RE: Weakness

December 27, 2003

Dear

I am so physically moved by your message, I am sort of at a loss on how

to respond. I am so very sorry to hear about your son, so very sad that

the IGAN has returned, but this can happen I am afraid.

I can understand your frantic search for answers you are doing the

instinctive thing as a mother. I can offer you no advice save to say

can you not talk to your Nephrology team, I see you are based in the UK,

what area? If you are not happy with them you do know that you can ask

your GP to refer you to the best consultants in the UK (usually in

London, University Hospitals, Great Ormond St et al). I have an

excellent team here at the University Hospital in Cambridge if you need

a contact name, give me a private mail address and I will mail you.

Please don't feel you are along , I cant remember if anyone with

children here has/is facing what you are, but I will pray hard for your

son to be well again soon.

Best wishes

Weakness

Hi

My son's live related transplant Sept 96 is now developing IgA and

because my husband could not match up he is now on the transplant

list. He has not started dialysis yet but should very soon. He has

been very very ill. It started with gout in his joints causing great

pain so much so that he was sick. Eventually he had medication for

the gout but that caused him to continue to be sick. He lost 2 stone

(28lbs in weight) in just over 3 weeks. He is now monitored and

visits the hospital almost weekly. He has a terrible weakness that

comes over him (something he had prior to the transplant) but this

time more severely. He has had high potassium levels in the past

causing this weakness. Has anyone else experienced these problems?

Aparently IgA is one of only 3 types of kidney disease that can

reappear in the transplanted kidney. Hopefully the next transplant

will not do so. I feel terrible because it was my kidney - it has

lasted seven and a half years but I wish it had lasted longer. It is

not rejecting just that the IgA is back. Last time there was no

internet and no support group but to be honest I am worse this time

than the first time. I feel in the UK we are not issued with enough

information but on the other hand I am scared of what I might be told

I dont know how to handle it. We've been through this once and I

thought we would never have to again. It all seemed to go wrong when

this time last year he was prescribed Zoroc after 3 months his test

results went wrong. The instructions in the Zoroc carried a warning

that it should not be taken if you were taking Neoral (Cyclosporin.

He has been so unwell over this holiday period I wish there was

something we could do. I've looked on the web to see if a private

transplant was available - on a Canadian website it stated

international transplants were available. When I enquired it would

appear that the $75,000 fee includes the patient/carer being taken

to China for the transplant. I don't like the idea of that and is

out of the question. I guess we are clutching at straws at the

disappontment of my husband not matching up - (again no real

information on this in the UK something to do with the antigens and

me matching with some of my husbands and because our son had

previously had a transplant with my kidney he would reject my

husbands). I am rambling - its the stress of it all - my

apologies. If anyone has any information that would help us get

through this again I would appreciate it as I am not handling things

very well at all. Thanks for listening.

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Thank you

_____

December 27, 2003

Sorry to hear that .

While we wish it wouldn't happen to anybody, it does happen.

No wonder he feels weak if he lost 28 lbs in two weeks. I hope he is eating

enough protein and calories. In consultation with his medical team, he

should probably eat more rather than less (whatever meat allowance he

currently has, plus the necessary amount of calories), while avoiding high

potassium foods. I know from my own experience when I approached the need

for dialysis that he probably doesn't have much of an appetite, and

perfectly normal foods may even taste bad, but he doesn't want to get

malnourished, that's for sure. You can't rely on feeling any symptoms when

it comes to potassium. Both high and low potassium can cause a feeling of

weakness. Were you given any guidance on this? Was there any suggestion of

protein powder? I would think they would take that amount of weight loss

very seriously.

Seven and a half years off dialysis is quite a gift in itself. Many people's

transplants don't last that long even without recurring IgAN. This is so

unpredictable. I know a person who had a transplant more than 15 years ago

(not IgAN though), takes very little care of himself, drinks like a fish (if

fish drank beer), and he's still going strong.

