Trust my guts

Another one, Seriously?

2017-05-21T23:25:00.003-04:00

My boyfriend and I have spent approximately two years without wound issues. He did have a couple of unrelated surgeries which I was entirely too busy to write about. Additionally, I had a laparoscopic cholecystectomy back in January. Other than that though, I had moved on from being a patient with a chronic wound to becoming a full-time student. As I have been in school, my priorities changed and I had to desert the blog. I am back now though...

It started a few weeks ago with some pain in my hip area. I asked my boyfriend to look in the area and all he said was that I had some bruising but it did not look bad and that the skin was intact. While I was experiencing pain and bruising I did not really think too much of it. Frankly, I was entirely too busy focusing finishing my school semester.

While the pain did not really increase, I did experience some clear drainage for a day or two so I asked my boyfriend to look at it this past Tuesday. His reaction to what he saw was to say, "um yeah, you should get that checked out". I asked him to take a picture of it and show it to me so that I knew what I was talking about when I called the wound care center. What I saw honestly did not look that bad to me either but I knew it had the potential to deteriorate quickly. What I did see was, something that looked like the top layer of skin had come off and some small bruises in the center, the border of it looked more red and raw.

When I called the wound care center, they were able to see me on Thursday and I was instructed to stay off the area as much as I could.

At that point, it was just a matter of waiting a couple of days until my appointment, which I hoped would really turn out to be just another case of me being paranoid and with nothing actually wrong.

Sometimes Things Can be a Real Pain in the Neck

2015-05-02T16:49:00.002-04:00

While my boyfriend and I were waiting for authorization from his insurance company, he and to a lesser extent, I were continuing to treat his wounds with the Iodosorb and a foam dressing. Although, I want to be more involved than I have been, his schedule has required him to take more of the responsibility for his usual dressing changes. At his recent wound care appointment, his doctor explained that she felt the wound on the lateral (outside) part of his foot was doing so well and had become so superficial that she felt she would be able to glue it closed and then apply steri-strips to secure the edges of it. My boyfriend and I were pleased that at least one of his wounds was beginning to come along so the doctor applied medical grade superglue. His medial (inside) wound was also looking very good and the doctor told us to continue using the Iodosorb and the foam dressing. She then asked how the progress was with his new braces, which he then explained that he had received authorization and was just waiting to make the appointment. Although, I did not say anything at that point, I did feel somewhat blindsided by the information because I had repeatedly asked him if he had heard anything and was consistently told, “no”. To say that I was peeved, is an understatement, but I tried to take a step back and understand that all of this really was his responsibility and I should perhaps try to take more of a hands-off approach, especially because I had a lot of my own stuff to deal with as far as my shoulder was concerned.

By this point, I have seen three; orthopedists for my shoulder injury. The first orthopedist disagreed with the MRI report, based on her viewing the images personally, and also on the physical exam she performed on my arm. She said that in her opinion, I had not torn anything and what I had was a case of bursitis, and some early arthritis in the top of my shoulder but that ultimately, one of my muscles was just not as built up as she would have liked. She then recommended a cortisone shot to try to help my pain. I had had one previously, in my hip and I knew that cortisone shots were painful but that it had helped my hip so I agreed. I also agreed, because I had done some prior research and knew that getting one shot in my shoulder would be okay but that getting too many, could lead to any surgical repair being more difficult. I had originally, gone into the appointment, thinking that I would just hear her out and wouldn’t make any actual decisions but all of that seemed to go out the window. I think what happened was, I was thrown for a loop when she said that I did not have tendon damage and so I may have somewhat let my guard down. My initial thought was that I of course would not have gone ahead and scheduled any type of repair of the shoulder until I had at least gotten a second orthopedic opinion but maybe I felt that, that wouldn’t be needed so I went ahead with the shot. After I got the shot I went home and applied ice to my shoulder to try to minimize the pain and swelling and took it easy for the rest of the day.

I decided to get a second orthopedic opinion on my shoulder situation prior to beginning any physical therapy as a “tie-breaker” of sorts because the MRI report had said one thing and the orthopedist’s opinion was different. I went to the second orthopedist with copies of all the imaging that I had done of my shoulder and also the patient portal app that I had on my phone that documented everything from my initial orthopedist appointment. That orthopedist viewed the images and also agreed that it didn’t look like I had torn anything. He then did an exam of my shoulder, during which he asked me to move in all sorts of painful positions. At the end of all of this he explained the diagnoses he had come up with. According to him, I had Bursitis, a contusion of the shoulder, impingement syndrome and a neck strain. After hearing all of this I asked what my options are and was told that he could give me another cortisone shot but that at this time all he would recommend would be physical therapy. I accepted the cortisone shot because by that point I was more confident that I would not need surgery. I received the shot and left with the instruction to start physical therapy in about a week.

Of course while I was trying to handle all of the pain and inconvenience of having a shoulder injury, I was also continuing to assist my boyfriend with his wound care. His wounds in my opinion were beginning to stall in the healing process which somewhat bothered me but they weren’t really looking worse at that point so we continued to treat his wounds as directed, until I noticed something different. All of a sudden, when I was changing the dressings on his wounds, I noticed that some undermining was developing on one of them. I looked into the small opening as closely as I could, with the flashlight of my cell-phone and I realized that the undermining area looked to be very dry. Of course, I had learned all about moist wound healing so my first instinct was that something should be done so that the area could gain a bit more moisture. I explained to my boyfriend what I saw and what my thought process was and asked him if it would be okay if I called the wound care center and got some input on the situation.

When I called I spoke with the nurse that I communicate with very well and explained to her what I felt was going on. She then asked me what I wanted to do based on the supplies I had available. I told her that I would like to use Hydrogel in the new area and she said that if I felt it was too dry to go ahead and stop using the Iodosorb and to apply the Hydrogel. When I hung-up with the nurse I explained to my boyfriend what she had said and he said to go ahead with the new plan. I then had to figure out a way to apply the Hydrogel, which comes in a tube similar to a toothpaste tube, into a very small opening. After thinking it over for a minute, I decided that I could probably put some of the gel into a syringe and push it in that way. I was unsure if it would work completely as the diameter of the syringe was slightly larger than the opening I needed to squirt the gel into. I gave it a try and although I wasn’t sure if the gel went down as far as was necessary I knew that what I was able to get into it, would most likely help. Afterward, my boyfriend went home and I wasn’t going to see him or his wounds for a few more days. It ended up that I didn’t even get to see his wounds until the following wound care appointment. When we got there I was happy that we got the nurse that I had spoken to on the phone so I wouldn’t have to explain to a different nurse why we weren’t following the written orders. The doctor came in and told me that she had heard all about what was going on and what I had done. When she examined him she saw the part I was talking about and because the Hydrogel that I applied had done it’s job she told us to discontinue that and to go back to the Iodosorb, she also took a culture of his wounds because it had been awhile since one had been taken and she wanted to make sure that the new undermining area wasn’t caused by an infection.

The doctor called me a couple of days later and told me that some infection had shown up in the culture and she was considering putting my boyfriend on a topical antibiotic ointment. I said that it was probably a good idea based on what I had been seeing and gave the information for the pharmacy my boyfriend uses. I then called my boyfriend and explained to him what the doctor and I had discussed. He then told me that if we needed to do daily dressing changes while using the antibiotic, new supplies would need to be ordered because as it was he barely had enough to get him through until his scheduled visit to the wound care center. I was slightly peeved that he had forgotten to mention it at the appointment and though I voiced this annoyance to him, I also called the wound care center and asked that new supplies be ordered. It took several days for the pharmacy to get his antibiotic in stock so while we waited we stuck to the dressings schedule that we had been using.

By this point I had been going to physical therapy to try to decrease my neck and shoulder pain and to increase my range of motion. After a few sessions that consisted mostly of stretching, my physical therapist determined that in her opinion my first rib was slightly out of whack and she wanted to adjust it. Without entirely thinking it through, I allowed her to manipulate me so that my rib would go back into place. I went home afterward and actually felt somewhat better, almost like she had loosened something and although moving was still painful, I felt like I was able to move slightly farther. All of this continued for several weeks when I noticed that I wasn’t really getting any more improvement or pain relief. I had a follow-up appointment with the orthopedist after seeing my therapist for approximately seven weeks. During the appointment, we discussed that my shoulder pain was improved slightly but that my neck was still really bothering me, I also asked him if he thought my rib had been out of place and explained that my physical therapist had been doing some adjustments to it. He said that he didn’t feel that my rib was out of place at all but he recommended that we take a neck x-ray to determine a cause of my neck pain. When my orthopedist pulled-up the x-ray images on the computer, I myself was able to see that something didn’t look quite right. The orthopedist explained that I had a slipped disc in my neck. I was somewhat relieved that I had a real reason for being in so much pain and yet I was concerned because a slipped disc didn’t sound like a minor diagnosis. When I asked what should be done about it, I was told to continue therapy and that he would see me again if I felt I was still not improving after awhile. I continued physical therapy for about another week when I decided perhaps it was time for yet a third opinion. I called the orthopedist that my wound care surgeon had recommended and was able to get an appointment relatively quickly.

