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.
Showing posts with label patient. Show all posts
Showing posts with label patient. Show all posts
Wednesday, May 14, 2014
Saturday, April 26, 2014
Turning Lessons into Action
January 23,2014 marked one year since I had been discharged from the wound care center. I felt that the one-year anniversary of my discharge was an appropriate time to make a visit to the wound care center to say hello and thank my surgeon. Of course, when I got there, my brain was not really connecting very well with my mouth so those words never really came out. In the months leading up to my one-year anniversary I had begun seeing a therapist to help me process my thoughts and to start to develop a plan for my future.
I was taking small steps but plans were beginning to form. The last few months I began to worry less about the wound re-opening. I felt that being that it had been fine for a full year I was pretty much home free. I was beginning to feel excitement for the future when I found myself in a situation that wound up being a test for my gut. In January, I found myself in my local hospital’s Emergency Room.
To make a very long story short I was very sick with a kidney stone and infection. Although, an urologist probably should have followed me, once I hit my late teenage years I was stubborn and for the most part stopped seeing doctors. So, when the emergency room physician asked if I have an urologist that I wanted called I said no. The doctors then called the urologist that they know works well with my primary care physician. When he saw my test results and examined me he said that he would do surgery to remove the kidney stone the following morning. At that point I was on pain medication and was probably a little “foggy” so I didn’t really object to delaying the surgery. Suddenly, late that night, the surgeon came in and told me he had changed plans and was bringing me to the O.R. right then.
I woke up from the surgery in the Intensive Care Unit where I was told that the surgeon was unable to remove the stone because he encountered pus and that I was in I.C.U because my blood pressure was very low, most likely caused by the infection. I asked what was going to happen about the stone because I knew it would have to be removed at some point. I also asked about the pus that was found and I felt that my father gave me the “G rated” version of what all had gone on. The next morning I was feeling a little better and just happened to notice the urologist in the hallway. He came in and told me how much pus he had encountered and that he had put in a stent so that the urine would be able to bypass the stone and that we would schedule the surgery for a few weeks later, once I had been on a round of antibiotics.
A couple of weeks after I was discharged from the hospital I went to the urologist’s office so that we could discuss my options for removing the stone. When I got there my opinion of the surgeon changed. Suddenly, his bedside manor left a lot to be desired. I was put off by it but chalked it up to his having a bad day and tried not to take it personally. We discussed my surgical options and I decided which option I wanted and he agreed that it was probably the right choice. Two days prior to the surgery the hospital called to ask all of the preregistration questions, that at this point I could probably answer in my sleep. Before hanging up with the hospital, I questioned that the surgery would in fact still happen on that day, even though a snowstorm had been forecast. I was told that the hospital takes the surgeon’s lead and that they rarely postpone due to weather. I was glad to hear that I was not going to be postponed because I was experiencing some discomfort and wanted the situation resolved as soon as possible. The day before the surgery I received a phone call from the urologist and he indicated that he believed that we should postpone the surgery for a few days due to the weather. I did not want to postpone the surgery so I did the best I could to advocate for myself. At that point the surgeon said that one of the reasons for possibly postponing was that a piece of equipment was coming from out of state and he did not think that it would arrive on time. I hesitantly agreed that postponing for a few days was an okay idea but that I did have one more question before he hung up. The reaction of the urologist was less than professional but I let it slide without calling him on it and just asked my question.
The surgery to remove the stone and replace the stent was uneventful and I was back at home relaxing by mid afternoon after making a post-op appointment with him to remove the stent. The day he removed the stent was when I had my second gut feeling that maybe he was not the right physician for me. He didn’t explain any part of the procedure for removing the stent and while it is relatively simple, I still feel that it should have been explained to me prior to his doing anything. In addition, he did not numb the area, based on his (incorrect) assumption that I wouldn’t feel anything. I regret not calling him on any of this but I was so blindsided by his actions that I didn’t have it in me to say anything.
During this time I had been continuing to see my therapist and had been telling her what had been going on and that my plan at this point was to look for another doctor while continuing to take his advice to do a few more tests. My thinking was that his thoughts sounded plausible and his ideas to get more testing all made sense to me so getting tests done with him was fine because I figured results could always get sent to another physician if I chose to go that route.
One of the tests that the urologist wanted was for me to get an ultrasound done of my bladder and kidney so we could see if anything was going on that would possibly explain why I am still experiencing pain weeks after the stent was removed. The ultrasound was a few days ago and I tried to ask questions during the test but the technician said that he was unable to discuss my results with me. I was frustrated by this especially when I glanced at the screen and saw what in my mind looked very similar to the kidney stone when I had seen one of my CT scans. The technician said that it was part of my intestine. I had a weird feeling that I was being fed a line but I didn’t feel comfortable pressing for more information. After the ultrasound I explained to my boyfriend what had happened during the test and that I just had this eerie feeling that I saw a kidney stone. He suggested I call the urologist and while I understand why he suggested that, I had been told that he would call me if anything I needed to know about showed up on the ultrasound. As we were going to my house, I began to get a horrible feeling in the pit of my stomach, that something with my wound was suddenly not right.
When we got back to my house my boyfriend, looked at the area and his reaction was less than positive. After I saw a picture of what he had seen, I began to get really scared. After over 15 months of having absolutely no problems whatsoever, my wound looked like it had opened again. I sat up and looked at my boyfriend and told him that I was scared, really scared. People that know me, know that scared is not a feeling I express very easily either. He grabbed me in a hug, said he understood and then suggested I call someone. At that point I had no idea who to call or what to do because I had heard that my amazing surgeon from the Wound Care Center had changed his schedule and so he wasn’t there as often. I did end up calling the wound care center, only to be told that my surgeon had been there the day before and that he wouldn’t be back for a couple of weeks. I was not comfortable with waiting that long so I asked if the other doctor that I had seen a few times was there any time soon and was able to schedule an appointment with her for next week.
