Saturday, April 26, 2014

Turning Lessons into Action

January 23,2014 marked one year since I had been discharged from the wound care center. I felt that the one-year anniversary of my discharge was an appropriate time to make a visit to the wound care center to say hello and thank my surgeon. Of course, when I got there, my brain was not really connecting very well with my mouth so those words never really came out. In the months leading up to my one-year anniversary I had begun seeing a therapist to help me process my thoughts and to start to develop a plan for my future.


I was taking small steps but plans were beginning to form. The last few months I began to worry less about the wound re-opening. I felt that being that it had been fine for a full year I was pretty much home free. I was beginning to feel excitement for the future when I found myself in a situation that wound up being a test for my gut. In January, I found myself in my local hospital’s Emergency Room.


To make a very long story short I was very sick with a kidney stone and infection. Although, an urologist probably should have followed me, once I hit my late teenage years I was stubborn and for the most part stopped seeing doctors. So, when the emergency room physician asked if I have an urologist that I wanted called I said no. The doctors then called the urologist that they know works well with my primary care physician. When he saw my test results and examined me he said that he would do surgery to remove the kidney stone the following morning. At that point I was on pain medication and was probably a little “foggy” so I didn’t really object to delaying the surgery. Suddenly, late that night, the surgeon came in and told me he had changed plans and was bringing me to the O.R. right then.


I woke up from the surgery in the Intensive Care Unit where I was told that the surgeon was unable to remove the stone because he encountered pus and that I was in I.C.U because my blood pressure was very low, most likely caused by the infection. I asked what was going to happen about the stone because I knew it would have to be removed at some point. I also asked about the pus that was found and I felt that my father gave me the “G rated” version of what all had gone on. The next morning I was feeling a little better and just happened to notice the urologist in the hallway. He came in and told me how much pus he had encountered and that he had put in a stent so that the urine would be able to bypass the stone and that we would schedule the surgery for a few weeks later, once I had been on a round of antibiotics.


A couple of weeks after I was discharged from the hospital I went to the urologist’s office so that we could discuss my options for removing the stone. When I got there my opinion of the surgeon changed. Suddenly, his bedside manor left a lot to be desired. I was put off by it but chalked it up to his having a bad day and tried not to take it personally. We discussed my surgical options and I decided which option I wanted and he agreed that it was probably the right choice. Two days prior to the surgery the hospital called to ask all of the preregistration questions, that at this point I could probably answer in my sleep. Before hanging up with the hospital, I questioned that the surgery would in fact still happen on that day, even though a snowstorm had been forecast. I was told that the hospital takes the surgeon’s lead and that they rarely postpone due to weather. I was glad to hear that I was not going to be postponed because I was experiencing some discomfort and wanted the situation resolved as soon as possible. The day before the surgery I received a phone call from the urologist and he indicated that he believed that we should postpone the surgery for a few days due to the weather. I did not want to postpone the surgery so I did the best I could to advocate for myself. At that point the surgeon said that one of the reasons for possibly postponing was that a piece of equipment was coming from out of state and he did not think that it would arrive on time. I hesitantly agreed that postponing for a few days was an okay idea but that I did have one more question before he hung up. The reaction of the urologist was less than professional but I let it slide without calling him on it and just asked my question.


The surgery to remove the stone and replace the stent was uneventful and I was back at home relaxing by mid afternoon after making a post-op appointment with him to remove the stent. The day he removed the stent was when I had my second gut feeling that maybe he was not the right physician for me. He didn’t explain any part of the procedure for removing the stent and while it is relatively simple, I still feel that it should have been explained to me prior to his doing anything. In addition, he did not numb the area, based on his (incorrect) assumption that I wouldn’t feel anything. I regret not calling him on any of this but I was so blindsided by his actions that I didn’t have it in me to say anything.


During this time I had been continuing to see my therapist and had been telling her what had been going on and that my plan at this point was to look for another doctor while continuing to take his advice to do a few more tests. My thinking was that his thoughts sounded plausible and his ideas to get more testing all made sense to me so getting tests done with him was fine because I figured results could always get sent to another physician if I chose to go that route.


