Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 Hi Connie. I don't think that plan would work in practice. There are a great many aspects to matching a donor and a recipient. There's a lot more to it than just blood type. The idea behind putting the recipient on hold from the waiting list is that the live donor kidney would be much better than a cadaveric one. They last longer, and require less medication. That seems reasonable to me, and I wouldn't mind that, if the evaluation was done more quickly. This is one area where you guys in the U.S. have it better than us. Here, we don't really have actual transplant centres, just hospitals that happen to do kidney transplants, and the resources are shared with every other department. That means waits are sometimes necessary for things like CT scans. My own evaluation went pretty quickly though. It was mostly done within a couple of days - but it took a while to get to that point after the referral. What took longer was things like appointments with the social worker and the transplant surgeon. The Christmas holiday season added to it too. A nuclear scan is just a scan that's done after injection of a special radioactive dye. It's to map out the blood vessels that supply the kidneys, and it's the very last procedure in the donor evaluation. In my donor's case, they found he had what they call " complex arteries " . It's not a medical problem for the donor in normal life, but it makes removal of the kidney too risky for the donor. Plus, even if they went ahead with it anyway, it would be impossible to connect up the kidney in the recipient so as to give it the same kind of blood supply - so it would have a high risk of failure. I had some pancreatitis before my evaluation. I'm not sure why they suddenly decided that it is an issue to look at now. If it were severe enough, it could be a showstopper. A severe, acute pancreatitis apparently can be a serious thing in a transplant patient. However, I've never had pancreatitis that bad, and I know my gastro-enterologist already cleared me this past November. It's a little upsetting, but I guess they just want to cover all the bases. We can see now that getting a transplant from a live donor is not as easy as it sounds. We've seen many people in this group have a number of potential donors turned down. Some also decide not to go ahead with it once they have the risks explained to them (which is done early in the evaluation process). Some don't get past the social worker and/or psychiatrist. Donating a kidney is not without significant risk, and they make sure the donation is being done for the right reasons. There are also some dialysis patients who choose not to be on the waiting list at all. I know some personally. They would rather just stay on dialysis rather than take the risks that come with a transplant (increased risk of cancer, prednisone for life, etc.). Pierre RE: Re: Back to the drawing board > Pierre, > Is there anyway to work around this system? I'm very unversed in transplant > procedures, but could a potential donor not specify that he wants to donate > to person X, therefore keeping you on the list and then when most of the > tests are complete designate/request that the organ go to you (if all > criteria is met)therefore keeping you on the list for a longer period of > time? It really doesn't seem fair that you're removed from the list when > I'm sure that many times the donor is disqualified for one reason or > another. (even though supposedly you go back on the list at the same place) > > Pierre, what is a nuclear renal scan? If it is not to personal, could you > tell us what they found that disqualified him at the last minute. Did you > have pancreatitis problems before you were put on the list and could this > pancreatitis problem ultimately keep you from going forward as a recipient > of a kidney? > > With everything that is going on with both you and in regards to a > transplant, I find this very interesting and I'm sure that the process is > very nerve-wracking and tiring. You guys are both in my thoughts as you go > through this process. > > Connie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 Thanks Connie for you support and loving comments. It does distress me that Pierre has to be off the transplant list for so long while waiting for them to process a living donor. I too believe that hospitals and transplant centers could be a little more efficient in judging a donor candidate. Several months is too long! Pierre, you need to talk to those people! I could see it taking months to get a slot to test a person and then doing it is a day or 2 so that you aren't off the list so long. Re: Re: Back to the drawing board > Pierre, > > My transplant coordinator said that it is the standard practice to remove live doner candidates off the list while the evaluation is ongoing. She also said that if the live doner fell through that you go back on in the place you were before you were taken off. I think that I am off now because she is messing around with looking at a griend of mine. I don't know when they officially take you off since she has not said that she has taken me off, but she did state that when she was putting me on the list. It might be that my friend is not yet considered as a potential doner until after her