We then had to hurry up to get me to my appointment with my therapist. As soon as I saw her I damn near lost my mind. I explained that I have fears about what may have shown up on the ultrasound and then I dropped the big news that my wound had opened again. She told me that I should try to remain positive and that we seem to have caught this at the very beginning before it had a chance to turn into anything catastrophic. She also suggested that I email or call my wound care surgeon because it may make me calm down. I expressed that while I did want his thoughts, I was hesitant to contact him because I felt it was potentially crossing a boundary. She told me that she really felt like it would be acceptable for me to contact him so I did shortly after I got home.
When I received an email back from him, I vomited before I even read it. I had been nauseous since my boyfriend had discovered that my wound had opened and I guess I had kept it together until that point because I felt like I had to. Once I received the email from my surgeon though I felt like someone that knew what he was talking about and that I trusted completely, was aware of it I could relax and didn’t have to hold it together anymore. Upon seeing a picture of the wound, my surgeon agreed that having it seen by the other doctor was a smart idea. He also agreed that to him it did look pretty superficial. I am trying to remain calm until I can be seen at the wound care center and until I hear from the urologist regarding my tests.
I was taking small steps but plans were beginning to form. The last few months I began to worry less about the wound re-opening. I felt that being that it had been fine for a full year I was pretty much home free. I was beginning to feel excitement for the future when I found myself in a situation that wound up being a test for my gut. In January, I found myself in my local hospital’s Emergency Room.
To make a very long story short I was very sick with a kidney stone and infection. Although, an urologist probably should have followed me, once I hit my late teenage years I was stubborn and for the most part stopped seeing doctors. So, when the emergency room physician asked if I have an urologist that I wanted called I said no. The doctors then called the urologist that they know works well with my primary care physician. When he saw my test results and examined me he said that he would do surgery to remove the kidney stone the following morning. At that point I was on pain medication and was probably a little “foggy” so I didn’t really object to delaying the surgery. Suddenly, late that night, the surgeon came in and told me he had changed plans and was bringing me to the O.R. right then.
I woke up from the surgery in the Intensive Care Unit where I was told that the surgeon was unable to remove the stone because he encountered pus and that I was in I.C.U because my blood pressure was very low, most likely caused by the infection. I asked what was going to happen about the stone because I knew it would have to be removed at some point. I also asked about the pus that was found and I felt that my father gave me the “G rated” version of what all had gone on. The next morning I was feeling a little better and just happened to notice the urologist in the hallway. He came in and told me how much pus he had encountered and that he had put in a stent so that the urine would be able to bypass the stone and that we would schedule the surgery for a few weeks later, once I had been on a round of antibiotics.
A couple of weeks after I was discharged from the hospital I went to the urologist’s office so that we could discuss my options for removing the stone. When I got there my opinion of the surgeon changed. Suddenly, his bedside manor left a lot to be desired. I was put off by it but chalked it up to his having a bad day and tried not to take it personally. We discussed my surgical options and I decided which option I wanted and he agreed that it was probably the right choice. Two days prior to the surgery the hospital called to ask all of the preregistration questions, that at this point I could probably answer in my sleep. Before hanging up with the hospital, I questioned that the surgery would in fact still happen on that day, even though a snowstorm had been forecast. I was told that the hospital takes the surgeon’s lead and that they rarely postpone due to weather. I was glad to hear that I was not going to be postponed because I was experiencing some discomfort and wanted the situation resolved as soon as possible. The day before the surgery I received a phone call from the urologist and he indicated that he believed that we should postpone the surgery for a few days due to the weather. I did not want to postpone the surgery so I did the best I could to advocate for myself. At that point the surgeon said that one of the reasons for possibly postponing was that a piece of equipment was coming from out of state and he did not think that it would arrive on time. I hesitantly agreed that postponing for a few days was an okay idea but that I did have one more question before he hung up. The reaction of the urologist was less than professional but I let it slide without calling him on it and just asked my question.
The surgery to remove the stone and replace the stent was uneventful and I was back at home relaxing by mid afternoon after making a post-op appointment with him to remove the stent. The day he removed the stent was when I had my second gut feeling that maybe he was not the right physician for me. He didn’t explain any part of the procedure for removing the stent and while it is relatively simple, I still feel that it should have been explained to me prior to his doing anything. In addition, he did not numb the area, based on his (incorrect) assumption that I wouldn’t feel anything. I regret not calling him on any of this but I was so blindsided by his actions that I didn’t have it in me to say anything.
During this time I had been continuing to see my therapist and had been telling her what had been going on and that my plan at this point was to look for another doctor while continuing to take his advice to do a few more tests. My thinking was that his thoughts sounded plausible and his ideas to get more testing all made sense to me so getting tests done with him was fine because I figured results could always get sent to another physician if I chose to go that route.
One of the tests that the urologist wanted was for me to get an ultrasound done of my bladder and kidney so we could see if anything was going on that would possibly explain why I am still experiencing pain weeks after the stent was removed. The ultrasound was a few days ago and I tried to ask questions during the test but the technician said that he was unable to discuss my results with me. I was frustrated by this especially when I glanced at the screen and saw what in my mind looked very similar to the kidney stone when I had seen one of my CT scans. The technician said that it was part of my intestine. I had a weird feeling that I was being fed a line but I didn’t feel comfortable pressing for more information. After the ultrasound I explained to my boyfriend what had happened during the test and that I just had this eerie feeling that I saw a kidney stone. He suggested I call the urologist and while I understand why he suggested that, I had been told that he would call me if anything I needed to know about showed up on the ultrasound. As we were going to my house, I began to get a horrible feeling in the pit of my stomach, that something with my wound was suddenly not right.
