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Home > Archive > Kidney Failure > August 2006 > Need live donor information
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Need live donor information
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| maxell 2006-07-31, 2:24 am |
| Situation:
Family member nearing the need for dialysis.
I want to and may be in a position to donate, however have been denied for
medical reasons. 6 years ago I was diagnosed as diabetic. Since that time
I've maintained very tight BG control mostly through diet and exercise. I
take blood pressure medication which works. I am in good shape. I am a blood
type match but have thus far been denied further testing. I have an
appointment with my GP who's said she would 'back me' in my efforts but I'm
not sure what that means. I wonder whether anyone here has any advice for
someone in my predicament.
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| It's highly unlikely that any transplant center will allow you to donate
regardless of your BG control since on of the leading causes of kidney
failure is diabetes. My sister is a perfect match for me but due to the
fact that diabetes runs in my family on both sides and everyone comes down
with it they will not allow her to donate. Not only that but I don't feel
right accepting knowing that in 20 years it may be her in my situation.
Celeste
"maxell" <2hd@hotmail.com> wrote in message
news:aMSdnYzBvb-o5VDZnZ2dnUVZ_sednZ2d@giganews.com...
> Situation:
> Family member nearing the need for dialysis.
> I want to and may be in a position to donate, however have been denied
> for medical reasons. 6 years ago I was diagnosed as diabetic. Since that
> time I've maintained very tight BG control mostly through diet and
> exercise. I take blood pressure medication which works. I am in good
> shape. I am a blood type match but have thus far been denied further
> testing. I have an appointment with my GP who's said she would 'back me'
> in my efforts but I'm not sure what that means. I wonder whether anyone
> here has any advice for someone in my predicament.
>
>
>
>
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| maxell 2006-07-31, 9:25 pm |
| Spot wrote:
> It's highly unlikely that any transplant center will allow you to
> donate regardless of your BG control since on of the leading causes
> of kidney failure is diabetes. My sister is a perfect match for me
> but due to the fact that diabetes runs in my family on both sides and
> everyone comes down with it they will not allow her to donate. Not
> only that but I don't feel right accepting knowing that in 20 years
> it may be her in my situation.
> Celeste
I was hoping to find some news here. Unfortunately, the medical community is
woefully and inexcusably ignorant about this issue. When I said tight BG
control, that's what I meant. That means I'll have no diabetes caused kidney
complications as long as I continue as I have. Since uncontrolled diabetes
caused effects are far from pleasant, I for one, am powerfully motivated to
prevent them. Your sister and any other members your family can do the same.
There's no magic which doesn't equate to no work.
| |
|
| News flash In some cases you can get diabetes as a direct result from taking
some medications and regardless of how well you control your blood glucose
it can and does happen. That is exactly what happened in my case and it
happens for many other transplant patients and others that are not even
transplant patients. It has nothing to do with not being in control and
sometimes no matter how much you try it can't be avoided in some cases.
As for the medical community being woefully and inexcusably ignorant about
this issue. I highly doubt it that is the case. Yes you are fortunate now
that you are somewhat OK but that can all change in 5, 10, or 20 years and
like I said sometimes there is nothing you can do to stop it. They are
looking out not only for your welfare but for that of whomever you want to
donate to. Everything that is wrong with your kidney now will be passed on
along with it when transplanted this means even the littlest damage from
your sugar now will have a direct impact on the kidney and the recipient.
It will impact if the kidney even works after transplant, for how long many
years it will function and at what level. Will it work 100% to start with
or maybe only %90 like mine did and that was after sleeping for 10 days.
My transplant came from a healthy 17 year old and it never really worked a
100% we found out why 6 years after transplant when my function started
dropping drastically. It turned out that healthy kidney from the 17 year
old harbored a kidney disease that they couldn't test for and it started
destroying the kidney 6 years later just about the time it would have
manifested itself in the donor. So you see there are many things that are
unknown and they are just trying to control the things they can to give the
recipient the best possible outcome in the long run.
Yes I wish I could have gotten more time but I got almost 10 good years.
I'm not upset that the disease that is destroying my transplant came with
the kidney it's something that couldn't be predicted. I received a call in
February for another transplant but the surgeon turned the kidney down due
to the donor having diabetes. Yes he might have been able to transplant it
but I wouldn't want to be the one getting it not knowing if it might last 2
or 3 years compared to the 9 I got out of my last one. I would rather wait
a while longer for a healthier one.
