Re: Back to the drawing board

June 8, 2003

Pierre,

First of all, Happy birthday! I just hope i can even make it to that

age

Sorry to hear about the transplant-but I'm sure you will get another

donor..You are in my prayers

God Bless-

> 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.

>

June 8, 2003

Dear Betsy,

I like what you said about turning 50! I will remember that! Also, I'm

glad your son got to see the neph he liked. That's so important.

Hopefully you can see him/her each time. Glad he's off of Norvasc.

From what I have heard, Norvasc can actually increase proteinuria.

There are other calcium channel blockers that improve proteinuria though.

Take care and my best to your son,

Rotghi

Betsy Cabell wrote:

> Pierre,

> Happy Birthday! (ah, to be 50 againS() Actually I found turning 50 to

> be very

> liberating. Anything I didn¹t want to do, I could say I shouldn¹t have

> to do

> that because I¹m 50. And anything I did want to do, I could say I

> should be

> able to do that because I¹m 50.

>

> Sorry to hear about your donor problem. I know they are extremely thorough

> in evaluating donors. I remember being so worried they would find

> something

> wrong with me that would keep me from donating to my son. By the way, he¹s

> doing a bit better. Fluid retention has decreased which certainly

> makes him

> feel better. Last week he had an intermittent low grade fever and diarrhea

> (which seemed to help with getting rid of fluid, actually), and when

> he went

> in for his clinic appointment, he got to see the neph he particularly

> likes

> who was willing to spend a lot of time discussing treatment options and

> reviewing all his meds (prescribed by several different docs in

> hospital and

> in clinic). As a result, he is now off Norvasc and back on Lisinopril and

> will probably get another round of Cytoxan on Wednesday if lab tests

> show no

> evidence of any current infection. So we keep our fingers crossedS(

>

> Betsy

>

June 8, 2003

Pierre,

Happy Birthday! (ah, to be 50 againŠ) Actually I found turning 50 to be very

liberating. Anything I didn¹t want to do, I could say I shouldn¹t have to do

that because I¹m 50. And anything I did want to do, I could say I should be

able to do that because I¹m 50.

Sorry to hear about your donor problem. I know they are extremely thorough

in evaluating donors. I remember being so worried they would find something

wrong with me that would keep me from donating to my son. By the way, he¹s

doing a bit better. Fluid retention has decreased which certainly makes him

feel better. Last week he had an intermittent low grade fever and diarrhea

(which seemed to help with getting rid of fluid, actually), and when he went

in for his clinic appointment, he got to see the neph he particularly likes

who was willing to spend a lot of time discussing treatment options and

reviewing all his meds (prescribed by several different docs in hospital and

in clinic). As a result, he is now off Norvasc and back on Lisinopril and

will probably get another round of Cytoxan on Wednesday if lab tests show no

evidence of any current infection. So we keep our fingers crossedŠ

Betsy

June 8, 2003

---

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.

June 8, 2003

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

June 8, 2003

Oh, Pierre,

I can say for sure that I know what you are going through. The rejection of

a potential doner is such a hard thing to go through. I cannot tell you how

very sorry I am that you recieved that news. And yes, there are so many

things that can stop a potential doner from giving a kidney. Keep that

faith though, you will be suprised what will happen. My husband keeps

telling me that it will work out. Hpoefully it will for you. Oh, and 50?

Man it is great!!!

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

>

June 9, 2003

Pierre,

Your experience and 's are a sharp reminder to all of us about what

miraculous thing live donor transplants are. There is nothing in this messy

business that can be taken too much for granted...

In our house we're celebrating, so we've thrown your birthday into the pile

of reasons to raise a glass.

You'll never be nixeds from our...

highest esteem

Cy and

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

>

June 11, 2003

Hi Betsy,

Hopefully will continue to stay stabile. Hopefully will be able to

maintain that 35 GFR.

Quote from Betsy

" Statistically, IgAN is less likely to reoccur in a cadaveric kidney "

It's really strange but my Neph told me that IgAN is MORE likely to reoccur

in a cadaveric kidney. When I asked him why that was, he told me that it

was because of the emotional connection that you have with the living donor

verses a stranger. That people tend to protect the new kidney since they

know the donor, patients tend to do the right things, like taking their

meds, etc. Anyone really have any stats out there on this topic? Not that

I'm doubting you at all, but now you have me interested...