When we got back to my house my boyfriend, looked at the area and his reaction was less than positive. After I saw a picture of what he had seen, I began to get really scared. After over 15 months of having absolutely no problems whatsoever, my wound looked like it had opened again. I sat up and looked at my boyfriend and told him that I was scared, really scared. People that know me, know that scared is not a feeling I express very easily either. He grabbed me in a hug, said he understood and then suggested I call someone. At that point I had no idea who to call or what to do because I had heard that my amazing surgeon from the Wound Care Center had changed his schedule and so he wasn’t there as often. I did end up calling the wound care center, only to be told that my surgeon had been there the day before and that he wouldn’t be back for a couple of weeks. I was not comfortable with waiting that long so I asked if the other doctor that I had seen a few times was there any time soon and was able to schedule an appointment with her for next week.
We then had to hurry up to get me to my appointment with my therapist. As soon as I saw her I damn near lost my mind. I explained that I have fears about what may have shown up on the ultrasound and then I dropped the big news that my wound had opened again. She told me that I should try to remain positive and that we seem to have caught this at the very beginning before it had a chance to turn into anything catastrophic. She also suggested that I email or call my wound care surgeon because it may make me calm down. I expressed that while I did want his thoughts, I was hesitant to contact him because I felt it was potentially crossing a boundary. She told me that she really felt like it would be acceptable for me to contact him so I did shortly after I got home.
When I received an email back from him, I vomited before I even read it. I had been nauseous since my boyfriend had discovered that my wound had opened and I guess I had kept it together until that point because I felt like I had to. Once I received the email from my surgeon though I felt like someone that knew what he was talking about and that I trusted completely, was aware of it I could relax and didn’t have to hold it together anymore. Upon seeing a picture of the wound, my surgeon agreed that having it seen by the other doctor was a smart idea. He also agreed that to him it did look pretty superficial. I am trying to remain calm until I can be seen at the wound care center and until I hear from the urologist regarding my tests.
Monday, May 13, 2013
Changes
This post is delayed because I have been letting my thoughts simmer for a while. I had to really think about just how open and personal I wanted this post to be. I have decided that after writing so openly about my medical journey, that it would be unfair of me at this point to censor what has been going on with me both physically and emotionally.
My surgeon discharged me from the Wound Care Center on January 23, 2013. When he discharged me, I was happy that my wound was closed but also completely terrified that it would open again as it had previously. My visiting nurses continued to do weekly visits with me for approximately five weeks after discharge, to make sure that my wound didn’t open again. During that time I was still keeping the news of my discharge to myself. While a part of me was incredibly happy and wanted to shout it from the rooftops, another part of me was worried that if it opened again I along with my friends and family would be devastated and that was too much for me to think about.
During that time I was also regularly attending my boyfriend’s appointments at the wound care center so I was still incredibly submerged in wound care. My boyfriend was discharged from the wound care center on April 3, 2013 and since then his wound has remained closed. When we left his last appointment we figured that we could just get on with our lives again.
Unfortunately, getting back to our old lives would prove to be more difficult than I ever imagined it would be. My boyfriend seemed to adjust quickly, but that is probably because his wound didn’t have as great of an impact on his daily life. I however, have had more of a difficult time. First, I am incredibly paranoid about my wound reopening. No matter how many times my boyfriend and I check the area and see that it is still doing well, I cannot get the last time it opened out of my head, or the words that the surgeon said about its reopening could be related to osteo. Two weeks ago when my boyfriend was checking to see if the area was still doing well he told me that the wound was still closed but that something else had developed. I asked to see a picture so that I would know what he was talking about. What I saw was a hemorrhoid. On one hand, I was sort of grossed out by it but on the other hand, it was starting to put the pieces of the puzzle together. You may remember that I had previously seen a couple of streaks of blood after I have gotten off of the toilet but that my nurse had always said the wound was still closed. Suddenly, it seemed to me that the blood must have been coming from the hemorrhoid and that I had just assumed it was from the wound because that’s where my focus had been for so long. As ridiculous as it may seem, I was relieved to have a hemorrhoid.
My boyfriend was spending a few days with me last week and while we were having a discussion, without entirely thinking, I let it slip that I am really not transitioning very well at all. As much as my boyfriend is trying to understand, he is unable to put himself in my shoes. He said that he expects that I would be thrilled to not have to be stuck in my house any more. Logically, I get that he thinks that’s how I would feel but that really isn’t how I feel at all.
While, it is spectacular to be able to go out whenever I want to, it is also a really scary situation. I was basically stuck in my own house for the greater part of four years, unable to do much of anything. As such, it seems that I got used to being both inside and with being near only a handful of people at a time and also was very rarely by myself. Therefore, while he was here visiting, we had decided that we would be going out and doing things, partially, because it would be fun but also to try to get me out of my house. Due to his work schedule and my admittedly strange sleeping patterns he was more tired than either of us expected and so we did not really do anything for a couple of days. While we were discussing the fact that we had been stuck inside, I began to break down and try to explain that I was feeling like a prisoner in my own home and that it really stunk. As much as he tried to understand, he was unable to fully grasp what I was saying. He brought up the fact that nothing was stopping me from going out by myself and I did the best I could to explain to him that I had been with people for so long that being out of my house alone seemed daunting.
