I'm back to typing with one hand, following the surgical work done on my fistula. Unfortunately, the fistula could not be repaired, so a graft was placed in my arm. The surgery went well. I think I tolerate the whole process pretty well. I was pretty lethargic the day after the surgery, but I figure that's due to the anesthesia and the pain medicine they gave me. They gave me a script for oxycodone, but I only took two of those since the surgery. I won't need anymore of those.
To help with the swelling in my arm, I'm taking cephalexin twice a day. I've also been resting, keeping my arm elevated. The key is to get my arm healed, so I can do my dialysis in my arm, and get rid of the catheter in my chest.
While I was relaxing yesterday, I got the call from Holly at UNMC, telling me that the transplant team met again, with Dr. Morris present, to discuss my case. Dr. Morris is on board, with the condition that I have a living donor.
It's time to go to work and get some potential donors lined up to be tested. Way back at the beginning of this process, Jeannie said she had a feeling I would be getting a transplant in 2011. She may turn out to be right about that.
Showing posts with label UNMC. Show all posts
Showing posts with label UNMC. Show all posts
Saturday, June 18, 2011
Thursday, June 16, 2011
Doubleheader Day
No more butchering song lyrics, at least not with this post!
I'm in dialysis earlier than normal today, because it's doubleheader day. Once I finish with dialysis, I go home for a few minutes and then it's off to Bergan for some repair work on my fistula. Regular readers will remember that my fistula was infiltrated by one of the techs a few weeks back. Well, today, after a couple of reschedules, Dr. Feldhaus is going to go in and either clear the clots and widen the fistula, or he will place a graft in my arm to replace the fistula. I don't know that I have a preference for what he does. I just want to get back to using my arm for dialysis instead of the catheters.
Doubleheader day means that I didn't enjoy a slice of bread before going to dialysis as I usually do. It also means that I can't enjoy any ice chips while I'm in the chair. To prepare for this afternoon's event, I have to be empty.
Since it's Thursday, I'm hoping the UNMC transplant team will discuss my case today, and that Dr. Morris will be in the room for the conversation. That should give me the final answer on whether or not I'll be able to proceed with the transplant.
Before signing off this morning, I'm curious about something.
It's easy to assume that the things we're going through in life are unique to us. The reality, at least the reality I've encountered over the years, is that many of us go through the same experiences in our lifetime. With that in mind, how many of you reading this blog are going through kidney issues? I can tell you that sharing the experience, and realizing that there are others dealing with the same questions and concerns, helps make the whole thing a little easier to handle.
Thanks in advance for sharing!
I'm in dialysis earlier than normal today, because it's doubleheader day. Once I finish with dialysis, I go home for a few minutes and then it's off to Bergan for some repair work on my fistula. Regular readers will remember that my fistula was infiltrated by one of the techs a few weeks back. Well, today, after a couple of reschedules, Dr. Feldhaus is going to go in and either clear the clots and widen the fistula, or he will place a graft in my arm to replace the fistula. I don't know that I have a preference for what he does. I just want to get back to using my arm for dialysis instead of the catheters.
Doubleheader day means that I didn't enjoy a slice of bread before going to dialysis as I usually do. It also means that I can't enjoy any ice chips while I'm in the chair. To prepare for this afternoon's event, I have to be empty.
Since it's Thursday, I'm hoping the UNMC transplant team will discuss my case today, and that Dr. Morris will be in the room for the conversation. That should give me the final answer on whether or not I'll be able to proceed with the transplant.
Before signing off this morning, I'm curious about something.
It's easy to assume that the things we're going through in life are unique to us. The reality, at least the reality I've encountered over the years, is that many of us go through the same experiences in our lifetime. With that in mind, how many of you reading this blog are going through kidney issues? I can tell you that sharing the experience, and realizing that there are others dealing with the same questions and concerns, helps make the whole thing a little easier to handle.
Thanks in advance for sharing!
Tuesday, June 14, 2011
I Got the News Today, Oh Boy!
I don't know why all these song lyrics are coming out of me lately, but they are, so I"m going to go with it.