One of the tests that the urologist wanted was for me to get an ultrasound done of my bladder and kidney so we could see if anything was going on that would possibly explain why I am still experiencing pain weeks after the stent was removed. The ultrasound was a few days ago and I tried to ask questions during the test but the technician said that he was unable to discuss my results with me. I was frustrated by this especially when I glanced at the screen and saw what in my mind looked very similar to the kidney stone when I had seen one of my CT scans. The technician said that it was part of my intestine. I had a weird feeling that I was being fed a line but I didn’t feel comfortable pressing for more information. After the ultrasound I explained to my boyfriend what had happened during the test and that I just had this eerie feeling that I saw a kidney stone. He suggested I call the urologist and while I understand why he suggested that, I had been told that he would call me if anything I needed to know about showed up on the ultrasound. As we were going to my house, I began to get a horrible feeling in the pit of my stomach, that something with my wound was suddenly not right.


When we got back to my house my boyfriend, looked at the area and his reaction was less than positive. After I saw a picture of what he had seen, I began to get really scared. After over 15 months of having absolutely no problems whatsoever, my wound looked like it had opened again. I sat up and looked at my boyfriend and told him that I was scared, really scared. People that know me, know that scared is not a feeling I express very easily either. He grabbed me in a hug, said he understood and then suggested I call someone. At that point I had no idea who to call or what to do because I had heard that my amazing surgeon from the Wound Care Center had changed his schedule and so he wasn’t there as often. I did end up calling the wound care center, only to be told that my surgeon had been there the day before and that he wouldn’t be back for a couple of weeks. I was not comfortable with waiting that long so I asked if the other doctor that I had seen a few times was there any time soon and was able to schedule an appointment with her for next week.


We then had to hurry up to get me to my appointment with my therapist. As soon as I saw her I damn near lost my mind. I explained that I have fears about what may have shown up on the ultrasound and then I dropped the big news that my wound had opened again. She told me that I should try to remain positive and that we seem to have caught this at the very beginning before it had a chance to turn into anything catastrophic. She also suggested that I email or call my wound care surgeon because it may make me calm down. I expressed that while I did want his thoughts, I was hesitant to contact him because I felt it was potentially crossing a boundary. She told me that she really felt like it would be acceptable for me to contact him so I did shortly after I got home.


When I received an email back from him, I vomited before I even read it. I had been nauseous since my boyfriend had discovered that my wound had opened and I guess I had kept it together until that point because I felt like I had to. Once I received the email from my surgeon though I felt like someone that knew what he was talking about and that I trusted completely, was aware of it I could relax and didn’t have to hold it together anymore. Upon seeing a picture of the wound, my surgeon agreed that having it seen by the other doctor was a smart idea. He also agreed that to him it did look pretty superficial. I am trying to remain calm until I can be seen at the wound care center and until I hear from the urologist regarding my tests.

Wednesday, July 24, 2013

Six Months Since Discharge!

I know that I have not blogged in a very long time, I could not let today go by without blogging though. Why today? Because it has been exactly six months since I have been discharged from the wound care center. I feel like today is a good day to give an update, as a way to sort of mark the day.


These six months have been a period of great transition for me. When I was first discharged I remember being terrified to tell anyone that I was healed. As the weeks went by though, I realized that eventually people would need to know, so gradually I began to open up and told a handful of people. The people that I intentionally kept it from the longest were my parents. I kept it from them as a form of protecting them in case it was going to open again in any sort of catastrophic way. Also, I was probably subconsciously protecting myself from having to see people disappointed. Once the cat was out of the bag and everyone knew, it was a relief, I physically felt lighter. Finally, I would be able to move on, or so I thought.


The switch from patient to then being the person that was helping take care of my boyfriend’s wound was actually relatively easy. Aside from loving my boyfriend and genuinely wanting his wound to heal, I was absorbed in wound care because so much information about it had been floating around in my head for so long. Of course, I went to every doctor’s appointment with him, because he wanted me there but also because of the relationships that had developed with the doctors and nurses that work at the wound care center.


