to stay off of the wound as much as possible, as a matter of fact I had only been up on it to ride home from the surgery itself and to go to and from that wound care appointment. That was actually harder to do than it had been in the past, just because I felt so incredibly well. I was determined that I was not going to sabotage the healing process so I did not get up unless it was absolutely necessary.
As sometimes happens, just as things seem to be going really well, WHAM you get smacked upside the head with a dose of reality. My reality came about twelve days post-op, when I woke up very early in the morning with this weird emotional 'something isn't right' feeling. While I was worried I already knew that my visiting nurse was going to be arriving at my house within a few hours. Before I had even fully explained to her how I thought things were going, she had taken off the dressing and was making an 'uhoh' sound. It turns out that the stitches were pulling and didn't seem to be holding the wound closed. To take a quote from Yogi Berra, 'this was like deja vu all over again'.
GraftJacket is made of human dermal (skin) tissue components. Its purpose is as a repair matrix that will then rapidly be converted to the patient's own tissue by quickly renewing blood, cellular and nutrient activity throughout the matrix. Over time, the tissue graft aids in the repair of the wound and is replaced by tissue like the patient's own. As he explained it to me it would ideally help to fill in the tunnel of my wound.
All of this sounded like it was a good plan and again I went into the operating room with no hesitation in the least. The surgery happened exactly as the surgeon had planned for it to go and approximately an hour later I was being wheeled into the recovery room, aware of everything that had gone on and having heard, that at least for the meantime the wound was sutured closed. I was at home feeling very well within just a couple hours of the end of the surgery. When I got home, I called my nurse, just like I had said I would do and told her what the surgeon had done and what the following visits wound care orders were. All the surgeon wanted done was for the dressing to be looked at and if it was still intact and clean that it was to be left alone. The nurse came two days after the surgery for all of five minutes, the dressing was clean and dry so she did not change it. That was totally fine with me, although it did end up being changed the next day because it had gotten soiled. When the nurse changed the dressing she said that it looked great and that everything seemed to be fine. I was so incredibly happy to hear that, yet I was still trying to remain only cautiously optimistic.
Six days after the surgery, I was back at my regular wound care appointment so that my surgeon could make sure that everything was healing nicely. He said that it looked great but that he wanted to leave the stitches in place for another week, just to give it more time. By then I didn't really care what he said had to be done or not be done, I was just incredibly glad that things seemed to be looking in such a positive direction.
Things were going really well and I was doing my best to stay off of the wound as much as possible, as a matter of fact I had only been up on it to ride home from the surgery itself and to go to and from that wound care appointment. That was actually harder to do than it had been in the past, just because I felt so incredibly well. I was determined that I was not going to sabotage the healing process so I did not get up unless it was absolutely necessary.
As sometimes happens, just as things seem to be going really well, WHAM you get smacked upside the head with a dose of reality. My reality came about twelve days post-op, when I woke up very early in the morning with this weird emotional 'something isn't right' feeling. While I was worried I already knew that my visiting nurse was going to be arriving at my house within a few hours. Before I had even fully explained to her how I thought things were going, she had taken off the dressing and was making an 'uhoh' sound. It turns out that the stitches were pulling and didn't seem to be holding the wound closed. To take a quote from Yogi Berra, 'this was like deja vu all over again'.
Friday, April 20, 2012
Lots of Changes
The end of January left me incredibly happy. My surgeon had discontinued the Wound VAC and so it and all of the associated supplies were no longer taking up valuable space in my room. In addition, arrangements were made for the Clinitron At-Home bed to be picked up and for a new regular mattress to be delivered.
The nurses and my surgeon continued to treat the wound with the Calcium Alginate inside of the wound and then a dry dressing on top of it from mid January until the beginning of February when my surgeon said we were going to change what we were using. While I have pretty much always been a believer in the 'if it ain't broke, don't fix it' philosophy I have come to realize that sometimes even if a treatment is working it is important to change it up once in awhile. The human body will 'get used to' a type of treatment, sometimes to the extent that it will stop working. Therefore, it was in early February that my surgeon decided to switch me from the Calcium Alginate to something called Hydrofera Blue.
Hydrofera Blue is a synthetic sponge that is made of polyvinyl alcohol foam. The foam is infused with two pigments that protect against a wide spectrum of bacteria. The pigments, (Methylene Blue and Gentian Violet) give the hydrofera a blue-ish purple color. What is supposed to happen, is that any drainage will be pulled away from the wound bed, while the pigments are helping to prevent an infection.
The hydrofera blue was working to a certain extent, but after using it for two weeks, my surgeon wanted to change what we were doing again. He changed the orders back to the Prisma dressing with a foam dressing on top. Everything seemed to be going well, except that I was noticing more drainage. At that point, I wasn't sure if it was draining more because, something was wrong or because, the Prisma wasn't holding as much as the hydrofera was. I mentioned it to my nurses but they did not seem overly concerned about it. I was continuing to see my surgeon on a weekly basis throughout this period for the most part. When I woke up the day of my regular appointment with him, again I had a really weird feeling that something wasn't right. In fact, in the car on the way to the wound care center I kept telling my boyfriend that I had a feeling that the appointment wasn't going to go well.
When I got to the appointment I mentioned the excess drainage to the nurse and the surgeon. When the surgeon probed inside the wound I felt pain. I told him that it hurt and he basically asked if I knew what that meant. I did know, it meant that he was poking at bone and that I would need to have yet another surgery. Obviously, I was not at all pleased with this news but, I was not surprised by it due to my incredibly strong feeling. The surgeon told me that someone from his office would be in touch with me so that the surgery could be scheduled. In the meantime, he wanted me to go back to using the hydrofera blue.
When I got home, I called my visiting nurse and explained to her all that had gone on at my appointment and what the wound care orders were. It turns out, that we had run out of the hydrofera, so it would need to be ordered. In the meantime, I got in touch with the nurse at the wound care center and told her that we had Prisma and asked if that would be okay for a few days. I was told that it would be fine. We used the Prisma only until a few days before the surgery while we waited for the hydrofera to be delivered. The surgery was scheduled for the end of March.
The nurses and my surgeon continued to treat the wound with the Calcium Alginate inside of the wound and then a dry dressing on top of it from mid January until the beginning of February when my surgeon said we were going to change what we were using. While I have pretty much always been a believer in the 'if it ain't broke, don't fix it' philosophy I have come to realize that sometimes even if a treatment is working it is important to change it up once in awhile. The human body will 'get used to' a type of treatment, sometimes to the extent that it will stop working. Therefore, it was in early February that my surgeon decided to switch me from the Calcium Alginate to something called Hydrofera Blue.
Hydrofera Blue is a synthetic sponge that is made of polyvinyl alcohol foam. The foam is infused with two pigments that protect against a wide spectrum of bacteria. The pigments, (Methylene Blue and Gentian Violet) give the hydrofera a blue-ish purple color. What is supposed to happen, is that any drainage will be pulled away from the wound bed, while the pigments are helping to prevent an infection.
The hydrofera blue was working to a certain extent, but after using it for two weeks, my surgeon wanted to change what we were doing again. He changed the orders back to the Prisma dressing with a foam dressing on top. Everything seemed to be going well, except that I was noticing more drainage. At that point, I wasn't sure if it was draining more because, something was wrong or because, the Prisma wasn't holding as much as the hydrofera was. I mentioned it to my nurses but they did not seem overly concerned about it. I was continuing to see my surgeon on a weekly basis throughout this period for the most part. When I woke up the day of my regular appointment with him, again I had a really weird feeling that something wasn't right. In fact, in the car on the way to the wound care center I kept telling my boyfriend that I had a feeling that the appointment wasn't going to go well.
When I got to the appointment I mentioned the excess drainage to the nurse and the surgeon. When the surgeon probed inside the wound I felt pain. I told him that it hurt and he basically asked if I knew what that meant. I did know, it meant that he was poking at bone and that I would need to have yet another surgery. Obviously, I was not at all pleased with this news but, I was not surprised by it due to my incredibly strong feeling. The surgeon told me that someone from his office would be in touch with me so that the surgery could be scheduled. In the meantime, he wanted me to go back to using the hydrofera blue.