Celeste
You may think it is perfectly OK because you have good blood glucose control
but in fact there is already some damage d
"maxell" <2hd@hotmail.com> wrote in message
news:gfKdnWJey_ITNVPZnZ2dnUVZ_t6dnZ2d@giganews.com...
> Spot wrote:
>
> I was hoping to find some news here. Unfortunately, the medical community
> is woefully and inexcusably ignorant about this issue. When I said tight
> BG control, that's what I meant. That means I'll have no diabetes caused
> kidney complications as long as I continue as I have. Since uncontrolled
> diabetes caused effects are far from pleasant, I for one, am powerfully
> motivated to prevent them. Your sister and any other members your family
> can do the same. There's no magic which doesn't equate to no work.
>
| |
| Larry Krzewinski 2006-08-01, 2:29 am |
| On Tue, 01 Aug 2006 02:20:51 GMT, "Spot" <noSPAMme@somewhere.net>
wrote:
>News flash In some cases you can get diabetes as a direct result from taking
>some medications and regardless of how well you control your blood glucose
>it can and does happen. That is exactly what happened in my case and it
>happens for many other transplant patients and others that are not even
>transplant patients. It has nothing to do with not being in control and
>sometimes no matter how much you try it can't be avoided in some cases.
It happened to me as well. Both I and my doctor predicted it
initially due to the corticosteroids. My doctor thought that it would
disappear within a year after transplant. Five years later I'm still
diabetic.
Larry
| |
|
| In article <gfKdnWJey_ITNVPZnZ2dnUVZ_t6dnZ2d@giganews.com>,
"maxell" <2hd@hotmail.com> wrote:
> Spot wrote:
>
> I was hoping to find some news here. Unfortunately, the medical community is
> woefully and inexcusably ignorant about this issue. When I said tight BG
> control, that's what I meant.
You may need to read up a little more about diabetes. I became diabetic
after a course of steroids six years ago and since then have maintained
an HbA1c of 6% or lower, which is normal for a non-diabetic. Despite
that, my kidney biopsy showed damage from diabetic nephropathy three
years after becoming diabetic (my primary kidney disease is FSGS, which
is why I had the biopsy, and does a different sort of damage to the
kidney than does diabetic nephropathy).
In my case, the *day* I became diabetic is known, but most people are
diabetic (and uncontrolled) for years before being diagnosed. It is
possible you have no kidney damage and never will; it is also equally
possible that you have kidney damage you are unaware of.
Tight control only lessens the risk of disabetic complications; it does
not eliminate the risk.
In addition to the concerns about possible renal complications from the
diabetes, diabetes interferes with the immune system and complicates any
surgery, no matter how minor. Performing major elective surgery (which
is what donating a kidney is) on a diabetic has far more risks than
benefits to the patient having the surgery.
--
"Did Father shoot him? I will eat Grandfather for dinner."
- Helen Keller, on learning of the death of her grandfather
| |
| Judanne 2006-08-01, 8:30 am |
| Hi Maxell,
There is NO history of diabetes in my family yet I got diabetes immediately
after my renal transplant from the steroid therapy (and I had a
non-related-living-donor who was a very good match, also with no family
history of diabetes). If that can happen from a kidney donor with NO
history of diabetes and a recipient with NO history of diabetes, maybe the
chances are higher from a donor with a KNOWN history of diabetes.
The only way you'll know for sure, though, is to ask for an appointment with
the transplant co-ordinator looking after your family member and find out
exactly what the objection to you being a donor is.
Best of luck to both of you.
Judanne
"maxell" <2hd@hotmail.com> wrote in message
news:gfKdnWJey_ITNVPZnZ2dnUVZ_t6dnZ2d@giganews.com...
> Spot wrote:
>
> I was hoping to find some news here. Unfortunately, the medical community
> is woefully and inexcusably ignorant about this issue. When I said tight
> BG control, that's what I meant. That means I'll have no diabetes caused
> kidney complications as long as I continue as I have. Since uncontrolled
> diabetes caused effects are far from pleasant, I for one, am powerfully
> motivated to prevent them. Your sister and any other members your family
> can do the same. There's no magic which doesn't equate to no work.
