Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 Pierre, Well, first of all happy birthday! I truly hope it can be a happy one for you somehow! I am so sorry to hear of the transplant news. There truly are no words to make the situation seem better. I am glad you get your seniority back on the list and am hoping the pancreatitis disappears! Hang in there-you are an inspiration to us all. You deserve the world! My thoughts are with you, Dana In a message dated 6/8/03 9:39:40 AM Central Daylight Time, pgl-groups@... writes: << 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 8, 2003 Report Share Posted June 8, 2003 Working for a company who deals purely with the over 50's it seems this is when life really does seem to get exciting. Based on their antics I can't wait to join the club! Sorry about the transplant, but things do happen for a reason don't they? Frances P.S. That's my twopenneth for a while now. In other words, for those who don't understand English that well, I'll keep quiet again as long as I can. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 So sorry about your donor Pierre. Keep the faith. Don't worry about being 50! The closer I get to 50 the younger it is!! I'll be 43 soon. My strategy is that when I turn 50 to tell people I'm 60 so they say " WOW you look GOOD!!! " LOL (Just joking -- well, maybe 1/2 way joking anyway). Be well, Rotghi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 Thanks Dana. I was disappointed when the coordinator called and told me, but realistically, it's not unusual for these things to happen. I'm really more disappointed about not going back to the waiting list immediately. I hope it won't be too long. Pierre Re: Back to the drawing board > Pierre, > Well, first of all happy birthday! I truly hope it can be a happy one for > you somehow! > I am so sorry to hear of the transplant news. There truly are no words to > make the situation seem better. > I am glad you get your seniority back on the list and am hoping the > pancreatitis disappears! Hang in there-you are an inspiration to us all. You deserve > the world! > My thoughts are with you, > Dana > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 Gee Marty, I have never thought about now being able to swim during dialysis. That is interesting and a bummer. I do love swimming especially at the beach. I agree about Pierre. That transplant will come from somewhere. You never know when or why someone will just say, " let's do it!! " And no Pierre, I am not talking about you being a stud muffin. I will keep you on the top of my prayer list though. Re: Back to the drawing board Oh Pierre. I'm so sorry to hear that news. Believe me, I know how you feel. I went through the same thing twice (donors being nixed). In both incidents, it was at the very end of the testing as well. I pray that things will look up for you soon. After both of my brothers were nixed, I began to feel more trapped and hopeless. I had two large prayer groups praying on my behalf (people from my work). One day a colleague told me not to worry. God will know the right time to intervene. It wasn't long after that when my cousin contacted me interesting in donating and things have been great since then. Yesterday, I was out in the yard doing a lot of work when I realized it had been so long since I'd done so much physical work. When I was done with that, I jumped in the pool. It was the first time I was able to swim since my kidneys had failed. First, I had the abdominal catheter for PD then it was cardiovascular catheters for hemo. I'm not intending to whine. Just letting you know that things will work out. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 , That only applies if you are on PD or Hemo and don't have a functioning graft or fistula. Mine were not functioning. They did say that on PD you can swim in a well-maintained pool, but no lake, ocean, etc. Then, my neph even discouraged swimming in a clean pool due to risk of infection. Marty > Gee Marty, > > I have never thought about now being able to swim during dialysis. That is interesting and a bummer. I do love swimming especially at the beach. > > I agree about Pierre. That transplant will come from somewhere. You never know when or why someone will just say, " let's do it!! " And no Pierre, I am not talking about you being a stud muffin. I will keep you on the top of my prayer list though. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 Marty, I understand that PD can be a bit tricky and that you really have to watch any situation that can give you an infection. That is not an infection that anyone would want. They are very dangerous. As a matter of fact, I have about decided that I will go the Hemo. route when I run out of function. My Doc. seems to think that I can do that at home with my husband helping. I hope so. I would like to continue working. Re: Back to the drawing board , That only applies if you are on PD or Hemo and don't have a functioning graft or fistula. Mine were not functioning. They did say that on PD you can swim in a well-maintained pool, but no lake, ocean, etc. Then, my neph even discouraged swimming in a clean pool due to risk of infection. Marty > Gee Marty, > > I have never thought about now being able to swim during dialysis. That is interesting and a bummer. I do love swimming especially at the beach. > > I agree about Pierre. That transplant will come from somewhere. You never know when or why someone will just say, " let's do it!! " And no Pierre, I am not talking about you being a stud muffin. I will keep you on the top of my prayer list though. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 > Great story Marty! Glad you are doing so well! Rotghi > > Date: 2003/06/08 Sun PM 05:57:32 EDT > To: iga-nephropathy > Subject: Re: Back to the drawing board > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 on 6/8/03 7:38 AM, Pierre L (groups) at pgl-groups@... wrote: > 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. > > > > 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 9, 2003 Report Share Posted June 9, 2003 Elvira, I've never heard anyone use that saying except my daughter who is 23 years old. (everything is fine in the end...) It's really funny how your statement really jumped out at me. It really is a small world after all... Connie Co-Moderator, USA Re: Back to the drawing board --- Dear Pierre, HAPPY BIRTHDAY!!!! I am so sorry to hear about your donor problems....but everything is fine in the end, if it's not - it's not the end !!!..Keep the faith please... All the best, Elvira In iga-nephropathy , " Pierre L \(groups\) " <pgl- groups@s...> wrote: > 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. 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 9, 2003 Report Share Posted June 9, 2003 , Very funny...and I had to re-read your message to catch it which is unusual for me to be that slow...but after all it is Monday morning and I've only had 1 cup of coffee...tough weekend Connie Re: Re: Back to the drawing board Gee Marty, I have never thought about now being able to swim during dialysis. That is interesting and a bummer. I do love swimming especially at the beach. I agree about Pierre. That transplant will come from somewhere. You never know when or why someone will just say, " let's do it!! " And no Pierre, I am not talking about you being a stud muffin. I will keep you on the top of my prayer list though. Re: Back to the drawing board Oh Pierre. I'm so sorry to hear that news. Believe me, I know how you feel. I went through the same thing twice (donors being nixed). In both incidents, it was at the very end of the testing as well. I pray that things will look up for you soon. After both of my brothers were nixed, I began to feel more trapped and hopeless. I had two large prayer groups praying on my behalf (people from my work). One day a colleague told me not to worry. God will know the right time to intervene. It wasn't long after that when my cousin contacted me interesting in donating and things have been great since then. Yesterday, I was out in the yard doing a lot of work when I realized it had been so long since I'd done so much physical work. When I was done with that, I jumped in the pool. It was the first time I was able to swim since my kidneys had failed. First, I had the abdominal catheter for PD then it was cardiovascular catheters for hemo. I'm not intending to whine. Just letting you know that things will work out. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 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 Back to the drawing board 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. 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 9, 2003 Report Share Posted June 9, 2003 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 > >Reply-To: iga-nephropathy >To: <iga-nephropathy > >Subject: Back to the drawing board >Date: Sun, 8 Jun 2003 10:38:49 -0400 > >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. > > > >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 9, 2003 Report Share Posted June 9, 2003 Hi Pierre, Welcome to the over 50's club! This was the year that I decided to do something I'd always wanted to do--play the bongo/congos. Tho't I'd let the young'uns see that an 'old lady' could do some new tricks. Wouldn't you know that another over 50 lady said the first time she saw me playing, that she wanted to do it too! Sorry to hear about the set back re: your transplant and your other medical challenges. I, too, will pray for the perfect timing and for healing to come your way. As always, fond regards, Erna T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 --- Dear Connie You are right...our world is really a small one after all ....epecially using internet....My post reminded you about your daughter...Cy's post about 's success in horse riding competition, reminded me about my own son, for whom horses are great love and passion... Congratulations !!!! out of topic : that internet is really amazing tool....When my 16 year old son needs sth for his school projects, sometimes he searches the net, finds the needed data in English language version and just translates it into Polish ...I was really surpriced and impressed finding that... Just a small world ! Hugs, Elvira In iga-nephropathy , " Connie Sink " <csink@a...> wrote: > Elvira, > I've never heard anyone use that saying except my daughter who is 23 years > old. (everything is fine in the end...) It's really funny how your statement > really jumped out at me. It really is a small world after all... > > Connie > Co-Moderator, USA > > Re: Back to the drawing board > > > --- > Dear Pierre, > > HAPPY BIRTHDAY!!!! I am so sorry to hear about your donor > problems....but everything is fine in the end, if it's not - it's not > the end !!!..Keep the faith please... > All the best, > Elvira > > In iga-nephropathy , " Pierre L \(groups\) " <pgl- > groups@s...