I am Sick of Being Confused and Frustrated

2015-02-22T02:25:00.000-05:00

It was approximately, two weeks later when finally the day of my shoulder MRI arrived. I went to the MRI a whole lot calmer than I usually am, due to a mild sedative that I had asked my primary doctor to prescribe. Ordinarily, I do not take any medication prior to an MRI but this time I decided that it was a good idea because I had been told that I had moved during the one I had on my wrist and I did not want any potential movement to distort the images. After the test I tried to relax for a few days and focus on celebrating the holidays with my friends and family. When my primary doctor’s office got in touch with me to discuss the findings of my MRI, I was told by my doctor’s Physicians Assistant (PA) that one of the tendons in my shoulder was partially torn and another was completely torn and that a third may have been involved. As such it was my doctor’s recommendation that I be evaluated by an orthopedist. My initial reaction to hearing that I had torn tendons was unfit for print but let’s just say it was rather loud and colorful.

It was a couple of days after speaking with my doctor’s office, when I was finally able to think clearly enough to process what the PA had told me, when suddenly, what she had said didn’t seem to make sense. I contacted my doctor’s office via the patient portal and asked that my physician call me so that I could speak to her directly for clarification. When she called me back, my primary question, was how the method of injury corresponded with my diagnoses; because to me it didn’t seem like banging the back of my shoulder would have actually torn a tendon, let alone two and potentially three. My doctor, told me that I was asking a very good question and the only thing she could come up with was that I had slightly and only momentarily dislocated my shoulder, which had damaged the tendons, but that I should ask the orthopedist that question. I made an appointment with the orthopedist that my doctor recommended for the following week. While I was waiting for the day of my appointment to arrive, it occurred to me that if I had actually torn tendons that the usual treatment is surgery. I have finally learned though that second opinions are useful and so I reached out to my former wound care surgeon to see if he would be willing to recommend an orthopedist. It may seem strange that I contacted my wound care surgeon for an issue with my shoulder and maybe it is, it’s just that I have such a level of trust with him and obviously, he knows surgeons that have other specialties, my theory, was really, what did I have to loose?

During this time, boyfriend and I have continued to use the Iodosorb to treat his wounds and although they are not healed yet, his cultures haven’t shown any infection that needs to be treated. While this is clearly, good news, the doctor has suggested that he get evaluated for new braces because perhaps the fit is contributing to his wounds. While my boyfriend agreed that the evaluation seemed like a good idea, he kept putting off being evaluated. By then of course I was frustrated that my boyfriend’s wounds were not closed but I was more frustrated by his failure to be evaluated for new braces. My thought process was, if there is something that could potentially help his wounds heal and also prevent more from forming in the future, why the heck isn’t he getting it done? During his wound care appointment a few weeks ago, my boyfriend’s doctor, asked him both what was stopping him from having his braces evaluated and what they could do in order to help facilitate it. My boyfriend said that making an appointment that corresponded with his work schedule was a challenge but that he didn’t really need anyone at the wound care center to do anything to make getting the evaluation any easier. The doctor, told us to continue treating the wounds as we had been but that she really wanted his braces evaluated. She also turned to me and I think half-jokingly told me to make it happen. While she may or may not have been half joking, I took her seriously, because I understood where she was coming from in explaining that nothing she could do would help him if he didn’t take care of the root cause of the problem.

I let all of this go for a couple of days, hoping that my boyfriend would step up and do what everyone felt needed to be done. While I was waiting, I was also stewing to myself and talking to the therapist that I have been seeing for approximately a year and a half. After hearing her out and really considering all that she had said about my boyfriend and I each having different “roles” in our relationship that we tend to excel at, I decided on a plan. I determined that pleading with him to make his own appointment hadn’t been successful, which in my view left me with two options. I could both sit and do nothing about it and potentially, “let him fall on his ass” metaphorically speaking, Or I could offer help. I chose the latter, which I am pleased to report that he took me up on. Knowing, his schedule and all of our commitments for the near future, I was able to call and make him an appointment so that his braces could be evaluated. My boyfriend also allowed me to speak with his wound care doctor to request that she call the place where he gets his braces adjusted so she could give her medical opinion on his wounds and what adjustments may potentially help.

My boyfriend and I went to his braces evaluation together approximately one and a half weeks ago during which he and I did our typical “dance” of him explaining what is happening and me sitting silently and just observing. I think this tends to be my modus operandi because I have very strong boundaries when it comes to people speaking up for me and therefore am hesitant to do it for others, yet in this instance I do not think it was a wise decision. What ended up happening was little more than a colossal waste of time. Two things were done during this appointment, one of which was for a portion of his brace to be smoothed out so that it didn’t cut into his skin anymore. Of course that was a wise decision because his skin under that area of the brace is starting to wear down but it is not on his feet where his actual wounds are, although I do realize that smoothing that portion may help prevent his skin from breaking down further. The only other thing that happened was that my boyfriend was told that the company needed to contact his insurance company so that they could obtain authorization for new braces. It is my belief that this could have been done prior to his appointment because now he will have to go back at some point after insurance approves new braces so that he can be measured and casted for them. We are now waiting to hear back from either the braces company or his insurance company with either an approval or a denial of his new braces. Personally, I am not worried about his insurance company denying his request because he hasn’t gotten a new brace in several years and this one is clearly not fitting properly, I am just frustrated by yet another delay.

Can Things Get Anymore Absurd?

2015-01-31T00:28:00.002-05:00

I am so sorry that it has been so long since I have updated, things got kind of hectic for a while and I temporarily needed to focus my mind on more pressing things than on updating you all. That said; buckle your seatbelts because I am about to unload just some of the absurdities of my situation to you all.

Approximately a week later I got the chance to look at my boyfriend’s wounds again and discovered that it had changed how it was responding to the treatments we were using. When I attempted to remove the Calcium Alginate from inside the wound I realized that it was sticking, as opposed to easily disengaging. To me that was a sign that the wound was no longer moist enough to warrant using Calcium Alginate and something else needed to be used to care for the wound. I then told my boyfriend what I felt like was happening and that it was my opinion that we should again put the Iodosorb in so that some of drainage would be absorbed but that a portion of it would react with the iodine and form a gel so that the wound wouldn’t become too dry. My boyfriend at that point said it was okay with him if I again changed what we were doing because his wound care appointment was a couple of a days later and we would be able to get professional advice then.

When my boyfriend and I were on the way to his appointment I asked him if he wanted me to explain to the doctor why we were no longer following her directions to care for his wounds. My boyfriend said that he absolutely wanted me to explain our thought process to the doctor so I went into the appointment with him ready to explain and yet also somewhat nervous that the doctor would be upset that we weren’t listening to her. When we got to the appointment my boyfriend and I explained what had changed and what we were doing to the nurse so that she could document all we had done as well as photograph the wound for my boyfriend’s records. When the doctor came in she told us that she had seen a picture and that we were right it did look different. I then told her what it had looked like the previous week and hesitantly, the steps we had taken to take care of it. The doctor told me that she liked the change I had made and that it was okay that I decided that because I, “know wound care”. I was relieved that she didn’t feel like I was overstepping and also that she agreed that what we had decided to do was the right decision. She then told us that she was somewhat concerned that its wet and somewhat macerated appearance was due to an infection although we all felt that was unlikely because my boyfriend had no other signs of infection. A wound culture was taken and we were told to continue treating the wounds as we had been and that she would call if the cultures showed anything that “impressed her”. We made a follow-up appointment for two weeks later and left hoping that we would not receive a phone call saying that he needed to start antibiotics.

It was around this time that I experienced a freak accident. I was getting into the passenger side of my boyfriends car as I always do when somehow I managed to bang the back of my shoulder incredibly hard on the doorframe. My boyfriend who was outside of the car at the time actually heard the impact and was at my side seconds later asking what had happened. After a minute, when I was able to get words out, I told him what had happened and that I was in a considerable amount of pain. My boyfriend then quickly put my wheelchair in the trunk and got in his car so that we could decide what needed to be done about my shoulder. I explained to him that the point of impact was on the back of my shoulder in the area where the arm meets the shoulder but that I also had pain radiating up my neck and down my arm, about half way to my elbow. My boyfriend then looked at my shoulder to see if it looked swollen or was beginning to bruise. He told me that it looked fine but that it was up to me what I wanted to do as far as treatment. I decided that we would just go back to my house where I would apply ice and take some ibuprofen. I did that, knowing that it was important to try to prevent or at least decrease swelling. A few hours later, before my boyfriend left, he asked me what I was planning to do as far as my shoulder because the Ibuprofen and ice hadn’t really helped my pain. I told him that I was just going to go to bed and would reevaluate it in the morning. I went to bed anticipating feeling muscle soreness the next day but not really anything more than that. Unfortunately, after five days of regularly icing my shoulder and taking ibuprofen on a schedule, my pain had not gotten any better. I knew it was time to make an appointment with my primary physician.

I was able to get an appointment with my doctor for the next morning, which my boyfriend brought me to. When I saw her I explained to her what I had done and also handed her a rough drawing of my injury. She found my drawing helpful and after examining me she told me that she could feel a very severe muscle spasm and said that she was going to give me a prescription for something stronger than regular ibuprofen. My doctor also told me that she wanted an x-ray of my shoulder, although she felt it was highly unlikely that I had broken anything. As it was much more likely that I had done some damage to the tendons or ligaments, she explained that she was going to have her office staff contact my insurance company, regarding authorization for an MRI.

