The last dialysis of the week, so it's time to put my new strategy into place one more time. I've had my breakfast, so now it's time to write and keep my hands off the bad food!
Today was a pretty routine dialysis day today. No problems and no blood spilled. I read an interesting article about five kidney transplants in Des Moines, IA. Here's the link to the article.
Five Transplants in Des Moines
I turned in four days of food logging into Jan this morning, so she'll have that to review as we track my progress. I'm excited about getting this excess weight off of me, especially since I know this is the year I get transplanted.
Showing posts with label kidney transplant. Show all posts
Showing posts with label kidney transplant. Show all posts
Saturday, January 12, 2013
Saturday, January 21, 2012
The Care Conference
One of the things that happens at DCI, and maybe it happens at all clinics, is the Care Conference. This is a brief meeting of the dialysis patient and the social worker, dietician, nurse manager, and in my case, Dr. Frock.
The first meeting happened pretty early on in my dialysis experience. I think it happened within the first month, and then again at six months, and then there was yesterday's conference. There isn't a lot of new ground broken at these meetings, since I see Dr. Frock once a month, and I have regular conversations with the others. It does provide a forum for all the parties to discuss my case at the same time. Since Jeannie only gets her information from me, the conference is a chance for her to hear from everyone directly, which I think is good for understanding.
I had two things I wanted to talk about with the group yesterday. The first item was the length of each dialysis session. Since going to the fistula for my dialysis, I've tacked on an extra 10-15 minutes to the time I'm at the clinic. The extra time is due to waiting for my arm to stop bleeding after the needles are taken out. I usually clot up pretty fast, but by the time someone comes and tapes me down, a nurse listens to me, and I get my blood pressure checked, I'm the last one out the door.
Since I go to work after dialysis, it's important for me to have enough time to get home, eat, and shower before heading in to the office. I've talked with Dr. Frock about cutting 15 minutes off my time, which would at least put me back to the time I had when we were using the catheters. Dr. Frock's answer to this was simply, no. He is not a fan of cutting back on time. He believes his patients should have 12 hours a week of dialysis, and that's it.
So, yesterday I wanted to talk about this with everyone in the room. My blood work is sensational and the number that shows how clean my blood is getting, the KT/V, is also above normal. I thought I had a good case.
Dr. Frock brought it up right away. I told him that I needed at least 15 minutes and maybe even a half hour to be able to get into work to handle my responsibilities there. While I really wanted to sit in the dialysis chair for less time, the bottom line was being able to get out of the clinic at a decent time to allow me to eat, get ready for work, and get to work by noon or so.
To show I was interested in other alternatives, I also mentioned I would be willing to come in earlier, as long as it didn't put stress on the staff and the current on/off schedules of the other patients. It turns out that Janet, the nurse manager, was going to implement an earlier starting time of 5:45 for the first patients. She offered me the 5:45 start for next Tuesday, which should give me an extra 30 minutes. I'd rather have less dialysis time, but 30 minutes is 30 minutes.
My other question was about my Epogen shot, which started up again last Tuesday. I stopped getting the weekly shot because my hemoglobin had gone up to around 12, which is above the range where they issue the shot. Sometime in between the January labs and the follow-up blood draw that happened around the 13th, my hemoglobin dropped, causing the resumption of the Epogen shot.
I learned all of this yesterday. When I needed to hear it was the day I got the shot. Instead, all I heard was that's the way the computer shoots out the instructions, so that's why I got the shot. I don't do well with explanations like that, so I asked Jan, the dietician about it. She showed me how to calculate my hemoglobin, so I would be able to tell from my hematocrit number what was happening.
Janet apologized for that explanation, gave me a more in depth explanation, and we moved on. It wasn't a big deal, but I do like to know why things are happening to me, and blaming a computer for all of that isn't very comforting. I like facts, especially when it comes to my care.
After getting through my two questions, we talked about my transplant status, and then the dietician and social worker added their comments. Everyone was real positive about my outlook and my health. I think they are all rooting for me to get a kidney, so I can get on with my life.
And that's the care conference. Pretty quick, but it's a nice way for us all to sit down and talk about my case.
The first meeting happened pretty early on in my dialysis experience. I think it happened within the first month, and then again at six months, and then there was yesterday's conference. There isn't a lot of new ground broken at these meetings, since I see Dr. Frock once a month, and I have regular conversations with the others. It does provide a forum for all the parties to discuss my case at the same time. Since Jeannie only gets her information from me, the conference is a chance for her to hear from everyone directly, which I think is good for understanding.
I had two things I wanted to talk about with the group yesterday. The first item was the length of each dialysis session. Since going to the fistula for my dialysis, I've tacked on an extra 10-15 minutes to the time I'm at the clinic. The extra time is due to waiting for my arm to stop bleeding after the needles are taken out. I usually clot up pretty fast, but by the time someone comes and tapes me down, a nurse listens to me, and I get my blood pressure checked, I'm the last one out the door.
Since I go to work after dialysis, it's important for me to have enough time to get home, eat, and shower before heading in to the office. I've talked with Dr. Frock about cutting 15 minutes off my time, which would at least put me back to the time I had when we were using the catheters. Dr. Frock's answer to this was simply, no. He is not a fan of cutting back on time. He believes his patients should have 12 hours a week of dialysis, and that's it.