blood work is completed. I will continue to keep you in my prayers. you reall have done so much for this group of nice folks. > > To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 Pierre, Just to throw a new thought into this transplant discussion, I wanted to mention that my son¹s neph told us that when he needs a new transplant, they would want to use a cadaveric kidney even if there were another living donor available. Statistically, IgAN is less likely to reccur in a cadaveric kidney, and since his reccurance has been more aggressive than expected, they would want to take that precaution. And the next time, he¹ll go on the list just as soon as he gets to 20%, instead of waiting and saying he really didn¹t feel that bad, etc. like he did before. Now he knows. is doing better now and will get another round of Cytoxan today (lower dose and taking him off Rapamune for a week or so). For whatever reason, he lost quite a lot of the water weight last week. He¹s still a bit puffy with edema but not nearly as bad as before. Last 24 hr. urine collection showed GFR of 35 not great but manageable. So we are hopeful the continued treatment will at least stabilize things or even better, actually improve kidney function. Betsy > Hi Connie. > > I don't think that plan would work in practice. There are a great many > aspects to matching a donor and a recipient. There's a lot more to it than > just blood type. The idea behind putting the recipient on hold from the > waiting list is that the live donor kidney would be much better than a > cadaveric one. They last longer, and require less medication. That seems > reasonable to me, and I wouldn't mind that, if the evaluation was done more > quickly. This is one area where you guys in the U.S. have it better than us. > Here, we don't really have actual transplant centres, just hospitals that > happen to do kidney transplants, and the resources are shared with every > other department. That means waits are sometimes necessary for things like > CT scans. My own evaluation went pretty quickly though. It was mostly done > within a couple of days - but it took a while to get to that point after the > referral. What took longer was things like appointments with the social > worker and the transplant surgeon. The Christmas holiday season added to it > too. > > A nuclear scan is just a scan that's done after injection of a special > radioactive dye. It's to map out the blood vessels that supply the kidneys, > and it's the very last procedure in the donor evaluation. In my donor's > case, they found he had what they call " complex arteries " . It's not a > medical problem for the donor in normal life, but it makes removal of the > kidney too risky for the donor. Plus, even if they went ahead with it > anyway, it would be impossible to connect up the kidney in the recipient so > as to give it the same kind of blood supply - so it would have a high risk > of failure. > > I had some pancreatitis before my evaluation. I'm not sure why they suddenly > decided that it is an issue to look at now. If it were severe enough, it > could be a showstopper. A severe, acute pancreatitis apparently can be a > serious thing in a transplant patient. However, I've never had pancreatitis > that bad, and I know my gastro-enterologist already cleared me this past > November. It's a little upsetting, but I guess they just want to cover all > the bases. > > We can see now that getting a transplant from a live donor is not as easy as > it sounds. We've seen many people in this group have a number of potential > donors turned down. Some also decide not to go ahead with it once they have > the risks explained to them (which is done early in the evaluation process). > Some don't get past the social worker and/or psychiatrist. Donating a kidney > is not without significant risk, and they make sure the donation is being > done for the right reasons. > > There are also some dialysis patients who choose not to be on the waiting > list at all. I know some personally. They would rather just stay on dialysis > rather than take the risks that come with a transplant (increased risk of > cancer, prednisone for life, etc.). > > Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 Connie, Thanks for asking these questions. You right through all the fog in my brain to the information that I was hoping to find! Cy Re: Re: Back to the drawing board > Pierre, > > My transplant coordinator said that it is the standard practice to remove live doner candidates off the list while the evaluation is ongoing. She also said that if the live doner fell through that you go back on in the place you were before you were taken off. I think that I am off now because she is messing around with looking at a griend of mine. I don't know when they officially take you off since she has not said that she has taken me off, but she did state that when she was putting me on the list. It might be that my friend is not yet considered as a potential doner until after her blood work is completed. I will continue to keep you in my prayers. you reall have done so much for this group of nice folks. > > To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 . Oh, I do intend to bring this up at an upcoming committee that is being set for patient issues. Don't want to complain too loudly though, as these people have full control over my transplant future Pierre Re: Re: Back to the drawing board > Thanks Connie for you support and loving comments. It does distress me that Pierre has to be off the transplant list for so long while waiting for them to process a living donor. I too believe that hospitals and transplant centers could be a little more efficient in judging a donor candidate. Several months is too long! Pierre, you need to talk to those people! I could see it taking months to get a slot to test a person and then doing it is a day or 2 so that you aren't off the list so long. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 Hi Betsy. Thanks for the birthday wishes. Right now, I'm 50, feeling more like 70. I can't wait for the Epo to start quicking-in I'm glad to hear is doing better. From the potential recipient's point of view, and this is a feeling I share with just about everyone I've talked to whi is in the same situation (or has been), the possibility of rejecting a kidney donated by a relative weighs heavily on the mind. I can't imagine how bad I would feel if that happened. A second time would seem almost unbearable to me. The social workers try to ease those kinds of concerns, but when you get right down to it, they are just meaningless words. In total honesty, in this respect, I almost feel relieved since my donor was disqualified. I always appreciate your insightful thoughts. Pierre Re: Re: Back to the drawing board Pierre, Just to throw a new thought into this transplant discussion, I wanted to mention that my son¹s neph told us that when he needs a new transplant, they would want to use a cadaveric kidney even if there were another living donor available. Statistically, IgAN is less likely to reccur in a cadaveric kidney, and since his reccurance has been more aggressive than expected, they would want to take that precaution. And the next time, he¹ll go on the list just as soon as he gets to 20%, instead of waiting and saying he really didn¹t feel that bad, etc. like he did before. Now he knows. is doing better now and will get another round of Cytoxan today (lower dose and taking him off Rapamune for a week or so). For whatever reason, he lost quite a lot of the water weight last week. He¹s still a bit puffy with edema but not nearly as bad as before. Last 24 hr. urine collection showed GFR of 35 not great but manageable. So we are hopeful the continued treatment will at least stabilize things or even better, actually improve kidney function. Betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 --- Dear Pierre, I am so sorry to hear that you feel like not having much energy right now. I do hope that Epo shots can improve it fast. To Betsy: It's good to hear that is doing better. I will pray for the long living of his transplant. All the best, Elvira In iga-nephropathy , " Pierre L \(groups\) " <pgl- groups@s...> wrote: > Hi Betsy. > > Thanks for the birthday wishes. Right now, I'm 50, feeling more like 70. I > can't wait for the Epo to start quicking-in > > I'm glad to hear is doing better. > > From the potential recipient's point of view, and this is a feeling I share > with just about everyone I've talked to whi is in the same situation (or has > been), the possibility of rejecting a kidney donated by a relative weighs > heavily on the mind. I can't imagine how bad I would feel if that happened. > A second time would seem almost unbearable to me. The social workers try to > ease those kinds of concerns, but when you get right down to it, they are > just meaningless words. In total honesty, in this respect, I almost feel > relieved since my donor was disqualified. > > I always appreciate your insightful thoughts. > > Pierre > > > Re: Re: Back to the drawing board > > > Pierre, > Just to throw a new thought into this transplant discussion, I wanted to > mention that my son¹s neph told us that when he needs a new transplant, they > would want to use a cadaveric kidney even if there were another living donor > available. Statistically, IgAN is less likely to reccur in a cadaveric > kidney, and since his reccurance has been more aggressive than expected, > they would want to take that precaution. And the next time, he¹ll go on the > list just as soon as he gets to 20%, instead of waiting and saying he really > didn¹t feel that bad, etc. like he did before. Now he knows. > > is doing better now and will get another round of Cytoxan today (lower > dose and taking him off Rapamune for a week or so). For whatever reason, he > lost quite a lot of the water weight last week. He¹s still a bit puffy with > edema but not nearly as bad as before. Last 24 hr. urine collection showed > GFR of 35 not great but manageable. So we are hopeful the continued > treatment will at least stabilize things or even better, actually improve > kidney function. > > Betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 As far as I know, IgAN is a bit more likely to recur in a kidney from a sibling or other close family member, simply because it has a more similar genetics, and it's more likely to be affected by the recipient's problem with defective IgA immune complexes. I don't have exact stats though. Pierre RE: Re: Back to the drawing board > Hi Betsy, > > Hopefully will continue to stay stabile. Hopefully will