I find myself at this point wondering what I need to do to get myself out of this funk. It isn’t just that I am sick of being inside, which I absolutely am but I am also finding myself completely overwhelmed by large crowds of people. I think that it is because I haven’t been exposed to crowds in such a long period of time and that I will eventually readjust but wow, readjusting is really hard. This feels somewhat like a case of depression.
I have experience dealing with depression because I had it as a child and teenager, yet this case feels different in some ways. Depression when I was a teenager felt like I did not want to do anything at all, and it didn’t matter what I had planned for the day. In this case, I feel more stuck. Like I want to go out and do things and have experiences yet I am unable to actually follow through with plans. Maybe these feelings are rooted more in fear, than depression?
My surgeon discharged me from the Wound Care Center on January 23, 2013. When he discharged me, I was happy that my wound was closed but also completely terrified that it would open again as it had previously. My visiting nurses continued to do weekly visits with me for approximately five weeks after discharge, to make sure that my wound didn’t open again. During that time I was still keeping the news of my discharge to myself. While a part of me was incredibly happy and wanted to shout it from the rooftops, another part of me was worried that if it opened again I along with my friends and family would be devastated and that was too much for me to think about.
During that time I was also regularly attending my boyfriend’s appointments at the wound care center so I was still incredibly submerged in wound care. My boyfriend was discharged from the wound care center on April 3, 2013 and since then his wound has remained closed. When we left his last appointment we figured that we could just get on with our lives again.
Unfortunately, getting back to our old lives would prove to be more difficult than I ever imagined it would be. My boyfriend seemed to adjust quickly, but that is probably because his wound didn’t have as great of an impact on his daily life. I however, have had more of a difficult time. First, I am incredibly paranoid about my wound reopening. No matter how many times my boyfriend and I check the area and see that it is still doing well, I cannot get the last time it opened out of my head, or the words that the surgeon said about its reopening could be related to osteo. Two weeks ago when my boyfriend was checking to see if the area was still doing well he told me that the wound was still closed but that something else had developed. I asked to see a picture so that I would know what he was talking about. What I saw was a hemorrhoid. On one hand, I was sort of grossed out by it but on the other hand, it was starting to put the pieces of the puzzle together. You may remember that I had previously seen a couple of streaks of blood after I have gotten off of the toilet but that my nurse had always said the wound was still closed. Suddenly, it seemed to me that the blood must have been coming from the hemorrhoid and that I had just assumed it was from the wound because that’s where my focus had been for so long. As ridiculous as it may seem, I was relieved to have a hemorrhoid.
My boyfriend was spending a few days with me last week and while we were having a discussion, without entirely thinking, I let it slip that I am really not transitioning very well at all. As much as my boyfriend is trying to understand, he is unable to put himself in my shoes. He said that he expects that I would be thrilled to not have to be stuck in my house any more. Logically, I get that he thinks that’s how I would feel but that really isn’t how I feel at all.
While, it is spectacular to be able to go out whenever I want to, it is also a really scary situation. I was basically stuck in my own house for the greater part of four years, unable to do much of anything. As such, it seems that I got used to being both inside and with being near only a handful of people at a time and also was very rarely by myself. Therefore, while he was here visiting, we had decided that we would be going out and doing things, partially, because it would be fun but also to try to get me out of my house. Due to his work schedule and my admittedly strange sleeping patterns he was more tired than either of us expected and so we did not really do anything for a couple of days. While we were discussing the fact that we had been stuck inside, I began to break down and try to explain that I was feeling like a prisoner in my own home and that it really stunk. As much as he tried to understand, he was unable to fully grasp what I was saying. He brought up the fact that nothing was stopping me from going out by myself and I did the best I could to explain to him that I had been with people for so long that being out of my house alone seemed daunting.
I find myself at this point wondering what I need to do to get myself out of this funk. It isn’t just that I am sick of being inside, which I absolutely am but I am also finding myself completely overwhelmed by large crowds of people. I think that it is because I haven’t been exposed to crowds in such a long period of time and that I will eventually readjust but wow, readjusting is really hard. This feels somewhat like a case of depression.
I have experience dealing with depression because I had it as a child and teenager, yet this case feels different in some ways. Depression when I was a teenager felt like I did not want to do anything at all, and it didn’t matter what I had planned for the day. In this case, I feel more stuck. Like I want to go out and do things and have experiences yet I am unable to actually follow through with plans. Maybe these feelings are rooted more in fear, than depression?
Thursday, March 21, 2013
Boyfriend is Doing Well, I Need to Relax and Await Answers
My boyfriend and I continued to treat his wound with the Bactroban ointment and a gauze pad and just as the surgeon predicted, it continued to do very well. When we went back to the wound care center the following week even I was pleased with how small it had gotten. The surgeon was also happy with its progress and told us that we should continue using the ointment for a week and then after that just to cover it to provide some protection, by that point it would probably be closed. The surgeon said that he wouldn’t be able to see us for a few weeks but to make an appointment for three weeks later. We made the appointment for three weeks later and left.
It has now been a little over eight weeks since I have been discharged from the wound care center and approximately three weeks since my visiting nurses have stopped. I am still diligent about making sure that I do not stay in one position for very long and still periodically have my boyfriend check to make sure that my wound is closed. It was still closed after seven weeks so I decided that my dad’s birthday was when I was going to officially tell him the good news. I wrote the dates that I had been discharged, in his birthday card. He was incredibly happy to hear that I had been discharged, and while I suspect that he knew already, he did not say anything. My family and I were just starting to adjust to me being fully discharged when a few days ago I started to get a bad feeling.