>
| |
| maxell 2006-08-02, 2:26 am |
| REP wrote:
> In article <gfKdnWJey_ITNVPZnZ2dnUVZ_t6dnZ2d@giganews.com>,
> "maxell" <2hd@hotmail.com> wrote:
>
>
> You may need to read up a little more about diabetes. I became
> diabetic after a course of steroids six years ago and since then have
> maintained an HbA1c of 6% or lower, which is normal for a
> non-diabetic. Despite that, my kidney biopsy showed damage from
> diabetic nephropathy three years after becoming diabetic (my primary
> kidney disease is FSGS, which is why I had the biopsy, and does a
> different sort of damage to the kidney than does diabetic
> nephropathy).
A normal, non-diabetic individual will return an HbA1c test with less than
5%. In fact, an HbA1c of 5% translates to an average BG value of 100.7
which, if repeatedly measured at fast, enlightened doctors will diagnose as
diabetes.
> In my case, the *day* I became diabetic is known, but most people are
> diabetic (and uncontrolled) for years before being diagnosed. It is
> possible you have no kidney damage and never will; it is also equally
> possible that you have kidney damage you are unaware of.
Of course. Minimizing this possibility is what the tests are for.
> Tight control only lessens the risk of disabetic complications; it
> does not eliminate the risk.
This is an opinion. There are so many variables involved that given a long
enough lifespan, nearly everyone will develop one or more diabetic
complications whether or not they've been diagnosed with diabetes.
> In addition to the concerns about possible renal complications from
> the diabetes, diabetes interferes with the immune system and
> complicates any surgery, no matter how minor. Performing major
> elective surgery (which is what donating a kidney is) on a diabetic
> has far more risks than benefits to the patient having the surgery.
From a surgical point of view, the laparoscopic procedure is actually quite
simple. I'd be more interested in carefully interviewing the
anesthesiologist. In any case, I didn't suggest the surgery was of low or no
risk only that it was important.
| |
| maxell 2006-08-02, 2:26 am |
| Judanne wrote:
> Hi Maxell,
>
> There is NO history of diabetes in my family yet I got diabetes
> immediately after my renal transplant from the steroid therapy (and I
> had a non-related-living-donor who was a very good match, also with
> no family history of diabetes). If that can happen from a kidney
> donor with NO history of diabetes and a recipient with NO history of
> diabetes, maybe the chances are higher from a donor with a KNOWN
> history of diabetes.
I'm sorry this happened to you. I understand it's an unpredictable steroid
therapy side-effect.
> The only way you'll know for sure, though, is to ask for an
> appointment with the transplant co-ordinator looking after your
> family member and find out exactly what the objection to you being a
> donor is. Best of luck to both of you.
>
> Judanne
Thnaks, my GP and I will be duking it out with them soon.
| |
|
| In article <br6dnaWaOOXXh03ZnZ2dnUVZ_umdnZ2d@giganews.com>,
"maxell" <2hd@hotmail.com> wrote:
> A normal, non-diabetic individual will return an HbA1c test with less than
> 5%.
That is not correct. Perhaps the lab that does your work uses a
different reference range.
>
> This is an opinion.
No; it is a fact. Ask any endocrinologist.
> There are so many variables involved that given a long
> enough lifespan, nearly everyone will develop one or more diabetic
> complications whether or not they've been diagnosed with diabetes.
Tell me how one can develop diabetic nephropathy without diabetes. I'll
wait. Keep in mind that the disease process of diabetic nephropathy is
distrinct from all other kidney diseases, and is readily differentiated
on biopsy.
>
> From a surgical point of view, the laparoscopic procedure is actually quite
> simple.
No invasive procedure is "simple" in a diabetic. Your nonchalance and
lack of information about this disease is breathtaking.
--
"Did Father shoot him? I will eat Grandfather for dinner."
- Helen Keller, on learning of the death of her grandfather
| |
|
| In article <UMWdnUM5JYgggE3ZnZ2dnUVZ_qSdnZ2d@giganews.com>,
"maxell" <2hd@hotmail.com> wrote:
> Judanne wrote:
>
> I'm sorry this happened to you. I understand it's an unpredictable steroid
> therapy side-effect.
Actually, it's a well-known and common side-effect of steroid therapy;
check the PDR or any reference on presctiption drugs, such as the
patient information sheet.
--
"Did Father shoot him? I will eat Grandfather for dinner."