So, yesterday I wanted to talk about this with everyone in the room. My blood work is sensational and the number that shows how clean my blood is getting, the KT/V, is also above normal. I thought I had a good case.
Dr. Frock brought it up right away. I told him that I needed at least 15 minutes and maybe even a half hour to be able to get into work to handle my responsibilities there. While I really wanted to sit in the dialysis chair for less time, the bottom line was being able to get out of the clinic at a decent time to allow me to eat, get ready for work, and get to work by noon or so.
To show I was interested in other alternatives, I also mentioned I would be willing to come in earlier, as long as it didn't put stress on the staff and the current on/off schedules of the other patients. It turns out that Janet, the nurse manager, was going to implement an earlier starting time of 5:45 for the first patients. She offered me the 5:45 start for next Tuesday, which should give me an extra 30 minutes. I'd rather have less dialysis time, but 30 minutes is 30 minutes.
My other question was about my Epogen shot, which started up again last Tuesday. I stopped getting the weekly shot because my hemoglobin had gone up to around 12, which is above the range where they issue the shot. Sometime in between the January labs and the follow-up blood draw that happened around the 13th, my hemoglobin dropped, causing the resumption of the Epogen shot.
I learned all of this yesterday. When I needed to hear it was the day I got the shot. Instead, all I heard was that's the way the computer shoots out the instructions, so that's why I got the shot. I don't do well with explanations like that, so I asked Jan, the dietician about it. She showed me how to calculate my hemoglobin, so I would be able to tell from my hematocrit number what was happening.
Janet apologized for that explanation, gave me a more in depth explanation, and we moved on. It wasn't a big deal, but I do like to know why things are happening to me, and blaming a computer for all of that isn't very comforting. I like facts, especially when it comes to my care.
After getting through my two questions, we talked about my transplant status, and then the dietician and social worker added their comments. Everyone was real positive about my outlook and my health. I think they are all rooting for me to get a kidney, so I can get on with my life.
And that's the care conference. Pretty quick, but it's a nice way for us all to sit down and talk about my case.
Friday, December 23, 2011
Tis the Season
Sitting in the dialysis chair with antlers resting on my ball cap seems like the perfect time to do a little writing. The blood is moving effortlessly out of my arm, into the machine that filters it and returns it back to me. My fistula is working like a champ.
The catheter that had to go in after my fistula was worked on is gone. In other words, things are starting to get back to normal. Well, the new normal anyway.
This week the new normal included a maintenance treatment of Rituxan, so my CLL got a little attention. I also got to spend some quality time with my dentist. Add in my dialysis visits, and health care was almost a full time job this week.
All this health care is doing great things for me. Seriously, I don't think I've felt this good in a long time. All my blood work this month has been great. It's a great time to get started back to getting my body in shape. There's a transplant in my future, and I want to make sure I'm in shape to accept my new organ.
No, there's no donor in sight yet, but I feel like it's just a matter of time. So for now, it's time to enjoy the Christmas season, the beautiful weather that makes it possible for us to drive back and spend the holiday with Jeannie's family, and just let things unfold the way they are supposed to unfold. I'm open to all the possibilities.
All that's left to say is Merry Christmas to all!
The catheter that had to go in after my fistula was worked on is gone. In other words, things are starting to get back to normal. Well, the new normal anyway.
This week the new normal included a maintenance treatment of Rituxan, so my CLL got a little attention. I also got to spend some quality time with my dentist. Add in my dialysis visits, and health care was almost a full time job this week.
All this health care is doing great things for me. Seriously, I don't think I've felt this good in a long time. All my blood work this month has been great. It's a great time to get started back to getting my body in shape. There's a transplant in my future, and I want to make sure I'm in shape to accept my new organ.
No, there's no donor in sight yet, but I feel like it's just a matter of time. So for now, it's time to enjoy the Christmas season, the beautiful weather that makes it possible for us to drive back and spend the holiday with Jeannie's family, and just let things unfold the way they are supposed to unfold. I'm open to all the possibilities.
All that's left to say is Merry Christmas to all!
Saturday, August 20, 2011
If it's Saturday, it Must Be a Dialysis Day
I'm one of nine people sitting in a chair with tubes running into a catheter or a fistula. I'm the only one who is awake, which I blame on being a morning person. I generally don't do any work on Saturday's, so I spend my computer getting caught up on some of the other blogs I read.
Before they started tapping into my fistula I would write pretty consistently. With the fistula I'm limited to typing with my left hand. It's not a problem, but it does make for slow writing.
I can finally say that going to dialysis three times a week is starting to get old. I'm glad enough for the results I get, but I want to feel like this without spending four hours connected to something that looks like a second cousin to R2D2. To that end, there's been a little movement on the transplant front.
A co-worker has decided that she wants to get tested to see if we're a match. One of my sisters is also giving donation some serious consideration. My sister actually gave me a good picture of what the transplant question looks like from the perspective of a potential donor.
No surprise, the idea of having an organ removed and given over to someone else is a big thing. Generally not something one does on impulse. As she explained it to us, wanting to do this for her brother isn't a huge leap. Of all the factors that make up the decision, that's the easiest one to get behind.
