|
Home > Archive > Kidney Failure > September 2005 > Uncertain about transplant
You are viewing an archived Text-only version of the thread.
To view this thread in it's original format and/or if you want to reply to
this thread please [click here]
| Author |
Uncertain about transplant
|
|
|
| Hello,
My name is Katie. I just joined this group today after much internet
searching for an online support group.
I've had type 1 diabetes for 22 years and now have renal failure. It's
fairly new for me. Up until last year my kidneys were doing ok then,
just when everything was going right in my life - everything went
wrong. I got very bad pneumonia, ended up with heart failure and then
my kidneys packed it in. I'd been married only three months, had a
steady job and was planning on starting a family. All of a sudden I was
off work, told I'd die if I got pregnant and sent my new husband in
search of his blood group!
As strange luck would have it he was the same blood group as me so
we're now going through a myriad of tests to see if he's a good enough
match.
He's really keen. He wants our life back on track but I'm uncertain
about so many things.
I've been reading about the anti-rejection medication and the side
affects sound much worse than the benefits of a new kidney. I really
think I'd rather take my chances with my malfunctioning kidneys.
What do other people think about the affects of anti-rejection drugs?
Are they worth a new kidney?
I just don't want to do such a serious thing as taking someone I love
more than my own life's organ, putting them through such pain and risk
to make my life worse rather than better.
Can anyone offer any advice about this?
Thanks,
Katie
| |
| Larry Krzewinski 2005-07-26, 9:06 am |
| On 25 Jul 2005 22:11:41 -0700, "Katie" <katie.field@rmit.edu.au>
wrote:
>Hello,
>
>My name is Katie. I just joined this group today after much internet
>searching for an online support group.
>
>I've had type 1 diabetes for 22 years and now have renal failure. It's
>fairly new for me. Up until last year my kidneys were doing ok then,
>just when everything was going right in my life - everything went
>wrong. I got very bad pneumonia, ended up with heart failure and then
>my kidneys packed it in. I'd been married only three months, had a
>steady job and was planning on starting a family. All of a sudden I was
>off work, told I'd die if I got pregnant and sent my new husband in
>search of his blood group!
>
>As strange luck would have it he was the same blood group as me so
>we're now going through a myriad of tests to see if he's a good enough
>match.
>
>He's really keen. He wants our life back on track but I'm uncertain
>about so many things.
>
>I've been reading about the anti-rejection medication and the side
>affects sound much worse than the benefits of a new kidney. I really
>think I'd rather take my chances with my malfunctioning kidneys.
>
>What do other people think about the affects of anti-rejection drugs?
>Are they worth a new kidney?
>
>I just don't want to do such a serious thing as taking someone I love
>more than my own life's organ, putting them through such pain and risk
>to make my life worse rather than better.
>
>Can anyone offer any advice about this?
>
>Thanks,
>
>Katie
You could wait for a cadaveric donor kidney if you're that concerned
with your husband's welfare. You may have to wait years on dialysis
for that kidney but you could end up with a kidney/pancreas transplant
which would possibly end your diabetes. To do that you'd have to go
on dialysis in the interim and you wouldn't be able to conceive a
child during that time.
The choice is yours and your husbands ultimately. A transplant isn't
a cure for kidney failure but it gives you a much better chance at a
long and pretty normal life. Attrition rates on dialysis average 10%
a year but that rate is skewed due to the inclusions of diabetics.
Diabetics don't do as well on dialysis.
Talk with your doctor and transplant team. Learn as much as you can.
Knowledge will help you make your decision. One last thing, though.
If your husband changes his mind at any time do not attempt to force
or coerce him into donating even if things have been set in motion.
Donors have the right to change their mind right up until the time
they are put to sleep using anesthesia.
Good luck,
Larry
| |
|
|
> On 25 Jul 2005 22:11:41 -0700, "Katie" <katie.field@rmit.edu.au>
> wrote:
>
>
Hi Katie,
Sorry to hear you're on dialysis now, but, you certainly aren't alone in
that respect. I've been on it for 3 years. I remain on the waiting list,
after one relative was eliminated after a surgery date was already set, and
also after I came close 2 years ago when they admitted me to the transplant
floor as a very likely backup recipient. Fortunately for the guy ahead of
me, and unfortunately for me, the other guy did pass the crossmatching after
all, even though the odds were 80% against it. That's the way it goes
sometimes, so, I'm still waiting. In the meantime, I've taken steps to
improve my life on dialysis by first looking into home dialysis (both
peritoneal and hemodialysis), and since I was already on hemodialysis
anyway, and home hemodialysis is available where I live, I chose to switch
to daily nocturnal hemodialysis, which I do myself at home.
Three years into the waiting list, I still have the same concerns as you do
about transplants. I think we pretty much all do. We are going from the
known situation of dialysis (known because we are on it and doing
reasonably-well even if it's very inconvenient and trying at times), to the
unknowns of a transplant. But there is little doubt that quality of life is
much better with a kidney transplant. Daily nocturnal hemodialysis has been
a godsend to me, as except for having to actually do the dialysis 5 or 6
nights per week, I have pretty good quality of life healthwise. I can pretty
much eat and drink anything I want (sometimes I even have trouble eating or
drinking enough!), and I have much more energy. Other problems like restless
legs and sexuality have greatly improved.
