Guest guest Posted December 3, 1999 Report Share Posted December 3, 1999 Debbie, Do you have to be on the list for 2 years or more in Canada like you do here? Your blood type is not on our database and I know that has a lot to do with the wait time. Phil is O+ so we've been told that he'll have at least 2 years on the list before he is transplanted. Have you had any bleeding of your varacies? I would think that you should be listed so that when you are in dire need you'll be ready and thankfully that's the opinion of our doctor (course Phil is on the other end - he's had cholangitis attacks and no cirrhosis and other stuff). Our doctor indicated that the speed of getting listed is really up to your doctor. It's interesting how many drastically different opinions the doctors have as to what is in the PSCer's best interest. Peg J & D Lynch wrote: > I saw my GI today for my regular check up and brought up the > transplant subject again. He said there are basically two roads that > PSC patients take to transplant, one is with repeated attacks of > cholangitis and the other is with prolonged progression, cirrhosis, > and the complications resulting from the cirrhosis. He feels I am of > the latter case since I have had a slow but steady progression for the > past ten years. Even though I have cirrhosis, varices, splenomegaly > etc. etc. he still feels I am several years away from the transplant > process and does not want to start the listing process. As much as I > don't want a transplant right away, I do want to " get on with it. " My > doctor says my liver is still functioning well. I do have another GI > who also agrees. I see him on the 20th for a colonoscopy and a > gastroscope to check my varices (oh no, tubes in both ends!!) I > should be happy for my good fortune thus far and " get on with the > present " . Just thinking out loud. Debbie > ----------------------------------------------------------------------- > [click here] > Click here! > eGroups.com Home: /group/ > www. - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 1999 Report Share Posted December 3, 1999 Debbie, The rarer blood types seem to get transplanted sooner I guess because there is not as much competition. Did you add that to the database. If you can't figure out how to do it let me know and I'll do it for you. Peg J & D Lynch wrote: > Peggy, > As far as I know there is not a minimum wait time on Canadian lists. The > transplant coordinator told me that they would only list a person if that > person were prepared to have the transplant the day of the listing, so I > would assume as soon as a liver was a match you would be transplanted. > Aubrey would know better having been through this process. > > I have not had a problem with the varices. Two years ago when I was first > diagnosed with varices they were stage 1, mild with little to no risk of > bleeding. I will know better where I stand now after my gastroscope. > > My bloodtype is A-. > Debbie > Re: Mixed Blessing? > > >Debbie, > >Do you have to be on the list for 2 years or more in Canada like you do > >here? Your blood type is not on our database and I know that has a lot > >to do with the wait time. Phil is O+ so we've been told that he'll have > >at least 2 years on the list before he is transplanted. Have you had > >any bleeding of your varacies? I would think that you should be listed > >so that when you are in dire need you'll be ready and thankfully that's > >the opinion of our doctor (course Phil is on the other end - he's had > >cholangitis attacks and no cirrhosis and other stuff). Our doctor > >indicated that the speed of getting listed is really up to your doctor. > >It's interesting how many drastically different opinions the doctors > >have as to what is in the PSCer's best interest. > >Peg > > > >J & D Lynch wrote: > > > >> I saw my GI today for my regular check up and brought up the > >> transplant subject again. He said there are basically two roads that > >> PSC patients take to transplant, one is with repeated attacks of > >> cholangitis and the other is with prolonged progression, cirrhosis, > >> and the complications resulting from the cirrhosis. He feels I am of > >> the latter case since I have had a slow but steady progression for the > >> past ten years. Even though I have cirrhosis, varices, splenomegaly > >> etc. etc. he still feels I am several years away from the transplant > >> process and does not want to start the listing process. As much as I > >> don't want a transplant right away, I do want to " get on with it. " My > >> doctor says my liver is still functioning well. I do have another GI > >> who also agrees. I see him on the 20th for a colonoscopy and a > >> gastroscope to check my varices (oh no, tubes in both ends!!) I > >> should be happy for my good fortune thus far and " get on with the > >> present " . Just thinking out loud. Debbie > >> ----------------------------------------------------------------------- > >> [click here] > >> Click here! > >> eGroups.com Home: /group/ > >> www. - Simplifying group communications > > > > > > > > > >------------------------------------------------------------------------ > >Easy as one, two, FREE! FREE shipping, Gift Wrap and > >ShimmerRing with any purchase at iBeauty.com We have > >over 500 brands of fragrances, treatment, cosmetics. > >http://clickhere./click/1790 > > > >-- Create a poll/survey for your group! > >-- /vote?listname= & m=1 > > > > > > > > ------------------------------------------------------------------------ > Easy as one, two, FREE! FREE shipping, Gift Wrap and > ShimmerRing with any purchase at iBeauty.com We have > over 500 brands of fragrances, treatment, cosmetics. > http://clickhere./click/1790 > > -- Easily schedule meetings and events using the group calendar! > -- /cal?listname= & m=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 1999 Report Share Posted December 3, 1999 Peggy, As far as I know there is not a minimum wait time on Canadian lists. The transplant coordinator told me that they would only list a person if that person were prepared to have the transplant the day of the listing, so I would assume as soon as a liver was a match you would be transplanted. Aubrey would know better having been through this process. I have not had a problem with the varices. Two years ago when I was first diagnosed with varices they were stage 1, mild with little to no risk of bleeding. I will know better where I stand now after my gastroscope. My bloodtype is A-. Debbie Re: Mixed Blessing? >Debbie, >Do you have to be on the list for 2 years or more in Canada like you do >here? Your blood type is not on our database and I know that has a lot >to do with the wait time. Phil is O+ so we've been told that he'll have >at least 2 years on the list before he is transplanted. Have you had >any bleeding of your varacies? I would think that you should be listed >so that when you are in dire need you'll be ready and thankfully that's >the opinion of our doctor (course Phil is on the other end - he's had >cholangitis attacks and no cirrhosis and other stuff). Our doctor >indicated that the speed of getting listed is really up to your doctor. >It's interesting how many drastically different opinions the doctors >have as to what is in the PSCer's best interest. >Peg > >J & D Lynch wrote: > >> I saw my GI today for my regular check up and brought up the >> transplant subject again. He said there are basically two roads that >> PSC patients take to transplant, one is with repeated attacks of >> cholangitis and the other is with prolonged progression, cirrhosis, >> and the complications resulting from the cirrhosis. He feels I am of >> the latter case since I have had a slow but steady progression for the >> past ten years. Even though I have cirrhosis, varices, splenomegaly >> etc. etc. he still feels I am several years away from the transplant >> process and does not want to start the listing process. As much as I >> don't want a transplant right away, I do want to " get on with it. " My >> doctor says my liver is still functioning well. I do have another GI >> who also agrees. I see him on the 20th for a colonoscopy and a >> gastroscope to check my varices (oh no, tubes in both ends!!) I >> should be happy for my good fortune thus far and " get on with the >> present " . Just thinking out loud. Debbie >> ----------------------------------------------------------------------- >> [click here] >> Click here! >> eGroups.com Home: /group/ >> www. - Simplifying group communications > > > > >------------------------------------------------------------------------ >Easy as one, two, FREE! FREE shipping, Gift Wrap and >ShimmerRing with any purchase at iBeauty.com We have >over 500 brands of fragrances, treatment, cosmetics. >http://clickhere./click/1790 > >-- Create a poll/survey for your group! >-- /vote?listname= & m=1 > > > Quote Link to comment Share on other sites More sharing options...
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