Re: My worst fears have happened

[Guest guest]

Hi Jerry,

I am just so sorry to hear about IgA deposits in your new kidney. I can't

even begin to imagine how devastating that must be. My heart goes out to

you.

I am still on my own kidneys and not yet to dialysis, so I can't say I have

been where you are, but still wanted to say that you have come to the right

place for support and understanding as well as for encouragement.

You are in my prayers.

[Guest guest]

Jerry,

I am so sorry to hear what you are going through now. You have been through

so much already, and you are so stoic and brave about it, still, this latest

development must have been quite a downer. I did read in some research

journal articles, that although transplants in IgAN patients were

successful, the kidneys eventually were damaged by IgA deposits. Even after

the transplant IgA continued to be produced by the immune system, as the

underlying cause that triggered its production could not be identified or

resolved. You seem to have an aggressive form of IgA, to have gone from

microhematuria to renal failure within a year of being diagnosed IgAN, and

from transplant to a compromised kidney in 3 years. I think you and your

doctor already are doing your best in prolonging the life of the kidney, did

the doctor give you any do's and don'ts on your diet, exercise etc? That

might delay the need for dialysis a little.

Take care,

grace

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[Guest guest]

Re: My worst fears have happened

> Jerry,

> I am so sorry to hear what you are going through now. You have been

through

> so much already, and you are so stoic and brave about it, still, this

latest

> development must have been quite a downer. I did read in some research

> journal articles, that although transplants in IgAN patients were

> successful, the kidneys eventually were damaged by IgA deposits. Even

after

> the transplant IgA continued to be produced by the immune system, as the

> underlying cause that triggered its production could not be identified or

> resolved. You seem to have an aggressive form of IgA, to have gone from

> microhematuria to renal failure within a year of being diagnosed IgAN, and

> from transplant to a compromised kidney in 3 years. I think you and your

> doctor already are doing your best in prolonging the life of the kidney,

did

> the doctor give you any do's and don'ts on your diet, exercise etc? That

> might delay the need for dialysis a little.

> Take care,

> grace

>

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

>

>

>

>

[Guest guest]

It's well-known that IgAN tends to recur to some extent in transplanted

kidneys. This is because the defective IgA-1 molecules are still being

produced by the bone marrow (that's the theory). Most people don't lose the

kidney any faster than other people with transplanted kidneys, but, it does

happen, unfortunately. I guess the only thing to do in a case like yours,

besides managing the anti-rejection drugs, is to treat it the same way IgAN

itself is treated (as it appears your doctor is doing). Did they give you

any kind of prediction? Your serum creatinine looks pretty good. Having IgA

deposits in there doesn't necessarily mean the kidney will fail tomorrow.

Maybe there's hope.

Pierre

My worst fears have happened

> Hello all,

> Let me give you a little background about myself. I'm 35yo male that

> was diagnosed with Igan in May of 1998. I had High BP and micro-

> hematuria for the previous 10 years. In May of 1999 I went into renal

> failure at which time, my brother gave me one of his kidneys that was

> in June of 1999. He is six years younger than me and we were an

> incredible match. I managed to avoid dialysis in that time which

> seemed to be great. I was very sick and my creatine was at 12. The

> kidney worked great for the past three years until I had a to be

> taken to the hospital, when I was passing gross hemituria. My

> creatine has been between 1.2 - 1.6 and just recently steady at 1.2.

> After little stay in the hospital I was scheduled for a biopsy to see

> if the problem was rejection. Last week before the day I was to go on

> vacation before I go back to college full time, I went to the DR to

> get the results he told me that my transplanted kidney was full of

> Igan deposits. Im now taking 3000mg of fish oil and blood pressure

> meds as well as prograf the anti rejection drug. This is all at the

> request of the DR.

>

> I need to talk to someone who has had a transplant and the disease is

> now or putthat kidney into renal failure. Thank you all for listening

> any help would be appreciated. Our first action is to prolong the

> progression as long as possible and this time I will have no choice

> but to go on dialysis and the list.

