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.

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.