After I left her office my boyfriend and I dropped my prescription off at the pharmacy and proceeded to get an x-ray. When I went to get my x-ray, the technician asked me how I felt like it was going to be easiest to get the views they needed, while also trying to prevent my pain from getting worse. I explained that while I understood it was unlikely to work, that I would prefer to stay in my wheelchair. The radiology technician was unsure if that would work so she asked one of her coworkers into the room so that we could brainstorm. Ultimately, we decided to try it with me in my wheelchair and see if the images were clear, I was happy to hear that they could view what needed to be seen and that I was not going to have to transfer out of my wheelchair. I waited a couple of days for the results of the x-rays before I heard back from my doctor. I was told that the x-rays had come back negative for fractures and also for signs of a separation. At that point, I wasn’t being told anything other than what I already assumed. Then it was just a waiting game, while I waited for authorization for the MRI. For a few days during this time, my mind did start to wander into the “land of pity party” while I do not like it when other people pity me, I couldn’t help but feel somewhat sorry for myself. Here I was, still in a splint months after injuring my wrist so my mobility had already suffered when I suddenly injured my shoulder causing me to be nearly completely immobile. Luckily enough, I do have a support system in place so I was able to rest and let other people take care of me to a certain extent, all the while, helping to monitor my boyfriend’s wounds.

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

2014-12-07T23:02:00.000-05:00

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.

Why Can’t I Just Be Pain-Free and Healthy? Dealing with Several Issues (PART 2)

2014-10-22T00:10:00.000-04:00

After soaking my toe in warm water daily, with absolutely no improvement, I followed up with the podiatrist’s partner one week later at the wound care center. When I got there, the nurse that I had always been most comfortable with saw me. She examined my toe, and said that it looked really healthy; that she didn’t see any signs of infection and that it seemed to be healing well. I told her that I agreed it did not seem to be infected but that my pain has not changed at all. At that point I attempted to pick her brain to see what she could come up with for possible causes of my discomfort and what solutions she may have. She was completely stumped and said we would have to ask the podiatrist. When the podiatrist examined my toe he was thrilled with how it looked, I explained that I was still experiencing pain and nothing I was doing was relieving it.

His only suggestion was to cut the toe off of an old pair of sneakers so that it wouldn’t have any pressure on it. I am not sure why I didn’t press further, but the fact is, aside from that appointment I hadn’t really been wearing shoes at all and was still in pain so I did not really think that destroying a pair of sneakers was going to help. The podiatrist sent me home with instructions to cover the toenail area with Silver Gel and to cover it with a band aid and a very small dressing that is the equivalent of a compression stocking, to help the swelling. He also recommended that I return the following week so that my original podiatrist could see me. After that, the nurse came in to apply the dressing to my toe. While she was doing that, she explained that Silver Gel is basically Bacitracin that has silver in it, which as I know by now, has antimicrobial properties. I left confident that I would be able to adequately care for my toe until I could be seen again.

During the time I was waiting for my appointment with the podiatrist, several other health issues needed to be addressed. Firstly, I had two appointments with the orthopedist regarding the pain in my wrist that was not decreasing, though I was on the prescription dosage of Ibuprofen and had been using the splint regularly. During the first appointment he had told me to just wait it out a few more weeks, unfortunately, waiting it out did not seem to be helping. When I went back to the orthopedist he examined my wrist and then left the decision as to the next step up to me. He said that it was certainly reasonable to wait it out a little longer yet he also explained that getting an MRI scheduled was absolutely warranted. I decided to schedule the MRI firstly, because I really did want answers and secondly, I figured with scheduling the way it usually is, my wrist would have time to feel better prior to getting it, which would enable me to cancel the test.

Awhile back, my urologist ordered a routine urinalysis because I am still looking for a cause of my lingering back pain. A few days later I called the urologist’s office, after receiving my lab results via the Patient Portal that my local hospital has. While I as a patient, do like that I personally get to see my results, along, with a chart that gives the normal ranges of numbers. The lab results from the patient portal of course do not erase the need for a physician, both to explain things to me in plain English and also to call in medication if necessary. When I spoke with the nurse, she said that my urologist was wondering if I was experiencing any other symptoms that would indicate a Urinary Tract Infection (UTI). I then explained to her that the only symptom was the back pain but no new symptoms had developed. She then explained to me that the reason she was asking was because my urologist was wondering how I felt about Not treating the infection if I was asymptomatic. The doctor’s concern with treating my infection was that I was becoming resistant to antibiotics that he was able to prescribe and so treating the resistant bacteria would be the job of the infection disease doctors. I explained, to the nurse that I felt like not treating it was the wiser decision at that point and that I would call the office if any symptoms developed.

All the while, my boyfriend informed me that he had wounds on his foot. Seriously, how much more medical drama could I be expected to handle? I admittedly, ignored my boyfriend’s wounds for a couple of weeks, because I was dealing with my own stuff. I also know that my boyfriend, while stubborn at times, was not going to let a wound get out of control so a part of me didn’t feel all that bad for somewhat ignoring his needs. When I did get asked to look at them, I did and saw two wounds, both of which were caused by his ill-fitting braces. I knew that my boyfriend had already gotten his braces adjusted so that they would hopefully no longer add to the problem. I then examined the wounds; the first one was open but had very little depth and to the best knowledge was not showing signs of being infected. The second wound, looked like a very small puncture in the center of a large callous. While the second wound appeared smaller than the other wound, it actually worried me more. I was concerned because I could see that it had some depth but due to its size I was not able to visualize exactly how much depth it had. I then covered both of his wounds with Bacitracin and put one of the only dressings I had on them. At that point we decided to call and schedule an appointment at the wound care center so that my boyfriend could be evaluated and we could be given some appropriate dressings. When I called to try to get an appointment for my boyfriend, we hoped that one would be able to be scheduled with the same wound care surgeon that we had both grown so comfortable with. We were pleased to hear that the surgeon was scheduled to be at the wound care center the following week so an appointment was scheduled. It seemed to me that we were going to be spending the day at the hospital because that day was when I was also scheduled to see the podiatrist.

The day before my boyfriend and I had our appointments at the wound care center was the day that I had the MRI of my wrist scheduled for. I went to the MRI appointment not at all worried about the test, mostly because I had certainly had MRI’s before but also because I had several other concerning things on my mind.

That week, I had noticed that I was starting to develop signs of a UTI; of course I had already been warned that the cultures had come back indicating that I had one so I was not surprised when suddenly I noticed that my urine was cloudy and had an odor to it, what did surprise me and temporarily scare me however, was when I noticed small amounts of blood in my urine. Of all the UTI symptoms the blood was of course the most concerning, until I remembered that with all of the Ibuprofen I had been taking, it was possible that the medication itself was causing that particular symptom. I mentioned all of this to the nurse at my urologist’s office and she agreed that it was possible that the Ibuprofen was causing the small amount of blood and as such she suggested I try to ease up on the dosage if it was at all comfortable. She also recommended that I have a consultation with an Infectious Disease doctor at my local hospital because, the previous bacteria was resistant. I did ease up on the medication and the blood in my urine eased to exist, at least to the naked eye. I also called and made an appointment with Infectious Disease, just to cover my bases.

In addition to the kidney pain and my painful wrist, I was of course following up with the podiatrist for my painful and still swollen toe. When I got there I casually mentioned all of the other health issues that were going on. When the podiatrist looked at my toe she was incredibly pleased with how it looked. The hematoma was gone and the nail was beginning to grow in nicely and I showed no obvious signs of infection. I then asked her why she thought I might still be in pain and she was somewhat unsure. It was then that she asked me if I had any other symptoms that might seem unrelated, that she would be able to use. After thinking for a minute I told her that I had been having some muscle spasms in the calf of the leg that was having the toe issue. At that point she excused herself to go talk to the other podiatrist, when she came back, she had a business card with her. She suggested that I see a vascular surgeon just to rule out anything that could be fixed. She also said that if the vascular surgeon was unable to help that I should seriously consider going to a pain specialist. Clearly, I had some things to think about and maybe even some doctor’s appointments to make, that would have to wait though, because an hour later, my boyfriend had his appointment with the wound care surgeon.

During his appointment we both explained what had caused his wounds, what we had been doing to treat them and that the issue with his brace, which caused them had been fixed. During the evaluation, the wound care surgeon voiced his concern that the situation was not entirely fixed because the callous was still present. The small wound that was on the callous was considered closed, too the wound care surgeon. I am currently slightly worried that it has more just formed a scab but that the puncture depth may still be a problem. The only reason I can come up with for not voicing my concern was that I somewhat felt like it wasn’t any of my business. If my boyfriend wasn’t worried, then why should I be? The wound care surgeon told my boyfriend and I that we were to put Iodosorb in the wound and then cover it with Aquacel Foam. Iodosorb is a brown paste, the purpose of which is to absorb fluid, and remove any fluid or debris that the wound may have. As the Iodosorb absorbs the drainage from the wound, iodine is released from the paste, which helps to kill bacteria. Aquacel Foam works, by gelling on contact with the wound’s drainage and then pulling the majority of the moisture away from the wound so that maceration does not occur, yet it also, allows for an appropriately moist environment for optimal healing. We were then told, to use foam dressing on top of the callous, not so much for absorption but to provide some protection from his brace. After we were both clear on the instructions to take care of his wounds we were told to schedule a follow-up appointment a few weeks later.

Why Can’t I Just Be Pain-Free and Healthy? Dealing with Several Issues (Part 1)

2014-10-05T23:08:00.002-04:00

It has now been approximately two months since my wound care appointment was scheduled for the issue with my toe. When I got there it was determined that the doctor that I was scheduled to see would not be able to do anything to help me. I was then informed that if I did not mind waiting, a podiatrist was going to be in wound care shortly. I did wait and had my toe seen by a podiatrist. The podiatrist ended up removing a small portion of the tip of my toenail in hopes that its removal would relieve some of the pressure. She also sent me for an x-ray of my foot to make sure nothing internal was causing my pain. Before I left she explained that she is of the “no news is good news” camp and therefore, unless something was catastrophically wrong, she would not call me and that I should just give my foot some more time to heal.