- Helen Keller, on learning of the death of her grandfather
| |
| maxell 2006-08-02, 4:30 pm |
| REP wrote:
> In article <br6dnaWaOOXXh03ZnZ2dnUVZ_umdnZ2d@giganews.com>,
> "maxell" <2hd@hotmail.com> wrote:
>
>
> That is not correct. Perhaps the lab that does your work uses a
> different reference range.
Actually, what I wrote is correct. The reference is the healthy non-diabetic
population. You can prove it yourself by simply testing a few of your
healthy non-diabetic friends. Be sure to load 'em up on carbs an hour or so
before the test. You won't find any of them testing over 100. You can
estimate their HbA1c using this formula:
Approx HbA1c = (BG + 77.3)/35.6.
>
> No; it is a fact. Ask any endocrinologist.
I'd suggest you obtain 2nd opinions. I find diabetes interested, recently
educated endocrinologists the best. Further, chopping and commenting out of
context makes things difficult for others to follow.
>
> Tell me how one can develop diabetic nephropathy without diabetes.
> I'll wait. Keep in mind that the disease process of diabetic
> nephropathy is distrinct from all other kidney diseases, and is
> readily differentiated on biopsy.
Clearly, diabetic nephropathy isn't the only diabetic complication.
>
> No invasive procedure is "simple" in a diabetic. Your nonchalance and
> lack of information about this disease is breathtaking.
You need to chill.
| |
| maxell 2006-08-02, 4:30 pm |
| REP wrote:
> In article <UMWdnUM5JYgggE3ZnZ2dnUVZ_qSdnZ2d@giganews.com>,
> "maxell" <2hd@hotmail.com> wrote:
>
>
> Actually, it's a well-known and common side-effect of steroid therapy;
> check the PDR or any reference on presctiption drugs, such as the
> patient information sheet.
Nevertheless, unpredictable, as I wrote. You still need to chill.
| |
|
| Developing diabetes after a transplant has nothing to do with family
history of the donor or the recipient. It is a response to the
immunosuppressants, particularly the steroids. I have had 2
transplants. I had steoid induced diabetes with the first, and soon
after I lost the transplant and was tapered off the steroids, the
diabetes went away. 9 years later, when I had the second one, I didn't
develope the diabetes. The 'experts' have not quite figured out why
this happens, but it does happen an awful lot of times. One note. With
the first transplant, I was taking large steroid doses, 50-75 mg per
day. With the second, The most I was on was 20 mg, and only for a few
days after a suspicious immune response.
Now I know somebody will point out that a patient with a family history
of diabetes may very well develop diabetes after having a transplant.
This is true. But true diabetes, Type I or II, is different from
steroid induced diabetes, just as gestational diabetes is. Removal of
the steroids, or in the case of gestational the pregnancy, will almost
always cause the diabetes to disappear, and when it does not, a closer
examination of the patients family will reveal that somebody did in fact
have diabetes, usually in the periferal family members, or maybe several
generations prior. Remember that diabetes was not always diagnosed
well, as late as the 1950's.
I have my suspicions that steroid induced diabetes may be dosage
related, but i doubt if any studies have been done. Also, the dose that
triggers the disease may be different for different patients. Just a
feeling.
Another thing my experience should point out is that just because you
had a certain set of side effects with one transplant, it doesn't mean
you will have the same ones with the next transplant, or that the side
effects will not change from time to time.
As always, if my information is wrong, point it out to me, including
legitimate sources to confirm. My comments are made from my personal
experience, my personal observations, and my educated ability to analyze
the two. I have been either a dialysis or transplant patient for 19
years. I don't claim to know everything, or to have seen everything. I
don't think even a Nephrologist could claim that.
Everybody have a good day
Dave
| |
| Judanne 2006-08-04, 9:28 pm |
| Yeah, maybe, but no-one told me or the other 5 people from my unit who had
transplants around the same time. We all came back with blood sugar
problems, but I'm the only one that I know of who went on to using insulin.
When I mentioned to the counsellors at the diabetic clinic that I had done
an internet search on Prograf side effects and found that diabetes was a
common side effect, they had never heard of it. (Admittedly, until last
year Tasmania only had an average of 1 renal transplant a year, so there
wasn't much of a population to study). And when I told them that the renal
specialists expected the diabetes to go away with the decrease in steroids,
they didn't believe it, either. But that's what has happened.