When I got home, I called my visiting nurse and explained to her all that had gone on at my appointment and what the wound care orders were. It turns out, that we had run out of the hydrofera, so it would need to be ordered. In the meantime, I got in touch with the nurse at the wound care center and told her that we had Prisma and asked if that would be okay for a few days. I was told that it would be fine. We used the Prisma only until a few days before the surgery while we waited for the hydrofera to be delivered. The surgery was scheduled for the end of March.
Tuesday, April 17, 2012
More Surgery
I went into the surgery in a generally positive mindset. The surgeon explained to me that he was going to scrape away a small portion of the bone so that it could be tested for infection. He then cleaned up the bone until he was at healthy bone so that if an infection was present it would be taken care of. After that he placed antibiotic seeds inside the wound cavity. He then placed Adaptic over the seeds, followed by a dry dressing. Adaptic is a type of knitted dressing that is coated in a petrolatum emulsion (petroleum jelly), so that it will not stick to the wound. The intent of this dressing is that it would allow any drainage to come out of the wound, meanwhile it was going to prevent the antibiotic seeds from falling out before my body was able to absorb them.
I woke up from the surgery feeling really well. I saw my surgeon who then explained to me what he had done. I was allowed food and then able to see my boyfriend a short time later. Shortly thereafter, I was discharged to my house. When I got home I was feeling remarkably well and I immediately called my nurse to update her on the new wound care orders that she would begin with me the following day. The new wound care orders consisted of cleansing the wound with normal saline, packing it with Calcium Alginate and then covering it with a simple dry dressing.
The few days following the surgery went really well. I was still stuck at home in a bed recovering from surgery but I felt remarkably well. So well in fact, that it was only about three days post-op that I began writing this blog. See, I had been encouraged by my surgeon during one of my prior appointments to do something while I was stuck at home. When I asked him what I should do he suggested a blog. After getting a resounding 'yes! Do it, I really think you should' from my best friend I began writing.
I continued to have visiting nurse visits at my home and saw the surgeon on average once a week. Things seemed to be going very well. I had every indication that it was getting smaller and that an end may actually be in sight. Being that the surgeon was very happy with the way things were going it was toward the end of January that I had the courage to ask him if he could give me an indication of when I could get rid of the Clinitron At-Home bed. My asking was mostly due to the sand leaking everywhere. I along with my parents were sick of the mess. I was thrilled that he said that I could get rid of it at that point! Finally I'd be getting my room back.
I woke up from the surgery feeling really well. I saw my surgeon who then explained to me what he had done. I was allowed food and then able to see my boyfriend a short time later. Shortly thereafter, I was discharged to my house. When I got home I was feeling remarkably well and I immediately called my nurse to update her on the new wound care orders that she would begin with me the following day. The new wound care orders consisted of cleansing the wound with normal saline, packing it with Calcium Alginate and then covering it with a simple dry dressing.
The few days following the surgery went really well. I was still stuck at home in a bed recovering from surgery but I felt remarkably well. So well in fact, that it was only about three days post-op that I began writing this blog. See, I had been encouraged by my surgeon during one of my prior appointments to do something while I was stuck at home. When I asked him what I should do he suggested a blog. After getting a resounding 'yes! Do it, I really think you should' from my best friend I began writing.
I continued to have visiting nurse visits at my home and saw the surgeon on average once a week. Things seemed to be going very well. I had every indication that it was getting smaller and that an end may actually be in sight. Being that the surgeon was very happy with the way things were going it was toward the end of January that I had the courage to ask him if he could give me an indication of when I could get rid of the Clinitron At-Home bed. My asking was mostly due to the sand leaking everywhere. I along with my parents were sick of the mess. I was thrilled that he said that I could get rid of it at that point! Finally I'd be getting my room back.
Friday, April 13, 2012
What is Going On
I had the PICC line in place for the next six weeks as I needed to have at least a six week course of the antibiotic. The nurse was right when she told me that after doing the medication a few times that it would end up being something that I wouldn't really need to think about doing. Meanwhile I was still using the Wound VAC.
Everything seemed to be going really well as I adjusted to using the PICC, I was at this point pretty much used to the Wound VAC so I was in a relatively decent place mentally. It was approximately the beginning of October at this point, I was told that as long as the Wound VAC was on and that I remembered not to lift anything weighing more than a gallon of milk that I could pretty much be up and out of bed once in awhile. While I was happy that I could be vertical more often I pretty much only allowed myself up when I deemed it absolutely necessary. I was beginning to get somewhat down about the entire situation and so I figured that if in essence grounding myself was going to make it heal that that was what I was going to do.
After I was on the antibiotics for the full six weeks my blood tests were showing that the infection had improved so much that the PICC line could be removed. The infectious disease doctor removed it, during one of my regular wound care appointments. Removing it was absolutely painless and it was completely out in less than a minute.
I would remain on the Wound VAC from that point all the way into the second week of January. In January I woke up to go to my normal wound care appointment with the surgeon, the car ride up was fine, except for the weird pit in my stomach. I had no evidence that anything was wrong other than just a weird feeling in my gut.
It turns out that when the surgeon started poking around he felt something sticking up in the center. He explained that he thought it was only a bone spur but that he wanted me to get an X-ray before I left. I was placed back on the wound VAC and sent down for the x-ray with the expectation that the surgeon would call me in a couple days to tell me everything was fine. I was hoping that a positive outlook was going to help. A couple of days later came the highly anticipated call, unfortunately the pictures were obstructed by a different unrelated procedure that I had when I was very young. The obstructed view meant that I would now need to undergo a Magnetic Resonance Imaging (MRI). I knew from past experience that while an MRI was going to be a loud and probably lengthy test I knew that it was completely painless so I went ahead and scheduled the test for after my wound care appointment the following week.
The test was done and I would end up getting the results during my visit with my surgeon. He said that he could not be positive that there was or was not an infection in the bone so he wanted to do another surgery so we would know what we were dealing with.
Everything seemed to be going really well as I adjusted to using the PICC, I was at this point pretty much used to the Wound VAC so I was in a relatively decent place mentally. It was approximately the beginning of October at this point, I was told that as long as the Wound VAC was on and that I remembered not to lift anything weighing more than a gallon of milk that I could pretty much be up and out of bed once in awhile. While I was happy that I could be vertical more often I pretty much only allowed myself up when I deemed it absolutely necessary. I was beginning to get somewhat down about the entire situation and so I figured that if in essence grounding myself was going to make it heal that that was what I was going to do.
After I was on the antibiotics for the full six weeks my blood tests were showing that the infection had improved so much that the PICC line could be removed. The infectious disease doctor removed it, during one of my regular wound care appointments. Removing it was absolutely painless and it was completely out in less than a minute.
I would remain on the Wound VAC from that point all the way into the second week of January. In January I woke up to go to my normal wound care appointment with the surgeon, the car ride up was fine, except for the weird pit in my stomach. I had no evidence that anything was wrong other than just a weird feeling in my gut.
It turns out that when the surgeon started poking around he felt something sticking up in the center. He explained that he thought it was only a bone spur but that he wanted me to get an X-ray before I left. I was placed back on the wound VAC and sent down for the x-ray with the expectation that the surgeon would call me in a couple days to tell me everything was fine. I was hoping that a positive outlook was going to help. A couple of days later came the highly anticipated call, unfortunately the pictures were obstructed by a different unrelated procedure that I had when I was very young. The obstructed view meant that I would now need to undergo a Magnetic Resonance Imaging (MRI). I knew from past experience that while an MRI was going to be a loud and probably lengthy test I knew that it was completely painless so I went ahead and scheduled the test for after my wound care appointment the following week.
The test was done and I would end up getting the results during my visit with my surgeon. He said that he could not be positive that there was or was not an infection in the bone so he wanted to do another surgery so we would know what we were dealing with.