When I left the appointment at the wound care center, my boyfriend and I had to hurry home so that we could leave on time to go to the play in the city that we had both been looking forward to. We got to the play in the nick of time and it was wonderful. After we saw the play we went to dinner at a restaurant close to the theater. During dinner, it somewhat occurred to me that I was not as exhausted as I was somewhat expecting to be. It seems that the increase of Vitamins D3 and B-12 are helping my energy levels increase.

I spent the next couple of weeks appreciating the increase in my energy level, while also not doing a whole bunch to enjoy it because I was; for the most part trying to keep my foot elevated. During this time, something that can only be described as a freak accident occurred. I was sitting in my wheelchair with my hands resting on my wheels watching television with my boyfriend, when I decided to push my wheelchair. Evidently, my thumbnail was very close to the pocket of my clothing because it got stuck when I tried to move and my wrist bent in a position that no wrist should find itself in. I immediately examined my incredibly painful wrist and noticed that it was swelling. I decided to ice my wrist for a little while to see if it would help. After icing it for some time with no improvement I made the decision to get it evaluated at my local hospital.

My boyfriend and I went to the hospital and I explained to everyone what I had done to cause my injury. I knew that it sounded like a far-fetched story but it was honestly the way it happened so there wasn’t much else I could say. After the doctor examined my wrist and forearm and had reviewed the x-rays, it was determined that I had sprained my wrist. I was sent home with my wrist wrapped in an ACE (compression) bandage and was told to take ibuprofen every few hours. I followed all of the instructions that I was given but a week later I felt like I was experiencing more pain.

I went to a doctor that is in the same group as my primary physician and explained to her what had happened and how I had been treating it. When she examined me she noticed a small nodule on my forearm. She had a suspicion that it was a blood clot and so she instructed me to go directly back to the emergency room so that I could have an ultrasound. Prior to leaving her office she did say that she was going to call a prescription into my pharmacy that might help my pain a little more than the ibuprofen was, she also encouraged me to see an orthopedist as soon as possible to be further evaluated. It was on the way back to the hospital that I received a text message from my parents asking where I was because they had gotten locked out of our house. All of this crazy business with my wrist inconveniently had to happen when my parents were out of town. I responded saying that I was at an appointment and that I would be home soon. My dad’s response was that it was no big deal because my cousin, whom I had left sleeping on my couch, was still there and had let them into the house. At that point my boyfriend and I continued onto the hospital while I tried to put the unnecessary text messages out of my head. At the hospital I received an ultrasound of my arm and they did not see a blood clot (yay!) They did however, suggest changing my ACE bandage to a splint so that I could be a bit more supported, while allowing me to have some movement so that I could at least maneuver my wheelchair without assistance.

By this point, it had been about a month since the podiatrist had evaluated my toe and I had noticed that despite elevation and the copious amounts of ibuprofen I was taking, my toe was still swollen and incredibly painful. Realizing that I hadn’t heard from her I decided to take it upon myself to call her to first, verify that nothing out of the ordinary had been seen on the x-rays and to also get her opinion on what I should do about the pain that I was still experiencing. She explained that the x-rays had come back completely normal but if I was still having pain I should make an appointment to come in and see her. At that point I tried to pick her brain and ask her what her thinking was and she said that she really didn’t have any thoughts other than to re-examine it. When the podiatrist saw my toe during my appointment, she noticed that part of my nail was ingrown she thought that perhaps it was causing my pain so she removed the ingrown portion and instructed me to soak my toe in warm water daily and to follow-up with her in a week.

*** I intended to write more but I feel it is becoming too long for one post. I promise I will continue writing in a day or two. I won’t neglect my blog for this long, I’ve learned my lesson. ***

In a Holding Pattern

2014-08-17T20:17:00.002-04:00

I waited a couple of weeks before I contacted my boyfriend’s urologist again and asked him for a recommendation. I got a response shortly after, saying that he did reply as soon as I asked him to but that also included contact information for a doctor. I read the email as being incredibly defensive but shortly afterward, realized that I could do nothing about the perceived tone that the email had. All I could do was take the contact information and choose to either contact a third opinion or just file it away for possible use in the future. My discomfort that I have in my back has not decreased even though I have greatly increased my water intake. I was told that increasing my water would help prevent the remaining stone fragment from getting any larger. Currently, I am drinking like a fish and waiting to see what my urologist says when I see him in a few days.

Although, I was confused about my wound care surgeon’s thought process, I did not contact him to question his thoughts about my toe. I have been monitoring it for about a month, hoping that something about its appearance would change, signifying that healing was happening. Nothing has changed in fact the throbbing is becoming more uncomfortable. I called the wound care center a couple of days ago and explained to the receptionist that I understood that a month was just a guideline but that I saw absolutely no physical changes in it and the pain was increasing and asked her what she thought I should do. After much discussion about my schedule and about which doctors and nurses where available when, we were unable to coordinate my availability with my wound care surgeon’s availability so an appointment was made with the other wound care doctor that I have seen before.

Speaking of my availability for a wound care appointment, I am unavailable because I am going to the city for the day to see a play and to have dinner. Ordinarily, I would be incredibly excited about this and though I am, I am somewhat concerned about my stamina. Since I have been discharged from my wound care ordeal, my stamina and ability to do ordinary things without experiencing horrible fatigue has been not existent. At first, I thought it was just because I hadn’t been trying to do much for so long that my body would just have to readjust, that doesn’t seem to be the case though. I don’t feel like it would take this long unless something else was causing it. I discussed this with my therapist and she suggested that I go to my regular doctor and at the very least get a blood test. I saw my doctor a few weeks ago and we decided to run some labs because perhaps some of my levels were a little off. It’s pretty ridiculous, but at this point I was sort of hoping something was wrong so that it could be taken care of and I could start feeling more like myself. I also, requested that we begin the MRSA nasal swab tests so that it can be clear in my medical record that I do not have MRSA. The reason that I want this in my record is because if I were to ever be hospitalized, I would need to be isolated which isn’t so much of a problem for me but it causes aggravation for my visitors. If I am in isolation, my local hospital requires that my guests wear gowns and masks each time they visit. I haven’t bothered with the testing for that before now because it never really bothered me until my dad also ended up hospitalized, during which time he was unable to visit due to isolation protocol.

A few days after my appointment with my doctor I received a phone call and was told that my Vitamin D level was very low and my vitamin B-12 level was on the low side. It was recommended that I begin taking both of those vitamins, to supplement my diet and to give it about a month and if I am not feeling much better to come back in. I have begun taking both of those vitamins and I am just beginning to feel a little bit better, then again I haven’t really done much, to “test” if I am actually responding. I guess I will find out in a few days, after I’ve been out and about all day.

What is Stopping Me From Accepting Good Advice?

2014-07-15T01:36:00.000-04:00

I have spent approximately the last week pondering the steps I will need to take in order to help resolve some of the medical issues that I am experiencing. Several weeks ago, my boyfriend gave me the email address of his urologist and suggested that I get in touch with him and ask for his thoughts. My therapist echoed his suggestions and still the contact information only sat inside of my wallet. During the time that the contact information for my boyfriend’s urologist was “gathering dust” I was somewhat focused on the issue with my toe.

I went to the wound care center last week so that the problem with my toe could both be diagnosed and then hopefully a treatment plan would be decided upon. When I got to the wound care center, I told my surgeon what had happened and after examining my toe, he told me that I had a subungual (under the nail) hematoma. I told him that I was experiencing some throbbing with it suddenly, and that my discomfort was what prompted me to get it looked at. He said that he was going to remove the toenail to relieve some of the pressure. He then asked the nurse that was with us to get him the supplies he would need. Of course, I was not entirely thrilled with having my toenail removed but I figured that it was going to ultimately make me feel better.

When the supplies were brought in, after asking about my sensation, my surgeon started poking around the sides of my toenail and cleaning it up a little. When he got to one spot I said that it hurt. My surgeon then questioned where exactly my pain was and I pointed it out. That is when his plan changed and he said that he was going to leave the nail in place. I said something at that point along the lines of, “you are”? He said that yes he was going to leave it and that it was actually better to leave it anyway. I asked him how long he thought it would take for it to grow out and he said that it would probably take about a month. When I asked him what I should do about the discomfort, he told me that I should deal with it if I could. I left the appointment with no plans to follow-up and thinking that eventually it would heal.

A couple of hours later, my boyfriend and I were out having lunch and I found myself sinking into an emotional funk. I have a tendency to over-think things and sometimes my thoughts make a minor issue snowball. I told my boyfriend a little of what had gone on during the appointment and that I was confused because the surgeon changed his mind. My boyfriend did agree that it sounded a little odd to him to but that I could just wait the month and if things with my toe hadn’t improved then I could call and ask for another suggestion.