The challenging part is getting behind being off work for 2-3 weeks. My sister is self-employed, so she gets paid when she works and she doesn't when she doesn't. She says that's manageable, which it is, but that's another reason donation isn't done on impulse.
The other factor, the one that I don't know a person will ever get an answer for, is the emotional aspect of giving up a part of your body's infrastructure. Sure, we're more than the parts that make up our physical being, but from a practical standpoint, it's surgery to remove an organ. Science bumping up against the spiritual.
So, we'll see how this turn out. I want my sister (anyone, actually) to be at peace with their decision. I've made the intellectual case with my sister. She's seen the videos that explain the process for both the donor and the recipient, so while she may have more questions down the road, she's seen enough to start the process of processing.
Before they started tapping into my fistula I would write pretty consistently. With the fistula I'm limited to typing with my left hand. It's not a problem, but it does make for slow writing.
I can finally say that going to dialysis three times a week is starting to get old. I'm glad enough for the results I get, but I want to feel like this without spending four hours connected to something that looks like a second cousin to R2D2. To that end, there's been a little movement on the transplant front.
A co-worker has decided that she wants to get tested to see if we're a match. One of my sisters is also giving donation some serious consideration. My sister actually gave me a good picture of what the transplant question looks like from the perspective of a potential donor.
No surprise, the idea of having an organ removed and given over to someone else is a big thing. Generally not something one does on impulse. As she explained it to us, wanting to do this for her brother isn't a huge leap. Of all the factors that make up the decision, that's the easiest one to get behind.
The challenging part is getting behind being off work for 2-3 weeks. My sister is self-employed, so she gets paid when she works and she doesn't when she doesn't. She says that's manageable, which it is, but that's another reason donation isn't done on impulse.
The other factor, the one that I don't know a person will ever get an answer for, is the emotional aspect of giving up a part of your body's infrastructure. Sure, we're more than the parts that make up our physical being, but from a practical standpoint, it's surgery to remove an organ. Science bumping up against the spiritual.
So, we'll see how this turn out. I want my sister (anyone, actually) to be at peace with their decision. I've made the intellectual case with my sister. She's seen the videos that explain the process for both the donor and the recipient, so while she may have more questions down the road, she's seen enough to start the process of processing.
Thursday, July 21, 2011
Doctor Visits
Some days the cynical part of me takes control and starts writing. Today is one of those days.
Let's set the scene. It's a dialysis day. Most of the patients here with me are either sleeping or watching TV. Some do both at the same time!
With all of this activity going on, guess who walks in? A doctor or a nurse practitioner. From what I understand, Medicare requires them to make a monthly visit to see their dialysis patients. It doesn't matter if there are no changes to report or if the patient has any questions. The doctor appears at a convenient day for them to make their rounds. The whole event can take anywhere from 10 - 15 minutes and then like a tornado disappearing back into the clouds, the doctor (or the nurse practitioner) is gone.
While I can't say that I've heard all the conversations that take place, I can tell you what happens when Dr. Frock is in the house to visit his patients. He's got three of us here on Tuesday, Thursday, and Saturday. He generally starts with me.
He gets my latest lab results, which could be 2-4 weeks old, depending on the timing of his visit. He goes over the results, usually in a less detailed manner than the dietician does the first day the results are back in, and then he asks some questions about how I'm feeling, he listens to my heart and lungs, and then rolls on over to my neighbor.
Sometimes, I get bonus coverage, and he'll listen to my fistula (since my fistula has been on the DL for a couple months, he's done this the last two times he's visited) and he'll check my legs for swelling.
Each month I get an Explanation of Benefits report from the insurance company, and there's his visit, listed along with the other items on the report. Any guesses on what the charges are for these visits? Go on, guess. I'll wait.
Since this may differ between patients and insurance carriers, let's just say that the original charge is in the $400 range, but thanks to my insurance carrier, Dr. Frock gets about $150 less than that.
Now, I don't begrudge anyone for making their living. I have grown to respect the care and expertise I've received from the doctors I've encountered. So, before anyone thinks I think the doctors should make these visits for nothing, sit back down in your chair.
If these doctor visits are a Medicare requirement, it would seem to me that a boatload of money could be saved by removing the requirement that these visits have to take place monthly. I don't need to see my doctor monthly. Certainly not for all the information we share. There's no real value in that for me as a patient.
The clinic nurses look out for their patients pretty darn good. When we need something that requires a doctor's approval or input, there's never any hesitation on the staff's part to make contact. If I feel like
I need some questions answered, I could always call Dr. Frock and ask if he could come to the clinic for a visit. A scheduled visit would be more useful for the doctor and the patient.
I know, the cynic in me is probably missing the bigger picture in these visits. On the other hand, with no shortage of patients on dialysis, I don't think that nephrologists are going to be wondering where their next meal is coming from for quite some time.
It should also be clear here that I think Dr. Frock is a fine doctor. I enjoy talking with him, but I lke talking to lots of people. That doesn't mean I want to get a bill for each conversation.
That's my rant for the day. It's something that has always gnawed at me, so I needed to get this off my chest. I'm better now. Do any of the other dialysis patients that may look in on this blog ever wonder about these doctor visits?
Speaking of doctor visits, and taking a much less cynical tone, I'm scheduled to see Dr. Feldhaus today. I'm hoping to hear him give me the all clear, so the nurses can start back to using my fistula. Getting the fistula off the DL means that I'm closer to getting the catheter removed from my chest. That will be a red letter day for sure!
