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.

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.

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.

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.

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. 

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. 

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.