Shortly after my boyfriend had been discharged I began to realize just how much this whole journey really affected me. When this journey began, back in January of 2009 I was of course bummed out that I had for only the second time in my life developed a pressure ulcer. I was upset that I had let it happen in the first place, and then of course it was really upsetting that I was going to be stuck in bed for the duration of the healing process. The wound of January 2009 only lasted a month though so looking back it was really not that big of a deal. When the wound developed in April 2009 I was beyond devastated. I really felt like I had been doing everything I could to prevent one from happening so I was caught off guard. I feel like although I may not have been entirely aware of it at that time, I began to shut down when I was told I had one again. I continued to do everything my doctor and nurses told me to in order to get the wound to heal, to a certain extent. I didn’t listen to myself when I originally got a weird uneasy feeling upon meeting the doctor at the first wound care center that I was treated at. I don’t know why I ignored the feeling, except to say that it was probably because I had never had a really bad experience with a doctor. As a result of sticking with that physician for so long I was further isolated. I could not leave my bed to really do much of anything. As such, I was forced to accept help from other people, which admittedly is something that I have never been very good at. To me, this wound meant a loss of independence. I had to rely on family members to give me the majority of my meals in bed and also to take care of cleaning my room for me; two things that I am incredibly picky about. In addition, I was completely isolated from everything outside of my room, let alone of my house.


Eventually, when I got fed up with the first doctor, I got another opinion which then lead to my going to the wound care center a couple of towns away, where I had very good experiences. After a couple of appointments with my surgeon he said to me that he didn’t even think that my wound was a pressure ulcer in the first place. The surgeon said that he thought the wound developed from a pilonidal cyst. While, I was relieved to hear that the wound may not have been directly caused by anything I did, I was more than a little annoyed that I was only hearing about this after having dealt with it for more than two years. The research that I did independently, due to my own curiosity explained that if it had been properly diagnosed at the beginning the cyst could probably have just been removed, leaving me with a small wound that would, with proper care most likely close on its own.


I never really told anyone how I was feeling, and I’m not sure why I kept it to myself. Of course my close friends knew, without me having to say much but as far as talking to anyone that could help me process some of those feelings, I never said anything. Having to rely on others instead of myself was a huge adjustment but honestly, having to rely on myself, now, post discharge is even more daunting. I am better now than I was, say two or three months ago but sometimes I still catch myself feeling hurt if someone does something that I consider making a decision for me. For example, at the beginning of the summer my boyfriend, parents, a few family friends and myself were going to attend a town wide concert. The day before the concert my boyfriend got in touch with me to tell me that unbeknownst to me my father had sent him a text message telling him to buy ponchos for us because it was going to be raining the entire time we were at the concert. I was angry that my dad had gone ahead and sent that message because I didn’t feel like it was his place. My boyfriend and I are adults after all and I didn’t feel like it was my father’s decision what he and I wore to a concert. I didn’t feel like I had to words to express how I was feeling to my father directly so I didn’t say anything. Instead my boyfriend and I got our own raingear and I did my best to just let it go.


The concert in and of itself was a huge thing for me to go to. I must admit when we first arrived I was a little bothered by the amount of people. It has to have been because I had been so isolated for so long that being in a crowd was overwhelming at first. Once I was able to calm down and relax I did have a really good time. As my boyfriend and I were leaving, I decided that instead of getting a ride with my parents I wanted to push home. The concert was less than a mile away from my house and I know that I have pushed from there to my house before and I wanted to prove to myself that I could do it. I told my boyfriend that I didn’t want us to take a ride and he said that was okay with him.


Though it took longer than I would have wanted it to take, I made it. It took a whole lot of tears and some positive self-talk and some rather colorful language but I did it. At one point my parents pulled over and asked if we were sure we didn’t want a ride and I insisted we were fine. When we got to my house I looked absolutely horrible because I was tired, and wet and I had the brilliant idea to get my face painted at the concert which due to all the tears the paint had run and smudged and looked gross. At first my parents were really worried that something had happened but I explained to them that it was something I HAD to do and that they would never really be able to understand.