But, I will still be happy to get a transplant when it comes. I mean, no
matter how good the actual dialysis is, it's still being tied to part-time
life support.
I can understand your feelings re depriving your husband of one of his
kidneys. These are issues that can't really be addressed adequately in a
forum. You really have to openly discuss these concerns with your transplant
team. The social worker is probably the one you will want to see for this.
You may not already have had your interview with the social worker at this
point, I don't know. As Larry already said, you can simply decide to go on
the waiting list. With the waiting list, many factors come into play besides
your position on the list. There is your antigen profile (which if it's low,
as it probably is, greatly increases your chances of slipping in ahead of
other people who won't pass the crossmatching when a kidney becomes
available), the size of the kidney, the urgency of the need, etc. Plus,
children always have priority if the kidney matches and is of the right
size. Because of that, it's impossible for even your transplant team experts
to give you anything but the average waiting time for your blood type. Once
you're active on the list, you could wait years, or you could get a kidney
in short order. It happens all the time. But of course, a live related donor
kidney will definitely be better than one from the waiting list, if only
because waiting list kidneys have already been on ice for hours before you
get it. Live related donor or straight to the waiting list, it's a decision
only you can make (and the donor, of course), but it's hard to make that
decision in a vacuum, so tell the transplant coordinator you need to discuss
these issues with someone. They know these concerns very well.
There's more to a potential donor being accepted than just matching. They
also look very extensively for any other health issues that might come into
play. It's all very stressful, because a potential donor evaluation can
often take months, and even after it's done, every donor has the opportunity
to change his or her mind, and you will never know this happened. On the
other hand, the waiting list is stressful too, because, you are waiting for
a call that might come in the next minute as easily as it could only come 4
years from now.
All I can do is to wish you good luck.
By the way, don't worry too much about statistics regarding dialysis. These
are horribly distorted due to the fact that many people are already very
sick in other ways by the time they start dialysis. There's no reason an
otherwise healthy person who follows the dietary requirements and who stays
active and fit can't live on dialysis almost indefinitely. But, a transplant
is still the better treatment for most people.
Pierre
| |
| Tom Gower 2005-07-26, 12:10 pm |
| Hi Katie! I'm so sorry to hear about your misfortune. Dialysis
is not so bad really, if you look at it as if it's saving your life,
which it is. I have been on dialysis for 17 months now, and was just
recently informed that I was not a good transplant patient, due to my
heart condition. So unless a miracle occurs, it looks like I will be on
dialysis indefinitely.
You have gotten some pretty good advice from some of the
people in this support group, all I can add is, try to take this in a
positive manner, I know that may be hard to do right now, but believe me
you will learn to live a pretty normal life on dialysis. God bless you,
and I will keep you and all kidney patients in my prayers.... Good
Luck........
It's not how many times we have tried and failed that matter, but
whether we tried at all.
TOM G
| |
|
| Katie wrote:
> Hello,
>
> My name is Katie. I just joined this group today after much internet
> searching for an online support group.
>
> I've had type 1 diabetes for 22 years and now have renal failure. It's
> fairly new for me. Up until last year my kidneys were doing ok then,
> just when everything was going right in my life - everything went
> wrong. I got very bad pneumonia, ended up with heart failure and then
> my kidneys packed it in. I'd been married only three months, had a
> steady job and was planning on starting a family. All of a sudden I was
> off work, told I'd die if I got pregnant and sent my new husband in
> search of his blood group!
>
> As strange luck would have it he was the same blood group as me so
> we're now going through a myriad of tests to see if he's a good enough
> match.
>
> He's really keen. He wants our life back on track but I'm uncertain
> about so many things.
>
> I've been reading about the anti-rejection medication and the side
> affects sound much worse than the benefits of a new kidney. I really
> think I'd rather take my chances with my malfunctioning kidneys.
>
> What do other people think about the affects of anti-rejection drugs?
> Are they worth a new kidney?
>
> I just don't want to do such a serious thing as taking someone I love
> more than my own life's organ, putting them through such pain and risk
> to make my life worse rather than better.
>
> Can anyone offer any advice about this?
>
> Thanks,
>
> Katie
>
Also remember the wait time for a Kidney /Pancreas transplant tends to
be a lot shorter than a kidney alone and also has more benifits as your
diabetes will be in remissio.
| |
| WannaTrade 2005-07-27, 9:01 am |
| Dear Katie, my name is Peter and I am a 41 year old guy from the
Netherlands. I have had diabetes type I for about 24 years and I was
also diagnosed with renal failure. Two years ago I had a
kindney/pancreas transplant and although I wasn't exactly looking out
for it, I am really happy I took this step. I also need to take quite
some anti-rejection
medication and I must say the side effects are very limited, but to be
honest with you, that may differ from one person to another. If I were
you I'd go for the transplant!! Dialyses may be okay temporarily, but
your body will poison itself slowly in the long term. Yesterday I read
an article in one of our national newspapers that kindney failure due
to diabetes is caused by a missing gene and that they will probably be
able to solve this problem in the future, but I know this information
is not very helpfull for you right now. If ever you may have any
additional questions, feel free to ask me. And take care for now and
the future!!!