I cannot explain what I felt, other than to call it a “gut feeling” I feared that my wound had reopened. I tried to remind myself that I had had that feeling before since I had been discharged and each time my wound had remained closed so I was probably just overreacting. When my boyfriend was here two days ago, I asked him if he would please check for me because I was really nervous, because the day before I thought I may have seen a little bit of drainage in my clothing.
As soon as my boyfriend saw my wound he said, “Yeah, it’s opened”. I was not surprised by what he said but I still needed to see it for myself. He showed me a picture of it and sure enough, a tiny portion, the same part that had opened previously was open again. I took a minute to just stare at the photo in disbelief that this had happened again. I was so upset that I could hardly form coherent thoughts to have a conversation with my boyfriend. At that point, admittedly I got a little more emotional than I usually do; all my boyfriend could do was hold me.
After a few minutes I needed some insight from someone that was a little more removed from the situation so I sent my best friend a text message. Explaining that it was open again and I had no more coping skills left and needed her suggestions. After she got over the initial shock, she suggested that I call the wound care center and see if someone could see me. She also told me that I should try to relax and zone out and forget about things for a while.
I was really upset that my wound had reopened; I also could not believe that it had happened just a few days after telling my family that I was fine. I realize it was just a coincidence but I couldn’t help but think that my making the announcement had somehow caused it to open again. By that point, I knew a decision had to be made about whom I was going to call. I decided to take my friend’s advice and call the wound care center and explain the situation. I did not want to call my visiting nurses because I knew that if one of them appeared it would instantly cause drama in my family and I could not put them through that again. When I called the wound care center the receptionist originally thought I was playing an early April Fool’s joke on them, once I explained that I was serious she began to check the schedule to see what could be done about getting me seen. She was able to make an appointment for me for the week before the surgeon comes back, with the doctor that I had seen when he was out of town before. She then asked me to hold on while she spoke to the nurse that I was most comfortable with at the wound care center. When she came back to the phone she told me that the nurse had suggested I just cover the wound with a clean dry dressing until I could get to the appointment.
My boyfriend covered my wound with one of the few dressings I have left, a Tegaderm Foam Adhesive and we just tried to relax and not worry too much. I go back to the wound care center next week so I am just trying to remain positive, until I get told just what is going on; if the part that reopened is just superficial or if it has depth and will therefore need more treatment.
It has now been a little over eight weeks since I have been discharged from the wound care center and approximately three weeks since my visiting nurses have stopped. I am still diligent about making sure that I do not stay in one position for very long and still periodically have my boyfriend check to make sure that my wound is closed. It was still closed after seven weeks so I decided that my dad’s birthday was when I was going to officially tell him the good news. I wrote the dates that I had been discharged, in his birthday card. He was incredibly happy to hear that I had been discharged, and while I suspect that he knew already, he did not say anything. My family and I were just starting to adjust to me being fully discharged when a few days ago I started to get a bad feeling.
I cannot explain what I felt, other than to call it a “gut feeling” I feared that my wound had reopened. I tried to remind myself that I had had that feeling before since I had been discharged and each time my wound had remained closed so I was probably just overreacting. When my boyfriend was here two days ago, I asked him if he would please check for me because I was really nervous, because the day before I thought I may have seen a little bit of drainage in my clothing.
As soon as my boyfriend saw my wound he said, “Yeah, it’s opened”. I was not surprised by what he said but I still needed to see it for myself. He showed me a picture of it and sure enough, a tiny portion, the same part that had opened previously was open again. I took a minute to just stare at the photo in disbelief that this had happened again. I was so upset that I could hardly form coherent thoughts to have a conversation with my boyfriend. At that point, admittedly I got a little more emotional than I usually do; all my boyfriend could do was hold me.
After a few minutes I needed some insight from someone that was a little more removed from the situation so I sent my best friend a text message. Explaining that it was open again and I had no more coping skills left and needed her suggestions. After she got over the initial shock, she suggested that I call the wound care center and see if someone could see me. She also told me that I should try to relax and zone out and forget about things for a while.
I was really upset that my wound had reopened; I also could not believe that it had happened just a few days after telling my family that I was fine. I realize it was just a coincidence but I couldn’t help but think that my making the announcement had somehow caused it to open again. By that point, I knew a decision had to be made about whom I was going to call. I decided to take my friend’s advice and call the wound care center and explain the situation. I did not want to call my visiting nurses because I knew that if one of them appeared it would instantly cause drama in my family and I could not put them through that again. When I called the wound care center the receptionist originally thought I was playing an early April Fool’s joke on them, once I explained that I was serious she began to check the schedule to see what could be done about getting me seen. She was able to make an appointment for me for the week before the surgeon comes back, with the doctor that I had seen when he was out of town before. She then asked me to hold on while she spoke to the nurse that I was most comfortable with at the wound care center. When she came back to the phone she told me that the nurse had suggested I just cover the wound with a clean dry dressing until I could get to the appointment.
My boyfriend covered my wound with one of the few dressings I have left, a Tegaderm Foam Adhesive and we just tried to relax and not worry too much. I go back to the wound care center next week so I am just trying to remain positive, until I get told just what is going on; if the part that reopened is just superficial or if it has depth and will therefore need more treatment.
Saturday, February 2, 2013
A Different Side of Wound Care
I had a visiting nurse the next day and told her that I was nervous that my wound had possibly opened again but that I was getting mixed signals from my body. When the nurse looked she said that it was still closed and that I should try to calm down, while still paying attention to what my body was telling me. I was happy to learn that it was still closed but was confused by where the drainage had come from. My nurse looked around the entire area of my wound and said that she did not see anything that looked like it had opened or bled. I was relieved that it still appeared to be closed. That is when my nurse told me that either she or my other nurse would see me a week later. Already they were starting the discharge process, which begins with them only seeing me once a week for several weeks. They do this so that we can be sure that the wound is fully closed and seems to be staying closed. I knew how this process was, based on what had occurred several months earlier and I was comfortable with the process, I just did not think that it was going to start so soon. I expressed to my nurse that I was nervous that no one was going to see it for an entire week and she assured me that everything looked fine and also said that she was really only a phone call away if I really felt that things were going wrong. Before she left she asked how my boyfriend was doing and verified that he was going to be seen at the wound care center within a few days.