Monday, March 19, 2012
Using the PICC line
When I left the hospital I went directly to my house so that I could meet the nurse that was going to teach me how to use the PICC line. I had a friend that had one in the past and while I was a little bit unsure about using the PICC myself I sort of had an idea of how it worked. I got to my house just as my antibiotic and supplies were being delivered and the nurse came shortly thereafter.
The nurse explained that I really would not have anything to worry about as far as giving myself the medication because it was all written down for me and she was going to also teach me a simple way to remember it. She told me that I would be using the 'SASH' method to push the medication into the line. Using that method, I would first flush the line with normal saline, then would administer the antibiotic, then I would need to flush the line with saline again and finally I would need to use Heperin, a blood thinner so that the line would not clot.
Once she told me about the SASH method I was more confident because it sounded relatively simple. At that point the only part of the entire situation that had me concerned was the schedule that I would need to adhere to. The hospital always seemed to tell me that it was time for my antibiotic at the strangest hours, but before I was discharged the infectious disease doctor told me that I could adjust the schedule so that I could get some sleep. The nurse and I discussed that and altered the schedule slightly so that after the first couple days I would no longer need to wake up in the middle of the night to do it.
Once she had told me how to administer the medication it was time for me to try doing it, with her watching and available if I should need any help. I was able to do it absolutely fine and with minimal questions. After the dosage was administered she had stuck around for about an hour to monitor me for signs of a reaction to the medication. I did not have a bad reaction so she left, saying she would be back the following day to change the dressing.
The next morning the visiting nurse called me to schedule her visit so that she could again, re-admit me into their service, and so she could change my Wound VAC dressing. The visit was scheduled for a few hours later so that I would have time to give myself my antibiotic and could also shower. When I was in the hospital the surgeon had told me that he had placed antibiotic seeds into the wound and that they should be left alone, but that I was allowed to shower. Well, when I got out of my shower I was disturbed to see something that I can only describe as the white candies that are ontop of Sno-Caps chocolates laying on both my shower chair and on the bottom of the tub. I knew that the nurse was going to be arriving at any moment so while I was worried about what I had seen I did not dwell on it because I was confident that my nurse would be able to handle the situation. The nurse arrived and I immediately asked her to look in my shower so she could see what had happened. It turns out that what I was seeing were the antibiotic seeds. We called the office and explained what had happened, but that the nurse still saw some left in the wound. We were told that with the other medication I was taking that while it wasn't ideal that they had fallen out it was not anything to be overly concerned with. The nurse changed the VAC dressing and we scheduled her next visit for a few days later.
The nurse explained that I really would not have anything to worry about as far as giving myself the medication because it was all written down for me and she was going to also teach me a simple way to remember it. She told me that I would be using the 'SASH' method to push the medication into the line. Using that method, I would first flush the line with normal saline, then would administer the antibiotic, then I would need to flush the line with saline again and finally I would need to use Heperin, a blood thinner so that the line would not clot.
Once she told me about the SASH method I was more confident because it sounded relatively simple. At that point the only part of the entire situation that had me concerned was the schedule that I would need to adhere to. The hospital always seemed to tell me that it was time for my antibiotic at the strangest hours, but before I was discharged the infectious disease doctor told me that I could adjust the schedule so that I could get some sleep. The nurse and I discussed that and altered the schedule slightly so that after the first couple days I would no longer need to wake up in the middle of the night to do it.
Once she had told me how to administer the medication it was time for me to try doing it, with her watching and available if I should need any help. I was able to do it absolutely fine and with minimal questions. After the dosage was administered she had stuck around for about an hour to monitor me for signs of a reaction to the medication. I did not have a bad reaction so she left, saying she would be back the following day to change the dressing.
The next morning the visiting nurse called me to schedule her visit so that she could again, re-admit me into their service, and so she could change my Wound VAC dressing. The visit was scheduled for a few hours later so that I would have time to give myself my antibiotic and could also shower. When I was in the hospital the surgeon had told me that he had placed antibiotic seeds into the wound and that they should be left alone, but that I was allowed to shower. Well, when I got out of my shower I was disturbed to see something that I can only describe as the white candies that are ontop of Sno-Caps chocolates laying on both my shower chair and on the bottom of the tub. I knew that the nurse was going to be arriving at any moment so while I was worried about what I had seen I did not dwell on it because I was confident that my nurse would be able to handle the situation. The nurse arrived and I immediately asked her to look in my shower so she could see what had happened. It turns out that what I was seeing were the antibiotic seeds. We called the office and explained what had happened, but that the nurse still saw some left in the wound. We were told that with the other medication I was taking that while it wasn't ideal that they had fallen out it was not anything to be overly concerned with. The nurse changed the VAC dressing and we scheduled her next visit for a few days later.
Wednesday, March 14, 2012
Again a Trip to the Operating Room
CAUTION!!!! This post has what may be considered a graphic photo!
I went into the next surgery fully anticipating the surgeon to remove a small portion of the bone. I was obviously upset that the infection had penetrated into the bone and also curious how it had managed to happen while I was on the Wound VAC.
This surgery was obviously going to be more invasive than the previous, so I was more heavily sedated for the procedure. As such, I do not remember anything until I was waking up in the recovery room. When I woke up I felt fine and was wheeled into my room, with the Wound VAC therapy already having been resumed. Being that the infection was in the bone I would need to be admitted to the hospital for a few days so that the infection could be grown in a lab, so that we could ensure that I was treated with the proper medication. In the meantime I was treated with a broad spectrum antibiotic intravenously.
When I was more alert a bit later that day my surgeon came in and explained that he did take a portion of the bone and while he was looking around he asked for a consult with one of the infectious disease doctors. The surgeon is basically responsible for making sure the wound closes, while the infectious disease doctor's responsibility is to treat the infection so that it would be able to close without all sorts of bacteria in it.
I met the infectious disease doctor and was comfortable with him from the beginning. No alarm bells were going off in my head about anyone that was now treating me. I was confident that with the combination of the two doctors that the wound was getting proper treatment and it would close, with time.
Around day four of my hospital stay the two doctors came into my room and said that they were going to discharge me the next day but that I would need to have something called a PICC line inserted first. The PICC line is a peripherally inserted central catheter. A small tube was to be inserted into my upper arm and threaded up into a major vein of the heart and is used to deliver antibiotics on a long term basis.
The next day a nurse came in to get me so that my PICC line could be inserted. Surprisingly, enough I was not especially nervous about this procedure, even though I would be awake and completely aware of the entire thing. Although the PICC line felt uncomfortable going in I would not necessarily call it a painful experience.
After my PICC was inserted I was brought back to my room to get some instruction on how to use the line. It turns out that after a visiting nurse did the initial dose with me that I personally would need to administer my medication myself. That was the only part that made me uneasy, but I figured that it would not be allowed if it weren't a relatively simple thing to do. I went home with the Wound VAC and PICC line and was told that a nurse would meet me at my home to administer the antibiotic with me and to teach me how to do it for myself from then on. The nurse for the PICC line would only come on a weekly basis to change the dressing and to draw labs to monitor the infection.
I went into the next surgery fully anticipating the surgeon to remove a small portion of the bone. I was obviously upset that the infection had penetrated into the bone and also curious how it had managed to happen while I was on the Wound VAC.
This surgery was obviously going to be more invasive than the previous, so I was more heavily sedated for the procedure. As such, I do not remember anything until I was waking up in the recovery room. When I woke up I felt fine and was wheeled into my room, with the Wound VAC therapy already having been resumed. Being that the infection was in the bone I would need to be admitted to the hospital for a few days so that the infection could be grown in a lab, so that we could ensure that I was treated with the proper medication. In the meantime I was treated with a broad spectrum antibiotic intravenously.
When I was more alert a bit later that day my surgeon came in and explained that he did take a portion of the bone and while he was looking around he asked for a consult with one of the infectious disease doctors. The surgeon is basically responsible for making sure the wound closes, while the infectious disease doctor's responsibility is to treat the infection so that it would be able to close without all sorts of bacteria in it.