Love, Peter
Katie schreef:
> Hello,
>
> My name is Katie. I just joined this group today after much internet
> searching for an online support group.
>
> I've had type 1 diabetes for 22 years and now have renal failure. It's
> fairly new for me. Up until last year my kidneys were doing ok then,
> just when everything was going right in my life - everything went
> wrong. I got very bad pneumonia, ended up with heart failure and then
> my kidneys packed it in. I'd been married only three months, had a
> steady job and was planning on starting a family. All of a sudden I was
> off work, told I'd die if I got pregnant and sent my new husband in
> search of his blood group!
>
> As strange luck would have it he was the same blood group as me so
> we're now going through a myriad of tests to see if he's a good enough
> match.
>
> He's really keen. He wants our life back on track but I'm uncertain
> about so many things.
>
> I've been reading about the anti-rejection medication and the side
> affects sound much worse than the benefits of a new kidney. I really
> think I'd rather take my chances with my malfunctioning kidneys.
>
> What do other people think about the affects of anti-rejection drugs?
> Are they worth a new kidney?
>
> I just don't want to do such a serious thing as taking someone I love
> more than my own life's organ, putting them through such pain and risk
> to make my life worse rather than better.
>
> Can anyone offer any advice about this?
>
> Thanks,
>
> Katie
| |
| am012f2091@blueyonder.co.uk 2005-07-31, 6:01 pm |
| On Tue, 26 Jul 2005 09:06:33 -0400, "Pete" <nospam@hotmail.com> wrote:
Katie
My father donated me a kidney seven years ago. I was on dialysis for
just under seven years. My life has been transformed by the
transplant. On dialysis I struggled to go to work every day especially
after dialysis as I was so tired, I could not eat much as my sense of
taste disapeared (eating is a chore when you cannot taste your food!).
But probably worst of all was the fight with the fluid restriction.
Have you tried not drinking when you are constantly thirsty and only
alowed to drink 750ml a day? It took over my life. From the moment I
woke up untill the moment I went to bed all I could think about was
drinking! Torture.
Now I am back to normal. I go to work every day that I can, because I
am well enough to, I eat and drink what I want, when I want, I go
running twice a week and play soccer. I have to take alot of
medication, but in comparison to 15 hours on a kidney machine every
week it is a minor inconvenience. Yes I have an increased risk of
getting cancer and all the other side effects such as increased hair
growth etc. etc but it is still 100 times better than kidney failure &
dialysis!
My father lost a little weight after the op but was and still
is fighting fit! I took a year from the start of all the tests that
needed to be done until the transplant but it was worth the wait.
My advice to you is go for it! IT IS 100x BETTER THAN A KIDNEY
MACHINE!!!!!
>
>
>
>Hi Katie,
>
>Sorry to hear you're on dialysis now, but, you certainly aren't alone in
>that respect. I've been on it for 3 years. I remain on the waiting list,
>after one relative was eliminated after a surgery date was already set, and
>also after I came close 2 years ago when they admitted me to the transplant
>floor as a very likely backup recipient. Fortunately for the guy ahead of
>me, and unfortunately for me, the other guy did pass the crossmatching after
>all, even though the odds were 80% against it. That's the way it goes
>sometimes, so, I'm still waiting. In the meantime, I've taken steps to
>improve my life on dialysis by first looking into home dialysis (both
>peritoneal and hemodialysis), and since I was already on hemodialysis
>anyway, and home hemodialysis is available where I live, I chose to switch
>to daily nocturnal hemodialysis, which I do myself at home.
>
>Three years into the waiting list, I still have the same concerns as you do
>about transplants. I think we pretty much all do. We are going from the
>known situation of dialysis (known because we are on it and doing
>reasonably-well even if it's very inconvenient and trying at times), to the
>unknowns of a transplant. But there is little doubt that quality of life is
>much better with a kidney transplant. Daily nocturnal hemodialysis has been
>a godsend to me, as except for having to actually do the dialysis 5 or 6
>nights per week, I have pretty good quality of life healthwise. I can pretty
>much eat and drink anything I want (sometimes I even have trouble eating or
>drinking enough!), and I have much more energy. Other problems like restless
>legs and sexuality have greatly improved.
>
>But, I will still be happy to get a transplant when it comes. I mean, no
>matter how good the actual dialysis is, it's still being tied to part-time
>life support.
>
>I can understand your feelings re depriving your husband of one of his
>kidneys. These are issues that can't really be addressed adequately in a
>forum. You really have to openly discuss these concerns with your transplant
>team. The social worker is probably the one you will want to see for this.
>You may not already have had your interview with the social worker at this
>point, I don't know. As Larry already said, you can simply decide to go on
>the waiting list. With the waiting list, many factors come into play besides
>your position on the list. There is your antigen profile (which if it's low,
>as it probably is, greatly increases your chances of slipping in ahead of
>other people who won't pass the crossmatching when a kidney becomes
>available), the size of the kidney, the urgency of the need, etc. Plus,
>children always have priority if the kidney matches and is of the right
>size. Because of that, it's impossible for even your transplant team experts
>to give you anything but the average waiting time for your blood type. Once
>you're active on the list, you could wait years, or you could get a kidney
>in short order. It happens all the time. But of course, a live related donor
>kidney will definitely be better than one from the waiting list, if only
>because waiting list kidneys have already been on ice for hours before you
>get it. Live related donor or straight to the waiting list, it's a decision
>only you can make (and the donor, of course), but it's hard to make that
>decision in a vacuum, so tell the transplant coordinator you need to discuss
>these issues with someone. They know these concerns very well.