Connie

Co-Moderator, USA

Re: Re: Back to the drawing board

Pierre,

Just to throw a new thought into this transplant discussion, I wanted to

mention that my son¹s neph told us that when he needs a new transplant, they

would want to use a cadaveric kidney even if there were another living donor

available. Statistically, IgAN is less likely to reccur in a cadaveric

kidney, and since his reccurance has been more aggressive than expected,

they would want to take that precaution. And the next time, he¹ll go on the

list just as soon as he gets to 20%, instead of waiting and saying he really

didn¹t feel that bad, etc. like he did before. Now he knows.

is doing better now and will get another round of Cytoxan today (lower

dose and taking him off Rapamune for a week or so). For whatever reason, he

lost quite a lot of the water weight last week. He¹s still a bit puffy with

edema but not nearly as bad as before. Last 24 hr. urine collection showed

GFR of 35 not great but manageable. So we are hopeful the continued

treatment will at least stabilize things or even better, actually improve

kidney function.

Betsy

> Hi Connie.

>

> I don't think that plan would work in practice. There are a great many

> aspects to matching a donor and a recipient. There's a lot more to it than

> just blood type. The idea behind putting the recipient on hold from the

> waiting list is that the live donor kidney would be much better than a

> cadaveric one. They last longer, and require less medication. That seems

> reasonable to me, and I wouldn't mind that, if the evaluation was done

more

> quickly. This is one area where you guys in the U.S. have it better than

us.

> Here, we don't really have actual transplant centres, just hospitals that

> happen to do kidney transplants, and the resources are shared with every

> other department. That means waits are sometimes necessary for things like

> CT scans. My own evaluation went pretty quickly though. It was mostly done

> within a couple of days - but it took a while to get to that point after

the

> referral. What took longer was things like appointments with the social

> worker and the transplant surgeon. The Christmas holiday season added to

it

> too.

>

> A nuclear scan is just a scan that's done after injection of a special

> radioactive dye. It's to map out the blood vessels that supply the

kidneys,

> and it's the very last procedure in the donor evaluation. In my donor's

> case, they found he had what they call " complex arteries " . It's not a

> medical problem for the donor in normal life, but it makes removal of the

> kidney too risky for the donor. Plus, even if they went ahead with it

> anyway, it would be impossible to connect up the kidney in the recipient

so

> as to give it the same kind of blood supply - so it would have a high risk

> of failure.

>

> I had some pancreatitis before my evaluation. I'm not sure why they

suddenly

> decided that it is an issue to look at now. If it were severe enough, it

> could be a showstopper. A severe, acute pancreatitis apparently can be a

> serious thing in a transplant patient. However, I've never had

pancreatitis

> that bad, and I know my gastro-enterologist already cleared me this past

> November. It's a little upsetting, but I guess they just want to cover all

> the bases.

>

> We can see now that getting a transplant from a live donor is not as easy

as

> it sounds. We've seen many people in this group have a number of potential

> donors turned down. Some also decide not to go ahead with it once they

have

> the risks explained to them (which is done early in the evaluation

process).

> Some don't get past the social worker and/or psychiatrist. Donating a

kidney

> is not without significant risk, and they make sure the donation is being

> done for the right reasons.

>

> There are also some dialysis patients who choose not to be on the waiting

> list at all. I know some personally. They would rather just stay on

dialysis

> rather than take the risks that come with a transplant (increased risk of

> cancer, prednisone for life, etc.).

>

> Pierre

June 11, 2003

Thanks for citing those articles Betsy! I would be very curious about you

and 's A2 status.

This is very intrusting to me.

June 11, 2003

Oops, I mean that to be it is very INTERESTING to me not intrusting!

June 11, 2003

Betsy,

What a great idea to write that letter to ! I frequently write letters

to my loved ones as it is hard to say in person what I'm really trying to say.

When you said you would've done it anyway evening knowing the future, that is

wonderful.

I just really enjoyed your post. Thanks!

Dana

In a message dated 6/11/03 6:24:12 PM Central Daylight Time, bcabell@...

writes:

<< To Pierre and others contemplating transplantation -

For whatever it¹s worth, I would like for you all to know that as a donor I

truly have no regrets. Even now when IgAN has reared its ugly head again and

the transplant may not last as long as we had hoped, I still have no

regrets. I don¹t miss the kidney at all, meaning I can¹t tell any difference

functionally. Now if it had failed right away or soon after the transplant,

I¹ll admit that would have been depressing, mostly because it would have

been so disappointing, and I might have felt like it was somehow my fault.

And I know worried about that too. I wrote him a letter and gave it to

him the night before the surgery saying basically, the kidney is yours,

given freely and with love, hope it works well but don¹t feel bad no matter

what happens. The great pleasure I have gotten seeing how well he has done

since the transplant made it all worth while, no matter what happens in the

future. His transplant nephrologist felt so bad telling us that the IgAN was

back, but I told him I would have done it anyway even if I¹d known what was

ahead.

Good luck with getting a cadaveric kidney. There are advantages there too.

Your relative or friend doesn¹t get the joy of giving, but the family of the

donor often feels great comfort in knowing some good came from their tragedy

and their loved one ³lives on² in a sense. I believe that would be very

comforting to me.

Betsy >>

June 11, 2003

To Pierre and others contemplating transplantation -