I met the infectious disease doctor and was comfortable with him from the beginning. No alarm bells were going off in my head about anyone that was now treating me. I was confident that with the combination of the two doctors that the wound was getting proper treatment and it would close, with time.
Around day four of my hospital stay the two doctors came into my room and said that they were going to discharge me the next day but that I would need to have something called a PICC line inserted first. The PICC line is a peripherally inserted central catheter. A small tube was to be inserted into my upper arm and threaded up into a major vein of the heart and is used to deliver antibiotics on a long term basis.
The next day a nurse came in to get me so that my PICC line could be inserted. Surprisingly, enough I was not especially nervous about this procedure, even though I would be awake and completely aware of the entire thing. Although the PICC line felt uncomfortable going in I would not necessarily call it a painful experience.
After my PICC was inserted I was brought back to my room to get some instruction on how to use the line. It turns out that after a visiting nurse did the initial dose with me that I personally would need to administer my medication myself. That was the only part that made me uneasy, but I figured that it would not be allowed if it weren't a relatively simple thing to do. I went home with the Wound VAC and PICC line and was told that a nurse would meet me at my home to administer the antibiotic with me and to teach me how to do it for myself from then on. The nurse for the PICC line would only come on a weekly basis to change the dressing and to draw labs to monitor the infection.
Monday, March 12, 2012
Frustrations
Due to an error with the paper work being sent for the Wound VAC we were unable to begin using the Wound VAC until almost a week later. I was disappointed that it was going to be postponed but I realized that there was nothing I could do so I just accepted the fact that I needed to wait.
When the VAC finally arrived we began the VAC therapy. It was approximatly a week later that the surgeon wanted to see me again so he could check on how everything was going. The appointment with the surgeon was uneventful and all signs were pointing in a positive direction. The surgeon then explained to me that he was going to be out of town for a few weeks and that I should make an appointment to see him in a month.
During that month I continued to use the Wound VAC and have a few nursing visits a week so that the VAC dressing could be changed and so that the wound could be monitored. Everything with the wound seemed to be going well.
By this point the wound was not what was causing me the most stress. The Clinitron At-Home bed was a different story though. The part of the bed that holds the 'sand' is covered by a polyester sheet, which I did not find to be very durable at all. After having had this bed for so long I was finding that it seemed to be tearing which was causing the sand to go everywhere. This was not only uncomfortable to sleep on but I found it nearly impossible to eat while I was in bed. It felt like even if I had just washed my hands that they had a gritty feel to them. When I called the company to ask what to do about it, I was told that because of insurance I was no longer renting the bed so the replacement cover was not going to be replaced for free. Figuring that a piece of polyester really couldn't cost that much I inquired as to the cost. When they told me how much it was going to cost I asked if they had any suggestions how I could fix it without replacing it. I was basically told that I should try to use either electrical tape or duct tape over the tears. That suggestion was fine but only for a very temporary basis. The heat of the bed all but destroys the adhesive on the tape so it basically needed to be re-taped a few times a week.
While this was incredibly frustrating I kept reminding myself that it really would be only needed temporarily, due to the fact that I was on the Wound VAC and so the wound should close. Things seemed to be going well until about a week before I was supposed to see the surgeon. That week I was starting to feel more pain from the wound. I had been told previously that sometimes pain is due to healing so I was not super concerned about it. The other thing that kept me from worrying was the fact that the pain could be relieved with medication. I figured that if something were really wrong that the pain would be more constant and that the medication would not be as effective in stopping it. I mentioned the pain to my nurse during a couple visits and she was only mildly concerned about it based on her opinion of how the wound looked.
I did not really consider making a phone call to the wound care center until a couple of days before my appointment was already scheduled for. I figured that I had dealt with it and it wasn't very severe so it could wait until I saw my surgeon. The day of my appointment arrived and I mentioned to the nurse and the surgeon that I was experiencing some pain. When the surgeon examined the wound was when I felt a whole bunch more pain. It turns out, that bone was now exposed and that I would need surgery. The appointment was on a Tuesday and he looked at me and basically said, 'ok, Friday or Monday which works for you?' I chose Friday being that I figured based on the options I was given that sooner was probably better than later.
When the VAC finally arrived we began the VAC therapy. It was approximatly a week later that the surgeon wanted to see me again so he could check on how everything was going. The appointment with the surgeon was uneventful and all signs were pointing in a positive direction. The surgeon then explained to me that he was going to be out of town for a few weeks and that I should make an appointment to see him in a month.
During that month I continued to use the Wound VAC and have a few nursing visits a week so that the VAC dressing could be changed and so that the wound could be monitored. Everything with the wound seemed to be going well.
By this point the wound was not what was causing me the most stress. The Clinitron At-Home bed was a different story though. The part of the bed that holds the 'sand' is covered by a polyester sheet, which I did not find to be very durable at all. After having had this bed for so long I was finding that it seemed to be tearing which was causing the sand to go everywhere. This was not only uncomfortable to sleep on but I found it nearly impossible to eat while I was in bed. It felt like even if I had just washed my hands that they had a gritty feel to them. When I called the company to ask what to do about it, I was told that because of insurance I was no longer renting the bed so the replacement cover was not going to be replaced for free. Figuring that a piece of polyester really couldn't cost that much I inquired as to the cost. When they told me how much it was going to cost I asked if they had any suggestions how I could fix it without replacing it. I was basically told that I should try to use either electrical tape or duct tape over the tears. That suggestion was fine but only for a very temporary basis. The heat of the bed all but destroys the adhesive on the tape so it basically needed to be re-taped a few times a week.
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| sand on the side |
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| sand going up to the top |
I did not really consider making a phone call to the wound care center until a couple of days before my appointment was already scheduled for. I figured that I had dealt with it and it wasn't very severe so it could wait until I saw my surgeon. The day of my appointment arrived and I mentioned to the nurse and the surgeon that I was experiencing some pain. When the surgeon examined the wound was when I felt a whole bunch more pain. It turns out, that bone was now exposed and that I would need surgery. The appointment was on a Tuesday and he looked at me and basically said, 'ok, Friday or Monday which works for you?' I chose Friday being that I figured based on the options I was given that sooner was probably better than later.
Friday, March 9, 2012
Edge Trimming Surgery
While I was waiting for the day of the surgery to arrive I tried not to think about it very much at all. Not because I was nervous, but because I was excited about the possibilities and I did not want to feel let down if things did not go exactly as planned. While I believed that the surgeon could close the wound surgically, he had warned me that based on the location of the wound and just by moving around that the sutures may not actually hold it.
The morning of the surgery I was cautiously optimistic. I went in and met with the surgeon to go over all of the last minute details. That entire conversation was fine, I had a very good feeling that I was where I was supposed to be, being treated by the person that was supposed to treat me so I went into the surgery with absolutely no hesitation.
Being that this was a relatively minor procedure, the surgeon and I had discussed the type of medication that I was going to be given so that I would not feel what was going on. We decided that instead of undergoing general anesthesia that I would just be given "twilight sedation." When they gave me the medication, I basically fell asleep and knew nothing until a little while later when I was roused by an uncomfortable pillow. I asked the person at my head to move it and that was done without a problem. Once that was moved I did not feel any pain, yet I was not groggy enough that I was falling back to sleep so I just laid there and let whatever was happening continue.
Eventually, I asked the person at my head how it was going and what was going on. I was told that it was almost done and that the surgeon was closing the wound, pretty much at that moment. I was really happy when I heard that news. I was wheeled into the recovery room shortly thereafter and pretty soon after that my family member was allowed in to see me. I was fine by then, I felt spectacular. I was given a sandwich and basically being that I was able to eat it without any problem, they discharged me to my home.
I was sent home, with instructions to stay off the wound, and stay in my Clinitron bed except to get up and go to the bathroom. I went straight to my bed when I got home and pretty much did not move until many hours later when I had to go to the bathroom. Getting up out of bed was no problem at all and did not really scare me but when I was getting back into bed I suddenly saw blood, it seemed like it was a lot so I called in a family member to have a look at the situation. My clothes were bloody but it was not pooling, we got in touch with the doctor and he basically said that it was not anything to be super concerned about, especially being that my visiting nurse was going to see me first thing the next morning.