Let's set the scene. It's a dialysis day. Most of the patients here with me are either sleeping or watching TV. Some do both at the same time!
With all of this activity going on, guess who walks in? A doctor or a nurse practitioner. From what I understand, Medicare requires them to make a monthly visit to see their dialysis patients. It doesn't matter if there are no changes to report or if the patient has any questions. The doctor appears at a convenient day for them to make their rounds. The whole event can take anywhere from 10 - 15 minutes and then like a tornado disappearing back into the clouds, the doctor (or the nurse practitioner) is gone.
While I can't say that I've heard all the conversations that take place, I can tell you what happens when Dr. Frock is in the house to visit his patients. He's got three of us here on Tuesday, Thursday, and Saturday. He generally starts with me.
He gets my latest lab results, which could be 2-4 weeks old, depending on the timing of his visit. He goes over the results, usually in a less detailed manner than the dietician does the first day the results are back in, and then he asks some questions about how I'm feeling, he listens to my heart and lungs, and then rolls on over to my neighbor.
Sometimes, I get bonus coverage, and he'll listen to my fistula (since my fistula has been on the DL for a couple months, he's done this the last two times he's visited) and he'll check my legs for swelling.
Each month I get an Explanation of Benefits report from the insurance company, and there's his visit, listed along with the other items on the report. Any guesses on what the charges are for these visits? Go on, guess. I'll wait.
Since this may differ between patients and insurance carriers, let's just say that the original charge is in the $400 range, but thanks to my insurance carrier, Dr. Frock gets about $150 less than that.
Now, I don't begrudge anyone for making their living. I have grown to respect the care and expertise I've received from the doctors I've encountered. So, before anyone thinks I think the doctors should make these visits for nothing, sit back down in your chair.
If these doctor visits are a Medicare requirement, it would seem to me that a boatload of money could be saved by removing the requirement that these visits have to take place monthly. I don't need to see my doctor monthly. Certainly not for all the information we share. There's no real value in that for me as a patient.
The clinic nurses look out for their patients pretty darn good. When we need something that requires a doctor's approval or input, there's never any hesitation on the staff's part to make contact. If I feel like
I need some questions answered, I could always call Dr. Frock and ask if he could come to the clinic for a visit. A scheduled visit would be more useful for the doctor and the patient.
I know, the cynic in me is probably missing the bigger picture in these visits. On the other hand, with no shortage of patients on dialysis, I don't think that nephrologists are going to be wondering where their next meal is coming from for quite some time.
It should also be clear here that I think Dr. Frock is a fine doctor. I enjoy talking with him, but I lke talking to lots of people. That doesn't mean I want to get a bill for each conversation.
That's my rant for the day. It's something that has always gnawed at me, so I needed to get this off my chest. I'm better now. Do any of the other dialysis patients that may look in on this blog ever wonder about these doctor visits?
Speaking of doctor visits, and taking a much less cynical tone, I'm scheduled to see Dr. Feldhaus today. I'm hoping to hear him give me the all clear, so the nurses can start back to using my fistula. Getting the fistula off the DL means that I'm closer to getting the catheter removed from my chest. That will be a red letter day for sure!
Tuesday, July 5, 2011
Frightening the Family
As anyone who goes through an experience with any kind of illness will tell you, it is critical to have a good support system surrounding you. I have that, and it has made this whole process much easier to go through.
I've written before about my wife, but it goes without saying that without her in this with me, I would be floundering.
My family has been great too, but it's clearer to me now that all of this stuff is a bit frightening to them. I send out updates to everyone as things happen, because we're scattered all over the place. E-mail updates seemed to make the most sense.
I usually hear from a few people with every update. Words of encouragement usually, but sometimes they have more questions too, so I like being able to answer those for them.
When the whole transplant thing became more realistic, and I was writing about this to them, the replies became a little less frequent. Admittedly, I may have caused this, because in each of the updates I was explaining how "easy" it was to donate, and in each of the transplant updates, I encouraged them to get tested to see if we would be a match.
I know how big of a request it is to ask a family member to donate a kidney. My mistake in all of this has been to discuss it in a way that makes it sound like it's a walk in the park. Part of that comes from us getting more comfortable with the whole transplant process, to the extent that it really doesn't seem like a big deal. The other reason I took such a positive approach to explaining the process, was that I didn't want to make it sound like some crazy out of this world thing that looks like a last resort.
So, along the way, I feel like I did the very thing I was trying to avoid. I've since sent out an update that was supposed to help people feel more at ease with saying no, because I don't want anyone feeling guilty about not wanting to donate, or not being comfortable with the whole donation idea.
The other thing I noticed in my updates and during those times when we would be gathered together for a birthday celebration or something was that my kidneys always seemed to be the center of the conversations I was having. There I was, letting the kidney disease become the thing that defined me to my family.
With all that in mind, I was absolutely ecstatic when we got together with family on Friday, and my kidneys never came up. It felt like a breath of fresh air, and it showed everyone that I wasn't going to follow them around and nag them about whether or not they wanted to get tested. Maybe it was a missed opportunity to recruit, but there will be other times for that, and maybe, the space will encourage some to ask more questions. We'll see.