The next day when my boyfriend came to my house he said that he had to listen to a voicemail because he had missed a call from the wound care center while he was driving to my house. He only listened to part of the message and then told me that he had to call to reschedule for later in the day. I asked to listen to the message and when I heard it I realized that he wasn’t being asked to reschedule for later in the day, but for the following week at a completely different time. I told him that that was what I understood it to be and though I was displeased, I knew he was the patient and so these decisions were his to make. Before he returned their call I told him that to me it did not sound like they were making the connection that we were together and that he should use my name, or at least tell them that I said hello so that maybe something would click in their heads. My boyfriend chose not to use my name or really do a whole lot of advocating for himself so that he would be able to be seen. I sort of overheard the conversation and was peeved that he didn’t say anything about being with me, because it sure did not sound like the wound care center realized it.
When my boyfriend got off the phone I asked him when it was rescheduled for and when he told me I was then even more positive that they did not know we were together just based on the day and time his appointment was made for. I told him that I was pretty sure he was going to get a different doctor than he was originally scheduled to see, my boyfriend disagreed but we both dropped the subject.
The next day was when my boyfriend’s appointment was supposed to have been and I needed to go to the surgeon’s office to speak to people about a different matter. When I was getting out of the car my boyfriend asked me if I could ask the office manager if she had any idea if the surgeon was going to be at the wound care center during the time his appointment had been rescheduled for. I agreed to ask, happy that he was possibly beginning to realize that things were maybe not as he first thought they were.
When I got into the office I was surprised to see my surgeon! I have been in his office quite a bit for reasons and I have never seen him there. When he noticed me he asked what I was doing there and then questioned what had happened with my boyfriend’s appointment. I explained the situation and then asked him if the rescheduled appointment was even going to be with him, he said that it was not. The surgeon then asked if my boyfriend needed to be seen that day and asked if waiting if he was running late would be okay. I said that yes he should be seen and that waiting was not a problem at all. The surgeon then, worked his magic and the appointment was made for a couple of hours later that afternoon. When I left the office and told my boyfriend, he was very happy that it had all gotten worked out.
A couple of hours later when we were about to go into the wound care center I asked my boyfriend if he wanted me to go in with him or if he would prefer if I waited in the waiting room. My boyfriend said that yes he wanted me to go in the appointment with him. While we were waiting in the exam room for the nurse to come in, I asked my boyfriend if he wanted me to do any of the talking or if he wanted me to be a silent observer. He said that I could do some of the talking. When the nurse came into the exam room she did the typical things that happen at a first appointment. My boyfriend and I explained to her how it had recently been treated and then we waited for the surgeon to come in. Admittedly, I was sort of amused by this point; I was not the patient, finally! I also sort of made a joke to the nurse that I was interested to see the surgeon actually do something because based on the location of my wound I had never actually seen him do anything.
When the surgeon came in he examined the wound and asked my boyfriend how he thought he had gotten it in the first place. The surgeon decided that he was going to culture it and also to biopsy it so that we would know if anything really funky was going on inside. The surgeon also said that he wanted my boyfriend to get his leg x-rayed before we left. All of that sounded like a good plan so the surgeon took a small tissue sample. When he took the sample, the wound began to bleed, I watched it but was not alarmed because I knew that good blood flow was a good sign for wound healing. The surgeon then cauterized it so that the bleeding would stop and told the nurse what type of dressing to put on it. He then told my boyfriend he would see him the following week but would call him sooner if the lab results showed anything that he would need to know sooner.
The nurse then came over and explained to both of us the type of dressing that she was putting on it and how often it would need to be changed. My boyfriend was not going to need visiting nurses so it was going to be up to him and to a lesser extent myself to change the dressings and monitor the wound. She was going to put a type of Hydrocolloid dressing on it and said that we should change it every three to five days and more often if the amount of drainage required it. The nurse then looked at the wound and realized that it had begun to bleed again. She held pressure to it and it slowed down, she then said she was going to place a small piece of calcium alginate just over the part that was bleeding, She then placed the Hydrocolloid dressing on top and while looking at the amount of drainage explained that that dressing would need to be changed sooner than in a few days. We left the wound care center certain that we were capable of handling it.
A couple of hours after we got back to my house we decided that the dressing should be changed. I took off the dressing and noticed that it was still bleeding from that one area but only a small trickle. I did not think much of it and so I just put a small piece of calcium alginate over that area and then put the dressing in place. Everything seemed to be going well until just before my boyfriend was about to leave, that is when we realized that a small circle of blood was on the floor. My boyfriend came over to where I was and showed me his leg so that we could determine how to proceed. When I saw that the dressing was saturated with blood and that it was coming out of all the sides I knew instantly that it needed to be changed. When I took off the dressing I was rather appalled by the amount of blood that I saw. The dressing that had been prescribed does not absorb exudate as much as it turns it into a gel. The bloody gel was sitting on top of the wound, I knew that it had to be removed so that I could both change the piece of calcium alginate and examine the area that was bleeding. I took a deep breath as I was putting on a pair of gloves and then carefully grabbed the gel like substance from the wound to dispose of it. After I did that I looked at the part that the blood was coming from and noticed that it was actually bleeding this time and not with just a trickle.