The next morning, when my nurse came I explained to her all that had gone on during the surgery and about the blood situation that had happened once I got home. She then took a look at the surgical site and said that while their was a lot of blood on the clothing I had taken off the night before that the site looked very good and that it was awesome to look at me and not to see a giant hole. She covered the wound and said that she would be back a few days later to change the dressing again.
I spent those few days in my bed and not really moving at all. I was determined that if this wound wasn't going to stay closed that it would not be because of anything I had directly done or not done. When my nurse called me to schedule her next visit we discussed me getting up to take a shower immediately before her visit and we decided that based on the discharge instructions from the hospital that that would be okay. When she saw the site after my shower she said that it still looked really good but that one of the stitches was beginning to pull but she did not think that anything was wrong, She just warned me to be incredibly careful about it, let me tell you, she did not have to warn me twice. When she called a few days later about scheduling the next visit I she said that again I could take a shower right before she arrived. I asked her if she really felt it was a good idea based on the fact that the stitches were beginning to pull at her last visit. She said that it was okay, so I hesitantly got up and took a quick shower.
When she came and looked at the wound she saw that a bunch of the stitches that had been holding the wound closed that pulled and were no longer doing any good. I was supposed to see the surgeon the following day so all she did was redress the wound and made a call into the office to give him a heads up about what was going on. I was obviously not happy with this news that I was hearing but I was warned that this was a possibility, along with warning me about that possibility the surgeon also said that he was confident that even if it did not stay closed after the surgery that once the edges were removed that it would heal better than it was before.
The next day I met the surgeon at his office so that he could see what was going on with the stitches. When I was in the car on the way to his office I kept feeling some drainage, so I had a feeling that it was not going to be spectacular news. When he looked at it, sure enough the stitches were doing no good at all so he removed them and packed the wound with calcium alginate dressing. I was not really happy that I now had an even larger wound that was open. Yet I believed that it was the thick rolled edges that were preventing it from closing before and that being that those were gone that my body would start to heal it again.
The surgeon then asked me if I would really object to having the Wound VAC started up again to get it going. At that point I did not necessarily care what he said we had to do, I was going to go with his suggestions, based on the really good feeling I had gotten about him all along. I left the office and called my visiting nurse when I got home to bring her up to speed on what all had gone on and what direction we were thinking about going in. The visiting nurse was not happy that the stitches had to be removed but we all new it was a possibility so dwelling on it was not going to help anyone.
Being that this was now a Saturday afternoon the nurse wanted to get the Wound VAC orders as soon as possible so that the company could ship it to me so we could begin the therapy. She asked me for the surgeon's phone number, she called the surgeon, called the VAC company and then called me back. She explained that she had given all of the necessary information and that the VAC would probably arrive on that Wednesday so she would just dress the wound the same way the surgeon had until the VAC arrived.
The morning of the surgery I was cautiously optimistic. I went in and met with the surgeon to go over all of the last minute details. That entire conversation was fine, I had a very good feeling that I was where I was supposed to be, being treated by the person that was supposed to treat me so I went into the surgery with absolutely no hesitation.
Being that this was a relatively minor procedure, the surgeon and I had discussed the type of medication that I was going to be given so that I would not feel what was going on. We decided that instead of undergoing general anesthesia that I would just be given "twilight sedation." When they gave me the medication, I basically fell asleep and knew nothing until a little while later when I was roused by an uncomfortable pillow. I asked the person at my head to move it and that was done without a problem. Once that was moved I did not feel any pain, yet I was not groggy enough that I was falling back to sleep so I just laid there and let whatever was happening continue.
Eventually, I asked the person at my head how it was going and what was going on. I was told that it was almost done and that the surgeon was closing the wound, pretty much at that moment. I was really happy when I heard that news. I was wheeled into the recovery room shortly thereafter and pretty soon after that my family member was allowed in to see me. I was fine by then, I felt spectacular. I was given a sandwich and basically being that I was able to eat it without any problem, they discharged me to my home.
I was sent home, with instructions to stay off the wound, and stay in my Clinitron bed except to get up and go to the bathroom. I went straight to my bed when I got home and pretty much did not move until many hours later when I had to go to the bathroom. Getting up out of bed was no problem at all and did not really scare me but when I was getting back into bed I suddenly saw blood, it seemed like it was a lot so I called in a family member to have a look at the situation. My clothes were bloody but it was not pooling, we got in touch with the doctor and he basically said that it was not anything to be super concerned about, especially being that my visiting nurse was going to see me first thing the next morning.
The next morning, when my nurse came I explained to her all that had gone on during the surgery and about the blood situation that had happened once I got home. She then took a look at the surgical site and said that while their was a lot of blood on the clothing I had taken off the night before that the site looked very good and that it was awesome to look at me and not to see a giant hole. She covered the wound and said that she would be back a few days later to change the dressing again.
I spent those few days in my bed and not really moving at all. I was determined that if this wound wasn't going to stay closed that it would not be because of anything I had directly done or not done. When my nurse called me to schedule her next visit we discussed me getting up to take a shower immediately before her visit and we decided that based on the discharge instructions from the hospital that that would be okay. When she saw the site after my shower she said that it still looked really good but that one of the stitches was beginning to pull but she did not think that anything was wrong, She just warned me to be incredibly careful about it, let me tell you, she did not have to warn me twice. When she called a few days later about scheduling the next visit I she said that again I could take a shower right before she arrived. I asked her if she really felt it was a good idea based on the fact that the stitches were beginning to pull at her last visit. She said that it was okay, so I hesitantly got up and took a quick shower.
When she came and looked at the wound she saw that a bunch of the stitches that had been holding the wound closed that pulled and were no longer doing any good. I was supposed to see the surgeon the following day so all she did was redress the wound and made a call into the office to give him a heads up about what was going on. I was obviously not happy with this news that I was hearing but I was warned that this was a possibility, along with warning me about that possibility the surgeon also said that he was confident that even if it did not stay closed after the surgery that once the edges were removed that it would heal better than it was before.
The next day I met the surgeon at his office so that he could see what was going on with the stitches. When I was in the car on the way to his office I kept feeling some drainage, so I had a feeling that it was not going to be spectacular news. When he looked at it, sure enough the stitches were doing no good at all so he removed them and packed the wound with calcium alginate dressing. I was not really happy that I now had an even larger wound that was open. Yet I believed that it was the thick rolled edges that were preventing it from closing before and that being that those were gone that my body would start to heal it again.
The surgeon then asked me if I would really object to having the Wound VAC started up again to get it going. At that point I did not necessarily care what he said we had to do, I was going to go with his suggestions, based on the really good feeling I had gotten about him all along. I left the office and called my visiting nurse when I got home to bring her up to speed on what all had gone on and what direction we were thinking about going in. The visiting nurse was not happy that the stitches had to be removed but we all new it was a possibility so dwelling on it was not going to help anyone.
Being that this was now a Saturday afternoon the nurse wanted to get the Wound VAC orders as soon as possible so that the company could ship it to me so we could begin the therapy. She asked me for the surgeon's phone number, she called the surgeon, called the VAC company and then called me back. She explained that she had given all of the necessary information and that the VAC would probably arrive on that Wednesday so she would just dress the wound the same way the surgeon had until the VAC arrived.
Wednesday, March 7, 2012
A Positive Gut Feeling
I spent that week continuing to do what we had been doing. We were packing the wound with the calcium alginate, and then just putting a dry dressing on top. Knowing by then, not a whole lot of the healing process would be effected by anything. While, I was unhappy that we seemed to just be wasting time I tried to wait patiently for the appointment with the surgeon.
The day of my appointment with the surgeon I went into it positive that something good HAD to come from it. I was done with seeing people that were just wasting my time, and I swore that if I even got any inkling of a clue not to trust the surgeon that I would not continue to see him as I had done with the first surgeon.