Later I was talking to my boyfriend and said to him that I did it and he reacted by saying, something like “yeah no kidding, it isn’t that far”. At first I was crushed that he responded in that way, until I talked to my best friend who explained to me that what he probably meant was that he knew I could do it so although he was happy for me, in his mind it was never in question that I COULD do it. Once she said that, I understood and realized that she was probably right. I kind of took the accomplishment of pushing home from the concert as a sign that I Really was going to be okay.


For awhile, that was enough to get me to begin to adjust to my life again but I still find myself unsure about my wound really being okay, and in trusting myself to make all of my own decisions, many of which had been taken away from me while I was bed bound. Approximately a month ago I really began to feel depressed. I let it go for a little while and then I decided it was absolutely time to reach out to someone who could maybe help me process everything. I called my regular doctor and explained to her a little bit of what was going on and how exactly I wasn’t coping. She gave me a few phone numbers of therapists she usually recommends, after getting in touch with one of them, who was not going to be an option for me I was discouraged. Here I had made what I felt like was a big step and asked for help and the first therapist I called was not going to be able to help. I am now pondering the other names she gave me and will hopefully come to a decision soon. In the meantime, being that I cannot turn my brain off, I have decided to try to learn a language. I don’t really know what possessed me to pick Latin, but I find myself with a textbook and workbook so it’s actually going to happen. That was a decision I made by myself!



**This post was so emotional that I’m not even posting it on the exact six month since discharge date (7/23/13) anymore. Oh well, writing it this way was cathartic. :)

Monday, May 13, 2013

Changes

This post is delayed because I have been letting my thoughts simmer for a while. I had to really think about just how open and personal I wanted this post to be. I have decided that after writing so openly about my medical journey, that it would be unfair of me at this point to censor what has been going on with me both physically and emotionally.

My surgeon discharged me from the Wound Care Center on January 23, 2013. When he discharged me, I was happy that my wound was closed but also completely terrified that it would open again as it had previously. My visiting nurses continued to do weekly visits with me for approximately five weeks after discharge, to make sure that my wound didn’t open again. During that time I was still keeping the news of my discharge to myself. While a part of me was incredibly happy and wanted to shout it from the rooftops, another part of me was worried that if it opened again I along with my friends and family would be devastated and that was too much for me to think about.

During that time I was also regularly attending my boyfriend’s appointments at the wound care center so I was still incredibly submerged in wound care. My boyfriend was discharged from the wound care center on April 3, 2013 and since then his wound has remained closed. When we left his last appointment we figured that we could just get on with our lives again.

Unfortunately, getting back to our old lives would prove to be more difficult than I ever imagined it would be. My boyfriend seemed to adjust quickly, but that is probably because his wound didn’t have as great of an impact on his daily life. I however, have had more of a difficult time. First, I am incredibly paranoid about my wound reopening. No matter how many times my boyfriend and I check the area and see that it is still doing well, I cannot get the last time it opened out of my head, or the words that the surgeon said about its reopening could be related to osteo. Two weeks ago when my boyfriend was checking to see if the area was still doing well he told me that the wound was still closed but that something else had developed. I asked to see a picture so that I would know what he was talking about. What I saw was a hemorrhoid. On one hand, I was sort of grossed out by it but on the other hand, it was starting to put the pieces of the puzzle together. You may remember that I had previously seen a couple of streaks of blood after I have gotten off of the toilet but that my nurse had always said the wound was still closed. Suddenly, it seemed to me that the blood must have been coming from the hemorrhoid and that I had just assumed it was from the wound because that’s where my focus had been for so long. As ridiculous as it may seem, I was relieved to have a hemorrhoid.

My boyfriend was spending a few days with me last week and while we were having a discussion, without entirely thinking, I let it slip that I am really not transitioning very well at all. As much as my boyfriend is trying to understand, he is unable to put himself in my shoes. He said that he expects that I would be thrilled to not have to be stuck in my house any more. Logically, I get that he thinks that’s how I would feel but that really isn’t how I feel at all.