be able to > maintain that 35 GFR. > > Quote from Betsy > " Statistically, IgAN is less likely to reoccur in a cadaveric kidney " > > It's really strange but my Neph told me that IgAN is MORE likely to reoccur > in a cadaveric kidney. When I asked him why that was, he told me that it > was because of the emotional connection that you have with the living donor > verses a stranger. That people tend to protect the new kidney since they > know the donor, patients tend to do the right things, like taking their > meds, etc. Anyone really have any stats out there on this topic? Not that > I'm doubting you at all, but now you have me interested... > > Connie > Co-Moderator, USA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 Dana, Thanks for your comments. I have become something of an advocate for organ donation, having spoken on it at our church on Organ Donor Awareness Sunday, etc. As an awesome experience, it¹s right up there with childbirth. Betsy > Betsy, > What a great idea to write that letter to ! I frequently write letters > to my loved ones as it is hard to say in person what I'm really trying to say. > When you said you would've done it anyway evening knowing the future, that is > wonderful. > I just really enjoyed your post. Thanks! > Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2003 Report Share Posted June 14, 2003 Pierre, I'm very behind in reading the messages, but I just saw yours and wanted to say how sorry I am that your donor did not work out. I was rooting for you and looking foreward to september right along with you. Here's hoping they let you back on the list soon and you get a " list " kidney asap. Oh and by the way, your birthday is two days (and 27 years) before mine. Happy Belated Birthday > Which do you want, the good news or the bad news first? > > Never mind, there is no good news. > > 1) I just turned 50 today! It's good news that I got there, I guess, but > it's going to take a while to get used to the idea > > 2) My kidney donor has been nixed, virtually at the very end of his > evaluation (he had a CT scan a couple of weeks ago). So, no transplant in > September. > > 3) I'm temporarily suspended from the transplant waiting list until they get > an opinion from my gastroenterologist about the pancreatitis I appear to get > every now and then. When I do get back on it, which I expect won't be too > long, my seniority on the list goes back to the day I started dialysis. > That's good, at least, since I already have 8 months under my belt. > > I'm reminded of the Robbie Burns poem I had to memorize in high school: > > " The best-laid plans of mice and men > Gang aft agley > And leave us naught but grief and pain > For promised joy. " > > In other words, what the heck can you do... > > Pierre > P.S. Getting a live donor transplant successfully is a great accomplishment. > There are so many seemingly minor things that can put the kibosh on it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2003 Report Share Posted June 20, 2003 , Thanks so much for writing. It's always nice to know I've helped someone, somehow. Everything will work out with time, for both of us. If your transplant team is anything like the one here, same province, I don't think you have to worry about any relative getting through the evaluation if they aren't almost perfect. Any increased risk at all and they are nixed. Pierre Re: Back to the drawing board > Pierre > > I'm sorry to hear about your transplant being denied. I just wanted to tell > you that you've been very helpful to me about just that issue. I hopefully > have a ways to go before I have to cross that bridge (25% function) but I > have a rare blood type and people in my family that share this type keep > offering to donate. By listening to you and learning some of the problems > people might have in living donors I have been able to keep my hopes down. > There's alot of auto immune diseases in my family from juvenlie diabetes (my > uncle was diagnosed at 35, my son at 5yrs), to rheumatoid arthritis(my > mother), not to mention quite a prevelance of type II diabetes, so knowing > this and knowing that no one wants to put a family member in danger i've > been able to say thank you when the time comes we'll see how you feel but > know in many cases people with our family history could be denied. > > I know this sounds like a bummer but in truth it gives me a realistic > picture and if it changes it will be a pleasant surprise. > > Ontario > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2003 Report Share Posted June 20, 2003 Other than the cake, I didn't do anything special at all. I almost just preferred to ignore it Pierre RE: Back to the drawing board > Hi Pierre, > I'm very sorry to hear about your news about your donor. It is a good way > to put it " back to the drawing board " . I know that it gets to be an old > cliché " that it's not meant to be " . But I believe that things will turn > around for you and that the final outcome will even better and more precious > to you and your family. > > By the way Happy Birthday! Did you do anything special since this was the > big 50! When I'm 50 we're going to have a big blow out! (that is of > candles I mean!) Hope that you have 50 more good years! > > Connie > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.