I've written before about my wife, but it goes without saying that without her in this with me, I would be floundering.
My family has been great too, but it's clearer to me now that all of this stuff is a bit frightening to them. I send out updates to everyone as things happen, because we're scattered all over the place. E-mail updates seemed to make the most sense.
I usually hear from a few people with every update. Words of encouragement usually, but sometimes they have more questions too, so I like being able to answer those for them.
When the whole transplant thing became more realistic, and I was writing about this to them, the replies became a little less frequent. Admittedly, I may have caused this, because in each of the updates I was explaining how "easy" it was to donate, and in each of the transplant updates, I encouraged them to get tested to see if we would be a match.
I know how big of a request it is to ask a family member to donate a kidney. My mistake in all of this has been to discuss it in a way that makes it sound like it's a walk in the park. Part of that comes from us getting more comfortable with the whole transplant process, to the extent that it really doesn't seem like a big deal. The other reason I took such a positive approach to explaining the process, was that I didn't want to make it sound like some crazy out of this world thing that looks like a last resort.
So, along the way, I feel like I did the very thing I was trying to avoid. I've since sent out an update that was supposed to help people feel more at ease with saying no, because I don't want anyone feeling guilty about not wanting to donate, or not being comfortable with the whole donation idea.
The other thing I noticed in my updates and during those times when we would be gathered together for a birthday celebration or something was that my kidneys always seemed to be the center of the conversations I was having. There I was, letting the kidney disease become the thing that defined me to my family.
With all that in mind, I was absolutely ecstatic when we got together with family on Friday, and my kidneys never came up. It felt like a breath of fresh air, and it showed everyone that I wasn't going to follow them around and nag them about whether or not they wanted to get tested. Maybe it was a missed opportunity to recruit, but there will be other times for that, and maybe, the space will encourage some to ask more questions. We'll see.
Saturday, June 18, 2011
Doubleheader Follow-up
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.
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.
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 11, 2011
No Transplant News . . . .Yet
Despite staring at my phone most of the day yesterday, and doing my best to will it to send me a call from UNMC, there was no call. There could be any number of reasons for this, so I'm not going to lose any sleep over the lack of a call. Just the same, it's a bummer to think that I will probably have to wait until Monday to hear anything.
With this being a dialysis day, I have time to continue willing my phone to ring. It's not working out yet, but it's not for a lack of trying.
Receiving a treatment on the day before dialysis usually means there's lots of fluid to come off. Today was no exception. I came in at 90.6 kg, which is pretty high for me these days. I'm hoping to leave this morning around 87.5. I'll need to stay running the entire four hours to hit that goal. Lately, that's been hard to do, because my feet tend to cramp up after around three hours. I made it all the way through on Thursday, which was a first for June. Things are going well so far. I'm two hours in and I'm better than halfway to my goal.
In yesterday's post, I wrote that it seemed like since dialysis started, Jeannie and I haven't been out and about too much. Thanks to an awesome wedding anniversary gift from her son, Paul, Jeannie and I went to see the production of "Wicked" last night.
This was my first big-time musical experience. I was a sound and light guy for our high school musicals, but that was a long time ago, and clearly not the same thing. The whole experience was great. We had decent seats and "Wicked" was fabulous.
When the curtain came down for the final time of the night, I had tears rolling down my cheeks. I always choke up a bit after watching performers come out for their bows at the conclusion of a performance. It's moving to me to feel the appreciation coming from the crowd, when it's clear that the performers brought their A-game to the evening's show.
I'm not so sure there weren't other factors that moved me to tears last night. It was great to be doing something normal for a change on a Friday night. Since Saturday is a dialysis day, I try to get to bed by 9pm, to make sure I'm well-rested for the next day's session. It was almost midnight when we got home last night, so this was a big break from the norm. It was worth the lack of sleep just to be able to get out without thinking about kidneys, CLL, and transplant phone calls. I managed to not think about not getting the call, and was able to lose myself in the moment. A great moment.
So, the waiting continues for the call.
With this being a dialysis day, I have time to continue willing my phone to ring. It's not working out yet, but it's not for a lack of trying.
Receiving a treatment on the day before dialysis usually means there's lots of fluid to come off. Today was no exception. I came in at 90.6 kg, which is pretty high for me these days. I'm hoping to leave this morning around 87.5. I'll need to stay running the entire four hours to hit that goal. Lately, that's been hard to do, because my feet tend to cramp up after around three hours. I made it all the way through on Thursday, which was a first for June. Things are going well so far. I'm two hours in and I'm better than halfway to my goal.
In yesterday's post, I wrote that it seemed like since dialysis started, Jeannie and I haven't been out and about too much. Thanks to an awesome wedding anniversary gift from her son, Paul, Jeannie and I went to see the production of "Wicked" last night.
This was my first big-time musical experience. I was a sound and light guy for our high school musicals, but that was a long time ago, and clearly not the same thing. The whole experience was great. We had decent seats and "Wicked" was fabulous.
When the curtain came down for the final time of the night, I had tears rolling down my cheeks. I always choke up a bit after watching performers come out for their bows at the conclusion of a performance. It's moving to me to feel the appreciation coming from the crowd, when it's clear that the performers brought their A-game to the evening's show.