The next day I had an appointment with my therapist and filled her in on everything. Again, she suggested emailing my boyfriend’s urologist and explaining to him what was going on as far as my kidney pain is concerned and that I was emailing him in hopes that I would be able to draw on his experiences in treating patients with disabilities. I told her that it sounded like a wise decision and somewhat agreed to email him soon. I also told my therapist what had gone on the previous day at the wound care center. I told her that instead of leaving the appointment with a plan I left feeling even more unease than I had when I first arrived. I explained to her that in my experience with my wound care surgeon, he had rarely if ever changed his plan in the middle of actually doing something, as he had during my appointment. I also said that it seemed a little odd that he originally was going to remove my nail but then when he changed his mind about that he said it was better to leave it alone. My thought was, if it was better to leave it alone then why was his first instinct to remove it. My therapist agreed that it was a valid question. Being that I failed to question any of this during my appointment at the wound care center, she encouraged me to either call or email my wound care surgeon to just ask him if he would let me in on his thought process. I questioned if she thought I should get in touch with my surgeon immediately or if she thought I should wait the month and see how my toe was doing and get in touch only if the plan didn’t work. My therapist told me that in her opinion I could email him that day or the next day or really, “whenever, I felt like I wanted to feel better about things”.

A few days ago I got up the courage to email my boyfriend’s urologist. After giving him a condensed version of my story, and explaining that I had seen a second opinion that gave the suggestion that my pain was lingering due to my disability, I asked if he could give any thoughts on what was going on. I was surprised to get an email back within twenty minutes. He thinks that I just need to see an urologist that will pay more attention to what is going on and offered recommend one. Unfortunately, the doctor he was planning to recommend is approximately two hours away from my home. I responded, thanking him for offering to give me the name of someone and that I would take the information. I also, asked if he knew of someone that would be a little more convenient for me to get to.

I have not heard back from my boyfriend’s urologist regarding any recommendations but I am hopeful that I will hear something soon. I have not however emailed my wound care surgeon to inquire about his thought process yet. Part of my hesitation is possibly because of the intense trust I have in him and part of it is because I tend to shy away from confrontation, especially with people that I have great respect for. I realize, that asking to be let into his thought process is not confrontational; it is just that I have never really questioned his judgment before. I guess, I will need to think about things farther to decide how I want to proceed in both of these areas.

If It Isn’t One Thing, It’s Another

2014-07-09T00:10:00.000-04:00

My follow-up appointment at the wound care center was three weeks ago. When I was there, my surgeon asked me how I thought my wound was doing. I explained that I had seen a picture of it the previous evening and I thought it was doing well and that it was potentially finished. When my surgeon examined the wound he didn’t say all that much about it, he did however, apply Silver Nitrate to a section of it. I did not ask why he did that; I can only assume that he did it to give it a bit more strength. He told me that he wasn’t going to ask me to make another follow-up appointment with him but that if I felt that it wasn’t “perfect” in about three weeks I should come back in and have it checked.

I also had an appointment with a new urologist a few weeks ago. The majority of the appointment consisted of me filling him in on everything that had gone on with me in the past few months and why I was seeking his opinion. I explained that I am still currently experiencing what I think is kidney pain and that my prior physician had brushed my complaint off as just a sore muscle. I told the new urologist that I had been treating it like a sore muscle but that I really didn’t feel that it was muscular because icing it and taking pain medication was not working. I also explained that the pain seems to change with my urination so to me it was signaling a kidney problem.

The new urologist listened to my complaint and then asked me to show him exactly where my pain was. Once I did that he said that it does sound like kidney pain and that he had a couple of ideas why I was still uncomfortable. He said that while it is possible that the remaining fragment of the stone is causing me pain, based on its size and the location of it he said it is highly unlikely. He said that in his opinion my pain might be lingering because of my disability. A patient without my issues may experience discomfort for a few weeks after a similar ordeal but, in me, it may take months for it to dissipate. The urologist said that he has not seen many patients with my particular disability so he cannot say absolutely that is what is going on, only that it is something to think about. His final and in his opinion most probable cause for my pain was that I had developed a mild urinary tract infection (UTI). I said it sounded possible but in my opinion it wasn’t likely because my system was not behaving the way it typically does when I have a UTI, although I did agree to drop off a urine specimen at the lab so we could test for one. A couple of days later I received a call from the urologist’s office saying that an infection was found and that an antibiotic had been ordered. I took the medication for the prescribed time period, kind of hoping that the UTI was what was causing my pain and that it would all be resolved with the antibiotic. Unfortunately, the medication has not made me feel any better.

I have another appointment with the urologist in about a month so that we can re-assess the remaining stone fragment to determine if it has moved or changed in size. I have discussed all of this with my therapist and she thinks that he may have a point about my disability slowing my recovery process. She has suggested that I consult other urologists that may have a wider patient pool of disabled patients who may be able to tell me if that is possible. I have taken my therapists advice and have started asking around among some friends to see if any of their urologists may be able to shed some light on my situation.

Although my wound care surgeon had said that he did not need to see me if I didn’t feel that my wound was doing poorly, they cannot get rid of me that easily. I have an appointment at the wound care center tomorrow for an unrelated matter. It was approximately a month ago that I banged my foot on my bed frame. Of course it hurt when I banged it but the pain didn’t last very long. I noticed something on my big toe shortly after I bumped it, in my opinion I had a hematoma under the nail. It was not a pretty sight but I wasn’t in pain and I know that sometimes these things just grow out and resolve themselves; so my plan was to wait for it to heal, while monitoring it. After a few weeks the nail grew thicker at the tip and grew out and fell off. However, the remaining part of the nail was still over the spot that I feel is a hematoma. I figured I just needed to continue being patient. Suddenly, a couple of days ago, I noticed that my toe was throbbing. I thought about it and I could not remember doing anything to it that would have potentially re-injured it and it didn’t look any different. Being that the pain was a new symptom, I decided it was time to make a phone call and ask about having it looked at. I called the wound care center to ask if the surgeon I had seen for my wound was able to see it or if they thought that I needed to be seen by a podiatrist. Ordinarily, my primary doctor would probably have been who I would have called first but I have such a comfort level and a trust with everyone at the wound care center that I knew any advice they would give me was going to be good. I ended up texting with the nurse that I had seen most often and speaking on the phone with the receptionist. I was told that I could come in tomorrow and have it looked at by my wound care surgeon. I am interested to hear his thoughts on the situation and what may have to be done so that the uncomfortable throbbing will go away.

Taking Control, Becoming Empowered

2014-05-30T18:56:00.001-04:00

I had an appointment with the urologist a couple of days ago so that we could discuss the results of the Urodynamics Study. I went into the appointment with sort of a wall up because I already had lost all trust in this physician. I intended to listen to what he had to say but I also had previously made an appointment with a different urologist so that I could get another opinion. Therefore, in a way I felt like what he had to say wouldn’t really make a difference in the long run but that it may give me something to go on when I met with the new urologist.

The urologist told me that the ultrasound did show a small fragment of stone remaining but that it was not obstructive and as such was not the cause of my discomfort. He also said that my urodynamics study was surprisingly normal and so nothing was really wrong. He said the fact that I am not on any medication, though odd for someone with a neural tube defect; seemed to be fine for my body. I then questioned why I was still having back pain, in the same place that to me has always signaled a kidney problem. The urologist said that my kidney is fine and so my pain is probably due to a sore muscle. He suggested that I begin icing it and taking over the counter painkillers, as I would for any other type of muscle strain or spasm. I told the urologist that I really don’t feel like it is a muscle problem but that I would give his suggestions a try because it couldn’t hurt.

Before I left, I told him that I did want to give him some feedback about something that had happened awhile back that I did not have the courage to speak up about at the time. I told him that in the future he might want to avoid making assumptions about what a patient may or may not feel, due to his or her disability. When I said that, he gave me a questioning look so I continued to say that I did in fact have sensation and that I did experience some discomfort when he removed the stent. He then questioned if it was only discomfort or if it was pain. I said that it was discomfort and that if I were in pain I absolutely would have said something right then. He continued to say that it would have been helpful if I had mentioned it at the time but that he understood why I didn’t feel like I could. While I had mustered up the courage to bring up his treatment of me, I did not feel comfortable explaining to him that I had set up an appointment with someone else for a second opinion. I left the appointment after scheduling a time to see him at the end of the summer, although I have no intentions of actually keeping that appointment.

The next day I called the urologist’s office to request that my records be sent to another physician. That was when I met up with all of the HIPAA red tape that requires that these requests be sent in writing. I temporarily panicked when I considered that a letter would need to go through the mail and that, in combination of the office staff needing to gather all of the needed documents might take more time than I had because my meeting with a new urologist was rapidly approaching. Once I calmed down and took a moment to consider my options I realized it wasn’t such a big deal because I could fax over my request. I quickly drafted a letter requesting my records be sent to another doctor and provided them with his contact information. I followed up my request with a phone call to make sure that the Fax was received and that it provided all of the necessary information they needed. The person on the phone said the fax was fine and that getting the records to the other doctor prior to my appointment shouldn’t be a problem.

Currently, I am still experiencing back/kidney pain. I am treating it as the urologist has recommended, though I seriously doubt that it is muscular. My feeling is that if it were muscular, painkillers would at least lessen my discomfort. I also think it is my kidney because the pain level increases right before I urinate and then lessens afterward. My appointment with a new urologist is in a couple of weeks and hopefully he will have some ideas as to the cause and possible treatment of my pain.

My discomfort with the urologist was so based on his moodiness that I feel that the only benefit I gained from seeing him was his surgical skills to remove my kidney stone. He seemed to have a completely different persona in the office than he did at the hospital. I did not appreciate his assumptions based on his views of my disability or how he spoke to me on a couple of occasions. This experience has given me more evidence to trust my gut in the future and that I as the person living in this body know what I am feeling better than anyone else. As such I have a responsibility to myself to seek out answers. I have also realized that I really should speak up if I do not feel like things are being handled appropriately. I spoke up on the last visit with that urologist in part because I knew that I was not going to be seeing him again so I didn’t particularly care about hurting his feelings or about how what I had to say may effect me further down the road. I felt like I needed to be heard not just for myself but also because of the possibility that what I said will stick with him and help prevent a future patient from having assumptions made about them.

