When Normal Test Results Are More Stressful Than Helpful & Why Won’t My Boyfriend’s Wounds Just Heal Already?

In the time since I last wrote, I have had several doctors’ appointments and have undergone various tests in hopes of finding some solutions to all of the medical issues I have been dealing with. I have seen an Infectious Disease Specialist, a Vascular Surgeon and have begun physical therapy for my wrist. I originally went to those appointments somewhat hoping that something abnormal would actually be found. It may seem somewhat strange to you but my thought process was that if the doctors could find an actual physical cause of these issues than a solution could be recommended.


One of the first appointments I had was with the Infectious Disease specialist. Being that, I had seen Infectious Disease specialists for various wound-healing issues and a few times for different kidney infections, I was not at all concerned about what he was going to do during my initial appointment. I sort of went into it as it being an information-gathering meeting. Of course I wanted him to fix the infection so that I could start feeling like myself but I was curious to pick his brain and learn what options I would have as far as a mode of delivery for any medication he would want to prescribe.


When I first went in I gave him the background on the kidney stone that had been removed eight months prior and all of the associated infection information. I also explained that I had been experiencing lingering back pain since even a month prior to the stone being removed. Of course I also told him the primary reason I was there was because I had been diagnosed with an asymptomatic infection approximately a month prior to seeing him that suddenly had me experiencing symptoms and that my urologist had concerns that the bacteria was resistant. The Infectious Disease specialist asked various questions about what symptoms I was experiencing and looked into which antibiotics I had been on previously for Urinary Tract Infections. I gave him a list of the medications that I had been on and when I was on them and also how I had felt on them. After looking into my medical record, he questioned about “The wound” that originally began this blog. I gave him a condensed version of what had happened and who had ultimately gotten the wound to heal. It turns out that the Infection Disease Specialist knows the surgeon that I had such a great experience with, what a small world! The infectious disease specialist suggested that I drop off a urine sample at the lab so that it could be determined if the bacteria that had shown up in the last urinalysis were still present or if it had changed. I was on board with that and asked what he was planning to do to treat the infection, he then explained that he couldn’t answer that without knowing definitively which bacteria he was going to have to treat. He also said that he wanted to look into some more diagnostic testing to see if he could find a reason for the recurrent UTI’s and also to see if my kidney was what was actually causing my back pain.

The diagnostic testing that he wanted me to have was just a simple CAT scan, which we were able to schedule for two weeks later. I went to the CAT scan knowing that the technician that performed the scan would not be able to tell me anything but confident that the Infectious Disease doctor would call me within a couple of days to give me my results and to help me decide where to go from there. During the time that I was waiting for the day of the CAT scan to arrive, I received a call about my urinalysis. I was told that the bacteria had changed to something that would respond to oral antibiotics. I was relieved by this information because I really did not want to experience having an IV or a Central line or PICC line again which I know is how they would have had to administer any type of intravenous antibiotic. I began taking the antibiotic and the symptoms of the UTI that I had been experiencing began to diminish. I continued to take the antibiotics for the prescribed time and a few days after my CAT scan was completed I made a call to the Infectious Disease doctor because I had not heard back regarding the CAT scan. When I spoke to him he informed me that my kidneys both look good and that he did notice some thickening of my bladder wall. He said that that was likely just due to the irritation of having to use a urinary catheter. He also told me that I have several gallstones but that typically they are left alone unless symptoms develop. I questioned if the gallstones could be causing what I was calling kidney pain and he said no because the gallbladder is on the right side of the body and my pain was in my left flank. We sort of left it under the understanding that he would forward all of my results to my urologist but that he was confident in saying my kidney was not causing my pain, he did recommend seeing my orthopedist in case something related to my disability was causing my pain. I am not entirely sure that I agree with him, what is a patient to do when a doctor is saying the body part the patient is concerned about is fine but the patient knows in their gut that it is not?