>
>There's more to a potential donor being accepted than just matching. They
>also look very extensively for any other health issues that might come into
>play. It's all very stressful, because a potential donor evaluation can
>often take months, and even after it's done, every donor has the opportunity
>to change his or her mind, and you will never know this happened. On the
>other hand, the waiting list is stressful too, because, you are waiting for
>a call that might come in the next minute as easily as it could only come 4
>years from now.
>
>All I can do is to wish you good luck.
>
>By the way, don't worry too much about statistics regarding dialysis. These
>are horribly distorted due to the fact that many people are already very
>sick in other ways by the time they start dialysis. There's no reason an
>otherwise healthy person who follows the dietary requirements and who stays
>active and fit can't live on dialysis almost indefinitely. But, a transplant
>is still the better treatment for most people.
>
>Pierre
>
>
| |
| am012f2091@blueyonder.co.uk 2005-07-31, 6:01 pm |
| On Tue, 26 Jul 2005 09:06:33 -0400, "Pete" <nospam@hotmail.com> wrote:
>
>
>
>Hi Katie,
>
>Sorry to hear you're on dialysis now, but, you certainly aren't alone in
>that respect. I've been on it for 3 years. I remain on the waiting list,
>after one relative was eliminated after a surgery date was already set, and
>also after I came close 2 years ago when they admitted me to the transplant
>floor as a very likely backup recipient. Fortunately for the guy ahead of
>me, and unfortunately for me, the other guy did pass the crossmatching after
>all, even though the odds were 80% against it. That's the way it goes
>sometimes, so, I'm still waiting. In the meantime, I've taken steps to
>improve my life on dialysis by first looking into home dialysis (both
>peritoneal and hemodialysis), and since I was already on hemodialysis
>anyway, and home hemodialysis is available where I live, I chose to switch
>to daily nocturnal hemodialysis, which I do myself at home.
>
>Three years into the waiting list, I still have the same concerns as you do
>about transplants. I think we pretty much all do. We are going from the
>known situation of dialysis (known because we are on it and doing
>reasonably-well even if it's very inconvenient and trying at times), to the
>unknowns of a transplant. But there is little doubt that quality of life is
>much better with a kidney transplant. Daily nocturnal hemodialysis has been
>a godsend to me, as except for having to actually do the dialysis 5 or 6
>nights per week, I have pretty good quality of life healthwise. I can pretty
>much eat and drink anything I want (sometimes I even have trouble eating or
>drinking enough!), and I have much more energy. Other problems like restless
>legs and sexuality have greatly improved.
>
>But, I will still be happy to get a transplant when it comes. I mean, no
>matter how good the actual dialysis is, it's still being tied to part-time
>life support.
>
>I can understand your feelings re depriving your husband of one of his
>kidneys. These are issues that can't really be addressed adequately in a
>forum. You really have to openly discuss these concerns with your transplant
>team. The social worker is probably the one you will want to see for this.
>You may not already have had your interview with the social worker at this
>point, I don't know. As Larry already said, you can simply decide to go on
>the waiting list. With the waiting list, many factors come into play besides
>your position on the list. There is your antigen profile (which if it's low,
>as it probably is, greatly increases your chances of slipping in ahead of
>other people who won't pass the crossmatching when a kidney becomes
>available), the size of the kidney, the urgency of the need, etc. Plus,
>children always have priority if the kidney matches and is of the right
>size. Because of that, it's impossible for even your transplant team experts
>to give you anything but the average waiting time for your blood type. Once
>you're active on the list, you could wait years, or you could get a kidney
>in short order. It happens all the time. But of course, a live related donor
>kidney will definitely be better than one from the waiting list, if only
>because waiting list kidneys have already been on ice for hours before you
>get it. Live related donor or straight to the waiting list, it's a decision
>only you can make (and the donor, of course), but it's hard to make that
>decision in a vacuum, so tell the transplant coordinator you need to discuss
>these issues with someone. They know these concerns very well.
>
>There's more to a potential donor being accepted than just matching. They
>also look very extensively for any other health issues that might come into
>play. It's all very stressful, because a potential donor evaluation can
>often take months, and even after it's done, every donor has the opportunity
>to change his or her mind, and you will never know this happened. On the
>other hand, the waiting list is stressful too, because, you are waiting for
>a call that might come in the next minute as easily as it could only come 4
>years from now.
>
>All I can do is to wish you good luck.
>
>By the way, don't worry too much about statistics regarding dialysis. These
>are horribly distorted due to the fact that many people are already very
>sick in other ways by the time they start dialysis. There's no reason an
>otherwise healthy person who follows the dietary requirements and who stays
>active and fit can't live on dialysis almost indefinitely. But, a transplant
>is still the better treatment for most people.