My brain clicked on almost immediately and I shoved a bunch of pillows under my boyfriend’s leg, hoping that the blood would stop if it were elevated. I also held pressure to the wound knowing that the combination of elevation and pressure usually makes bleeding stop. This had gone on for quite awhile and although I did not want to bother the surgeon I knew I was in over my head, so I sent him a text message explaining that it was still actively bleeding and that my boyfriend would only have one dressing left to last the entire week after I redressed it. The surgeon clarified which dressing he had prescribed. I answered his question and then explained that I had changed it once already but that this time the bleeding was worse. The surgeon then told me to use calcium alginate and then instructed me on how to properly apply direct pressure to get the bleeding to stop. I explained that yes we had calcium alginate and that we had used it before also. The surgeon told me, “no worries. It will stop”. The bleeding eventually slowed down considerably but did not seem to stop. When the surgeon sent me a message about an hour later asking if everything was okay, I explained that it had slowed down but never stopped but that a few minutes before his messaged me it had started to actively bleed again and asked him what he thought we should do. I explained that I had applied the dressing and it was saturated. While I waited for him to respond I called and left a message at the wound care center explaining that we were rapidly running out of dressings and questioned if we would be able to pick some up the following morning and to please call me.
Meanwhile we were now at the wee-hours of the morning and my boyfriend had fallen asleep! I was tending to his bloody mess while he lay on the bed snoring. I was not exactly happy with him at that moment but I didn’t really mind it all that much because there was really no logical reasons for the two of us to be awake the entire night. I eventually couldn’t help myself and fell asleep. I slept for about two hours and then woke up. About an hour after I woke up the surgeon replied to my text message and told me that I should wrap it with an Ace bandage over top of the saturated dressing. I woke up my boyfriend and asked him to get an Ace bandage so that I could follow the surgeon’s instructions. Shortly after I applied the Ace wrap I received a phone call from one of the nurses at the wound care center. I explained everything that had gone on the day before and through the night. The nurse said that she was going to get in touch with the surgeon and would call me back shortly. When she called back she explained that she would be at the wound care center for a few hours and that we could come in if we wanted.
We decided that we were going to go to the wound care center to get the wound looked at and also to pick up enough dressings to last the six remaining days until his next appointment. The nurse unwrapped the wound and we saw that it was bleeding the nurse then said that she was going to cauterize it. I explained that the surgeon had done that the previous day and it still bled. The nurse questioned that he had because he had told her that she should cauterize it when she saw it. I said that yes I was pretty sure he had, the nurse then said that she was still going to do it. When she did that the blood seemed to stop, finally! She then asked me what types of dressings I had in my arsenal at home and I named a couple. She then said that she was going to switch him to an Abdominal Pad Dressing (ABD Dressing) and was then going to apply an Ace wrap tightly on top of that. She told us that that needed to be changed on a daily basis and reminded us that she would be at the wound care center the following day if we needed her for anything. We left the wound care center glad that we had made the decision to get the wound looked at and hopeful that we wouldn’t have anymore drama before the next appointment.
The next day when my boyfriend came to my house he said that he had to listen to a voicemail because he had missed a call from the wound care center while he was driving to my house. He only listened to part of the message and then told me that he had to call to reschedule for later in the day. I asked to listen to the message and when I heard it I realized that he wasn’t being asked to reschedule for later in the day, but for the following week at a completely different time. I told him that that was what I understood it to be and though I was displeased, I knew he was the patient and so these decisions were his to make. Before he returned their call I told him that to me it did not sound like they were making the connection that we were together and that he should use my name, or at least tell them that I said hello so that maybe something would click in their heads. My boyfriend chose not to use my name or really do a whole lot of advocating for himself so that he would be able to be seen. I sort of overheard the conversation and was peeved that he didn’t say anything about being with me, because it sure did not sound like the wound care center realized it.
When my boyfriend got off the phone I asked him when it was rescheduled for and when he told me I was then even more positive that they did not know we were together just based on the day and time his appointment was made for. I told him that I was pretty sure he was going to get a different doctor than he was originally scheduled to see, my boyfriend disagreed but we both dropped the subject.
The next day was when my boyfriend’s appointment was supposed to have been and I needed to go to the surgeon’s office to speak to people about a different matter. When I was getting out of the car my boyfriend asked me if I could ask the office manager if she had any idea if the surgeon was going to be at the wound care center during the time his appointment had been rescheduled for. I agreed to ask, happy that he was possibly beginning to realize that things were maybe not as he first thought they were.
When I got into the office I was surprised to see my surgeon! I have been in his office quite a bit for reasons and I have never seen him there. When he noticed me he asked what I was doing there and then questioned what had happened with my boyfriend’s appointment. I explained the situation and then asked him if the rescheduled appointment was even going to be with him, he said that it was not. The surgeon then asked if my boyfriend needed to be seen that day and asked if waiting if he was running late would be okay. I said that yes he should be seen and that waiting was not a problem at all. The surgeon then, worked his magic and the appointment was made for a couple of hours later that afternoon. When I left the office and told my boyfriend, he was very happy that it had all gotten worked out.
A couple of hours later when we were about to go into the wound care center I asked my boyfriend if he wanted me to go in with him or if he would prefer if I waited in the waiting room. My boyfriend said that yes he wanted me to go in the appointment with him. While we were waiting in the exam room for the nurse to come in, I asked my boyfriend if he wanted me to do any of the talking or if he wanted me to be a silent observer. He said that I could do some of the talking. When the nurse came into the exam room she did the typical things that happen at a first appointment. My boyfriend and I explained to her how it had recently been treated and then we waited for the surgeon to come in. Admittedly, I was sort of amused by this point; I was not the patient, finally! I also sort of made a joke to the nurse that I was interested to see the surgeon actually do something because based on the location of my wound I had never actually seen him do anything.