A couple of weeks later, I had an appointment with the vascular surgeon, as my podiatrist had suggested. As I have said, I didn’t want their to be anything catastrophic wrong with me but I was somewhat hopeful that the vascular surgeon would be able to come up with a reason for my lingering toe pain, even after the subungual hematoma had healed. I explained to the vascular surgeon, when the injury to my toe had taken place and the steps I had taken to get it to heal. When he examined my foot and lower leg he was unable to feel a pulse. I was not entirely concerned by this news, as I know that I have poor circulation and my podiatrist had been able to feel a pulse a few weeks earlier. The vascular surgeon said that he wanted to basically test the blood pressure in my lower legs and feet and that we would go from there. I went into another room with the person that was going to perform the test and was hooked up to several blood pressure cuffs and leads, all going into a computer. The test did not take very long at all and the results were immediately given to the vascular surgeon. He then came back and explained to me that whatever was causing my lingering toe pain was not vascular and he told me that he would forward the results to my podiatrist. Typically, I would be happy that nothing was wrong but I found myself feeling nothing but frustration. I left the appointment and explained to my boyfriend what the vascular surgeon had said and that I myself was beginning to question if this pain was in my head. My boyfriend agreed with me that it was possible but he doubted it because I am so in tune with my body.


This was also, right around the time that I had begun going to occupational therapy for my sprained wrist. It had been well over a month since my injury and I was still experiencing some pain and swelling. During my first appointment with the therapist she compared the size of my injured wrist and the functional strength of it to that of the wrist that I had not injured. She said that it was definitely swollen but nothing too terrible. She also said the area that was swollen felt squishy and that it was just fluid that my body would most likely just reabsorb. We spent the first several appointments with her just icing my wrist and massaging it in hopes that it would get the swelling to decrease. She explained to me that we wouldn’t really be able to do very much else for it until the pain went away and that once we could begin to move it we would have to go slow. While I understood where she was coming from and appreciated her honesty, I was becoming very frustrated because all of the copayments to see her were beginning to add up and I didn’t feel like she was doing anything that I wouldn’t be able to do for myself at home. Eventually, I had gotten myself mentally prepared to have that conversation with her when I realized, that although, it was still somewhat swollen, my wrist was suddenly not painful! When I went to her a couple of days later I told her that my wrist hadn’t hurt for a few days and that although I was continuing to ice it at home, it was still swollen. At that point, she and I began to do some gentle stretches and range of motion exercises in the hopes of both decreasing the swelling and hoping that slowly I would be able to move my wrist more normally.


All the while, I have still been helping my boyfriend take care of the two wounds on his foot. He has been seeing the other doctor from the Wound Care Center because the surgeon that we had both seen previously is changing his schedule so he hasn’t been as available. When the doctor first evaluated his wounds, she was thrilled that we had been told to use Iodosorb and a foam dressing to care for his wounds. During the initial appointment with her I explained that in my opinion the small one in the center of the callous was a puncture and that I wasn’t sure of the depth of it. She then decided to remove some of the callous so that she could better evaluate if the puncture had any depth or if it was mostly superficial. We were pleased to discover that it was pretty much superficial. I was very relieved because part of me feared that the puncture had formed a tunnel and I personally know what it is like to deal with a tunneling wound. After several weeks of doing the same dressings and the wounds beginning to look very good, the doctor proclaimed the puncture to be basically closed and the other one very superficial and although it looked healthy she was concerned that it was beginning to appear too dry. She instructed us to switch from using the Iodosorb on that wound to a Hydrogel so that the wound could gain more moisture. She asked to follow up in about a month and told us that she expected to be able to discharge him at that point.