I still think I should have been notified about the possibility of it. I
was completely ignorant, to such an extent that when I was told that my
blood sugar level was 22 I said, "Oh, is that good?" because everything else
was going so well. It was a shock to find out that 'normal' was between 3.5
and 7!!
Judanne
"REP" <rep@inanna.com> wrote in message
news:SGWzg.367$o27.186@newssvr21.news.prodigy.com...
> In article <UMWdnUM5JYgggE3ZnZ2dnUVZ_qSdnZ2d@giganews.com>,
> "maxell" <2hd@hotmail.com> wrote:
>
>
> Actually, it's a well-known and common side-effect of steroid therapy;
> check the PDR or any reference on presctiption drugs, such as the
> patient information sheet.
>
> --
> "Did Father shoot him? I will eat Grandfather for dinner."
> - Helen Keller, on learning of the death of her grandfather
| |
| Judanne 2006-08-04, 9:28 pm |
| Thanks, Dave, for that clear explanation.
Judanne
"Dave" <Someboby@someplace.com> wrote in message
news:Xns9814156AEC43Somebobysomeplacecom@66.150.105.230...
> Developing diabetes after a transplant has nothing to do with family
> history of the donor or the recipient. It is a response to the
> immunosuppressants, particularly the steroids. I have had 2
> transplants. I had steoid induced diabetes with the first, and soon
> after I lost the transplant and was tapered off the steroids, the
> diabetes went away. 9 years later, when I had the second one, I didn't
> develope the diabetes. The 'experts' have not quite figured out why
> this happens, but it does happen an awful lot of times. One note. With
> the first transplant, I was taking large steroid doses, 50-75 mg per
> day. With the second, The most I was on was 20 mg, and only for a few
> days after a suspicious immune response.
>
> Now I know somebody will point out that a patient with a family history
> of diabetes may very well develop diabetes after having a transplant.
> This is true. But true diabetes, Type I or II, is different from
> steroid induced diabetes, just as gestational diabetes is. Removal of
> the steroids, or in the case of gestational the pregnancy, will almost
> always cause the diabetes to disappear, and when it does not, a closer
> examination of the patients family will reveal that somebody did in fact
> have diabetes, usually in the periferal family members, or maybe several
> generations prior. Remember that diabetes was not always diagnosed
> well, as late as the 1950's.
>
> I have my suspicions that steroid induced diabetes may be dosage
> related, but i doubt if any studies have been done. Also, the dose that
> triggers the disease may be different for different patients. Just a
> feeling.
>
> Another thing my experience should point out is that just because you
> had a certain set of side effects with one transplant, it doesn't mean
> you will have the same ones with the next transplant, or that the side
> effects will not change from time to time.
>
> As always, if my information is wrong, point it out to me, including
> legitimate sources to confirm. My comments are made from my personal
> experience, my personal observations, and my educated ability to analyze
> the two. I have been either a dialysis or transplant patient for 19
> years. I don't claim to know everything, or to have seen everything. I
> don't think even a Nephrologist could claim that.
>
> Everybody have a good day
>
> Dave
| |
|
| In article <44d3fab4$1@quokka.wn.com.au>,
"Judanne" <judanne@westnet.com.au> wrote:
> Yeah, maybe, but no-one told me or the other 5 people from my unit who had
> transplants around the same time.
I was taking steroids for asthma at the time. Maybe here in the US the
patient information requirement is different, but everytime I've been
given steroids, becoming diabetic was listed as possible outcome. There
was no explanation of, say, "if you have a family history that has Tyle
1 and Type 2 diabetes on both sides, maybe you should talk to this
doctor about giving you this high a dose" and I really wish there had
been! Don't let me get started about the little adventure I had becoming
diabetic and how long it took to get treated! Argh! I'll just say this:
within a few days, I was drinking 3 or 4 gallons of water a day, and I
couldn't see fo shit, even with my glasses on. Arrrgh!!!
The only good thing has been is that I rarely ever get prescribed
steroid now (breathing is highly over-rated!) and when I do, it's only
tiny doses for a very short time. I've never liked taking them - they
make me feel awful.
--
"Did Father shoot him? I will eat Grandfather for dinner."
- Helen Keller, on learning of the death of her grandfather
email: aripee at inanna . com
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