Urodynamics and a Wound Care Appointment

2014-05-14T09:22:00.000-04:00

Last week, I had my urodynamics study. The study was to test my bladder function so that my urologist and I could best determine a baseline, which would help us decide what our next step toward getting me feeling better might be. The test didn’t take very long and wasn’t very uncomfortable. The basic process of the study consisted of emptying my bladder and then inserting fluid back into my bladder until I told the nurse that I was beginning to feel the urge to urinate. After that she asked me if I felt like I absolutely had to go then or if I could wait. I told her that I was able to wait so she inserted more fluid. After I felt like I could no longer wait she stopped the fluid and apparently watched my bladder on a monitor. We waited and for some reason nothing we did were helping me to empty my bladder despite the fact that I felt full. Eventually, she told me that she saw that my bladder was contracting but only a little bit but that if I were feeling the urge that intensely she would conclude the test. I was feeling like I could no longer wait so we unhooked me from the sensors and the nurse told me that I needed to set up an appointment with my urologist in a couple of weeks to go over the results. I left that appointment and made a beeline for my house where my bladder felt free to empty. Soon, it was time to go to the Wound Care Center for my appointment with my surgeon.

When I got to the Wound Care Center, I had the same nurse that I had seen the previous week and she asked me how I felt the wound was doing. I explained that I hadn’t been able to see it, so I had no definitive answer but I that I was experiencing some discomfort with it, although, nothing close to the pain I had when things had gone haywire in the past. When my surgeon walked in the room, I was relieved to see him but was also hoping that I wasn’t there wasting everyone’s time. He asked me what I had been doing to treat the area and I told him that the doctor from the previous week had recommended using Calazime and also the barrier skin prep and that I was following those instructions.

When he looked at the area he told me that it was closed and not anything to worry about but that I had done the right thing by coming in when I personally felt unsure. I did tell him that I am sometimes feeling a stinging sensation in the area and questioned that it was actually closed. He told me that it was closed and that he did not have a reason for why I may be experiencing the discomfort. He recommended continuing to use the Calazime and skin prep and asked me to come back in about a month so that he could see how it was doing then.

As of now, my plan is to see my urologist in a couple of weeks so that he can tell me the results of the Urodynamics study. I have decided though, that I will not see him past that appointment. I have received the name of an urologist from one of my former visiting nurses and I intend to call and make an appointment with him so that a solution may be found, hopefully with someone that I will have a better feeling about. I am continuing to treat my wound as my surgeon has recommended and I am planning to follow up with him in a few weeks. Hopefully, all of this will be resolved shortly so that I can move on with my life.

A Week of Chaos

2014-05-05T20:55:00.000-04:00

I spent last week trying to keep my thoughts positive and not worry too much about everything that was going on with me medically. As I was leaving the radiology office after my ultrasound I requested that the reports be mailed to me. The office said that they would be sure to send them.

A few days later, the urologist’s office called me. I had a temporary moment of panic when they called because I remembered that he said he would only call if anything had shown up. When I answered the phone it was a person from his office. I halfway expected her to transfer me to the doctor so he could speak with me directly, instead she told me that the results had come back normal and so I should come in a few weeks later for my scheduled urodynamics test. I thanked her and hung up the phone feeling confused. I wondered why I was being called when everything was supposedly fine when I had previously been told that I would not receive a call if everything were okay. I tried not to let it bother me and just focus on the fact that they had communicated with me and that communication is a good thing.

A little while later, my mother handed me my mail and in it was the report from the ultrasound and x-ray. I opened it somewhat expecting it to say every little thing that had been seen so that did not surprise me as much as I was disturbed to see that a “small, 4mm density’ which was most likely a small fragment of the kidney stone had been discovered. I understand that 4mm is very small but when I considered that my original kidney stone was 8mm I didn’t necessarily agree that something that was half the size of the original was actually being considered normal. At first I was ticked off because I felt that the urologist’s office had lied to me about the results. After I calmed down and thought about it more clearly; I don’t believe I was lied to as much as I was not given all of the information. I believe it would have been more appropriate for them to tell me they found a small fragment but that it was not causing any of my problems so they did not plan to do anything about it.

All of this communication and miscommunication is causing me inner turmoil. On one hand while I was somewhat confused as to why I was receiving a phone call I was glad that they did not seem to forget about me. I would much rather receive a phone call to tell me that everything is okay than to not receive one when I am expecting one. The fact that they neglected to give me all of the information has me still considering switching providers. It of course brings up issues of trust and my belief that they are making appropriate decisions. I am just hopeful that the remaining fragment does not affect the urodynamics study that I have scheduled in a couple of days. I am considering bringing all of this to the urologist’s attention when I am there but I am sometimes uncomfortable being confrontational. I will need to do a “gut check” before I go to my appointment to decide how I want to proceed.

Last week, was also my appointment at the wound care center to figure out what was potentially happening with my wound. When I got to the appointment I gave a nurse that I had never seen before a condensed version of the history of the wound and then told her what I had seen the previous week, which had lead to my making the appointment. After she took all of the information she then examined my wound but she did not say much about it. I got a feeling though, that it was because it was doing very well or that she couldn’t actually find it. I waited a couple minutes for the doctor to come in and then I explained to her what I had seen and that it scared me because one of the previous times that it opened I had seen her and it actually had depth and required care. She totally understood my concern. I showed her the picture of my wound that had lead to my appointment and she looked at the area. She then explained to me that it was not open but that the top layer of one section had come off, giving the impression that it was open. She correlated it to having a facial and when you leave your skin looks red because the top layer is sometimes removed. I was relieved that nothing was really wrong but I also felt like somewhat of an idiot for having come in for nothing. The doctor said that it wasn’t for nothing because I did not really know what had caused it. She then recommended that I use Calazime on the area to try to block out any moisture that may break down the skin, although she did not see any breakdown happening, so it was more preventative than for treatment. She also told me to make a follow up appointment with my wound care surgeon for the following week, when he was there just to see if what she had recommended was working.

I have that appointment in a few days, ironically the same day that I am scheduled to have the urodynamics study. I am hopeful that both of those appointments are informative yet uneventful.

Turning Lessons into Action

2014-04-26T19:05:00.002-04:00

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.

Six Months Since Discharge!

2013-07-24T02:07:00.000-04:00

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. :)

Changes

2013-05-13T22:55:00.001-04:00

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?

A (Happy) State of Confusion

2013-04-29T00:22:00.000-04:00

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.

An Update and a Wound-iversary

2013-04-03T01:30:00.001-04:00

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.

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

2013-03-21T20:32:00.000-04:00

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.

What The Hell is Happening Now?

2013-03-09T02:20:00.001-05:00

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.

Learning to Relax (in more ways than one)

2013-02-13T00:04:00.000-05:00

It has now been approximately three weeks since I have been discharged from the Wound Care Center. My visiting nurses are still seeing me once a week and they are confident that my wound is really closed for good this time. Their confidence is great; I am just waiting for my mind to catch up to it. I am still incredibly nervous that it may open again. I am trying to strike a balance between being aware that the wound has opened in the past, yet trying to adjust to having my life back to normal. I still regularly make sure that I’m not seeing any discharge and also, asking my boyfriend to check to make sure that it is closed between nursing visits. When my nurse came yesterday she assured me that it is closed and then warned me that the next visit may end up being my last. Apparently when she told me that I had a terrified look on my face because she immediately said that she really does only live a couple of minutes away and that it was okay for me to call her if I really felt that something was weird after I was discharged. She said that she would either come out to check the wound if I was really upset or if I was just mildly concerned she said she might just try to talk to me and try to get me to calm down.

My boyfriend has said that it is okay with him if I post a few of the pictures, so though I chose to keep my wound pictures private, I will share his.

Boyfriend's wound picture taken approximately September 4, 2012

After the visiting nurse and I treated it for a few weeks, it began to look too dry:

Picture taken October 16, 2012

Picture taken mid October, after treating with Hydrogel

Picture taken late October 2012

Picture taken early November 2012

Everything after that seemed fine until I saw it again in late January 2013. That is when I told him that it needed to be seen.

What my boyfriend's wound looked like in mid/late January

Photo from the first time the wound care center saw the wound (January 30, 2013) after it had been treated with Calcium alginate and a Tegaderm Foam Adhesive

Taken at wound care February 6, 2013 after having daily ABD dressing changes

Photo taken approximately February 8,2013 after Bactroban ointment

Taken February 9, 2013 after continued Bactroban

Calm down seems to be a recurring theme in my wound-life because when my boyfriend left to go to his house last week I was a little bit worried that he would have to take care of his wound without me. I was confident that he is not incompetent and could change the dressings without a problem, but I was worried that he would minimize it if he suddenly weren’t doing as well. That paranoia lead to me regularly asking him to text me pictures of his wound so that I could stay as up to date on its progress as possible. I am getting ahead of myself though, last week at my boyfriend’s appointment at the wound care center he was told that the culture results had come back positive for MRSA.

The surgeon therefore prescribed Bactroban Ointment an antibiotic to treat the infection, which my boyfriend was to apply to the wound bed once or twice a day when he changed the dressing. When the surgeon examined the wound itself though, he said that he thought it appeared a little smaller. I concurred (as if my opinion actually matters. ha-ha) that it did seem to be a little better than it had been, at least since the last time I had seen it.

