New to the group and i'm looking for experiences in relation-transplantation

[Guest guest]

Hi Everybody,

I'm also new to the group (I must say it boosted my inbox quite a bit...)

I'm 28 years old and I've been diagnosed with igan almost 3 years ago.

Since then my kidney function decreased, first rapidly, later on due to

cellcept and a non-diary diet (really made me feel a lot better) a bit

slower.

Now my kdiney-function is about 10-15% and the time has come for a kidney

transplant.

I will receive a kidney of my mother in july (have no exact date yet, but we

have a go)

I'm not worried about the operation, since they are quite standard and I'm

still in a good shape.

But I'm worried about the IGA comming back in the new kidney.

I've read that 50% of the transplants will have IGA again within a year but

always in a very mild way.

Does anyone have any experience about IGA after a transplant? (or any other

experiences with transplants..)

Greetings,

Arjen

[Guest guest]

Hi Arjen

I can understand your worry about this. I'm on the waiting list myself, but

I think it IS more of a worry if the kidney is coming from a live related

donor. You don't want to have the person donate the kidney to you only to

have it lost later on. You should maybe talk this over with your transplant

social worker.

Basically, the person donating the kidney will be told all about the risks,

the chances of rejection, IgAN recurrence, etc. If the person wants to go

ahead with it, it's out of love and the desire to help you. With or without

recurring IgAN, there's always a chance a kidney will not last as long as

expected. That's a chance both the recipient and the donor take, and there's

no getting around it except knowing that the donor wants to make that

wonderful gift knowing all of this (it should all be clearly explained to

the donor completely independent of you). You know going in that the kidney

WILL be lost at some point, whether because of rejection, recurring IgAN or

both. You could get lucky and have a transplant that lasts as long as you

do, but chances are that, at 28 years old, you will likely have more than

one kidney transplant in your lifetime, no matter what you do. That's just

the reality of it, and I don't mean to sound discouraging.

The other option, which IS an option, is to just go on the waiting list.

But, that means a wait of indefinite time. It could be a short wait, or it

could be a long wait. Nobody can predict except to tell you what the average

waiting time should be for your blood type. I've heard of people getting on

the waiting list expecting a 3-4 year wait, start dialysis, and then get a

kidney very quickly (I know one case where the person got the call for a

kidney off the waiting the very next day after starting dialysis). It all

depends on who is the best match, and it's not just blood type. In the

meantime, you will have to be on dialysis. I'm on dialysis and I'm doing

fine, but I know very few people on dialysis who aren't hoping for a kidney

transplant ASAP.

If you're the person on dialysis, even just a year with a new kidney will

seem like it's very much worth it. But of course, chances are that you will

have the kidney for years, not one year.

I hope that helps. One last word: Let's say you really can't decide. Well,

there's no harm in putting it off for a while and going on dialysis. I can

just about guarantee that, while being on dialysis is not the horror story

you often hear about, it will certainly put getting a transplant vs the

risks of losing it in perspective.

Pierre

New to the group and i'm looking for experiences in

relation-transplantation

> Hi Everybody,

>

> I'm also new to the group (I must say it boosted my inbox quite a bit...)

>

> I'm 28 years old and I've been diagnosed with igan almost 3 years ago.

> Since then my kidney function decreased, first rapidly, later on due to

> cellcept and a non-diary diet (really made me feel a lot better) a bit

> slower.

>

> Now my kdiney-function is about 10-15% and the time has come for a kidney

> transplant.

> I will receive a kidney of my mother in july (have no exact date yet, but

we

> have a go)

>

> I'm not worried about the operation, since they are quite standard and I'm

> still in a good shape.

> But I'm worried about the IGA comming back in the new kidney.

> I've read that 50% of the transplants will have IGA again within a year

but

> always in a very mild way.

>

> Does anyone have any experience about IGA after a transplant? (or any

other

> experiences with transplants..)

>

> Greetings,

>

> Arjen

>

>

[Guest guest]

Hi Arjen

I can understand your worry about this. I'm on the waiting list myself, but

I think it IS more of a worry if the kidney is coming from a live related

donor. You don't want to have the person donate the kidney to you only to

have it lost later on. You should maybe talk this over with your transplant

social worker.

Basically, the person donating the kidney will be told all about the risks,

the chances of rejection, IgAN recurrence, etc. If the person wants to go

ahead with it, it's out of love and the desire to help you. With or without

recurring IgAN, there's always a chance a kidney will not last as long as

expected. That's a chance both the recipient and the donor take, and there's

no getting around it except knowing that the donor wants to make that

wonderful gift knowing all of this (it should all be clearly explained to

the donor completely independent of you). You know going in that the kidney

WILL be lost at some point, whether because of rejection, recurring IgAN or

both. You could get lucky and have a transplant that lasts as long as you

do, but chances are that, at 28 years old, you will likely have more than

one kidney transplant in your lifetime, no matter what you do. That's just

the reality of it, and I don't mean to sound discouraging.

The other option, which IS an option, is to just go on the waiting list.