>

> jerrywar

>

>

>

>

>

[Guest guest]

> It's well-known that IgAN tends to recur to some extent in

transplanted

> kidneys. This is because the defective IgA-1 molecules are still

being

> produced by the bone marrow (that's the theory). Most people don't

lose the

> kidney any faster than other people with transplanted kidneys,

but, it does

> happen, unfortunately. I guess the only thing to do in a case like

yours,

> besides managing the anti-rejection drugs, is to treat it the same

way IgAN

> itself is treated (as it appears your doctor is doing). Did they

give you

> any kind of prediction? Your serum creatinine looks pretty good.

Having IgA

> deposits in there doesn't necessarily mean the kidney will fail

tomorrow.

> Maybe there's hope.

I agree with Pierre. To have IGA deposits in the kidney is what is

to be expected for someone having IGAN, but it does not mean

necesarily that the glomeruli have lost their functionality. What

causes a loss in functionality is scarring and crescents in the

glomeruli but not IGAN deposits themselves. Your Cr of 1.2 is

excellent for a kidney transplant recipient, and your recurrent IGAN

does not necessarily have to give renal failure in the short term.

It has taken many of us more than 20 years to approximate renal

failure, so in a transplanted kidney it may take also other 20 years

or more. My neph told me that one of his patients who lost his renal

function because of IGAN, has had a transplant for 30 years and is

still working. So the outcome for kidney transplant for someone with

IGAN may be as favorable as for others who lost their kidneys

because of other condition.

Hope this helps,

Rita

>

> My worst fears have happened

>

>

> > Hello all,

> > Let me give you a little background about myself. I'm 35yo male

that

> > was diagnosed with Igan in May of 1998. I had High BP and micro-

> > hematuria for the previous 10 years. In May of 1999 I went into

renal

> > failure at which time, my brother gave me one of his kidneys

that was

> > in June of 1999. He is six years younger than me and we were an

> > incredible match. I managed to avoid dialysis in that time which

> > seemed to be great. I was very sick and my creatine was at 12.

The

> > kidney worked great for the past three years until I had a to be

> > taken to the hospital, when I was passing gross hemituria. My

> > creatine has been between 1.2 - 1.6 and just recently steady at

1.2.

> > After little stay in the hospital I was scheduled for a biopsy

to see

> > if the problem was rejection. Last week before the day I was to

go on

> > vacation before I go back to college full time, I went to the DR

to

> > get the results he told me that my transplanted kidney was full

of

> > Igan deposits. Im now taking 3000mg of fish oil and blood

pressure

> > meds as well as prograf the anti rejection drug. This is all at

the

> > request of the DR.

> >

> > I need to talk to someone who has had a transplant and the

disease is

> > now or putthat kidney into renal failure. Thank you all for

listening

> > any help would be appreciated. Our first action is to prolong

the

> > progression as long as possible and this time I will have no

choice

> > but to go on dialysis and the list.

> >

> > jerrywar

> >

> >

> >

> >

> >

[Guest guest]

Hi Jerry,

I too am terribly sorry to hear about the IgAN Deposits in you new kidney.

Please know that you in my prayers and that we are here to support you.

Best Regards,

Re: My worst fears have happened

Hi Jerry,

I am just so sorry to hear about IgA deposits in your new kidney. I can't

even begin to imagine how devastating that must be. My heart goes out to

you.

I am still on my own kidneys and not yet to dialysis, so I can't say I have

been where you are, but still wanted to say that you have come to the right

place for support and understanding as well as for encouragement.

You are in my prayers.

[Guest guest]

hi jerrywar,

what medications did you take after the transplant to prevent

rejection? was the prograf a recent change? Do you have any chronic

infections (e.g. chronic sinusitus, etc.)?

what is your current serum creatinine?

Marty

[Guest guest]

Marty,

No, I don't have chronic sinusitus. Immuran(if that is the correct

spelling) and prograf is the only anti-rejection medication. The

immuran was stopped after six months after transplant. Prograf is the

only anti-rejection medication that I have stay on throughout.

My current serum creatine is 1.2. The kidney seems to be working

great.

Jerry

> hi jerrywar,

>

> what medications did you take after the transplant to prevent

> rejection? was the prograf a recent change? Do you have any chronic

> infections (e.g. chronic sinusitus, etc.)?

>

> what is your current serum creatinine?

>

> Marty