While, it is spectacular to be able to go out whenever I want to, it is also a really scary situation. I was basically stuck in my own house for the greater part of four years, unable to do much of anything. As such, it seems that I got used to being both inside and with being near only a handful of people at a time and also was very rarely by myself. Therefore, while he was here visiting, we had decided that we would be going out and doing things, partially, because it would be fun but also to try to get me out of my house. Due to his work schedule and my admittedly strange sleeping patterns he was more tired than either of us expected and so we did not really do anything for a couple of days. While we were discussing the fact that we had been stuck inside, I began to break down and try to explain that I was feeling like a prisoner in my own home and that it really stunk. As much as he tried to understand, he was unable to fully grasp what I was saying. He brought up the fact that nothing was stopping me from going out by myself and I did the best I could to explain to him that I had been with people for so long that being out of my house alone seemed daunting.

I find myself at this point wondering what I need to do to get myself out of this funk. It isn’t just that I am sick of being inside, which I absolutely am but I am also finding myself completely overwhelmed by large crowds of people. I think that it is because I haven’t been exposed to crowds in such a long period of time and that I will eventually readjust but wow, readjusting is really hard. This feels somewhat like a case of depression.

I have experience dealing with depression because I had it as a child and teenager, yet this case feels different in some ways. Depression when I was a teenager felt like I did not want to do anything at all, and it didn’t matter what I had planned for the day. In this case, I feel more stuck. Like I want to go out and do things and have experiences yet I am unable to actually follow through with plans. Maybe these feelings are rooted more in fear, than depression?

Monday, April 29, 2013

A (Happy) State of Confusion

The following day, when my boyfriend arrived he almost immediately checked to make sure that my wound was still doing well. We were both pleased when he told me that it was still closed and was beginning to look even better since we had started using the Zinc.

When my boyfriend and I went to the Wound Care Center for his appointment later that afternoon, the nurse was incredibly happy when she took the dressing off of his wound. She said that to her it looked closed and asked how long it had looked that good. My boyfriend said that it had looked that way for about a week and that it hadn’t been draining. I looked at his wound and was very pleased to see that it was in fact closed.

When the surgeon came in the room we spent a few minutes catching up because he had been away for a few weeks. He agreed that my boyfriend’s wound was healed and told him that he no longer had to keep it covered but that he should use moisturizer on it for at least the next several weeks. That sounded like an awesome plan. The surgeon then asked us what we were going to now with our lives being that neither of us needed to see him anymore.

At that point I spoke up and asked if he had heard that I was at the wound care center the previous week. I was surprised when he said that no he had not heard that and then asked me what had happened. I in turn was surprised because I thought that the nurses would have told him and also because I knew I had already blogged it and he previously told me that he was reading. I told him that the week before I was seen, my wound had opened and I had gotten really scared and wanted it checked. The surgeon then said that it was a very good idea to get it checked because it is always better to try to catch it at the beginning. I told him that that was exactly my thinking when I called to make the appointment. I also explained that it had closed by itself again before my appointment but that I went in because I was nervous.

The surgeon then told me that the nurse and doctor that had seen it the previous week must have been confident that it was actually doing well, or else they probably would have told him. I kind of assumed as much. The surgeon then proceeded to tell me that if it opens again I should definitely come get it checked because it “could be osteo”. I knew from previous experience that “osteo” relates to bone. I said that I would absolutely come back in if I were uncomfortable with how it looked. We left the Wound Care Center and began to live our lives again.

Things were going well for about a week when I suddenly got “that” feeling. The area was a little sore but it was mostly an emotional gut feeling that had me on edge. When my boyfriend came I asked him if he would please check and see if anything funky was going on. He looked and said that it didn’t look open to him but an area below the wound seemed to have formed a very small blister. I had no idea what to think of that news so I asked to see a picture. I saw something that may have been a very small blister but nothing was draining so I took the “wait an see” approach. On one hand I know that things need to be checked as soon as possible, yet I also didn’t have the horrible gut feeling that I usually get. We waited a few days and when my boyfriend next checked it he said that the blister seemed to have either popped or been absorbed by my body because it was gone but now that same area had a small piece tissue that had come off. We were unable to tell if it was just dead skin from a part of the blister or if somehow some of the scar tissue had sloughed off. We’re both rather confused by the situation but neither of us really feels like it absolutely needs to be seen. We are going to continue to monitor it to see if any other strange things happen, if so we will definitely get in touch with my surgeon.