I'm not so sure there weren't other factors that moved me to tears last night. It was great to be doing something normal for a change on a Friday night. Since Saturday is a dialysis day, I try to get to bed by 9pm, to make sure I'm well-rested for the next day's session. It was almost midnight when we got home last night, so this was a big break from the norm. It was worth the lack of sleep just to be able to get out without thinking about kidneys, CLL, and transplant phone calls. I managed to not think about not getting the call, and was able to lose myself in the moment. A great moment.
So, the waiting continues for the call.
Friday, June 10, 2011
Maintenance
I'm hooked up and receiving my maintenance treatment of Rituxan.. We met with the Nurse Practioner and Dr. Tarantolo this morning. Dr. T gave us some more thoughts on how the CLL would behave with the anti-rejection meds from a transplant.
He believes that one of the drugs I'll get will suppress the CLL. I believe he was talking about Ropamune. He agreed there are risks associated with the transplant, but he thought those were of a low probability. He's going to call Dr. Tim Call at the Mayo Clinic, a doctor who specializes in CLL, to see if he has access to any data on CLL patients getting kidney transplants.
The benadryl is kicking in. It's all a part of the pre-med cocktail I get before the Rituxan begins to flow. I'm plenty relaxed now, making spelling errors to beat the band! My typing is about a step or two behind my thoughts.
Ethel is taking care of me this morning. She just brought over some wipes that they use to remove adhesive marks left on the skin. She wiped off my left arm and then left me a wipe to use on my right arm.
While waiting for Dr. Tarantolo this morning, I was thinking about our appointments before treatment and all the kidney issues. He used to ask me what concerts I would be going to, and we would talk about those. Since dialysis began, we really haven't done much in the way of traveling or taking in any concerts. It may not be fair to blame all of this inactivity on dialysis, there's no question that it changes things.
We may be stopping treatments soon too. Since the treatments aren't doing anything positive for my kidneys, and that was the main reason Dr. T started me on treatments, he may just go back to monitoring my situation. That would be great!
Monday's PET scan was clean as a whistle, so that's more good news! Now, all we need is the phone call from Holly at UNMC. Let's get moving on the transplant!
He believes that one of the drugs I'll get will suppress the CLL. I believe he was talking about Ropamune. He agreed there are risks associated with the transplant, but he thought those were of a low probability. He's going to call Dr. Tim Call at the Mayo Clinic, a doctor who specializes in CLL, to see if he has access to any data on CLL patients getting kidney transplants.
The benadryl is kicking in. It's all a part of the pre-med cocktail I get before the Rituxan begins to flow. I'm plenty relaxed now, making spelling errors to beat the band! My typing is about a step or two behind my thoughts.
Ethel is taking care of me this morning. She just brought over some wipes that they use to remove adhesive marks left on the skin. She wiped off my left arm and then left me a wipe to use on my right arm.
While waiting for Dr. Tarantolo this morning, I was thinking about our appointments before treatment and all the kidney issues. He used to ask me what concerts I would be going to, and we would talk about those. Since dialysis began, we really haven't done much in the way of traveling or taking in any concerts. It may not be fair to blame all of this inactivity on dialysis, there's no question that it changes things.
We may be stopping treatments soon too. Since the treatments aren't doing anything positive for my kidneys, and that was the main reason Dr. T started me on treatments, he may just go back to monitoring my situation. That would be great!
Monday's PET scan was clean as a whistle, so that's more good news! Now, all we need is the phone call from Holly at UNMC. Let's get moving on the transplant!
Thursday, June 9, 2011
The Waiting is the Hardest Part
With apologies to Tom Petty, there's no question that the waiting can make a person crazy. Although work is busy, there just seems to be enough time to go have this crazy conversation with myself. Is a transplant the right thing to do? Am I trading away a longer life with dialysis for a potentially shorter life with a new kidney?
Sitting here and writing this now, I feel like I know the right answer to this dilemma. There's nothing that says I would experience what the two cases in France experienced. Those two people were older, and I don't know how severe their CLL was when it made its comeback. I'm healthy and getting healthier. That has to be something in my favor, right?
There are no guarantees. There are so many things that could happen that are out of my control which could cut my life short, none of which would have nothing to do with my current health situation. All I can do is keep a handle on the things I can control and make sure I'm giving myself every chance to succeed. That's something I used to tell my high school bowlers. The stakes are higher in this case, but that's still a true statement.
I'm fortunate to have people around me who are willing to lay it all out for me. I tend to maybe dwell on the positives too much, when I should be paying closer attention to the risks. I've always thought of myself as a bit of a coward, so I think all of this must be causing me to evolve.
Tomorrow is my appointment with Dr. Tarantolo. I'm looking forward to hearing his take on this. I should also get a call from Holly tomorrow too. It's going to be a big news day.
Sitting here and writing this now, I feel like I know the right answer to this dilemma. There's nothing that says I would experience what the two cases in France experienced. Those two people were older, and I don't know how severe their CLL was when it made its comeback. I'm healthy and getting healthier. That has to be something in my favor, right?
There are no guarantees. There are so many things that could happen that are out of my control which could cut my life short, none of which would have nothing to do with my current health situation. All I can do is keep a handle on the things I can control and make sure I'm giving myself every chance to succeed. That's something I used to tell my high school bowlers. The stakes are higher in this case, but that's still a true statement.
