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. ***
Sunday, October 5, 2014
Sunday, August 17, 2014
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.
Tuesday, July 15, 2014
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.
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.
Wednesday, July 9, 2014
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.
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.
Friday, May 30, 2014
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.
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.
Wednesday, May 14, 2014
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.
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.
Monday, May 5, 2014
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.
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.
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