Wednesday, April 3, 2013

An Update and a Wound-iversary

Approximately nine days ago while my boyfriend was here I asked him to check my wound again, even though I knew I was going to the doctor in a couple of days. I wanted him to tell me what it looked like so that I was as mentally prepared for the appointment at the wound care center as I could be.


What he saw was somewhat of a surprise; the wound appeared to have closed again! Part of me thought he was joking I thought that it was crazy that it had closed after I had freaked out and made the appointment to get seen and began to think that maybe I really should try to calm down. I asked my boyfriend what he thought I should do about the upcoming appointment. I did not want to go to the appointment looking like a paranoid freak, with absolutely nothing wrong, yet I wanted to catch something before it turned into a bigger problem. While leaving the choice completely up to me, he encouraged me to go to the appointment regardless of the fact that it looked closed to us. At that point I began to relax and then came to the decision that I should definitely get the wound checked out because their was a chance that while it had closed on the surface but that it still had depth inside. I also realized that I would probably find it hard to calm down if it weren’t checked.


The next day I was surprised when my phone rang and displayed that my favorite visiting nurse was calling. I answered and she told me that she was calling because she wanted to know how I was doing, what I was up to and to tell me that she was kind of missing me because I had been discharged a full month from their service. I told her that I was okay but that I was a little unsure of how the wound was doing. I explained that it had opened the previous week so I made an appointment to go get it checked but then it suddenly closed so I was sort of unsure about what I should really do. After she told me that I could have called her and she would have come to check it when it was open, she said that I should get it checked at the Wound Care Center so that I would know that it had in fact closed from the bottom up. I explained to her that although I knew she would have come to my house without a problem, that I didn’t want her to because of my horrible timing of telling my family that I had been discharged. My visiting nurse said she understood my point because she remembered the look on my parents’ faces when she first started coming again after I had been discharged previously.


The next day was my appointment at the Wound Care Center and I went armed with the photo I had seen that caused me to make the appointment in the first place. When I went in the nurse that was there was one that I’ve always been comfortable with and so I explained to her that I may have freaked out for nothing but I would rather be safe and get it checked. I showed her the picture and she said that I was right; in the picture the wound was open and did warrant being looked at. When the doctor came in I then showed her the picture and told her that to me it looked so similar to the time she had seen it previously that I was nervous and so here I was. The doctor looked at the picture and completely understood my concerns. When she went to look at the wound she said that it looked completely different than my week old photo and that she felt like it was closed again. She asked what I had been doing to take care of it the past week and I told her that I was just keeping it covered. She suggested that I begin to use some Zinc ointment on the area to prevent it from becoming moist and potentially macerated. She also did some re-education on the strength of tissue after a wound heals. Although I knew all of what she was saying, I knew that hearing it again was probably not a bad thing so I listened while she talked and the nurse gathered the supplies so that she could apply the zinc.


When I left the appointment I told my boyfriend exactly what everyone had told me and what I would need to do. He was relieved that I again seemed to be okay. I have pretty much been taking care of it myself, save for the few times my boyfriend has been with me and things seemed to be going well. Suddenly, I realized that April 1st was rapidly approaching. Longtime readers may remember that April 1,2009 was when this nightmare started. I found it somewhat hard to believe that finally April was approaching and I was no longer a wound care patient. Part of me wanted to be excited by this but a more jaded part of me was still somewhat unsure that I was actually done with this part of my journey.


My boyfriend happened to be with me that day and as requested he checked and the wound still seemed to be doing well. We went on with our day and tried to move forward. I can’t speak for him but I was somewhat hesitant to mention what the date was because of the previous setbacks. Last night (Tuesday) I thought that I may have again noticed some drainage but I am not entirely sure. My boyfriend is coming over in the morning and he has promised that he will check to make sure that I am okay, prior to us going to his appointment at the Wound Care Center. He says that his wound is doing well and that he is only covering it to protect it but that he expects that his wound care journey is coming to an end. I honestly, hope that it is, but then where will we go from here? I wish that I were as confident in my own wound as he is in his but I’m still only remaining cautiously optimistic due to the many setbacks that this wound has caused me.