I went in and met with a nurse first and proceeded to give her the background information on the wound and then waited for the surgeon to come in and examine the wound. When he came in and did the examination he said that yes he agreed that the edges did need to be removed. During the exam he also took a culture and a tissue sample from the wound to make sure nothing was going on beyond what we could see, that was preventing the wound from healing. I was told to go back to see him the following week so that we could discuss the test results and the options I had.
I left the appointment and called a family member to tell her how the appointment had gone. This was the same family member that I had called after the initial surgical appointment two years earlier. She said that I sounded more upbeat and positive about the situation than she had heard me in a very long time. She was right, I was positive that things would start going in a much better direction. I have no idea why I thought that, other than to say I had an incredibly good feeling about the wound care center and the surgeon.
When I went back a week later the surgeon explained to me that the cultures did show an infection but nothing that would have prevented the wound from closing. He prescribed the same Bactroban cream that I had been on previously to treat the infection. He also said that surgery was necessary to get the edges of the wound off and asked me when I was thinking I would like to have it. Being that I had been living with this wound for over two years with virtually no change, I had decided that I was going to go to a baseball game three weeks later and so I asked if it could be after the game. I was told that that was fine, and that it was probably the soonest it would be able to be scheduled anyway, so to go and enjoy the game. I was told to call later and schedule the appointment and that being that it was going to be a few weeks away to call and schedule a regular appointment with him as well sometime between then and whenever I chose to have the surgery.
I called and scheduled the surgery for the day after I would attend the baseball game. I went back to see him about two weeks later to discuss the surgery more in depth, and so he could check the wound to see how it was doing. When he looked at the wound he did not notice much of a change, which while being somewhat disappointing was not really a surprise. He then went on to explain that during the surgery he was going to remove the thick rolled edges of the wound, he also said that he felt he may be able to just surgically close the wound at the same time. That was somewhat surprising yet I thought that it would be awesome if that were actually the case.
When I got home and explained to friends and family what was going on they were all excited that I seemed to have finally found a surgeon that made sense to me and that I felt I could communicate with. While I was super excited about the possibility that he may be able to close the wound it was not something that I allowed myself to really focus on, purely so that I was not disappointed if that were not the case.
The day of my appointment with the surgeon I went into it positive that something good HAD to come from it. I was done with seeing people that were just wasting my time, and I swore that if I even got any inkling of a clue not to trust the surgeon that I would not continue to see him as I had done with the first surgeon.
I went in and met with a nurse first and proceeded to give her the background information on the wound and then waited for the surgeon to come in and examine the wound. When he came in and did the examination he said that yes he agreed that the edges did need to be removed. During the exam he also took a culture and a tissue sample from the wound to make sure nothing was going on beyond what we could see, that was preventing the wound from healing. I was told to go back to see him the following week so that we could discuss the test results and the options I had.
I left the appointment and called a family member to tell her how the appointment had gone. This was the same family member that I had called after the initial surgical appointment two years earlier. She said that I sounded more upbeat and positive about the situation than she had heard me in a very long time. She was right, I was positive that things would start going in a much better direction. I have no idea why I thought that, other than to say I had an incredibly good feeling about the wound care center and the surgeon.
When I went back a week later the surgeon explained to me that the cultures did show an infection but nothing that would have prevented the wound from closing. He prescribed the same Bactroban cream that I had been on previously to treat the infection. He also said that surgery was necessary to get the edges of the wound off and asked me when I was thinking I would like to have it. Being that I had been living with this wound for over two years with virtually no change, I had decided that I was going to go to a baseball game three weeks later and so I asked if it could be after the game. I was told that that was fine, and that it was probably the soonest it would be able to be scheduled anyway, so to go and enjoy the game. I was told to call later and schedule the appointment and that being that it was going to be a few weeks away to call and schedule a regular appointment with him as well sometime between then and whenever I chose to have the surgery.
I called and scheduled the surgery for the day after I would attend the baseball game. I went back to see him about two weeks later to discuss the surgery more in depth, and so he could check the wound to see how it was doing. When he looked at the wound he did not notice much of a change, which while being somewhat disappointing was not really a surprise. He then went on to explain that during the surgery he was going to remove the thick rolled edges of the wound, he also said that he felt he may be able to just surgically close the wound at the same time. That was somewhat surprising yet I thought that it would be awesome if that were actually the case.
When I got home and explained to friends and family what was going on they were all excited that I seemed to have finally found a surgeon that made sense to me and that I felt I could communicate with. While I was super excited about the possibility that he may be able to close the wound it was not something that I allowed myself to really focus on, purely so that I was not disappointed if that were not the case.
Monday, March 5, 2012
A Fresh Set of Eyes
My visiting nurse and I called the wound care center that had opened in my neighborhood and explained that I needed to be seen for a second opinion and generally what had been going on. I was able to get an appointment the following week so we continued to treat the wound as we had been with the Prisma.
The day of the appointment with the new doctor I was optimistic that something would be done to help this wound. I went in and originally met with a nurse to give her all of the background information that she needed. The nurse looked at the wound and said that she saw what I meant about the edges being very thick and rolled and that she would be back with the doctor in a few minutes.
When the nurse came back in with the doctor we both explained to him what had been going on and for how long (25 months). When the doctor looked at my wound he completely agreed that the edges needed to be removed for anything to progress. I thought it was awesome that finally a doctor was being reasonable and seemed to have knowledge about how wounds heal.
He also mentioned that I may want to consider 'flap surgery' to close the wound. That had been mentioned to me previously, at the first wound care center. That surgery seemed pretty extensive and also by the time it was mentioned by the first surgeon, I no longer trusted her. So there was no way that I was going to consent to another surgery with her, especially one that extensive.
I explained that it sounded sort of extreme and that I wasn't too sure how I felt about it, but I most definitely did want to do something about the edges of the wound. That is when they explained to me that while the wound was surgical, they did not actually have a surgeon that worked with them so they would have to refer me somewhere else. When it came time for them to give me a referral the nurse gave me the name of someone that she knew and trusted completely. She said that he was very good and that she had confidence that he would be helpful. Until I was able to get to, what would end up being my third opinion, they explained that basically it did not matter what we used in the wound. They had some of the calcium alginate dressings there so they used that and sent me home.
I left that appointment feeling like I had maybe gotten to the turning point. Based on a new referral to a surgeon that this wound would be treated effectively and I could move on with my life. When my nurse came the following day to change the dressing I told her all about what had happened the day before and that I was given a name and number to call. She said that it was great that we had left the first wound care center. That is when I realized that the appointment would need to be cancelled. I was a chicken and did not want to call and cancel it myself so I asked my nurse to do it. It was done in about two seconds. After we cancelled the appointment a new one needed to be made with the surgeon I had been referred to. That was scheduled for the following week.
The day of the appointment with the new doctor I was optimistic that something would be done to help this wound. I went in and originally met with a nurse to give her all of the background information that she needed. The nurse looked at the wound and said that she saw what I meant about the edges being very thick and rolled and that she would be back with the doctor in a few minutes.
When the nurse came back in with the doctor we both explained to him what had been going on and for how long (25 months). When the doctor looked at my wound he completely agreed that the edges needed to be removed for anything to progress. I thought it was awesome that finally a doctor was being reasonable and seemed to have knowledge about how wounds heal.
He also mentioned that I may want to consider 'flap surgery' to close the wound. That had been mentioned to me previously, at the first wound care center. That surgery seemed pretty extensive and also by the time it was mentioned by the first surgeon, I no longer trusted her. So there was no way that I was going to consent to another surgery with her, especially one that extensive.
I explained that it sounded sort of extreme and that I wasn't too sure how I felt about it, but I most definitely did want to do something about the edges of the wound. That is when they explained to me that while the wound was surgical, they did not actually have a surgeon that worked with them so they would have to refer me somewhere else. When it came time for them to give me a referral the nurse gave me the name of someone that she knew and trusted completely. She said that he was very good and that she had confidence that he would be helpful. Until I was able to get to, what would end up being my third opinion, they explained that basically it did not matter what we used in the wound. They had some of the calcium alginate dressings there so they used that and sent me home.