> wrote: > > 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. > > > > 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 10, 2003 Report Share Posted June 10, 2003 Erna, Playing the bongo/congos is cool! Do you perform for the public? Connie Back to the Drawing Board Hi Pierre, Welcome to the over 50's club! This was the year that I decided to do something I'd always wanted to do--play the bongo/congos. Tho't I'd let the young'uns see that an 'old lady' could do some new tricks. Wouldn't you know that another over 50 lady said the first time she saw me playing, that she wanted to do it too! Sorry to hear about the set back re: your transplant and your other medical challenges. I, too, will pray for the perfect timing and for healing to come your way. As always, fond regards, Erna T 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 10, 2003 Report Share Posted June 10, 2003 Elvira, What I'm amazed at is that there are so many people on this list are bi-lingual. I only speak one language and for those of you on this site that English is not their native language, you do a fantastic job of communicating. I agree about the information that can be obtained on the internet, it's amazing. I've never really considered myself an internet junkie, but somedays I can't beleive how many hours I've been on line and the number of hours continues to grow. Take care. Connie Re: Back to the drawing board > > > --- > Dear Pierre, > > HAPPY BIRTHDAY!!!! I am so sorry to hear about your donor > problems....but everything is fine in the end, if it's not - it's not > the end !!!..Keep the faith please... > All the best, > Elvira > > In iga-nephropathy , " Pierre L \(groups\) " <pgl- > groups@s...> wrote: > > 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. > > > > 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 10, 2003 Report Share Posted June 10, 2003 I want to acknowledge and thank everyone who replied with best wishes and/or words or wisdom. I greatly appreciate it, and be assured that I read every single message with great interest. I'm truly blessed with such a great group of people. I should say that I'm quite Ok with this. I'm much more concerned about being on hold from the waiting list though. I hope that will be resolved quickly. I'm doing well-enough on dialysis that at this point, I prefer just waiting for a " cadaver " kidney. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 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. Re: Re: Back to the drawing board I want to acknowledge and thank everyone who replied with best wishes and/or words or wisdom. I greatly appreciate it, and be assured that I read every single message with great interest. I'm truly blessed with such a great group of people. I should say that I'm quite Ok with this. I'm much more concerned about being on hold from the waiting list though. I hope that will be resolved quickly. I'm doing well-enough on dialysis that at this point, I prefer just waiting for a " cadaver " kidney. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Hi . That's what they do here too. Right now, since my donor has been medically disqualified, I'm still off the waiting list until they evaluate this pancreatitis problem, which is an unrelated issue, and I'm hoping I can get back on it quickly... Being taken off the list while a potential donor is being evaluated is understandable, but only to a certain point (as in, if they do the evaluation quickly). Where I live, it took more than 7 months for my brother to complete his evaluation. Most of that time is just waiting for various appointments for tests that need to be done and doctors, social workers, psychiatrists, etc. that have to be seen. In his case, it was the very last test that disqualified him: a nuclear renal scan. That's a long time to be off the waiting list, and who knows how many opportunities for a cadaver kidney might have been missed during that time. This is almost a disincentive for related donors coming forward at all. At this point, now that I know that, if anyone else in my family were to come forward to be tested, I think I would say thanks, but no. I don't think I would want to be off the waiting list another 7 or 8 months before I know if it's a definite go or not. I wouldn't lose my spot on the waiting list, but that doesn't mean I might not miss out on a kidney during that time. Pierre 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Pierre, That¹s interesting about being off the waiting list while your brother was being evaluated. I know it¹s different in different countries and even perhaps in different parts of the U.S., but that¹s not what happened for my son. As soon as he was approved as a potential recipient, he was placed on the list even though I started the evaluation as a donor right after that. So technically he was on the list for about 2 months while we waited for the surgery date. It only took about 2 weeks for me to complete the donor evaluation. Most of the testing was done in one very busy day at the transplant center, with some follow-up lab work later. I asked why they kept him on the list even after we knew I had been approved as his donor, and the transplant coordinator said they always do that in case a perfect match turns up with a cadaveric kidney, which would be preferable to a non-perfect living donor. I¹m realizing our situation was a lot easier than what other people are reporting. Betsy > Hi . > > That's what they do here too. Right now, since my donor has been medically > disqualified, I'm still off the waiting list until they evaluate this > pancreatitis problem, which is an unrelated issue, and I'm hoping I can get > back on it quickly... > > Being taken off the list while a potential donor is being evaluated is > understandable, but only to a certain point (as in, if they do the > evaluation quickly). Where I live, it took more than 7 months for my brother > to complete his evaluation. Most of that time is just waiting for various > appointments for tests that need to be done and doctors, social workers, > psychiatrists, etc. that