Thursday, March 21, 2013

Boyfriend is Doing Well, I Need to Relax and Await Answers

My boyfriend and I continued to treat his wound with the Bactroban ointment and a gauze pad and just as the surgeon predicted, it continued to do very well. When we went back to the wound care center the following week even I was pleased with how small it had gotten. The surgeon was also happy with its progress and told us that we should continue using the ointment for a week and then after that just to cover it to provide some protection, by that point it would probably be closed. The surgeon said that he wouldn’t be able to see us for a few weeks but to make an appointment for three weeks later. We made the appointment for three weeks later and left.


It has now been a little over eight weeks since I have been discharged from the wound care center and approximately three weeks since my visiting nurses have stopped. I am still diligent about making sure that I do not stay in one position for very long and still periodically have my boyfriend check to make sure that my wound is closed. It was still closed after seven weeks so I decided that my dad’s birthday was when I was going to officially tell him the good news. I wrote the dates that I had been discharged, in his birthday card. He was incredibly happy to hear that I had been discharged, and while I suspect that he knew already, he did not say anything. My family and I were just starting to adjust to me being fully discharged when a few days ago I started to get a bad feeling.


I cannot explain what I felt, other than to call it a “gut feeling” I feared that my wound had reopened. I tried to remind myself that I had had that feeling before since I had been discharged and each time my wound had remained closed so I was probably just overreacting. When my boyfriend was here two days ago, I asked him if he would please check for me because I was really nervous, because the day before I thought I may have seen a little bit of drainage in my clothing.


As soon as my boyfriend saw my wound he said, “Yeah, it’s opened”. I was not surprised by what he said but I still needed to see it for myself. He showed me a picture of it and sure enough, a tiny portion, the same part that had opened previously was open again. I took a minute to just stare at the photo in disbelief that this had happened again. I was so upset that I could hardly form coherent thoughts to have a conversation with my boyfriend. At that point, admittedly I got a little more emotional than I usually do; all my boyfriend could do was hold me.


After a few minutes I needed some insight from someone that was a little more removed from the situation so I sent my best friend a text message. Explaining that it was open again and I had no more coping skills left and needed her suggestions. After she got over the initial shock, she suggested that I call the wound care center and see if someone could see me. She also told me that I should try to relax and zone out and forget about things for a while.

I was really upset that my wound had reopened; I also could not believe that it had happened just a few days after telling my family that I was fine. I realize it was just a coincidence but I couldn’t help but think that my making the announcement had somehow caused it to open again. By that point, I knew a decision had to be made about whom I was going to call. I decided to take my friend’s advice and call the wound care center and explain the situation. I did not want to call my visiting nurses because I knew that if one of them appeared it would instantly cause drama in my family and I could not put them through that again. When I called the wound care center the receptionist originally thought I was playing an early April Fool’s joke on them, once I explained that I was serious she began to check the schedule to see what could be done about getting me seen. She was able to make an appointment for me for the week before the surgeon comes back, with the doctor that I had seen when he was out of town before. She then asked me to hold on while she spoke to the nurse that I was most comfortable with at the wound care center. When she came back to the phone she told me that the nurse had suggested I just cover the wound with a clean dry dressing until I could get to the appointment.

My boyfriend covered my wound with one of the few dressings I have left, a Tegaderm Foam Adhesive and we just tried to relax and not worry too much. I go back to the wound care center next week so I am just trying to remain positive, until I get told just what is going on; if the part that reopened is just superficial or if it has depth and will therefore need more treatment.


Saturday, March 9, 2013

What The Hell is Happening Now?

I know it has been a long time since my last post. I apologize; it is just that my boyfriend and I do not live together and I haven’t actually been able to see his wound in person very often.