If it has to be, I hope he can get on the transplant waiting list and get

another one before too long. I also know a younger man on dialysis who has

had 3 transplants, all of which failed after a short while. Transplants just

aren't a permanent treatment, even though we all hope they will last a long

time.

I know this message probably won't be of much help or comfort to you in

dealing with a very disappointing situation, but we're here to help as much

as we can, even if it's just to listen (well, read, anyway).

Pierre

Weakness

> Hi

>

> My son's live related transplant Sept 96 is now developing IgA and

> because my husband could not match up he is now on the transplant

> list. He has not started dialysis yet but should very soon. He has

> been very very ill. It started with gout in his joints causing great

> pain so much so that he was sick. Eventually he had medication for

> the gout but that caused him to continue to be sick. He lost 2 stone

> (28lbs in weight) in just over 3 weeks. He is now monitored and

> visits the hospital almost weekly. He has a terrible weakness that

> comes over him (something he had prior to the transplant) but this

> time more severely. He has had high potassium levels in the past

> causing this weakness. Has anyone else experienced these problems?

> Aparently IgA is one of only 3 types of kidney disease that can

> reappear in the transplanted kidney. Hopefully the next transplant

> will not do so. I feel terrible because it was my kidney - it has

> lasted seven and a half years but I wish it had lasted longer. It is

> not rejecting just that the IgA is back. Last time there was no

> internet and no support group but to be honest I am worse this time

> than the first time. I feel in the UK we are not issued with enough

> information but on the other hand I am scared of what I might be told

> I dont know how to handle it. We've been through this once and I

> thought we would never have to again. It all seemed to go wrong when

> this time last year he was prescribed Zoroc after 3 months his test

> results went wrong. The instructions in the Zoroc carried a warning

> that it should not be taken if you were taking Neoral (Cyclosporin.

> He has been so unwell over this holiday period I wish there was

> something we could do. I've looked on the web to see if a private

> transplant was available - on a Canadian website it stated

> international transplants were available. When I enquired it would

> appear that the $75,000 fee includes the patient/carer being taken

> to China for the transplant. I don't like the idea of that and is

> out of the question. I guess we are clutching at straws at the

> disappontment of my husband not matching up - (again no real

> information on this in the UK something to do with the antigens and

> me matching with some of my husbands and because our son had

> previously had a transplant with my kidney he would reject my

> husbands). I am rambling - its the stress of it all - my

> apologies. If anyone has any information that would help us get

> through this again I would appreciate it as I am not handling things

> very well at all. Thanks for listening.

>

December 27, 2003

,

I can certainly relate to your situation. I donated a kidney to my son in

2001, and he did remarkably well with no rejection episodes at all, very

manageable side effects from the meds, etc., until last March/April when it

was discovered that he had a toxic reaction to Prograf which may have been

what allowed the IgAN to flare up (or maybe it would have anyway). That

combination plus a very nasty reaction to Cellcept, which he started as a

substitute for Prograf, put him in the hospital for 9 days with nephrotic

syndrome. Kidney function dropped to 20%, and there was talk of putting him

on the transplant list again. I felt so bad about my kidney not lasting very

long for him, and there was no one else in the immediate family with the

right blood type. However, his nephrologist told us that when IgAN flares

up, it¹s actually better to get a cadaveric or unrelated kidney the next

time as the IgAN is somewhat less likely to recur then. However, things have

improved considerably since then. He received monthly infusions of Cytoxan

for its powerful immunosuppressant qualities for 6 months, along with

Prednisone, tapered from IV ³blasts² while he was in the hospital to 60 mg.

orally now down to 20 mg. Currently his serum creatinine varies around 2.2

2.5 and seems stable with about 40% kidney function, which is livable, and

he feels so much better. We feel very blessed when we think back to how sick

he was last spring, but we know it could flare up again.

I am sorry your son is so sick and hope dialysis will perk him up and that

another kidney becomes available before too long.

Betsy