I'm fortunate to have people around me who are willing to lay it all out for me. I tend to maybe dwell on the positives too much, when I should be paying closer attention to the risks. I've always thought of myself as a bit of a coward, so I think all of this must be causing me to evolve.
Tomorrow is my appointment with Dr. Tarantolo. I'm looking forward to hearing his take on this. I should also get a call from Holly tomorrow too. It's going to be a big news day.
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, June 2, 2011
Kidney Transplant Evaluation - Day 1
Yesterday was my first day of transplant evaluations. It was a long day, with plenty of ups and downs. I was really looking forward to getting started with the evaluation process, but by the time we wrapped up yesterday afternoon, I wasn't so sure.
The day started out fine. I had a 7:30am appointment to get my blood drawn, get an EKG, and get a chest x-ray. These three things weren't any big deal. I'm in good shape, so I wasn't worried about the outcomes for any of the three tests. I got a kick out of how much blood was drawn. When the girl started on the 10th vial, I was sure there wasn't going to be anymore blood left in me. Turns out there were a couple three more vials left in me. I don't ever remember having that much blood drawn at one time.
Once all three of these tests were finished, Jeannie and I headed to the cafeteria. I had to fast before this blood draw, so I hadn't eaten anything since 9pm the night before. The cafeteria had great food, and I was thinking that this was a good thing. Eventually, Jeannie's going to be eating several meals from here, so I was hoping the food was good.
After we ate, we headed down to our next set of appointments, both related to finance. Our first appointment was with the Pharmacy Financial Counselor to go over the medicines that I would be taking post-transplant and the financial impact that would have. Fortunately, thanks to a good insurance plan, the financial impact will be practically non-existent. This was the perfect lead-in for our next appointment, with another financial counselor, this time to talk about the costs for the transplant and the testing I was going through.
Again, thanks to a good insurance plan, the transplant was not going to be a financial hardship for us. The same is true for any donor that wants to get tested, and if eligible, give me their kidney. All of that is covered too. We were both on cloud nine after hearing both assessments of our insurance situation. I've mentioned this in previous posts, but we are truly blessed with how well the insurance is working out for me.
The two financial discussions were quick. So quick, we ended up with almost 90 minutes to kill before our next appointment. Thinking we would be going without much downtime, I didn't bring anything to read, so I went and tracked down a newspaper from the gift shop.
We were scheduled to join three other families in a conference room to watch a 45-minute video on the transplant process. It was an interesting video, but as it turned out, we watched it over the weekend. I came across the links to the video on the UNMC website a week or so ago, so Jeannie and I watched them over the weekend. It didn't hurt to see them a second time, so we each made some notes with questions to ask the transplant team when we met up with them in the afternoon.
Here's the link to the page with the video: http://www.nebraskamed.com/transplant/kidney/info/process/transplant_evaluation.asp
After lunch we met up with the transplant coordinator. She is an absolute bundle of positive energy. She's doing the perfect job for her personality, and I said again that I couldn't believe how great this was all going. We saw the Nurse Practitioner next, and she asked some more medical history questions, and we had a long chat about my CLL. She was great with us, but she expressed concern about the effects of a transplant on my CLL. Her questions were fair, I answered them the best that I could, and when she was finished, she said she was sure I would have no problem getting a kidney.
The transplant coordinator came back in; Holly is her name, by the way, and we talked some more about how we would get notified when a kidney was available, how the transplant list worked, and when I would be placed on the list. Then, we got our first less than positive visit. We met Dr. Morris.
Dr. Morris came in to see us after finishing a transplant. It was my first meeting with him, so I don't know much about him, but he was pretty blunt with us, which left me a little bit shaken. He wanted me to be able to make an informed consent when it came time to agree with the transplant. So, he hit us with all the negatives related to my transplant candidacy.
The anti-rejection drugs will weaken my immune system, which could lead to a re-occurrence of the CLL. He threw out a scenario where I may not live three years with my transplanted kidney. If that happened, it would not have been a good decision to give up dialysis for something that would kill me. The concern is that a transplanted patient has a higher risk of developing tumors and infections following the transplant. Bad as dialysis is on our lifestyle, it won't kill me.
"CLL is CLL," he said to me, when I tried to explain that the degree or severity of my CLL was such that we thought I would be a good candidate. This comment got under my skin. He lost me after that, which fortunately was near the end of our chat. When he left, Holly came back into the room, and we talked about what had just happened. Looking back on it today, I can't help but think that she was playing good cop to the bad cop played by Dr. Morris.
In the middle of our conversation, Dr. Miles came in to visit. He would be the last person for us to talk with on this first day. I went right to it, recapping what Dr. Morris had said, and how I thought it was hard to imagine him saying "CLL is CLL." I asked Dr. Miles if he believed that there was no degree to this type of disease.
He agreed that there was, but he maintained that the transplant, especially with a cadaver kidney, could cause problems. I told him that I thought that between him and Dr. Tarantolo there should be enough brain power to come up with a plan for how to deal with any post-transplant issues. He agreed with that too. Things were looking up. I don't have a problem with exploring both sides of an issue, as long as we truly explore both sides.