His wound was doing incredibly well; it was appearing much smaller and had no signs of infection. Just as I was beginning to relax, he threw me a curve ball. He sent me a text message two weeks ago on the day that he had an appointment at the wound care center. He told me that when he woke up, he discovered a blood blister directly above the wound and asked me what he should do to cover it because he was worried that the dressings he was using would cause it to pop. At first I thought he was just messing with my head and trying to get a reaction out of me by claiming to have a blood blister so I told him to prove it. Minutes later I received a picture of what in fact was a blood blister.


I took a breath and picked up the phone and called him. I asked what size dressings he had, hoping against hope that he had one that would be big enough and loose enough to cover the entire wound, including the blood blister, without being so tight that it would pop. Of course he did not have any of the type of dressing that I wanted him to use. I told him to just carefully cover the wound itself, avoiding the blister as best he could and then get to my house as soon as he was able so that I could put a more substantial dressing on it prior to his appointment that afternoon.


When he arrived at my house about an hour later I looked at his leg and saw that he had a weird shaped blister, more like one large one and then a small one directly next to it. The smaller one appeared to have ruptured but the big one was still intact and the primary wound did seem to be doing very well. I then loosely covered the entire “situation” with 4x4 gauze, knowing that it would be sufficient until his appointment a couple hours later.


When we got to the wound care center we told the nurse that the wound had been doing well until that morning when a blood blister was discovered. The nurse uncovered the wound and told us that the doctor would be in soon. We waited and when the doctor came into the room we explained what was going on and my boyfriend’s thoughts on what caused the blister in the first place.


The surgeon then said that he was going to test the fluid in the blister to make sure that it wasn’t showing any bacteria that would need to be treated. He poked a tiny hole in the blister with a small needle and aspirated some of the fluid. He then said that the wound should continue to be treated the same way we had been, with the Bactroban ointment and just a small piece of gauze to cover. He said that if the culture came back showing anything that needed to be treated he would call to let us know but that he wanted to see him again in two weeks.


My boyfriend took care of his wound for himself for almost the entire two weeks and kept telling me that he thought it looked like it was doing well. I was happy to hear that he thought it was fine, but I was also a little bit nervous that he would minimize it if things weren’t going well. I hoped though that he was aware of just how quickly things like this can go downhill and would at the very least tell me if it began to change. Two days before his appointment at the wound care center I asked if I could please see another picture, so that I could reassure myself that he really was “fine”. My boyfriend sent me the picture he had taken that morning and I was disturbed by what I saw. When I had last seen it in person, I noticed that the blister appeared to be flattened out and was looking more callous than blister. The picture he sent me showed even more of the dark calloused area. Admittedly, I flipped out when I saw the picture. In hindsight, I realize that most of my reaction was caused by not being able to clearly see what was going on. My boyfriend tried to explain to me that it “wasn’t that bad” and that it was only the blister that looked “kind of gross”. I wanted no part of his explanation and shut down the conversation. Not the best idea in that situation, but being that nothing could be done about his wound at that point, it was really not worth it to discuss it anymore.


A couple of days later we went to his appointment at the wound care center and I explained to the nurse that I personally hadn’t seen it in a few days but that I did not feel comfortable with how it looked. The nurse took the dressing off and said that the blister had flattened out and was now a callous. I took the opportunity to look at the wound in person for the first time since I had flipped out about the picture I had seen. When I saw the wound I was happy to see that it was not nearly as bad as it had appeared in the picture. When the nurse left I told my boyfriend that it was not as bad as I originally thought, but that it still, “wasn’t pretty”. A few minutes later the surgeon walked into the room and when he looked at the wound a really funny look appeared on his face. His face seemed to say, “What the hell happened, what do you want me to do about that and how am I supposed to work with that” all rolled into one facial expression. He then asked when it had become calloused and I stopped laughing so that I could tell him that it had begun about five days prior. The doctor then began to scrape away the calloused area and when he did he was pleased with how it looked underneath. He said that he was also really happy with how the primary wound looked. The doctor told us to continue treating it the same way we had been and that he wanted to see the wound in a week. My boyfriend and I left the appointment happy with how things were going and admittedly I personally, was still somewhat giggly because I still had the look of the doctor’s face in my head.