Guest guest Posted December 7, 2003 Report Share Posted December 7, 2003 I am praying for you now and will definetly be praying for you and your sister-in-law on the 10th. If you are like my sons you will both be feeling much better in 3 days. Duke is a wonderful hospital. Can't wait to hear for you after the surgery. You will be a different person this Christmas. God bless you and best of luck to you both. Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 Hi Clair, It is good to hear from you again, although not good to hear you are approaching ESRD. I am just so sorry to hear you have declined so rapidly recently. How are you feeling? Are you starting to feel bad at all? I will paste a link that has data on different transplant facilities that I think will answer your questions. http://www.unos.org/ Please keep up posted on how the testing is going Clair. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 Hi Clair, It is good to hear from you again, although not good to hear you are approaching ESRD. I am just so sorry to hear you have declined so rapidly recently. How are you feeling? Are you starting to feel bad at all? I will paste a link that has data on different transplant facilities that I think will answer your questions. http://www.unos.org/ Please keep up posted on how the testing is going Clair. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 Clair, If you go to www.unos.org (United Organ Sharing Network), they rate all transplant centers according to how many transplants per year, success rates (kidneys still functioning after 1 yr and 5 yr.), experience with specific types of kidney disease, etc. We found it very interesting and helpful. In general, I¹d go to a center that does a lot of kidney transplants rather than just a few per year. We went to a large teaching hospital (Univ. of Colorado Hospital) that has a very active, long-standing transplant program and were very pleased with the results. Good luck - Betsy > Hi everyone, I used to post here several years ago, but have not > posted in a long while. For several years my condition was stable at > 40% function, but in the past year has declined rapidly. At > yesterday's appointment I was told I was at 15% function and it was > time to start the process of having family members getting tested to > see who, if anyone will be able to donate a kidney to me. My doctor > said each hospital had different criteria as to who they would accept > into their program, but was not very specific on exactly what that > meant. Does anyone know about what the differences are in the > different hospitals and programs. We live in a city that has three > hospitals that perform kidney transplants, my insurance will cover > all three hospitals. Any info would be appreciated. Thanks, Clair > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 Clair, If you go to www.unos.org (United Organ Sharing Network), they rate all transplant centers according to how many transplants per year, success rates (kidneys still functioning after 1 yr and 5 yr.), experience with specific types of kidney disease, etc. We found it very interesting and helpful. In general, I¹d go to a center that does a lot of kidney transplants rather than just a few per year. We went to a large teaching hospital (Univ. of Colorado Hospital) that has a very active, long-standing transplant program and were very pleased with the results. Good luck - Betsy > Hi everyone, I used to post here several years ago, but have not > posted in a long while. For several years my condition was stable at > 40% function, but in the past year has declined rapidly. At > yesterday's appointment I was told I was at 15% function and it was > time to start the process of having family members getting tested to > see who, if anyone will be able to donate a kidney to me. My doctor > said each hospital had different criteria as to who they would accept > into their program, but was not very specific on exactly what that > meant. Does anyone know about what the differences are in the > different hospitals and programs. We live in a city that has three > hospitals that perform kidney transplants, my insurance will cover > all three hospitals. Any info would be appreciated. Thanks, Clair > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2004 Report Share Posted February 7, 2004 Pierre, Betsy and , Thanks for responding so quickly. I am sure the website you suggested will answer many of my question. One good thing is that I have AB blood, and come from a large family, so hopefully someone will be eligible to donate to me. I have gone to the inservice for dialysis; actually the transplant people were supposed to be there but didn't make it that day. I have been in touch with one of the hospitals that do transplants here and will go to their inservice soon. My doctor seems to think that even though I am 15%, I am not close enough to dialysis to do any surgery, but that is a possibility; although a preemptive transplant (as he calls it) is what we are shooting for. Overall, I feel pretty good, I am on lots of medications, and I have many of the problems of ESRD, and my daily life has certainly had to slow down. I became incressingly anemic over the past year, and when my blood count went below 30 I went on Procrit injections weekly. After 5 injections my blood count went up to 40, so for now I can stop them! That has probably made the biggest difference in helping me feel better, I have more energy. Anyway, I am glad ya'll are here, it helps to talk to people who know what I am going thru. Thanks , Clair -- In iga- nephropathy , " Pierre L \(groups\) " <pgl-groups@s...> wrote: > Hi Clair. > > Sorry to hear you're down to 15 like that. It seems that a few of us reach > that stage every year. That's more or less what happened to me a year and a > half ago, although I probably hovered around 30% longer. > > I'm not sure what different criteria they might have where you live. Here, > it's all under the same umbrella since they amalgamated the two transplant > hospitals in the city a few years ago. Maybe someone who has gone through > this in the U.S. will know better. I do know from my own tranplant > evaluation and my brother's (who ended up being rejected in the end) that > they decide to test some things depending on others. A person has to be > pretty healthy to donate, and there might be some age restrictions at the > lower and upper ends. High blood pressure, any sign of proteinuria or blood > are the main things beside blood type that eliminate a lot of potential > donors. Obesity is another one that can be a problem. They do things like > abdominal ultrasounds, renal scans, echocardiogram, pulmonary function test, > heart stress test, etc., in addition to extensive