I and too a lesser extent my boyfriend, continued to dress his wounds as the doctor had instructed and although I was happy with how they looked, I did not think that the puncture was as close to closed as the doctor did and I highly doubted that the other wound would enable her to discharge my boyfriend within the month. At approximately, the three week mark, I was doing my boyfriend’s wound care and was sad to discover that the wound we were trying to keep moist, had become entirely too wet and macerated. I then asked my boyfriend if he felt that I should continue to do what the doctor had instructed or if he wanted me to change what I was doing to something to help control some of the excess moisture. The reason we did not try to get in touch with the wound care center at that point was because in my experience they would have just asked him to come in the week before he was originally scheduled and he was unable to reschedule due to his job. My boyfriend told me that he wanted me to continue doing what the doctor had said and that she could change the orders the next week if necessary. I understood where he was coming from in the sense that it is not up to the patient to change the course of treatment but I was concerned that it would get much worse in the time we were waiting for his appointment. I explained all of this to him while explaining that I would not do anything that would harm him and that I would only change the plan if he approved. I myself have learned a ton about wound care and how wounds that are healing are supposed to look and so I didn’t doubt myself, as much as I was trying not to override my boyfriend’s rights as the patient. Ultimately, he allowed me to change his dressing from the Hydrogel to Calcium Alginate that I would put inside of the wound to try to help absorb some of the moisture, prior to putting the foam dressing on top of it. He was going to be at his house for the next few days and so I gave him some dressings as well as the Calcium Alginate and some Iodosorb and even the Hydrogel just in case the situation changed again. I asked him to please text me a photo of his wound a few days later so that I might be able to help him decide what he should be using.

Uncertainty

“My one purpose in writing is simply to provide a catharsis for my own thoughts. They worry me until they are set forth in words.” ---
H.L. Mencken



I usually only turn to this blog after I have the facts from my surgeon or one of my nurses. Today, however, is going to be a bit different. I have been going through a lot surrounding my wound and so today please allow me to use this to express my frustrations, fears, worry and joys.


Last week I had an appointment with my surgeon at the wound care center. Being that the previous week my surgeon had proclaimed my wound healed and my visiting nurses also seemed to agree I went into the appointment kind of feeling like I was going to be discharged, yet still sort of unsure about the situation. As a matter of fact, when I went in the nurse asked me if we had “sealed the deal”, in other words if my wound was closed. I told her that I thought so, I also told her about the communication that my nurse had received that caused me to be so incredibly cautiously optimistic the week before. The nurse understood why I had felt confused and when I told her the depth that was mentioned in the communication she told me that she was virtually positive that it was in fact an outdated communication, which I shouldn’t worry about.


When my surgeon came in and examined my wound he also said that it was closed and I was done, I was marginally more excited than I had been the previous week but was not anywhere near feeling the joy I felt the first time my surgeon had discharged me. Before I left the nurse and surgeon took a picture of my wound to document that it was healed and also to show me what it looked like. I never got to actually see that picture though because we got talking about another pressing topic that was taking over my life.


Several months ago I discovered that my boyfriend had a wound on his lower leg. He being a typical guy minimized it and was not at all concerned. I was worried though so I tried to encourage him to get it checked out if not by a doctor, at least by my visiting nurse. He refused and because I did not want to nag him I let the subject drop but only temporarily. Eventually, he agreed to let my visiting nurse take a look at it, he said it was because I was genuinely concerned but I personally think he just wanted me off his case. My visiting nurse, with me also being her eyes was sort of treating his wound off the record for a couple of months and then it healed.


Unfortunately, his wound did not stay closed. My boyfriend asked me if my visiting nurse would be able to take a look at it again, because this time it was draining. My boyfriend’s schedule however, did not mesh with when she was coming over so last week when he was with me; I offered to look at it. He allowed me to do that and once I did, I almost immediately said that it needed to be seen. I also recovered the wound, using calcium alginate to absorb some of the drainage and then covered that with a Tegaderm foam adhesive dressing. I then asked my boyfriend if he wanted me to call the wound care center to ask if he could be seen, ideally while we were both there later that day for my appointment. They were unable to fit him in that day but could schedule him for a week later.


All of this was on my mind during my appointment, so some of the time we were talking about my boyfriend’s wound and what I had done after I had seen it that morning. I explained what I had seen and then how I had covered it again. The nurse seemed to think that what I had done sounded like the right thing to do until the surgeon could see it. I then halfway jokingly asked her if she would kindly get some of this information out of my head, that I could not stop thinking. She chuckled and said no.