I actually got the news yesterday. Holly called me to say that I had gotten great marks on all my evaluations. She said that Dr. Miles felt it was best for me to proceed with the transplant, provided I had a living donor. That's my condition for this to move forward.
The other shoe in this conversation is that Dr. Morris was not at the team meeting, so his voice was not a part of the discussion. Naturally, I had questions. First and foremost, was his voice able to stop this process? Holly couldn't answer that, which I understood, but it was a question I wanted her to take back and get answered for me. There's no reason for me to start the hardcore solicitation of potential living donors if I haven't cleared all the hurdles in the evaluation process.
Holly was going to ask Dr. Miles if he had any idea of how Dr, Morris viewed my case, and whether or not the two were in agreement on my proceeding under the condition that I have a live donor. Hopefully, I'll learn that today, but I'm prepared to wait until Friday before I know for sure.
Now, I still need to visit with the UNMC Social Worker next Wednesday, so I would be waiting for the "official" acceptance and eligibility letter until the end of the month anyway. But, since I don't expect to be tripped up by the Social Worker, I think it's safe to say that the medical hurdle is the one that will pave the way for me to begin serious living donor recruitment.
As the eternal optimist, I'm pleased with the news I got yesterday from Holly. The additional waiting goes with the territory, I guess, so there's no sense in getting worked up about it.
I actually got the news yesterday. Holly called me to say that I had gotten great marks on all my evaluations. She said that Dr. Miles felt it was best for me to proceed with the transplant, provided I had a living donor. That's my condition for this to move forward.
The other shoe in this conversation is that Dr. Morris was not at the team meeting, so his voice was not a part of the discussion. Naturally, I had questions. First and foremost, was his voice able to stop this process? Holly couldn't answer that, which I understood, but it was a question I wanted her to take back and get answered for me. There's no reason for me to start the hardcore solicitation of potential living donors if I haven't cleared all the hurdles in the evaluation process.
Holly was going to ask Dr. Miles if he had any idea of how Dr, Morris viewed my case, and whether or not the two were in agreement on my proceeding under the condition that I have a live donor. Hopefully, I'll learn that today, but I'm prepared to wait until Friday before I know for sure.
Now, I still need to visit with the UNMC Social Worker next Wednesday, so I would be waiting for the "official" acceptance and eligibility letter until the end of the month anyway. But, since I don't expect to be tripped up by the Social Worker, I think it's safe to say that the medical hurdle is the one that will pave the way for me to begin serious living donor recruitment.
As the eternal optimist, I'm pleased with the news I got yesterday from Holly. The additional waiting goes with the territory, I guess, so there's no sense in getting worked up about it.
Saturday, June 4, 2011
Kidney Transplant Evaluation - Day 2
The second day of evaluations was interesting. Generally speaking it was a more positive day than our first day. Not that day one wasn't a positive experience, but as they say, you remember the negative sometimes more than you do the positive. The words from Dr. Morris are still lurking in the back of my mind, but I'm getting a better handle on that now too.
One of the things Dr. Morris kept trying to get across to me was that transplant is not a cure. I remembered that yesterday, and I fully agree with that. When I get a new kidney, I'm still going to be a guy with IGA nephropathy. A new kidney won't change that. But, I'll be a lot smarter about this, having gone through what I've gone through since September. If they put a new kidney in me, I will care for that thing so well, I will get the maximum life it has to offer me.
So, armed with that attitude, Jeannie and I arrived at UNMC around 7:15am, and checked in for my ultrasound. We ended up in the wrong place, but while I was there I was able to get my second lab done. It was a good mistake and I was glad to get that out of the way right away. We were guided down to the right place for the ultrasound, so we ended up being there on time.
The ultrasound was no big deal, but I was glad that the gel was warm and not cold. It's the little things! The tech doing the ultrasound was chatty, and she explained what was happening on the monitor. The grainy black and white image was hard for me to focus on, but she was happy with the pictures she got.
Since I had to fast before this test, and I had to eat before 9am to prepare for the afternoon's stress test, we headed up to the cafeteria to eat breakfast. From there is was on to two consultations.