>
>Pierre
>
>
| |
| Peter McLeod 2005-08-02, 10:54 pm |
| In article <1122354701.695555.182390@g43g2000cwa.googlegroups.com>,
katie.field@rmit.edu.au (Katie) wrote:
> *Subject:* Uncertain about transplant
> *From:* "Katie" <katie.field@rmit.edu.au>
> *Date:* 25 Jul 2005 22:11:41 -0700
>
> Hello,
>
Hi Katie,
I am also diabetic and kidney failure happened when I was 32 (after 20
years of diabetes) I was on Dialysis for about 20 months and had both
CCPD and Haemo. I felt so ill during that time I didn't do well. Some
people coped with it well but I didn't I couldn't work, I was sick
almost every time I ate, I found eating restrictions very hard and
fluid restrictions harder still(500mL a day) I was week and could only
walk a few hundred yards. I didn't believe that after a transplant I
would feel better, but I had my transplant about 2am and by the next
morning I was awake, feeling brilliant and eating fish and chips (for
breakfast ;-)).
The side effects of the anti-rejection drugs are minor and not a major
problem. The only effects I have noticed was excessive gum growth,
warts on my lips and a few more infections than most people. The warts
went when I forgot to take my Azathioprine for a week, the gum growth
retuned to normal when I stopped taking Neoral and azathioprine in
favour of Myfortic. Oh one more effect I have to have a steroid boost
jab whenever the body is to undergo a shock such as extracting a tooth
thanks to the prednisilone.
Life would be brilliant if it were not for the other diabetic
complications I've had ( lost 2 legs, Retinopathy (nearly lost my
eyes)) and a few others. I am now 45 and my transplant is still going
well, though there is a little diabetic damage.
In all If you could put your Husband through the op and he is for it, I
would go for it every time, there is no comparison with pre and post
transplant life. I myself had a cadaveric transplant.
Good luck with whatever you decide
Pete Mc
| |
| Katie 2005-08-03, 10:57 pm |
| Hi everyone,
Thanks for sharing your experiences. I've got myself into such a stress
about this that nothing will ease my mind completely, but hearing from
other people who've had transplants does help a lot.
We've found out this week that my husband is a fairly good match (we
had a negative crossmatch and acceptable tissue typing) so it looks set
to happen in November. I'm trying to be more positive about it - we're
even planning a big pre-transplant party so we've got something to plan
as a distraction from the worry.
One thing I am excited about is eating bananas again! Banana fritters
are yum! Maybe they'll be enough of a compensation for being a young
girl and growing a beard!
Thanks again,
Katie
| |
|
| Katie wrote:
> Hi everyone,
>
> Thanks for sharing your experiences. I've got myself into such a stress
> about this that nothing will ease my mind completely, but hearing from
> other people who've had transplants does help a lot.
>
> We've found out this week that my husband is a fairly good match (we
> had a negative crossmatch and acceptable tissue typing) so it looks set
> to happen in November. I'm trying to be more positive about it - we're
> even planning a big pre-transplant party so we've got something to plan
> as a distraction from the worry.
>
> One thing I am excited about is eating bananas again! Banana fritters
> are yum! Maybe they'll be enough of a compensation for being a young
> girl and growing a beard!
>
> Thanks again,
>
> Katie
>
Perhaps eating bananas is the reason you kidneys failed !!!
| |
|
| Katie,
The excess hair growth does go away after your medications are tapered off
and things stabilize. And like I've told everyone I know you can trim down
the hair on your arms with a cheap pair of hair clippers with a 1/4 inch
attachment get rid of any facial hair either with a razor or tweezers. That
little bit of extra primping is nothing compared to how well you do in the
long run................
Celeste
"Katie" <katie.field@rmit.edu.au> wrote in message
news:1123114247.431434.106670@g47g2000cwa.googlegroups.com...
> Hi everyone,
>
> Thanks for sharing your experiences. I've got myself into such a stress
> about this that nothing will ease my mind completely, but hearing from
> other people who've had transplants does help a lot.
>
> We've found out this week that my husband is a fairly good match (we
> had a negative crossmatch and acceptable tissue typing) so it looks set
> to happen in November. I'm trying to be more positive about it - we're
> even planning a big pre-transplant party so we've got something to plan
> as a distraction from the worry.
>
> One thing I am excited about is eating bananas again! Banana fritters
> are yum! Maybe they'll be enough of a compensation for being a young
> girl and growing a beard!
>
> Thanks again,
>
> Katie
>
| |
| korland@starplexscientific.com 2005-08-22, 11:59 am |
| I've had a kidney transplant (polycystic kidney disease) and do not
have excessive hair growth. In fact I've lost a fair amount of hair but
still look just fine (curly hair is a blessing in this situation).
I believe hair loss depends on the drugs you take, there are so many of
them for the doctors to choose from. You can talk to them ahead of time
about their choices of immunosuppressants for you. State your concerns,
you're allowed to be vain (besides, it's a healthy sign I think).
I say go for the transplant. The drug side-effects are a small price to
pay. Everyone's going to have a few side-effects, no one will have all,
and your returns are far greater than what problems you may experience
from side-effects.
Personally for me the worst drug is Prednisone. The weight gain is
astonishing! I used to be so slim, now I have gained kilos of weight
and have a moon face. You also have to learn to deal with the
side-effect of being more...temperamental, I guess is a good word for
what Prednisone does. I eventually learned to control is for the most
part.