My boyfriend and I left the wound care center and as we were leaving I told him that I had been discharged but that this time I was really not going to tell anyone other then him at least until my wound stayed closed for awhile. I had decided this because I will never forget the shattered look on my parents’ faces when I had to tell them that it had reopened after seven weeks of being fine. When we got to my house I asked my boyfriend if he would take a picture so that I could see being that I never got around to seeing the one from the wound care center. I saw the picture and although I was still only cautiously optimistic I was happy to see it closed. A few hours later my visiting nurse returned my phone call and I told her that my surgeon said I was done but that they couldn’t get rid of me that easily because I was going to go back the next week with my boyfriend. My nurse was thrilled to hear about me but was disappointed to hear that my boyfriend’s wound had opened up again. She then told me that getting it seen was a good idea, not so much because of the drainage but because their could be an underlying cause of the wound. That was precisely my thinking also.


Two days later my visiting nurse came to my house and she was so incredibly happy to hear that my wound had closed that as soon as she walked into my room she turned on the music that was on her iPhone. She had decided that this visit was going to be a fun one. I was okay with that but also told her that I am trying to temper my joy with some realistic expectations, purely because I had become so devastated when it had opened. When she looked at the wound she also said that it was closed and then took a picture so that I could see it. The picture that she showed me was different from the one my boyfriend had taken just two days earlier. I calmly asked her what the darker part was and that it looked open to me. She said that a tiny part of it was open but that it had absolutely no depth at all and was not draining so she was still calling it healed and even decided not to cover it. When she left my brain started spinning. I was upset that it looked different in just two days and had no idea what to think about her not covering it again.


I did not have any drainage that I noticed for the rest of that day so I was sort of hoping that my nurse was right and that I was needlessly being paranoid. I spent the majority of the day in bed, this time because I had come down with a cold.


The day after that was when I began to get a really weird feeling that my wound had opened even more and was potentially draining again. I did not feel anything at that point so I tried to convince myself that my mind was playing tricks on me and that I needed to relax, especially because my cold was really making me feel crummy. I lounged in bed and when I wasn’t sleeping I was trying to zone out to the television. The thing that did pop into my head periodically was my boyfriend’s wound. His appointment at the wound care center was four days away and I was interested to know what it was going to be like to be on the other side of a wound care situation. That evening when I got out of bed I noticed something that may have been drainage coming from my wound, I was a little nervous but did not do anything about it. Again, my mind had been playing tricks on me and I was trying to convince myself that while I had the right to be concerned after all I had been through, I should also try to think positively.

Thinking positively is apparently not something I am very good at doing though, especially when I am stressed. That night, while having dinner my mother said something really funny and I started laughing so hard that my eyes started watering. Once that happened though the tears brought on by laughter turned to tears of stress due to being unsure about my wound and being concerned about my boyfriend’s wound. Of course my parents have no idea that any of this is going on so I was crying with a goofy grin on my face. It wasn’t that big of a deal but it did make me feel like a fool. Here I was having dinner with my parents; one minute laughing at my mother and the next minute crying about the uncertainty that was happening in my life. I am pretty sure that I will have a visiting nurse at some point tomorrow who will hopefully be able to tell me if what I noticed was actually drainage or if I really do just need to calm down.

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.

Being My Own Worst Enemy

By this point it was March 2010, and my surgeon and my nurses were not seeing a whole lot of improvement to the wound. During one of my appointments my surgeon gave me the instructions to continue using the Dakin's solution except this time she wanted the dressings changed on a daily basis!! I went home from that appointment in a really terrible mood, I mean how could she instruct us to do something that was clearly not working? Then to add insult to injury to tell us to do it even more often?! While I was upset with these instructions I STILL chose not to say anything to her about it other than "oh, okay sure" and then to tell my nurses the new instructions later either during a phone call or at the next visit I had with them.

The visiting nurse and I followed her instructions for a Very short period of time and then, my nurse blew a gasket. The nurse had been seeing me basically since the beginning and she was finally at her breaking point. She had, had it with the doctor's useless instructions and had completely lost all patience. That is when she told me that in her opinion I should go back on the Wound VAC because that was really all that the wound was responding to. This was the nurse that I trusted the most out of all of the different ones I had seen. She knew her stuff and all of her suggestions had been good ones so I agreed that her idea sounded logical. The nurse, however, was unable to put me back on the VAC without a doctor's order. She tried to get in touch with the surgeon to discuss it with her, to no avail. That is when my nurse called my regular doctor to explain the situation. My doctor listened to the nurse and when she was asked to send Wound VAC orders she did it no questions asked. Finally, maybe we were going to get somewhere with this wound, I thought. 