But, that means a wait of indefinite time. It could be a short wait, or it

could be a long wait. Nobody can predict except to tell you what the average

waiting time should be for your blood type. I've heard of people getting on

the waiting list expecting a 3-4 year wait, start dialysis, and then get a

kidney very quickly (I know one case where the person got the call for a

kidney off the waiting the very next day after starting dialysis). It all

depends on who is the best match, and it's not just blood type. In the

meantime, you will have to be on dialysis. I'm on dialysis and I'm doing

fine, but I know very few people on dialysis who aren't hoping for a kidney

transplant ASAP.

If you're the person on dialysis, even just a year with a new kidney will

seem like it's very much worth it. But of course, chances are that you will

have the kidney for years, not one year.

I hope that helps. One last word: Let's say you really can't decide. Well,

there's no harm in putting it off for a while and going on dialysis. I can

just about guarantee that, while being on dialysis is not the horror story

you often hear about, it will certainly put getting a transplant vs the

risks of losing it in perspective.

Pierre

New to the group and i'm looking for experiences in

relation-transplantation

> Hi Everybody,

>

> I'm also new to the group (I must say it boosted my inbox quite a bit...)

>

> I'm 28 years old and I've been diagnosed with igan almost 3 years ago.

> Since then my kidney function decreased, first rapidly, later on due to

> cellcept and a non-diary diet (really made me feel a lot better) a bit

> slower.

>

> Now my kdiney-function is about 10-15% and the time has come for a kidney

> transplant.

> I will receive a kidney of my mother in july (have no exact date yet, but

we

> have a go)

>

> I'm not worried about the operation, since they are quite standard and I'm

> still in a good shape.

> But I'm worried about the IGA comming back in the new kidney.

> I've read that 50% of the transplants will have IGA again within a year

but

> always in a very mild way.

>

> Does anyone have any experience about IGA after a transplant? (or any

other

> experiences with transplants..)

>

> Greetings,

>

> Arjen

>

>

[Guest guest]

Hi Arjen

I can understand your worry about this. I'm on the waiting list myself, but

I think it IS more of a worry if the kidney is coming from a live related

donor. You don't want to have the person donate the kidney to you only to

have it lost later on. You should maybe talk this over with your transplant

social worker.

Basically, the person donating the kidney will be told all about the risks,

the chances of rejection, IgAN recurrence, etc. If the person wants to go

ahead with it, it's out of love and the desire to help you. With or without

recurring IgAN, there's always a chance a kidney will not last as long as

expected. That's a chance both the recipient and the donor take, and there's

no getting around it except knowing that the donor wants to make that

wonderful gift knowing all of this (it should all be clearly explained to

the donor completely independent of you). You know going in that the kidney

WILL be lost at some point, whether because of rejection, recurring IgAN or

both. You could get lucky and have a transplant that lasts as long as you

do, but chances are that, at 28 years old, you will likely have more than

one kidney transplant in your lifetime, no matter what you do. That's just

the reality of it, and I don't mean to sound discouraging.

The other option, which IS an option, is to just go on the waiting list.

But, that means a wait of indefinite time. It could be a short wait, or it

could be a long wait. Nobody can predict except to tell you what the average

waiting time should be for your blood type. I've heard of people getting on

the waiting list expecting a 3-4 year wait, start dialysis, and then get a

kidney very quickly (I know one case where the person got the call for a

kidney off the waiting the very next day after starting dialysis). It all

depends on who is the best match, and it's not just blood type. In the

meantime, you will have to be on dialysis. I'm on dialysis and I'm doing

fine, but I know very few people on dialysis who aren't hoping for a kidney

transplant ASAP.

If you're the person on dialysis, even just a year with a new kidney will

seem like it's very much worth it. But of course, chances are that you will

have the kidney for years, not one year.

I hope that helps. One last word: Let's say you really can't decide. Well,

there's no harm in putting it off for a while and going on dialysis. I can

just about guarantee that, while being on dialysis is not the horror story

you often hear about, it will certainly put getting a transplant vs the

risks of losing it in perspective.

Pierre

New to the group and i'm looking for experiences in

relation-transplantation

> Hi Everybody,

>

> I'm also new to the group (I must say it boosted my inbox quite a bit...)

>

> I'm 28 years old and I've been diagnosed with igan almost 3 years ago.

> Since then my kidney function decreased, first rapidly, later on due to

> cellcept and a non-diary diet (really made me feel a lot better) a bit

> slower.

>

> Now my kdiney-function is about 10-15% and the time has come for a kidney

> transplant.

> I will receive a kidney of my mother in july (have no exact date yet, but

we

> have a go)

>

> I'm not worried about the operation, since they are quite standard and I'm

> still in a good shape.

> But I'm worried about the IGA comming back in the new kidney.

> I've read that 50% of the transplants will have IGA again within a year

but

> always in a very mild way.

>

> Does anyone have any experience about IGA after a transplant? (or any

other

> experiences with transplants..)

>

> Greetings,

>

> Arjen

>

>