Just so you know, bananas do not cause kidney failure. They will
however cause a spike in potassium when kidneys have failed, which can
be dangerous to your heart.
| |
| Judanne 2005-08-26, 8:57 am |
| Hi Pete,
I agree with what you're saying about most on dialysis having other organs.
My specialist once told me that for most people he starts on dialysis are at
the end of their lives, anyway, and that the kidneys are the last of their
organs to go, so dialysis for them ends up being almost palliative care.
But, I'm guessing that Katie is quite young. I was only 27 when I first
started dialysis and had my first transplant which was cadaveric. That
lasted 20 years and I had no major side effects at all from the meds.
I've just had my second transplant, 3 months ago, from a non-related living
donor and at 52 its a different story. I've just developed diabetes caused
by the immunosuppresive drugs and the high sugar levels mean that I keep
getting recurring urine infections. Even so, I'm much happier dealing with
the side effects than having so much of my time centred around the renal
unit and dialysis. I have the opportunity to go back to Uni full time next
year which I wouldn't have considered while on dialysis. The study year
here starts in February and hopefully by then the balance of meds will be
sorted out and I'll have my sugars under control.
Katie, if you want to you can send me an email privately and I can talk to
you about the emotional side effects of accepting a living donor. It sounds
easy, but for me and my donor it was a difficult time.
Judanne
"Pete" <nospam@hotmail.com> wrote in message
news:wzqFe.3042$q23.509576@news20.bellglobal.com...
>
>
>
> Hi Katie,
>
> Sorry to hear you're on dialysis now, but, you certainly aren't alone in
> that respect. I've been on it for 3 years. I remain on the waiting list,
> after one relative was eliminated after a surgery date was already set,
> and also after I came close 2 years ago when they admitted me to the
> transplant floor as a very likely backup recipient. Fortunately for the
> guy ahead of me, and unfortunately for me, the other guy did pass the
> crossmatching after all, even though the odds were 80% against it. That's
> the way it goes sometimes, so, I'm still waiting. In the meantime, I've
> taken steps to improve my life on dialysis by first looking into home
> dialysis (both peritoneal and hemodialysis), and since I was already on
> hemodialysis anyway, and home hemodialysis is available where I live, I
> chose to switch to daily nocturnal hemodialysis, which I do myself at
> home.
>
> Three years into the waiting list, I still have the same concerns as you
> do about transplants. I think we pretty much all do. We are going from the
> known situation of dialysis (known because we are on it and doing
> reasonably-well even if it's very inconvenient and trying at times), to
> the unknowns of a transplant. But there is little doubt that quality of
> life is much better with a kidney transplant. Daily nocturnal hemodialysis
> has been a godsend to me, as except for having to actually do the dialysis
> 5 or 6 nights per week, I have pretty good quality of life healthwise. I
> can pretty much eat and drink anything I want (sometimes I even have
> trouble eating or drinking enough!), and I have much more energy. Other
> problems like restless legs and sexuality have greatly improved.
>
> But, I will still be happy to get a transplant when it comes. I mean, no
> matter how good the actual dialysis is, it's still being tied to part-time
> life support.
>
> I can understand your feelings re depriving your husband of one of his
> kidneys. These are issues that can't really be addressed adequately in a
> forum. You really have to openly discuss these concerns with your
> transplant team. The social worker is probably the one you will want to
> see for this. You may not already have had your interview with the social
> worker at this point, I don't know. As Larry already said, you can simply
> decide to go on the waiting list. With the waiting list, many factors come
> into play besides your position on the list. There is your antigen profile
> (which if it's low, as it probably is, greatly increases your chances of
> slipping in ahead of other people who won't pass the crossmatching when a
> kidney becomes available), the size of the kidney, the urgency of the
> need, etc. Plus, children always have priority if the kidney matches and
> is of the right size. Because of that, it's impossible for even your
> transplant team experts to give you anything but the average waiting time
> for your blood type. Once you're active on the list, you could wait years,
> or you could get a kidney in short order. It happens all the time. But of
> course, a live related donor kidney will definitely be better than one
> from the waiting list, if only because waiting list kidneys have already
> been on ice for hours before you get it. Live related donor or straight to
> the waiting list, it's a decision only you can make (and the donor, of
> course), but it's hard to make that decision in a vacuum, so tell the
> transplant coordinator you need to discuss these issues with someone. They
> know these concerns very well.
>
> There's more to a potential donor being accepted than just matching. They
> also look very extensively for any other health issues that might come
> into play. It's all very stressful, because a potential donor evaluation
> can often take months, and even after it's done, every donor has the
> opportunity to change his or her mind, and you will never know this
> happened. On the other hand, the waiting list is stressful too, because,
> you are waiting for a call that might come in the next minute as easily as
> it could only come 4 years from now.
>
> All I can do is to wish you good luck.
>
> By the way, don't worry too much about statistics regarding dialysis.
> These are horribly distorted due to the fact that many people are already
> very sick in other ways by the time they start dialysis. There's no reason
> an otherwise healthy person who follows the dietary requirements and who
> stays active and fit can't live on dialysis almost indefinitely. But, a
> transplant is still the better treatment for most people.