When the surgeon came in he examined the wound and asked my boyfriend how he thought he had gotten it in the first place. The surgeon decided that he was going to culture it and also to biopsy it so that we would know if anything really funky was going on inside. The surgeon also said that he wanted my boyfriend to get his leg x-rayed before we left. All of that sounded like a good plan so the surgeon took a small tissue sample. When he took the sample, the wound began to bleed, I watched it but was not alarmed because I knew that good blood flow was a good sign for wound healing. The surgeon then cauterized it so that the bleeding would stop and told the nurse what type of dressing to put on it. He then told my boyfriend he would see him the following week but would call him sooner if the lab results showed anything that he would need to know sooner.
The nurse then came over and explained to both of us the type of dressing that she was putting on it and how often it would need to be changed. My boyfriend was not going to need visiting nurses so it was going to be up to him and to a lesser extent myself to change the dressings and monitor the wound. She was going to put a type of Hydrocolloid dressing on it and said that we should change it every three to five days and more often if the amount of drainage required it. The nurse then looked at the wound and realized that it had begun to bleed again. She held pressure to it and it slowed down, she then said she was going to place a small piece of calcium alginate just over the part that was bleeding, She then placed the Hydrocolloid dressing on top and while looking at the amount of drainage explained that that dressing would need to be changed sooner than in a few days. We left the wound care center certain that we were capable of handling it.
A couple of hours after we got back to my house we decided that the dressing should be changed. I took off the dressing and noticed that it was still bleeding from that one area but only a small trickle. I did not think much of it and so I just put a small piece of calcium alginate over that area and then put the dressing in place. Everything seemed to be going well until just before my boyfriend was about to leave, that is when we realized that a small circle of blood was on the floor. My boyfriend came over to where I was and showed me his leg so that we could determine how to proceed. When I saw that the dressing was saturated with blood and that it was coming out of all the sides I knew instantly that it needed to be changed. When I took off the dressing I was rather appalled by the amount of blood that I saw. The dressing that had been prescribed does not absorb exudate as much as it turns it into a gel. The bloody gel was sitting on top of the wound, I knew that it had to be removed so that I could both change the piece of calcium alginate and examine the area that was bleeding. I took a deep breath as I was putting on a pair of gloves and then carefully grabbed the gel like substance from the wound to dispose of it. After I did that I looked at the part that the blood was coming from and noticed that it was actually bleeding this time and not with just a trickle.
My brain clicked on almost immediately and I shoved a bunch of pillows under my boyfriend’s leg, hoping that the blood would stop if it were elevated. I also held pressure to the wound knowing that the combination of elevation and pressure usually makes bleeding stop. This had gone on for quite awhile and although I did not want to bother the surgeon I knew I was in over my head, so I sent him a text message explaining that it was still actively bleeding and that my boyfriend would only have one dressing left to last the entire week after I redressed it. The surgeon clarified which dressing he had prescribed. I answered his question and then explained that I had changed it once already but that this time the bleeding was worse. The surgeon then told me to use calcium alginate and then instructed me on how to properly apply direct pressure to get the bleeding to stop. I explained that yes we had calcium alginate and that we had used it before also. The surgeon told me, “no worries. It will stop”. The bleeding eventually slowed down considerably but did not seem to stop. When the surgeon sent me a message about an hour later asking if everything was okay, I explained that it had slowed down but never stopped but that a few minutes before his messaged me it had started to actively bleed again and asked him what he thought we should do. I explained that I had applied the dressing and it was saturated. While I waited for him to respond I called and left a message at the wound care center explaining that we were rapidly running out of dressings and questioned if we would be able to pick some up the following morning and to please call me.
Meanwhile we were now at the wee-hours of the morning and my boyfriend had fallen asleep! I was tending to his bloody mess while he lay on the bed snoring. I was not exactly happy with him at that moment but I didn’t really mind it all that much because there was really no logical reasons for the two of us to be awake the entire night. I eventually couldn’t help myself and fell asleep. I slept for about two hours and then woke up. About an hour after I woke up the surgeon replied to my text message and told me that I should wrap it with an Ace bandage over top of the saturated dressing. I woke up my boyfriend and asked him to get an Ace bandage so that I could follow the surgeon’s instructions. Shortly after I applied the Ace wrap I received a phone call from one of the nurses at the wound care center. I explained everything that had gone on the day before and through the night. The nurse said that she was going to get in touch with the surgeon and would call me back shortly. When she called back she explained that she would be at the wound care center for a few hours and that we could come in if we wanted.
We decided that we were going to go to the wound care center to get the wound looked at and also to pick up enough dressings to last the six remaining days until his next appointment. The nurse unwrapped the wound and we saw that it was bleeding the nurse then said that she was going to cauterize it. I explained that the surgeon had done that the previous day and it still bled. The nurse questioned that he had because he had told her that she should cauterize it when she saw it. I said that yes I was pretty sure he had, the nurse then said that she was still going to do it. When she did that the blood seemed to stop, finally! She then asked me what types of dressings I had in my arsenal at home and I named a couple. She then said that she was going to switch him to an Abdominal Pad Dressing (ABD Dressing) and was then going to apply an Ace wrap tightly on top of that. She told us that that needed to be changed on a daily basis and reminded us that she would be at the wound care center the following day if we needed her for anything. We left the wound care center glad that we had made the decision to get the wound looked at and hopeful that we wouldn’t have anymore drama before the next appointment.
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