I left that appointment feeling like I had maybe gotten to the turning point. Based on a new referral to a surgeon that this wound would be treated effectively and I could move on with my life. When my nurse came the following day to change the dressing I told her all about what had happened the day before and that I was given a name and number to call. She said that it was great that we had left the first wound care center. That is when I realized that the appointment would need to be cancelled. I was a chicken and did not want to call and cancel it myself so I asked my nurse to do it. It was done in about two seconds. After we cancelled the appointment a new one needed to be made with the surgeon I had been referred to. That was scheduled for the following week.
Friday, March 2, 2012
My Breaking Point
Once we stopped using the Silver Nitrate we went back to using the same Prisma dressing that we had been previously using. I was displeased with this decision because I believed that the wound care nurse was accurate when she told me that the wound would not heal if we didn't do something about the thick rolled edges. Although, I disagreed with the surgeon's instructions I still continued to see her for my wound care. Despite the fact that my visiting nurse was irate with my choice to do so.
At one of the last appointments with that particular surgeon, she did her exam of the wound and explained to me that it was now bigger than it had been in the past few weeks. At that point I had no idea what to think other than that this was getting really ridiculous. The surgeon then asked me, in an accusatory tone what I was doing differently and said that I "had to be getting out of bed more often." I explained to her that I was remaining in the Clinitron bed except for about half an hour a day, and that the half hour was spread out through the entire day. She did not seem to believe me when I said that but there was nothing I could do to convince her. This was absolutely ludicrous, I could not believe that my surgeon now did not believe me when I told her that I honestly was not doing anything differently.
Any one else that was in a situation like that probably would have made that the final appointment with that particular surgeon. However, I don't always do things the way everyone else typically does, so I made an appointment to see her again the following week for her to check on the progress. The visiting nurse and I continued at this point to do the Prisma dressings that were very clearly not going to help. By now I was rapidly approaching my breaking point with the surgeon and the wound in general.
I had at this point wasted approximately two years of my life waiting for this wound to heal. I had not really spent any time out of the bed except for doctors appointments and holidays and one concert, since the wound was discovered. I was beginning to look forward to the doctors appointments, purely so that I could go outside for a little while. From my house to the car, from the car to the office and then back home again. Big whoop, yet I was going outside so I didn't particularly care where I was going or what I was doing.
The following week I went back to the doctor rather fed up with how everything was being handled. The doctor looked at the wound and its measurements and it had not gotten any smaller, yet it hadn't gotten any larger either. I was happy that it was not larger but that is when I realized what the surgeon was doing, she was looking at the wound and shouting "Why, why aren't you closing yet Why!?" directly to the wound itself. I could not believe that she was actually saying this, and then to shout it directly to the wound, had this woman lost her mind? I was also peeved because I felt like I knew why it wasn't closing and it all had to do with the edges of the wound having gotten so thick and rolled. Her opinion clearly differed from mine and while I understand that, I did not feel respected when I explained my point of view to her. I was instructed to go back to her yet again in another week.
I never ended up going back to see her. The shouting at my wound made me loose any shred of respect I may have had toward her and there was no way I would be treated by her any longer. I went home from that appointment angry at the surgeon and partially at myself for sticking it out with her for so long, despite all of the signs that I was given even at the beginning. I distinctly remembered calling a relative after the first appointment with the surgeon and explaining that I had a really bad feeling about her, although I couldn't put my finger on just why. I decided to channel my anger toward finding a way to close this wound so that I could have my life back. When I got home I called my visiting nurse and told her that I was finally done with that surgeon and asked if she could she recommend a place for me to be treated. While the nurse was not at all happy about how my last couple appointments had gone with that surgeon, she was happy that I was finally beginning to see the light.
The visiting nurse made a few phone calls to get some suggestions from her colleagues and then called me back. She explained that during the time I was treated by a wound care center in the neighboring town that one had opened in my neighborhood, just minutes from my home. She had heard some very good things about them and I also felt that I didn't have anything to lose by allowing a fresh set of eyes to look at the wound. Maybe some progress would be made, eventually?
Tuesday, February 28, 2012
Edges Are Preventing the Healing Process
We continued to treat the wound as the surgeon directed even though at this point my nurse had absolutely no belief that the surgeon was going to be the one that actually would heal the wound. At this point I no longer trusted the surgeon even a little bit. After nearly two years this wound was still basically the same size it was when I began seeing her. I was upset about the situation but was emotionally too "stuck" to do a whole lot to help myself.
The wound care surgeon finally decided to take me off of the Prisma and switch me to a Calcium Alginate dressing that had Silver in it. The dressing is supposed to absorb the drainage from the wound and as that happens the dressing will form a gel which is supposed to keep the wound moist for optimal healing. The silver that is in the dressing is supposed to help protect the wound from a very wide variety of bacteria to hopefully prevent an infection.
None of these things that the surgeon was recommending were helping me so the visiting nurse said that she had a contact with a nurse that specialized in wound care and she would like to bring her to see me to see if she had any suggestions as far as what would close this wound. This was when I decided to do something that would potentially help myself and agreed that the wound nurse could come to the following visit with my regular nurse.
When the wound specialist came to my house with my regular visiting nurse she wanted some background information on what we thought caused this wound in the first place and also what we had tried to use to get it to heal on its own. We answered all of her questions and then she got down to the business of looking at the wound. When she saw the wound she almost immediately knew what the problem was. My wound had developed very thick rolled edges on all the sides.
The wound care nurse explained to me that what had happened was that the epithelial cells had migrated down around the wound edges, the edges were healed so my body thought that the wound itself was also healed. It was explained to me that the only way that the wound would heal is if we got rid of those edges so that the epithelialization of the wound surface could occur. She suggested that we begin using silver nitrate on the wound edges. She told me that basically it would "melt" away the edges of the wound to convince my body that it needed to continue to work to heal the wound. While none of this sounded like it was going to be any fun, I agreed that it made logical sense and I was willing to give it a shot.
My visiting nurse went ahead and called the surgeon to run the idea by her and to get the order so that we could get the supplies. While the surgeon did not seem to think that it was a necessary step she did not object to us giving it a try. The supplies were ordered and a few days later my nurse applied the silver nitrate to the wound edges. When she first put it on it stung for a minute, but it did not feel nearly as terrible as I was warned that it would feel so we went ahead with it for a few more of the nursing visits. When I went back to the surgeon for a follow-up appointment she saw the edges of the wound and flipped out because they "looked awful". I explained to her what we were doing and our thinking behind it. Although she had originally okay'd this treatment once she saw what it was doing she insisted that we stop it and got upset that we had started it "without her orders to do so". Being that the surgeon was so incredibly displeased, we stopped using the silver nitrate, even though my nurse and I believed that it was an ugly yet necessary step toward the ultimate healing of the wound.
The wound care surgeon finally decided to take me off of the Prisma and switch me to a Calcium Alginate dressing that had Silver in it. The dressing is supposed to absorb the drainage from the wound and as that happens the dressing will form a gel which is supposed to keep the wound moist for optimal healing. The silver that is in the dressing is supposed to help protect the wound from a very wide variety of bacteria to hopefully prevent an infection.
None of these things that the surgeon was recommending were helping me so the visiting nurse said that she had a contact with a nurse that specialized in wound care and she would like to bring her to see me to see if she had any suggestions as far as what would close this wound. This was when I decided to do something that would potentially help myself and agreed that the wound nurse could come to the following visit with my regular nurse.
When the wound specialist came to my house with my regular visiting nurse she wanted some background information on what we thought caused this wound in the first place and also what we had tried to use to get it to heal on its own. We answered all of her questions and then she got down to the business of looking at the wound. When she saw the wound she almost immediately knew what the problem was. My wound had developed very thick rolled edges on all the sides.