My boyfriend is continuing to treat his wound himself at home and is periodically updating me on what he thinks is happening. He goes back to the wound care center next week. The surgeon said the he had a feeling that treating it with the ointment and just a small gauze pad would get it going in the direction we wanted it to go in. Hopefully, the surgeon is correct. Currently I am waiting for my boyfriend to visit so that among other things, he can show me a picture of my wound again so that maybe we can drill it into my head that it really is closed.

I know I am bordering on ridiculous with my level of paranoia about my wound; it is just that I cannot get the previous time that it was closed out of my head. I was so incredibly happy and relieved that it had closed (after 3+ years) and then absolutely devastated when it opened after six weeks of it being closed and living a normal life, once again doing what I wanted to do without having to worry about a wound.

A Different Side of Wound Care

2013-02-02T01:02:00.000-05:00

I had a visiting nurse the next day and told her that I was nervous that my wound had possibly opened again but that I was getting mixed signals from my body. When the nurse looked she said that it was still closed and that I should try to calm down, while still paying attention to what my body was telling me. I was happy to learn that it was still closed but was confused by where the drainage had come from. My nurse looked around the entire area of my wound and said that she did not see anything that looked like it had opened or bled. I was relieved that it still appeared to be closed. That is when my nurse told me that either she or my other nurse would see me a week later. Already they were starting the discharge process, which begins with them only seeing me once a week for several weeks. They do this so that we can be sure that the wound is fully closed and seems to be staying closed. I knew how this process was, based on what had occurred several months earlier and I was comfortable with the process, I just did not think that it was going to start so soon. I expressed to my nurse that I was nervous that no one was going to see it for an entire week and she assured me that everything looked fine and also said that she was really only a phone call away if I really felt that things were going wrong. Before she left she asked how my boyfriend was doing and verified that he was going to be seen at the wound care center within a few days.

The next day when my boyfriend came to my house he said that he had to listen to a voicemail because he had missed a call from the wound care center while he was driving to my house. He only listened to part of the message and then told me that he had to call to reschedule for later in the day. I asked to listen to the message and when I heard it I realized that he wasn’t being asked to reschedule for later in the day, but for the following week at a completely different time. I told him that that was what I understood it to be and though I was displeased, I knew he was the patient and so these decisions were his to make. Before he returned their call I told him that to me it did not sound like they were making the connection that we were together and that he should use my name, or at least tell them that I said hello so that maybe something would click in their heads. My boyfriend chose not to use my name or really do a whole lot of advocating for himself so that he would be able to be seen. I sort of overheard the conversation and was peeved that he didn’t say anything about being with me, because it sure did not sound like the wound care center realized it.

When my boyfriend got off the phone I asked him when it was rescheduled for and when he told me I was then even more positive that they did not know we were together just based on the day and time his appointment was made for. I told him that I was pretty sure he was going to get a different doctor than he was originally scheduled to see, my boyfriend disagreed but we both dropped the subject.

The next day was when my boyfriend’s appointment was supposed to have been and I needed to go to the surgeon’s office to speak to people about a different matter. When I was getting out of the car my boyfriend asked me if I could ask the office manager if she had any idea if the surgeon was going to be at the wound care center during the time his appointment had been rescheduled for. I agreed to ask, happy that he was possibly beginning to realize that things were maybe not as he first thought they were.

When I got into the office I was surprised to see my surgeon! I have been in his office quite a bit for reasons and I have never seen him there. When he noticed me he asked what I was doing there and then questioned what had happened with my boyfriend’s appointment. I explained the situation and then asked him if the rescheduled appointment was even going to be with him, he said that it was not. The surgeon then asked if my boyfriend needed to be seen that day and asked if waiting if he was running late would be okay. I said that yes he should be seen and that waiting was not a problem at all. The surgeon then, worked his magic and the appointment was made for a couple of hours later that afternoon. When I left the office and told my boyfriend, he was very happy that it had all gotten worked out.

A couple of hours later when we were about to go into the wound care center I asked my boyfriend if he wanted me to go in with him or if he would prefer if I waited in the waiting room. My boyfriend said that yes he wanted me to go in the appointment with him. While we were waiting in the exam room for the nurse to come in, I asked my boyfriend if he wanted me to do any of the talking or if he wanted me to be a silent observer. He said that I could do some of the talking. When the nurse came into the exam room she did the typical things that happen at a first appointment. My boyfriend and I explained to her how it had recently been treated and then we waited for the surgeon to come in. Admittedly, I was sort of amused by this point; I was not the patient, finally! I also sort of made a joke to the nurse that I was interested to see the surgeon actually do something because based on the location of my wound I had never actually seen him do anything.

When the surgeon came in he examined the wound and asked my boyfriend how he thought he had gotten it in the first place. The surgeon decided that he was going to culture it and also to biopsy it so that we would know if anything really funky was going on inside. The surgeon also said that he wanted my boyfriend to get his leg x-rayed before we left. All of that sounded like a good plan so the surgeon took a small tissue sample. When he took the sample, the wound began to bleed, I watched it but was not alarmed because I knew that good blood flow was a good sign for wound healing. The surgeon then cauterized it so that the bleeding would stop and told the nurse what type of dressing to put on it. He then told my boyfriend he would see him the following week but would call him sooner if the lab results showed anything that he would need to know sooner.

The nurse then came over and explained to both of us the type of dressing that she was putting on it and how often it would need to be changed. My boyfriend was not going to need visiting nurses so it was going to be up to him and to a lesser extent myself to change the dressings and monitor the wound. She was going to put a type of Hydrocolloid dressing on it and said that we should change it every three to five days and more often if the amount of drainage required it. The nurse then looked at the wound and realized that it had begun to bleed again. She held pressure to it and it slowed down, she then said she was going to place a small piece of calcium alginate just over the part that was bleeding, She then placed the Hydrocolloid dressing on top and while looking at the amount of drainage explained that that dressing would need to be changed sooner than in a few days. We left the wound care center certain that we were capable of handling it.

A couple of hours after we got back to my house we decided that the dressing should be changed. I took off the dressing and noticed that it was still bleeding from that one area but only a small trickle. I did not think much of it and so I just put a small piece of calcium alginate over that area and then put the dressing in place. Everything seemed to be going well until just before my boyfriend was about to leave, that is when we realized that a small circle of blood was on the floor. My boyfriend came over to where I was and showed me his leg so that we could determine how to proceed. When I saw that the dressing was saturated with blood and that it was coming out of all the sides I knew instantly that it needed to be changed. When I took off the dressing I was rather appalled by the amount of blood that I saw. The dressing that had been prescribed does not absorb exudate as much as it turns it into a gel. The bloody gel was sitting on top of the wound, I knew that it had to be removed so that I could both change the piece of calcium alginate and examine the area that was bleeding. I took a deep breath as I was putting on a pair of gloves and then carefully grabbed the gel like substance from the wound to dispose of it. After I did that I looked at the part that the blood was coming from and noticed that it was actually bleeding this time and not with just a trickle.

My brain clicked on almost immediately and I shoved a bunch of pillows under my boyfriend’s leg, hoping that the blood would stop if it were elevated. I also held pressure to the wound knowing that the combination of elevation and pressure usually makes bleeding stop. This had gone on for quite awhile and although I did not want to bother the surgeon I knew I was in over my head, so I sent him a text message explaining that it was still actively bleeding and that my boyfriend would only have one dressing left to last the entire week after I redressed it. The surgeon clarified which dressing he had prescribed. I answered his question and then explained that I had changed it once already but that this time the bleeding was worse. The surgeon then told me to use calcium alginate and then instructed me on how to properly apply direct pressure to get the bleeding to stop. I explained that yes we had calcium alginate and that we had used it before also. The surgeon told me, “no worries. It will stop”. The bleeding eventually slowed down considerably but did not seem to stop. When the surgeon sent me a message about an hour later asking if everything was okay, I explained that it had slowed down but never stopped but that a few minutes before his messaged me it had started to actively bleed again and asked him what he thought we should do. I explained that I had applied the dressing and it was saturated. While I waited for him to respond I called and left a message at the wound care center explaining that we were rapidly running out of dressings and questioned if we would be able to pick some up the following morning and to please call me.

Meanwhile we were now at the wee-hours of the morning and my boyfriend had fallen asleep! I was tending to his bloody mess while he lay on the bed snoring. I was not exactly happy with him at that moment but I didn’t really mind it all that much because there was really no logical reasons for the two of us to be awake the entire night. I eventually couldn’t help myself and fell asleep. I slept for about two hours and then woke up. About an hour after I woke up the surgeon replied to my text message and told me that I should wrap it with an Ace bandage over top of the saturated dressing. I woke up my boyfriend and asked him to get an Ace bandage so that I could follow the surgeon’s instructions. Shortly after I applied the Ace wrap I received a phone call from one of the nurses at the wound care center. I explained everything that had gone on the day before and through the night. The nurse said that she was going to get in touch with the surgeon and would call me back shortly. When she called back she explained that she would be at the wound care center for a few hours and that we could come in if we wanted.