blood tests. Some people > may not have to do some tests. Different transplant centres may differ > slightly on what they will accept in terms of tissue type matching and > antigens, but overall, it's pretty much all the same as far as i know. As > far as the actual tests go, the transplant nephrologist may decide on > specific ones depending on the person's medical history, and the transplant > surgeon may want some done too. That's the impression they give, but > everyone I know ended up having exactly the same tests. > > Other differences in terms of acceptance might have to do with how friendly > a friend has to be in order to be accepted as a donor - that sort of thing. > > What about dialysis access? Has your doctor mentioned fistula surgery in > case a transplant doesn't work out? Sometimes they do that to avoid having > to dialyze you via a chest catheter if it were to be necessary. I hope it > doesn't happen to you, but sometimes nobody matches, and it does take a > number of weeks for a fistula to mature if you're going to have > hemodialysis, and PD requires insertion of an abdominal catheter, a couple > of weeks to heal, as I recall, and some training. > > Pierre > > > transplant > > > > Hi everyone, I used to post here several years ago, but have not > > posted in a long while. For several years my condition was stable at > > 40% function, but in the past year has declined rapidly. At > > yesterday's appointment I was told I was at 15% function and it was > > time to start the process of having family members getting tested to > > see who, if anyone will be able to donate a kidney to me. My doctor > > said each hospital had different criteria as to who they would accept > > into their program, but was not very specific on exactly what that > > meant. Does anyone know about what the differences are in the > > different hospitals and programs. We live in a city that has three > > hospitals that perform kidney transplants, my insurance will cover > > all three hospitals. Any info would be appreciated. Thanks, Clair > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2004 Report Share Posted February 7, 2004 Pierre, Betsy and , Thanks for responding so quickly. I am sure the website you suggested will answer many of my question. One good thing is that I have AB blood, and come from a large family, so hopefully someone will be eligible to donate to me. I have gone to the inservice for dialysis; actually the transplant people were supposed to be there but didn't make it that day. I have been in touch with one of the hospitals that do transplants here and will go to their inservice soon. My doctor seems to think that even though I am 15%, I am not close enough to dialysis to do any surgery, but that is a possibility; although a preemptive transplant (as he calls it) is what we are shooting for. Overall, I feel pretty good, I am on lots of medications, and I have many of the problems of ESRD, and my daily life has certainly had to slow down. I became incressingly anemic over the past year, and when my blood count went below 30 I went on Procrit injections weekly. After 5 injections my blood count went up to 40, so for now I can stop them! That has probably made the biggest difference in helping me feel better, I have more energy. Anyway, I am glad ya'll are here, it helps to talk to people who know what I am going thru. Thanks , Clair -- In iga- nephropathy , " Pierre L \(groups\) " <pgl-groups@s...> wrote: > Hi Clair. > > Sorry to hear you're down to 15 like that. It seems that a few of us reach > that stage every year. That's more or less what happened to me a year and a > half ago, although I probably hovered around 30% longer. > > I'm not sure what different criteria they might have where you live. Here, > it's all under the same umbrella since they amalgamated the two transplant > hospitals in the city a few years ago. Maybe someone who has gone through > this in the U.S. will know better. I do know from my own tranplant > evaluation and my brother's (who ended up being rejected in the end) that > they decide to test some things depending on others. A person has to be > pretty healthy to donate, and there might be some age restrictions at the > lower and upper ends. High blood pressure, any sign of proteinuria or blood > are the main things beside blood type that eliminate a lot of potential > donors. Obesity is another one that can be a problem. They do things like > abdominal ultrasounds, renal scans, echocardiogram, pulmonary function test, > heart stress test, etc., in addition to extensive blood tests. Some people > may not have to do some tests. Different transplant centres may differ > slightly on what they will accept in terms of tissue type matching and > antigens, but overall, it's pretty much all the same as far as i know. As > far as the actual tests go, the transplant nephrologist may decide on > specific ones depending on the person's medical history, and the transplant > surgeon may want some done too. That's the impression they give, but > everyone I know ended up having exactly the same tests. > > Other differences in terms of acceptance might have to do with how friendly > a friend has to be in order to be accepted as a donor - that sort of thing. > > What about dialysis access? Has your doctor mentioned fistula surgery in > case a transplant doesn't work out? Sometimes they do that to avoid having > to dialyze you via a chest catheter if it were to be necessary. I hope it > doesn't happen to you, but sometimes nobody matches, and it does take a > number of weeks for a fistula to mature if you're going to have > hemodialysis, and PD requires insertion of an abdominal catheter, a couple > of weeks to heal, as I recall, and some training. > > Pierre > > > transplant > > > > Hi everyone, I used to post here several years ago, but have not > > posted in a long while. For several years my condition was stable at > > 40% function, but in the past year has declined rapidly. At > > yesterday's appointment I was told I was at 15% function and it was > > time to start the process of having family members getting tested to > > see who, if anyone will be able to donate a kidney to me. My doctor > > said each hospital had different criteria as to who they would accept > > into their program, but was not very specific on exactly what that > > meant. Does anyone know about what the differences are in the > > different hospitals and programs. We live in a city that has three > > hospitals that perform kidney transplants, my insurance will cover > > all three hospitals. Any info would be appreciated. Thanks, Clair > > > > > > Quote Link to comment Share on other sites More sharing options...
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