The first was with a nutritional person. Her name was Meghan, and she must have been an intern. She told us she was hoping to get a job after her UNMC experience ended. She had lots of good things to say about my lab results.They were the best she had seen that week, and it was her opinion that I was in good shape for a transplant.
Our next stop was with a staff psychiatrist. Dr. Keim and I talked for about an hour, and I was able to share my thoughts on Wednesday conversation with Dr. Morris. We talked on a variety of topics, and when we were finished she told me that she would speak in favor of the transplant when everyone got together to discuss my case next week.
My final stop for the day was the Heart Center. I had an echo-cardiogram and then a stress test. This was wild. The stress test is medically induce with a couple different drugs. First off, they got my heart beating so loud it felt like it was going to jump out of my chest. Then they added another drug that made my heart race like an Indy race car. The pictures they got were pretty awesome. At least they were to me.
The doctor that was supervising all of this said that I passed the test. I wasn't worried about that, I guess, but you never know, right? He guided the nurse through injecting the medicine that would slow down my heart, and within about10 minutes or so, my heart rate was back to normal. One of the side affects of all of this was a really bad case of dry mouth. The nurse warned me about this before we started, and she didn't undersell. I had to slam down the water during the rest of the day to finally feel normal.
I noticed this morning I came into dialysis a little bit heavier than normal, but as I write this I can see that most of it was water, and it's coming off just fine.
So now, we wait. The transplant team meets next Thursday to determine if I will be eligible to be placed on the transplant list. I'm hopeful, but given how the conversations went with the doctor and the surgeon, I have to be open to the possibility that they will make me wait.
To pass the time next week, I will get to focus on a Monday PET scan and then a maintenance treatment for the CLL on Friday. In between, I'll have plenty of work to catch up on. It should be a fast week.
One of the things Dr. Morris kept trying to get across to me was that transplant is not a cure. I remembered that yesterday, and I fully agree with that. When I get a new kidney, I'm still going to be a guy with IGA nephropathy. A new kidney won't change that. But, I'll be a lot smarter about this, having gone through what I've gone through since September. If they put a new kidney in me, I will care for that thing so well, I will get the maximum life it has to offer me.
So, armed with that attitude, Jeannie and I arrived at UNMC around 7:15am, and checked in for my ultrasound. We ended up in the wrong place, but while I was there I was able to get my second lab done. It was a good mistake and I was glad to get that out of the way right away. We were guided down to the right place for the ultrasound, so we ended up being there on time.
The ultrasound was no big deal, but I was glad that the gel was warm and not cold. It's the little things! The tech doing the ultrasound was chatty, and she explained what was happening on the monitor. The grainy black and white image was hard for me to focus on, but she was happy with the pictures she got.
Since I had to fast before this test, and I had to eat before 9am to prepare for the afternoon's stress test, we headed up to the cafeteria to eat breakfast. From there is was on to two consultations.
The first was with a nutritional person. Her name was Meghan, and she must have been an intern. She told us she was hoping to get a job after her UNMC experience ended. She had lots of good things to say about my lab results.They were the best she had seen that week, and it was her opinion that I was in good shape for a transplant.
Our next stop was with a staff psychiatrist. Dr. Keim and I talked for about an hour, and I was able to share my thoughts on Wednesday conversation with Dr. Morris. We talked on a variety of topics, and when we were finished she told me that she would speak in favor of the transplant when everyone got together to discuss my case next week.
My final stop for the day was the Heart Center. I had an echo-cardiogram and then a stress test. This was wild. The stress test is medically induce with a couple different drugs. First off, they got my heart beating so loud it felt like it was going to jump out of my chest. Then they added another drug that made my heart race like an Indy race car. The pictures they got were pretty awesome. At least they were to me.
The doctor that was supervising all of this said that I passed the test. I wasn't worried about that, I guess, but you never know, right? He guided the nurse through injecting the medicine that would slow down my heart, and within about10 minutes or so, my heart rate was back to normal. One of the side affects of all of this was a really bad case of dry mouth. The nurse warned me about this before we started, and she didn't undersell. I had to slam down the water during the rest of the day to finally feel normal.