I was on the wound VAC for a about a week when I went back to the surgeon, that is when she saw that I was on the VAC and knew that she did not give those instructions. That is the first time I remotely vented my frustrations and said anything to her about her suggestions not getting us anywhere. The wound was measured and it was suddenly a little bit smaller, I was happy with this news but very cautiously optimistic. I knew that we had a very long way still to go and my gut feeling was that it was going to be a very bumpy road. While I listened to those feelings I still chose to ignore all signs that I should seek a second opinion, even just an initial consultation. I was again continuing to be my own worst enemy. 

My entire family felt turned upside down by this entire situation. While I was not getting myself another opinion despite all the signs that pointed toward needing one my parents were distraught. They were stuck between the proverbial rock and a hard place, knowing that things were not going well and feeling terrible about it, yet unable to give many suggestions because I am an adult and am capable of making my own choices. I also have always hated feeling like people were pitying me, there's nothing worse in my opinion. In hindsight, I guess that while I was the patient they were really going through the entire ordeal right along side me. 

I was not on the Wound VAC very long when the surgeon decided to take me off of it. Again, I was unhappy with her decision but I had sunken back into my shell and would not voice my opinion to her. She then instructed us to cleanse the wound with normal saline and to then use the Prisma all over again, three times a week. That meant I would either have to see her once a week and the nurses twice a week or to see the nurses three times a week during the "off week" from the doctor. Although, we were all unhappy with the way things were going (or weren't going) the nurses and I continued to follow the surgeon's wound care instructions. 

However, by this point we were nearing the end of the year and were running into an insurance situation. My insurance only allows for a certain number of nursing visits annually and we knew that I would not have enough left to get me through the year. That is when my nurse and I called a family member and asked if she would be willing to help out with a few of the dressing changes. The family member is not a nurse, however, she had previously cared for various wounds that her husband had so we figured she could handle it. She agreed to come to my home for the following nursing visit so she could be shown what to do. That all went very well and she did not have any problem filling in for a couple visits, just to get me through the end of the year. 

Two Steps Back

I think that I allowed the surgeon to go ahead and change my wound care because up until that point I had never really had an experience with a doctor being completely wrong about a course of treatment. Having said that, I ignored the warnings that my gut was sending me and went along with her plan to switch me off of the wound VAC and to let her prescribe wet to dry dressings, using a Dakin's solution.

Dakin's is a diluted bleach-like solution that in my case was supposed to be poured onto a gauze pad and then the gauze was supposed to be used to pack the wound. The idea of this is that as the solution is drying on the gauze any 'gunk' from the wound will stick to the gauze and then be removed the next time the gauze is replaced. The idea behind this 'mechanical debridement' is that by removing all of the unhealthy tissue and bacteria the wound bed will become more vital and able to regranulate better. The problem with it though is that there is no way to prevent the debridement from damaging healthy regranulating tissue. While this for the most part made sense to me I had a feeling that my wound was too deep to really get very shallow on its own and was mildly concerned that it would set back the healing instead of allowing it to progress.

When my visiting nurse came a few days later to change the dressing she expressed her concern that the doctor I was seeing didn't seem to be making much sense. While I agreed with my homecare nurse I still chose to continue seeing that doctor and following her instructions, much to the annoyance of my nurse. This is where I became my own worst enemy and just decided to be reactive to the situation and not proactive about any of it. My reaction to it was to just become potentially the most patient person on the planet. Despite the fact that I was beginning to truly believe that the doctor didn't know her Gluteous Maximus from her Humorous I continued to let her change the wound care instructions at will, and repeatedly kept telling my home care nurse to just give it a chance and to give my body time to heal. All that decision did was make a bad situation even worse.