We decided that we were going to go to the wound care center to get the wound looked at and also to pick up enough dressings to last the six remaining days until his next appointment. The nurse unwrapped the wound and we saw that it was bleeding the nurse then said that she was going to cauterize it. I explained that the surgeon had done that the previous day and it still bled. The nurse questioned that he had because he had told her that she should cauterize it when she saw it. I said that yes I was pretty sure he had, the nurse then said that she was still going to do it. When she did that the blood seemed to stop, finally! She then asked me what types of dressings I had in my arsenal at home and I named a couple. She then said that she was going to switch him to an Abdominal Pad Dressing (ABD Dressing) and was then going to apply an Ace wrap tightly on top of that. She told us that that needed to be changed on a daily basis and reminded us that she would be at the wound care center the following day if we needed her for anything. We left the wound care center glad that we had made the decision to get the wound looked at and hopeful that we wouldn’t have anymore drama before the next appointment.

Uncertainty

2013-01-27T23:56:00.000-05:00

“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.

Cautious Optimism

2013-01-22T19:51:00.000-05:00

I’m sorry that this post has been delayed so long. Things got a little absurd and I needed time to process before they came out in a jumbled mess of emotional chaos. I think I am at the point where I can write somewhat coherently so here we go.

My visiting nurses continued to fill the wound with collagen of one form or another for several weeks after the surgery. It seemed to me that the wound was progressing, slowly but still moving forward. During a visit to the wound care center my surgeon mentioned maybe wanting us to change what we were using, just to jumpstart the healing again. He thought that we should maybe switch back to using the Hydrofera Blue. That was when he asked about how much drainage we were noticing and I told him that it was still heavily draining. At that point my surgeon decided not to put in the Hydrofera Blue because he felt that it might just plug the drainage in the wound and not let it escape. I agreed and went home with instructions to continue using Collagen inside of the wound and the same Tegaderm foam dressing on top of it that we had been using.

The visiting nurses and I continued following my surgeon’s instructions and we were seeing some progress. I was happy to hear that things were going well but was still taking most of the good news with cautious optimism, with an emphasis on the cautious. In the beginning of December I went to my regular appointment at the wound care center and when my surgeon probed inside the wound to see what the depth was he was very happy. Actually, it was one of the few times when I had heard him really “up” about how it was doing. After I laughed about his reaction he told me to just keep doing what we were doing and to come back in two weeks so he could assess my wound again.

During the couple weeks I was waiting to go back to the wound care center my nurses started to become more and more pleased with my wound. The drainage was starting to decrease and the depth started to become less. The next time I saw my surgeon he was also pleased and told me to keep going with the collagen and see him again a few weeks later.

After about a week I mentioned to one of my visiting nurses that I had been thinking. Me thinking? Wait a minute; this could either be really good or really bad. See, as I have said wound care was continuing to take over my life and once in awhile I found myself unable to get wound care out of my head. I mentioned to her that my surgeon was at one point considering changing to Hydrofera Blue but he was concerned about having too much drainage. Based on the fact that we were noticing the drainage had decreased and had been on the collagen for approximately nine weeks I was thinking about mentioning to him that maybe that point would be a good time to switch what we were doing. My nurse agreed with my thinking and told me that it couldn’t hurt to bring it up with him at the following visit.

A couple of days later I had another visit from a nurse, this time it wasn’t the one that I was super comfortable with, but the one that I had been taking almost everything she said with a grain of salt. I mentioned my idea to her and she also told me that mentioning it wouldn’t be a bad idea. That is also when she told me that she had received a communication from the wound care center about my wound. That sort of threw me for a loop because the nurses rarely if ever get communications about me. She then proceeded to tell me that the communication said that my wound had some depth that she was unaware of. What had happened by this point was that the opening of my wound had become so small, my visiting nurses were having trouble getting any instruments inside of it to measure the depth. Visually they thought it was doing well but they couldn’t really be sure. The depth that she told me seemed that it had to have been completely outdated but there was no way to be sure at that point because she didn’t have a copy with her to check the dates. I felt that the communication was outdated because I am all but certain that the number was not one that would have caused my surgeon’s excitement a month earlier. I was going to the wound care center two days later so I intended to mention both the weird measurement communication and my idea to switch to the Hydrofera Blue while I was there.

When I got to the wound care center the nurse took the dressing off and then didn’t really say much of anything. I also, didn’t bother to ask because I knew my surgeon would be in shortly. When my surgeon came in, before I had really even gotten a chance to tell him my idea about changing to Hydrofera Blue or to ask about the strange communication my nurse had received, he came over and examined my wound. Then he said something completely unexpected, “I’m calling that healed”. By then, my surgeon came over to the other side of the bed so he could actually see my face. I have to say I don’t think I gave him the reaction that he was exactly looking for because well frankly, I did not believe it. He asked me if it was something the nurses said that had me feeling a little unsure and I said yes, but before I really got to tell him what exactly she said, we got talking about other things. I think I was so thrown off by that news because I could not get the strange measurement from the communication that my visiting nurse had told me about out of my head.

My surgeon then told me that he wanted us to lay a piece of calcium alginate over top of the wound and then put a dressing on top of it, “just to absorb any drainage and to provide some more protection for it”. He told me to come back a couple of weeks later so that he could be sure. Due to a scheduling conflict I told him that two weeks was not an option so he could choose either seeing me the following week or to wait and see me in three weeks. He then said to come back the next week.

I left the appointment unsure how to feel. While I was happy to hear that my wound was supposedly closed I was also thinking about the times I had heard before that it was closed. The previous times I had gotten very happy very quickly and then it had reopened so this time around I was a little hesitant to get excited. Being that I was so cautious I decided to really only tell my boyfriend what my surgeon had said. I decided that because before when I had told everyone and their mother about it being closed it had reopened and the look on those people’s faces was too much for me to handle so I was going to keep quiet about it for awhile, this time.

Two days later when a visiting nurse came I explained to her what all had gone on at the appointment and what the wound care orders had been changed to. I also, told her that while I fully trust my surgeon while I believe HIM, I did not necessarily believe IT when he told me. She laughed and said that it sort of made sense to her, if that was how I “wanted to spin it”. My nurse then examined the wound and she said that it was doing incredibly well, that it had no drainage but that one part of it may still have been open. I was neither surprised nor upset upon hearing that. Mostly because I just didn’t get the “it’s done” feeling. She then dressed the wound and told me that the other nurse would be out to see me in a few days.

The next nurse that came was the one that I do trust and that I have always had a close relationship with so when she came in and I told her what was going on she had said that she would tell me what she thought. When she looked at it, she said that it is closed. I believed her but still was hesitant, she then said that she poked at it rather aggressively and that nothing happened. My response to this news was “eh, ok, if you say so; but I’m still not telling anyone yet. She laughed but told me that she understood why I was being so incredibly cautious this time around. Before she left, she asked me to call her after I see my surgeon to give her an update, which just happens to be tomorrow. Stay tuned.

Surgery Recovery and Miscommunication

2013-01-06T00:20:00.002-05:00

After a quick stop at the pharmacy to pick up the prescription for pain meds, I went home to rest and await my visiting nurse who was scheduled for the next day. When my nurse came she asked how my pain level was and I explained that while I was sometimes uncomfortable, it was easily controlled with my prescription. She also, asked what exactly had been done in the operating room and what the orders were as far as the wound care itself was concerned. I explained to her that during the surgery the wound had been cleaned up back to healthy bone and then filled with antibiotic seeds and then a type of Prisma collagen was placed inside the wound. The collagen that was inside the wound and the antibiotic seeds would all start to be absorbed by my body as such the only thing that my nurse would need to do for the next few visits, would be to change the outer dressing and monitor the amount of drainage.

I saw my surgeon at the wound care center about a week later. During which time he added Promogran (another collagen) to the wound and explained to me that he still only wanted my visiting nurses to change the outer dressing and that he wanted to see me weekly. He needed to see me weekly so that he himself could add the collagen after it had been given a chance to be absorbed. That way not everyone was poking around inside the wound, therefore hopefully giving it the best chance to heal.

Following those instructions was going very well and my surgeon seemed pleased with the progress of the wound. A few weeks later, my surgeon explained that he needed me to skip a week with him so as I was leaving a made an appointment for two weeks later. When I next saw my visiting nurse I explained to her that I was skipping a week at the wound care center but that I had completely forgotten to ask what should be done about the collagen that was to be replenished weekly. My nurse told me that at that point it was fine because it had only been a couple days and we had time to get in touch with the wound care center before it would need to be changed anyway.

I called the wound care center and spoke with the nurse that had last been in the room during a visit with the surgeon to ask her what she thought we should do during the time I would not be seen by my surgeon. The nurse that I spoke with was one that although I do not have a problem with her per say, I do not feel like her and I communicate very well. When I asked her what I should do after the collagen was in for a week all she really said was that it “dissolves into the wound” I explained that I knew that already and then asked in what I thought was a different way that would maybe get me an answer. I even pulled out the big guns and used the word “replenish” in the sense of “what should we use to replenish the amount of collagen once this has been in all week”. The nurse continued to just tell me that my body absorbs the collagen but never really told me what to add once it had been in for the week.

When my visiting nurse came I explained to her that I had tried to get us an answer but hadn’t been very successful. She was frustrated by the lack of information but was mostly just amused that I had asked several different ways and still the nurse was unable to at the least reply with “I do not know, let me speak with the doctor and get back to you”. I was also amused so I laughed about it, with the intention of calling my surgeon a few days later for a straight answer. A few days later I found myself calling my surgeon directly so that I could get further instructions. I had no problem calling being that this was a completely legitimate question, however, I did sort of feel like a fool for not having asked him before I had left. When I spoke with my surgeon and asked my question he then asked me what supplies I had in my wound supplies box so that hopefully he could just pick something I already had. He was able to suggest using another kind of collagen and told me that kind should be changed a few times a week so the nurses could start filling the wound with that and he would see me the following week.