Dr. Miles asked some more questions and then we were done. The first day of evaluations was in the books. I go back tomorrow for round two. More tests and two face to face meetings. I have to go back on the 22nd for one more meeting that couldn't get scheduled during these two days of evaluations. Once that is done, the transplant team will meet to go over my case again and then a final decision will be made to put me on the transplant list or have me wait.
I need to work on seeing if someone will feel inspired to donate a kidney, but I'm going to wait until I hear for certain that I will be eligible.
The day started out fine. I had a 7:30am appointment to get my blood drawn, get an EKG, and get a chest x-ray. These three things weren't any big deal. I'm in good shape, so I wasn't worried about the outcomes for any of the three tests. I got a kick out of how much blood was drawn. When the girl started on the 10th vial, I was sure there wasn't going to be anymore blood left in me. Turns out there were a couple three more vials left in me. I don't ever remember having that much blood drawn at one time.
Once all three of these tests were finished, Jeannie and I headed to the cafeteria. I had to fast before this blood draw, so I hadn't eaten anything since 9pm the night before. The cafeteria had great food, and I was thinking that this was a good thing. Eventually, Jeannie's going to be eating several meals from here, so I was hoping the food was good.
After we ate, we headed down to our next set of appointments, both related to finance. Our first appointment was with the Pharmacy Financial Counselor to go over the medicines that I would be taking post-transplant and the financial impact that would have. Fortunately, thanks to a good insurance plan, the financial impact will be practically non-existent. This was the perfect lead-in for our next appointment, with another financial counselor, this time to talk about the costs for the transplant and the testing I was going through.
Again, thanks to a good insurance plan, the transplant was not going to be a financial hardship for us. The same is true for any donor that wants to get tested, and if eligible, give me their kidney. All of that is covered too. We were both on cloud nine after hearing both assessments of our insurance situation. I've mentioned this in previous posts, but we are truly blessed with how well the insurance is working out for me.
The two financial discussions were quick. So quick, we ended up with almost 90 minutes to kill before our next appointment. Thinking we would be going without much downtime, I didn't bring anything to read, so I went and tracked down a newspaper from the gift shop.
We were scheduled to join three other families in a conference room to watch a 45-minute video on the transplant process. It was an interesting video, but as it turned out, we watched it over the weekend. I came across the links to the video on the UNMC website a week or so ago, so Jeannie and I watched them over the weekend. It didn't hurt to see them a second time, so we each made some notes with questions to ask the transplant team when we met up with them in the afternoon.
Here's the link to the page with the video: http://www.nebraskamed.com/transplant/kidney/info/process/transplant_evaluation.asp
After lunch we met up with the transplant coordinator. She is an absolute bundle of positive energy. She's doing the perfect job for her personality, and I said again that I couldn't believe how great this was all going. We saw the Nurse Practitioner next, and she asked some more medical history questions, and we had a long chat about my CLL. She was great with us, but she expressed concern about the effects of a transplant on my CLL. Her questions were fair, I answered them the best that I could, and when she was finished, she said she was sure I would have no problem getting a kidney.
The transplant coordinator came back in; Holly is her name, by the way, and we talked some more about how we would get notified when a kidney was available, how the transplant list worked, and when I would be placed on the list. Then, we got our first less than positive visit. We met Dr. Morris.
Dr. Morris came in to see us after finishing a transplant. It was my first meeting with him, so I don't know much about him, but he was pretty blunt with us, which left me a little bit shaken. He wanted me to be able to make an informed consent when it came time to agree with the transplant. So, he hit us with all the negatives related to my transplant candidacy.
The anti-rejection drugs will weaken my immune system, which could lead to a re-occurrence of the CLL. He threw out a scenario where I may not live three years with my transplanted kidney. If that happened, it would not have been a good decision to give up dialysis for something that would kill me. The concern is that a transplanted patient has a higher risk of developing tumors and infections following the transplant. Bad as dialysis is on our lifestyle, it won't kill me.
"CLL is CLL," he said to me, when I tried to explain that the degree or severity of my CLL was such that we thought I would be a good candidate. This comment got under my skin. He lost me after that, which fortunately was near the end of our chat. When he left, Holly came back into the room, and we talked about what had just happened. Looking back on it today, I can't help but think that she was playing good cop to the bad cop played by Dr. Morris.
In the middle of our conversation, Dr. Miles came in to visit. He would be the last person for us to talk with on this first day. I went right to it, recapping what Dr. Morris had said, and how I thought it was hard to imagine him saying "CLL is CLL." I asked Dr. Miles if he believed that there was no degree to this type of disease.
He agreed that there was, but he maintained that the transplant, especially with a cadaver kidney, could cause problems. I told him that I thought that between him and Dr. Tarantolo there should be enough brain power to come up with a plan for how to deal with any post-transplant issues. He agreed with that too. Things were looking up. I don't have a problem with exploring both sides of an issue, as long as we truly explore both sides.
Dr. Miles asked some more questions and then we were done. The first day of evaluations was in the books. I go back tomorrow for round two. More tests and two face to face meetings. I have to go back on the 22nd for one more meeting that couldn't get scheduled during these two days of evaluations. Once that is done, the transplant team will meet to go over my case again and then a final decision will be made to put me on the transplant list or have me wait.
I need to work on seeing if someone will feel inspired to donate a kidney, but I'm going to wait until I hear for certain that I will be eligible.
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