The wound care nurse explained to me that what had happened was that the epithelial cells had migrated down around the wound edges, the edges were healed so my body thought that the wound itself was also healed. It was explained to me that the only way that the wound would heal is if we got rid of those edges so that the epithelialization of the wound surface could occur. She suggested that we begin using silver nitrate on the wound edges. She told me that basically it would "melt" away the edges of the wound to convince my body that it needed to continue to work to heal the wound. While none of this sounded like it was going to be any fun, I agreed that it made logical sense and I was willing to give it a shot.
My visiting nurse went ahead and called the surgeon to run the idea by her and to get the order so that we could get the supplies. While the surgeon did not seem to think that it was a necessary step she did not object to us giving it a try. The supplies were ordered and a few days later my nurse applied the silver nitrate to the wound edges. When she first put it on it stung for a minute, but it did not feel nearly as terrible as I was warned that it would feel so we went ahead with it for a few more of the nursing visits. When I went back to the surgeon for a follow-up appointment she saw the edges of the wound and flipped out because they "looked awful". I explained to her what we were doing and our thinking behind it. Although she had originally okay'd this treatment once she saw what it was doing she insisted that we stop it and got upset that we had started it "without her orders to do so". Being that the surgeon was so incredibly displeased, we stopped using the silver nitrate, even though my nurse and I believed that it was an ugly yet necessary step toward the ultimate healing of the wound.
Friday, February 24, 2012
Being My Own Worst Enemy
By this point it was March 2010, and my surgeon and my nurses were not seeing a whole lot of improvement to the wound. During one of my appointments my surgeon gave me the instructions to continue using the Dakin's solution except this time she wanted the dressings changed on a daily basis!! I went home from that appointment in a really terrible mood, I mean how could she instruct us to do something that was clearly not working? Then to add insult to injury to tell us to do it even more often?! While I was upset with these instructions I STILL chose not to say anything to her about it other than "oh, okay sure" and then to tell my nurses the new instructions later either during a phone call or at the next visit I had with them.
The visiting nurse and I followed her instructions for a Very short period of time and then, my nurse blew a gasket. The nurse had been seeing me basically since the beginning and she was finally at her breaking point. She had, had it with the doctor's useless instructions and had completely lost all patience. That is when she told me that in her opinion I should go back on the Wound VAC because that was really all that the wound was responding to. This was the nurse that I trusted the most out of all of the different ones I had seen. She knew her stuff and all of her suggestions had been good ones so I agreed that her idea sounded logical. The nurse, however, was unable to put me back on the VAC without a doctor's order. She tried to get in touch with the surgeon to discuss it with her, to no avail. That is when my nurse called my regular doctor to explain the situation. My doctor listened to the nurse and when she was asked to send Wound VAC orders she did it no questions asked. Finally, maybe we were going to get somewhere with this wound, I thought.
I was on the wound VAC for a about a week when I went back to the surgeon, that is when she saw that I was on the VAC and knew that she did not give those instructions. That is the first time I remotely vented my frustrations and said anything to her about her suggestions not getting us anywhere. The wound was measured and it was suddenly a little bit smaller, I was happy with this news but very cautiously optimistic. I knew that we had a very long way still to go and my gut feeling was that it was going to be a very bumpy road. While I listened to those feelings I still chose to ignore all signs that I should seek a second opinion, even just an initial consultation. I was again continuing to be my own worst enemy.
My entire family felt turned upside down by this entire situation. While I was not getting myself another opinion despite all the signs that pointed toward needing one my parents were distraught. They were stuck between the proverbial rock and a hard place, knowing that things were not going well and feeling terrible about it, yet unable to give many suggestions because I am an adult and am capable of making my own choices. I also have always hated feeling like people were pitying me, there's nothing worse in my opinion. In hindsight, I guess that while I was the patient they were really going through the entire ordeal right along side me.
I was not on the Wound VAC very long when the surgeon decided to take me off of it. Again, I was unhappy with her decision but I had sunken back into my shell and would not voice my opinion to her. She then instructed us to cleanse the wound with normal saline and to then use the Prisma all over again, three times a week. That meant I would either have to see her once a week and the nurses twice a week or to see the nurses three times a week during the "off week" from the doctor. Although, we were all unhappy with the way things were going (or weren't going) the nurses and I continued to follow the surgeon's wound care instructions.
However, by this point we were nearing the end of the year and were running into an insurance situation. My insurance only allows for a certain number of nursing visits annually and we knew that I would not have enough left to get me through the year. That is when my nurse and I called a family member and asked if she would be willing to help out with a few of the dressing changes. The family member is not a nurse, however, she had previously cared for various wounds that her husband had so we figured she could handle it. She agreed to come to my home for the following nursing visit so she could be shown what to do. That all went very well and she did not have any problem filling in for a couple visits, just to get me through the end of the year.
Wednesday, February 22, 2012
Is Anything Going to Change
When I was taken off of the Dakin's solution I was thrilled. Not only would I no longer have to worry about my clothing and bedding being bleached-stained but I thought that we were finally moving onto a more effective treatment. The surgeon had cultured the wound and an infection was discovered. While I obviously was not pleased with this new information I figured it was just par for the course. I was placed on Bactroban Cream, a type of topical antibiotic ointment to treat the infection. In addition, the surgeon also instructed that we use a different type of dressing. The dressing that she recommended was something called Prisma. The intention of the Prisma is for the dressing to absorb any gross discharge the wound may be producing, it also has Colligen-like properties that in time would assist my body in closing the wound.
My surgeon decided that she was going to take me off of the Prisma because while it was helping, it was not giving us the desired results. Her next plan of attack made me incredibly upset because, you guessed it, she put me back onto the Dakin's solution, to be changed three times a week all over again. The solution that firstly was not what my wound should have been treated with and secondly was setting me into an emotional tailspin. I was devastated that we were in my opinion taking yet another step backward. I was yet again stuck having to deal with this Dakin's solution staining everything it came into contact with. The only positive about using it this time was that the risk of damage to the surrounding tissue was taken into account so we were using a skin barrier to protect it.
I was by this point feeling incredibly discouraged about the entire situation. I had had the wound for approximately a year and a half and aside from very minor changes it was not doing any better. The doctor kept recommending the same types of therapies that were just not being helpful. I had basically no quality of life, because it was drilled into my head that I needed to keep pressure off of my wound as much as possible. I figured that if I was going to ever get better that I should listen to the doctor so I basically put any sort of social life on hold. I had spent the past year and a half stuck at home in the Cliitron bed, aside from a very few family events that I felt it was important I attend. This was when I think I began to feel so discouraged about the situation that I just shut down. My nurse was trying to convince me that we were wasting time and that I was not going to get any better if I did not seek another opinion. Logically, everything the nurse was saying made perfect sense, except that I think I was numb to the situation. While I was existing I sure wasn't living.
My surgeon decided that she was going to take me off of the Prisma because while it was helping, it was not giving us the desired results. Her next plan of attack made me incredibly upset because, you guessed it, she put me back onto the Dakin's solution, to be changed three times a week all over again. The solution that firstly was not what my wound should have been treated with and secondly was setting me into an emotional tailspin. I was devastated that we were in my opinion taking yet another step backward. I was yet again stuck having to deal with this Dakin's solution staining everything it came into contact with. The only positive about using it this time was that the risk of damage to the surrounding tissue was taken into account so we were using a skin barrier to protect it.
I was by this point feeling incredibly discouraged about the entire situation. I had had the wound for approximately a year and a half and aside from very minor changes it was not doing any better. The doctor kept recommending the same types of therapies that were just not being helpful. I had basically no quality of life, because it was drilled into my head that I needed to keep pressure off of my wound as much as possible. I figured that if I was going to ever get better that I should listen to the doctor so I basically put any sort of social life on hold. I had spent the past year and a half stuck at home in the Cliitron bed, aside from a very few family events that I felt it was important I attend. This was when I think I began to feel so discouraged about the situation that I just shut down. My nurse was trying to convince me that we were wasting time and that I was not going to get any better if I did not seek another opinion. Logically, everything the nurse was saying made perfect sense, except that I think I was numb to the situation. While I was existing I sure wasn't living.
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