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.
Tuesday, June 26, 2012
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.
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