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| Beth Allen 2005-06-08, 11:52 am |
| Hi! I've lurked around for a little bit, added a little bit, but now I want
to say to all those of you who have given up on a transplant that miracles
do happen. After four & a half years on the list, when I had totaly
convinced myself I'd never get one --- I just got home from the hospital two
days ago with a sweet new kidney!!!
I know this doesn't help those of you still on and giving up, because
everyone kept telling me of course I'd get one, but keep going getting the
kidney isn't easy but it sure is worth the wait.
When I was waiting, the time seemed endless, but now looking back, I realize
that it wasn't really that long (especially compared to some folks).
Good luck all, don't give up, I'm more and more sure that there is a kidney
out there for each of you.
Beth
25/05/2005
University Hospital of Wales
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| Tom Gower 2005-06-08, 11:52 am |
| You're right Beth, there are plenty of kidneys out there, the
problem is, most of them are in people who don't want to be organ
doners. There are also those kidneys that are donated, but are damaged
in some way. This happened to a friend of mine, He was on the transplant
list, was notified that a kidney was becoming available, and found out
at the last minute that the kidney was damaged, and couldn't be used. So
he's back on dialysis.
I hope and pray that your transplant goes well, and
everything turns out ok. God bless..........
It's not how many times we have tried and failed that matter, but
whether we tried at all.
TOM G
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| Larry Krzewinski 2005-06-08, 11:52 am |
| On Wed, 8 Jun 2005 15:47:54 +0100, "Beth Allen"
<mary.b2@tiscali.co.uk> wrote:
>Hi! I've lurked around for a little bit, added a little bit, but now I want
>to say to all those of you who have given up on a transplant that miracles
>do happen. After four & a half years on the list, when I had totaly
>convinced myself I'd never get one --- I just got home from the hospital two
>days ago with a sweet new kidney!!!
>
>I know this doesn't help those of you still on and giving up, because
>everyone kept telling me of course I'd get one, but keep going getting the
>kidney isn't easy but it sure is worth the wait.
>
>When I was waiting, the time seemed endless, but now looking back, I realize
>that it wasn't really that long (especially compared to some folks).
>
>Good luck all, don't give up, I'm more and more sure that there is a kidney
>out there for each of you.
>
>
>Beth
>25/05/2005
>University Hospital of Wales
Beth, I waited almost as long on the kidney transplant list. I waited
four years, one month, and eighteen days. Wait times are long now
with more people waiting for organs than ever and there is a
transplantable organ shortage. It isn't uncommon for wait times to be
over five years even with a one of six or even a zero of six antigen
match transplant. The best advice I can offer anyone who doesn't have
a living donor is to get listed for a transplant as soon as possible.
If one doctor declines to list you get a second opinion.
Kidney disease isn't usually what kills a person with ESRD. Over 90%
of those with ESRD and on dialysis die from heart failure. While
dialysis will keep you alive it is stressful on your heart since what
would normally be done continuously by your kidneys is done in a few
hours every two to three days. That fluid buildup and then rapid
removal can cause the heart itself to expand and contract. If you
consider the analogy of your heart being like a balloon you know that
you can only inflate a balloon and deflate it so many times before it
explodes. Enlarged hearts are common in dialysis patients and
particularly in those that abuse their fluid restrictions. Once the
heart grows too enlarged the walls of the heart grow thin.
Get listed as soon as possible if you are on dialysis. If you don't
qualify for a transplant then follow your fluid and dietary
restrictions. Even though the average attrition rates on hemodialysis
are 10% per year giving an average life-span on dialysis of ten years
it is possible to beat the odds just by following doctor's orders.
Larry
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| Chuk Goodin 2005-06-08, 11:52 am |
| On Wed, 08 Jun 2005 08:28, Larry Krzewinski
<Feerless_Freep@madmagazine.com> wrote:
>Kidney disease isn't usually what kills a person with ESRD. Over 90%
>of those with ESRD and on dialysis die from heart failure. While
>dialysis will keep you alive it is stressful on your heart since what
>would normally be done continuously by your kidneys is done in a few
>hours every two to three days. That fluid buildup and then rapid
>removal can cause the heart itself to expand and contract. If you
>consider the analogy of your heart being like a balloon you know that
>you can only inflate a balloon and deflate it so many times before it
>explodes. Enlarged hearts are common in dialysis patients and
>particularly in those that abuse their fluid restrictions. Once the
>heart grows too enlarged the walls of the heart grow thin.
Do you know if that's the same for people on peritoneal dialysis? My
daughter did that before her transplant, and she'll probably need another
kidney one day (not soon, knock wood...she's had this one three and a half
years and it's doing fine). Or maybe nocturnal hemodialysis? I'm just
wondering, since those are more gradual.
--
chuk
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| I don't think there is any good long term survival data yet for people on
daily hemodialysis - only observational type of information. I switched to
short daily home hemo a few months ago, after 2 and a half yrs on regular 3
times per week in centre hemodialysis. Subjectively, it sure feels better
(much better in fact), and my labs bear this out, but it doesn't tell me
anything about long term mortality (and to be honest, I don't want to know
anyway). We can only make assumptions about it being better in the long
term, but nobody knows for sure. Peritoneal offers lifestyle advantages, but
I don't think it offers any long term health advantages over regular
hemodialysis. It's continuous, for sure, but it needs to be in order to
compensate for the low efficiency of doing dialysis using the peritoneal
membrane compared to the high efficiency of hemodialysis. So in the end, it
ends up about the same as regular hemodialysis healthwise.
If I couldn't get a transplant, I would prefer to be on daily nocturnal
hemodialysis. Fortunately, I'm still healthy enough to be on the transplant
waiting list.
Pierre
"Chuk Goodin" <cgoodin@sfu.ca> wrote in message
news:d877bp$ofn$1@morgoth.sfu.ca...
> On Wed, 08 Jun 2005 08:28, Larry Krzewinski
> <Feerless_Freep@madmagazine.com> wrote:
>
> Do you know if that's the same for people on peritoneal dialysis? My
> daughter did that before her transplant, and she'll probably need another
> kidney one day (not soon, knock wood...she's had this one three and a half
> years and it's doing fine). Or maybe nocturnal hemodialysis? I'm just
> wondering, since those are more gradual.
>
> --
> chuk
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| Larry Krzewinski 2005-06-08, 6:10 pm |
| On Wed, 8 Jun 2005 16:45:45 +0000 (UTC), cgoodin@sfu.ca (Chuk Goodin)
wrote:
>On Wed, 08 Jun 2005 08:28, Larry Krzewinski
><Feerless_Freep@madmagazine.com> wrote:
>
>Do you know if that's the same for people on peritoneal dialysis? My
>daughter did that before her transplant, and she'll probably need another
>kidney one day (not soon, knock wood...she's had this one three and a half
>years and it's doing fine). Or maybe nocturnal hemodialysis? I'm just
>wondering, since those are more gradual.
Chuk,
Both peritoneal dialysis and nocturnal dialysis are easier on a person
due to the lengths of time a person is dialyzed. The longer you can
dialyze, which more closely resembles how the kidneys work, the easier
it is on you. Peritoneal dialysis does not clean the blood of
impurities as effectively as hemodialysis does, however, and not all
people with ESRD qualify for peritoneal dialysis. You should speak
with your nephrologist and possibly even get several opinions about
this and find out exactly what your options are.
I want to wish the best of luck to your daughter.
Larry
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| daniel.granot@gmail.com 2005-06-09, 11:53 am |
| Waited six long years on haemo-dialysis for my second kidney transplant.
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