have to be seen. In his case, it was the very last > test that disqualified him: a nuclear renal scan. That's a long time to be > off the waiting list, and who knows how many opportunities for a cadaver > kidney might have been missed during that time. > > This is almost a disincentive for related donors coming forward at all. At > this point, now that I know that, if anyone else in my family were to come > forward to be tested, I think I would say thanks, but no. I don't think I > would want to be off the waiting list another 7 or 8 months before I know if > it's a definite go or not. I wouldn't lose my spot on the waiting list, but > that doesn't mean I might not miss out on a kidney during that time. > > Pierre > > > 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. >> > >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Betsy, I think Pierre was temporarily taken off the list while they evaluate his problems that he has had with pancreatitus. (sp) Marty > > > Hi . > > > > That's what they do here too. Right now, since my donor has been medically > > disqualified, I'm still off the waiting list until they evaluate this > > pancreatitis problem, which is an unrelated issue, and I'm hoping I can get > > back on it quickly... > > > > Being taken off the list while a potential donor is being evaluated is > > understandable, but only to a certain point (as in, if they do the > > evaluation quickly). Where I live, it took more than 7 months for my brother > > to complete his evaluation. Most of that time is just waiting for various > > appointments for tests that need to be done and doctors, social workers, > > psychiatrists, etc. that have to be seen. In his case, it was the very last > > test that disqualified him: a nuclear renal scan. That's a long time to be > > off the waiting list, and who knows how many opportunities for a cadaver > > kidney might have been missed during that time. > > > > This is almost a disincentive for related donors coming forward at all. At > > this point, now that I know that, if anyone else in my family were to come > > forward to be tested, I think I would say thanks, but no. I don't think I > > would want to be off the waiting list another 7 or 8 months before I know if > > it's a definite go or not. I wouldn't lose my spot on the waiting list, but > > that doesn't mean I might not miss out on a kidney during that time. > > > > Pierre > > > > > > 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. > >> > > >> > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 ---Thank you so much Connie It maybe means, that I haven't forgotten as much as I thought I did..( from the time I was at school) LOL But I feel motivated to learn more now... Sorry for the possible language mistakes, but hope that they are just putting a smile on your face...It's funny sometimes to listen foreiners speaking our native language, isn't it ??? Hugs, Elvira In iga-nephropathy , " Connie Sink " <csink@a...> wrote: > Elvira, > What I'm amazed at is that there are so many people on this list are > bi-lingual. I only speak one language and for those of you on this site > that English is not their native language, you do a fantastic job of > communicating. > > I agree about the information that can be obtained on the internet, it's > amazing. I've never really considered myself an internet junkie, but > somedays I can't beleive how many hours I've been on line and the number of > hours continues to grow. > > Take care. > > Connie > > > > > Re: Back to the drawing board > > > > > > --- > > Dear Pierre, > > > > HAPPY BIRTHDAY!!!! I am so sorry to hear about your donor > > problems....but everything is fine in the end, if it's not - it's > not > > the end !!!..Keep the faith please... > > All the best, > > Elvira > > > > In iga-nephropathy , " Pierre L \(groups\) " <pgl- > > groups@s...> wrote: > > > 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. > > > > > > > > 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, 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 Re: Re: Back to the drawing board Hi . That's what they do here too. Right now, since my donor has been medically disqualified, I'm still off the waiting list until they evaluate this pancreatitis problem, which is an unrelated issue, and I'm hoping I can get back on it quickly... Being taken off the list while a potential donor is being evaluated is understandable, but only to a certain point (as in, if they do the evaluation quickly). Where I live, it took more than 7 months for my brother to complete his evaluation. Most of that time is just waiting for various appointments for tests that need to be done and doctors, social workers, psychiatrists, etc. that have to be seen. In his case, it was the very last test that disqualified him: a nuclear renal scan. That's a long time to be off the waiting list, and who knows how many opportunities for a cadaver kidney might have been missed during that time. This is almost a disincentive for related donors coming forward at all. At this point, now that I know that, if anyone else in my family were to come forward to be tested, I think I would say thanks, but no. I don't think I would want to be off the waiting list another 7 or 8 months before I know if it's a definite go or not. I wouldn't lose my spot on the waiting list, but that doesn't mean I might not miss out on a kidney during that time. Pierre 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 Thanks for the update on Betsy! I will say a prayer for today that his treatment will be effective. Quote Link to comment Share on other sites More sharing options...
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