I noticed this morning I came into dialysis a little bit heavier than normal, but as I write this I can see that most of it was water, and it's coming off just fine.
So now, we wait. The transplant team meets next Thursday to determine if I will be eligible to be placed on the transplant list. I'm hopeful, but given how the conversations went with the doctor and the surgeon, I have to be open to the possibility that they will make me wait.
To pass the time next week, I will get to focus on a Monday PET scan and then a maintenance treatment for the CLL on Friday. In between, I'll have plenty of work to catch up on. It should be a fast week.
Thursday, May 26, 2011
Recalibrated
I've had time to let go of being angry about the fistula infiltration. I was supposed to go in this afternoon and see Dr. Feldhaus, the surgeon who placed the fistula back in December, but he had a couple emergency surgeries which caused him to cancel our appointment. We're rescheduled for next Thursday afternoon.
I'm anxious to see him, because I'd like his take on my fistula and to determine if it needs to be opened up. While I'm with him I may ask him to draw a map on my arm, so the staff at the dialysis clinic can see where to stick me! I swear I wouldn't wash my arm for a week if he would do that.
So, while my catheter gets a stay from being yanked out, I'm focusing on some other upcoming appointments. I start pre-transplant evaluations next Wednesday. I'm pretty stoked about this.
Dr. Tarantolo has been a great advocate for me, calling the head of the transplant department on my behalf and giving him the lowdown on my leukemia. Even though my leukemia is in remission, there's a worry that a transplant will cause the disease to manifest again. It's possible, but Dr. Tarantolo, thinks the odds are very slim, and in the meantime, the transplant will increase my quality of life for many years. The good outweighs the potential problems in this case.
The evaluation process will involve three days of outpatient testing and consultations with the transplant team. I'll be poked, stress-tested, interviewed by a psychiatrist, and filled with so much knowledge that my head will probably explode. I can't wait.
I don't know why the thought of going through the transplant doesn't scare me. It would be the biggest surgery I've ever undergone, but then, I've never had any real surgery experience. Maybe once this is over I'll think differently, but for now I'm comfortable with the coming attractions. Even though dialysis is not a hardship and we've made the adjustments, it would be nice to get back to a life where three trips a week to dialysis wasn't part of my lifestyle.
In between evaluation sessions, I'll be getting a PET scan and another maintenance treatment, so neither ailment will be lacking for attention next month.
With my attitude re-calibrated back to its positive state, I'm ready to experience the evaluation process.
I'm anxious to see him, because I'd like his take on my fistula and to determine if it needs to be opened up. While I'm with him I may ask him to draw a map on my arm, so the staff at the dialysis clinic can see where to stick me! I swear I wouldn't wash my arm for a week if he would do that.
So, while my catheter gets a stay from being yanked out, I'm focusing on some other upcoming appointments. I start pre-transplant evaluations next Wednesday. I'm pretty stoked about this.
Dr. Tarantolo has been a great advocate for me, calling the head of the transplant department on my behalf and giving him the lowdown on my leukemia. Even though my leukemia is in remission, there's a worry that a transplant will cause the disease to manifest again. It's possible, but Dr. Tarantolo, thinks the odds are very slim, and in the meantime, the transplant will increase my quality of life for many years. The good outweighs the potential problems in this case.
The evaluation process will involve three days of outpatient testing and consultations with the transplant team. I'll be poked, stress-tested, interviewed by a psychiatrist, and filled with so much knowledge that my head will probably explode. I can't wait.
I don't know why the thought of going through the transplant doesn't scare me. It would be the biggest surgery I've ever undergone, but then, I've never had any real surgery experience. Maybe once this is over I'll think differently, but for now I'm comfortable with the coming attractions. Even though dialysis is not a hardship and we've made the adjustments, it would be nice to get back to a life where three trips a week to dialysis wasn't part of my lifestyle.
In between evaluation sessions, I'll be getting a PET scan and another maintenance treatment, so neither ailment will be lacking for attention next month.
With my attitude re-calibrated back to its positive state, I'm ready to experience the evaluation process.
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