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

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


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


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

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


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


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


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


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

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

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)

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

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?

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

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

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

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

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

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.