>
> Pierre
>
>
>
| |
| Judanne 2005-08-26, 8:57 am |
| For more info from people who have had transplants (of all kinds) you could
have a look at the bit.listserv.transplant group, too. Be aware, though,
that though they tend to post a lot of problems re post transplant problems
you are only seeing the tip of the iceberg and most people after
transplantation do very well.
Judanne
"Katie" <katie.field@rmit.edu.au> wrote in message
news:1123114247.431434.106670@g47g2000cwa.googlegroups.com...
> Hi everyone,
>
> Thanks for sharing your experiences. I've got myself into such a stress
> about this that nothing will ease my mind completely, but hearing from
> other people who've had transplants does help a lot.
>
> We've found out this week that my husband is a fairly good match (we
> had a negative crossmatch and acceptable tissue typing) so it looks set
> to happen in November. I'm trying to be more positive about it - we're
> even planning a big pre-transplant party so we've got something to plan
> as a distraction from the worry.
>
> One thing I am excited about is eating bananas again! Banana fritters
> are yum! Maybe they'll be enough of a compensation for being a young
> girl and growing a beard!
>
> Thanks again,
>
> Katie
>
| |
| Judanne 2005-08-26, 8:57 am |
| I agree. After my experiences with Prednisolone over the last 20 years,
this time I bought myself an epilator. Once I got over the shock at the
speed of the thing, I think its great and the regrowth on the face looks
MUCH better than the regrowth after shaving it, or the redness from using
chemical epilators.
Judanne
"Spot" <NoSpamMe@verizon.net> wrote in message
news:zHdIe.5635$b91.1799@trndny06...
> Katie,
>
> The excess hair growth does go away after your medications are tapered off
> and things stabilize. And like I've told everyone I know you can trim
> down
> the hair on your arms with a cheap pair of hair clippers with a 1/4 inch
> attachment get rid of any facial hair either with a razor or tweezers.
> That
> little bit of extra primping is nothing compared to how well you do in the
> long run................
>
> Celeste
>
> "Katie" <katie.field@rmit.edu.au> wrote in message
> news:1123114247.431434.106670@g47g2000cwa.googlegroups.com...
>
>
| |
| Judanne 2005-08-26, 8:57 am |
| Oops! That should read "...other organs in failure."
Judanne
"Judanne" <judanne@bigpond.net.au> wrote in message
news:OuwPe.10773$FA3.4191@news-server.bigpond.net.au...
> Hi Pete,
>
> I agree with what you're saying about most on dialysis having other
> organs. My
| |
| Judanne 2005-08-26, 8:57 am |
|
"Judanne" <judanne@bigpond.net.au> wrote in message
news:OuwPe.10773$FA3.4191@news-server.bigpond.net.au...
>
> Katie, if you want to you can send me an email privately and I can talk to
> you about the emotional side effects of accepting a living donor. It
> sounds easy, but for me and my donor it was a difficult time.
The following may be of interest, too.
Transplant patients' donor unease
* People receiving kidneys from living donors have concerns that the donors
really want to go ahead with the procedure. *
A study of 11 pairs of donors and recipients found none of the donors
had any concerns about the procedure. But recipients, all of whom were
either relations or partners of the donors, wanted to talk things through
first.
However, the Cardiff university researchers found both parties were
positive about the experience following the transplant.
* It is quite common for the recipient to perhaps feel some guilt or
concern about their relative's health *
In all the cases studied, all the donors decided instantly to go ahead.
Every one said they were donating to restore the health of the recipient.
Those who were husbands and wives said they were also keen to be able to
have a normal life together.
* Actions 'downplayed' *
But Paul Gill, from the University's School of Nursing, said:
"Recipients originally showed caution because they were concerned for
their donor's health. They only agreed to accept after establishing that it
was something the donor genuinely wanted to do."
After the transplant, both parties felt very positive. Donors generally
made a good recovery and were back at work within 10 to 12 weeks. They also
tended to downplay what they had done, making statements like "it was
nothing special", or "anyone would have done the same".
Mr Gill said: "Recipients reported that their lives had been transformed
by the transplant, experiencing significant improvements in their general
health and ability to do things they hadn't been able to do in years, such
as exercising, driving and holidaying abroad. And donors subsequently felt
an immense sense of personal satisfaction from donating."
The findings will be presented to the British Sociological Association's
Medical Sociology Group annual conference in September at the University
of York.
* 'Most operations successful' *
Caroline Rijnenberg, who received a kidney from her husband Ian, urged
people not to be afraid of a living transplant. "It's been such a positive
thing for both of us from the day Ian decided to do it." A spokeswoman for
the National Kidney Research Fund said: "Due to the massive shortage of
organ donors, many people find that an organ from a living donor represents
their best hope of getting a transplant. In most cases, living donor
transplants are between close relatives such as parent and child or between
siblings and it's only natural that both parties may want to talk it
through." She added: "With many kidney patients facing years on the
transplant waiting list, relatives are often desperate to help by
volunteering to donate one of their kidneys. It is quite common for the
recipient to perhaps feel some guilt or concern about their relatives'
health because it is an incredibly kind gesture. Happily though, around 93%
of living donor operations are successful, and both patients usually recover
quickly".
Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/...lth/4685897.stm
Published: 2005/07/16 23:11:28 GMT
© BBC MMV
| |
|
| Congratulations on your second transplant, Judanne. You're the same age I
am.
Pete
"Judanne" <judanne@bigpond.net.au> wrote in message
news:OuwPe.10773$FA3.4191@news-server.bigpond.net.au...
> Hi Pete,
>
> I agree with what you're saying about most on dialysis having other
> organs. My specialist once told me that for most people he starts on
> dialysis are at the end of their lives, anyway, and that the kidneys are
> the last of their organs to go, so dialysis for them ends up being almost
> palliative care.
>
> But, I'm guessing that Katie is quite young. I was only 27 when I first
> started dialysis and had my first transplant which was cadaveric. That
> lasted 20 years and I had no major side effects at all from the meds.
>
> I've just had my second transplant, 3 months ago, from a non-related
> living donor and at 52 its a different story. I've just developed
> diabetes caused by the immunosuppresive drugs and the high sugar levels
> mean that I keep getting recurring urine infections. Even so, I'm much
> happier dealing with the side effects than having so much of my time
> centred around the renal unit and dialysis. I have the opportunity to go
> back to Uni full time next year which I wouldn't have considered while on
> dialysis. The study year here starts in February and hopefully by then
> the balance of meds will be sorted out and I'll have my sugars under
> control.
>
> Katie, if you want to you can send me an email privately and I can talk to
> you about the emotional side effects of accepting a living donor. It
> sounds easy, but for me and my donor it was a difficult time.
>
> Judanne
>
>
> "Pete" <nospam@hotmail.com> wrote in message
> news:wzqFe.3042$q23.509576@news20.bellglobal.com...
>
>
| |
| Peter McLeod 2005-08-26, 10:54 pm |
| In article <OuwPe.10773$FA3.4191@news-server.bigpond.net.au>,
judanne@bigpond.net.au (Judanne) wrote:
> *Subject:* Re: Uncertain about transplant
> *From:* "Judanne" <judanne@bigpond.net.au>
> *Date:* Fri, 26 Aug 2005 04:01:50 GMT
> I've just developed
> diabetes caused by the immunosuppresive drugs and the high sugar
levels
> mean that I keep getting recurring urine infections. Even so, I'm
much
> happier dealing with the side effects than having so much of my time
A good way of avoiding urinary infections is to take daily Cranberry
juice, supposed to stop the blighters getting a grip
>
Pete Mc
| |
| Judanne 2005-09-24, 2:41 pm |
| Thanks, Pete,
I'll need to check that out with the diabetes dietician first, though. I'm
seeing her tomorrow.
Judanne
"Peter McLeod" <pete@nospam.please> wrote in message
news:memo.20050827024016.2580A@Administrator.cix.co.uk...
> In article <OuwPe.10773$FA3.4191@news-server.bigpond.net.au>,
> judanne@bigpond.net.au (Judanne) wrote:
>
> levels
> much
>
> A good way of avoiding urinary infections is to take daily Cranberry
> juice, supposed to stop the blighters getting a grip
>
>
> Pete Mc
| |
| Larry Krzewinski 2005-09-24, 2:41 pm |
| On Wed, 31 Aug 2005 05:04:05 GMT, "Judanne" <judanne@bigpond.net.au>
wrote:
>Thanks, Pete,
>
>I'll need to check that out with the diabetes dietician first, though. I'm
>seeing her tomorrow.
>
>Judanne
If you're a diabetic, Judanne, all juices are a no-no. Most have such
a high glucose load that they really produce an immediate insulin
spike and that is bad news for diabetics.
Larry
| |
| Peter McLeod 2005-09-24, 2:41 pm |
| In article <ffvfh15bj1360dqriuguut48lk9pvshmec@4ax.com>,
Feerless_Freep@madmagazine.com (Larry Krzewinski) wrote:
>
> If you're a diabetic, Judanne, all juices are a no-no. Most have such
> a high glucose load that they really produce an immediate insulin
> spike and that is bad news for diabetics.
>
> Larry
>
Our local Morrisons supermarket do a cranberry juice light which has
3.7g of carbohydrate of which sugars are trace per serving
Pete Mc
| |
| Judanne 2005-09-24, 2:41 pm |
| Thanks Larry,
I'm only just now getting to grips with diabetes but find that it takes MUCH
more out of my life than renal failure ever did. If you have a look at a
later post about UTI's and Cranberry juice, one of the posters says that you
can buy cranberry pills or pelletts from the whole food or pharmacy. Maybe
I'll give that a go. Just started on insulin on Friday so things are not
improving yet.
Judanne
"Larry Krzewinski" <Feerless_Freep@madmagazine.com> wrote in message
news:ffvfh15bj1360dqriuguut48lk9pvshmec@4ax.com...
> On Wed, 31 Aug 2005 05:04:05 GMT, "Judanne" <judanne@bigpond.net.au>
> wrote:
>
>
> If you're a diabetic, Judanne, all juices are a no-no. Most have such
> a high glucose load that they really produce an immediate insulin
> spike and that is bad news for diabetics.
>
> Larry
|
| |
|
|