FSGS & future transplant LONG!!
Posted: Tue May 25, 2004 8:29 pm
Hi all,
Background: My son Andreas, now nearly 15. Nephrotic Syndrome at age 2, later diagnosis changed to FSGS. 2 biopsys. Has been on Cyclosporin (sandimunn neoral) the last 12 years. Has protien leakage attacks about 2 times a year, treated with highdose cortison, takes about 2 months in all and then we taper the cortison till the next time.Creatinin and Urea are not great but not at dialysis level either.
He is about 155cm tall and weighs 38 kg.
He has blood type O
Kidney function is now 26%. Was 44 % two years ago.
The question: The neph doc says that now we must start planning for a transplant. When? she does not know maybe a year maybe 2.
Anyhow she has asked us to decide if we want to go with a live donor transpland or a kidney from a dead person (don't know how to term this.)
She explained the pros and cons etc... and that FSGS has a tendency to continue in transplanted kidney. She also made it clear that he would need more than one kidney in his lifetime.
We don't have a lot of relatives.
Of course, I'm ready to give my kidney to my son, but the doc sort of said "hold your horses" your kidney will be needed futher down the line.
My mom (grandma) is 64 years old and not so keen on being a donor.
The doc said a related donor is usually a better match, but if there is a genetic aspect a necrokidney could be better. But there is a time factor involved with that.
Here in Sweden she said it could take anything from one week to 1 year once on the list.
And he cannot be put on the list until he is in ESRF and on dialysis.
He wants nothing to do with dialysis and is fed up with this whole thing. As we all are!
So....I am very unsure of what to choose. As far as I understood we had to choose one or the other, not both.
Greatful for any input.
Carina in Sweden
Background: My son Andreas, now nearly 15. Nephrotic Syndrome at age 2, later diagnosis changed to FSGS. 2 biopsys. Has been on Cyclosporin (sandimunn neoral) the last 12 years. Has protien leakage attacks about 2 times a year, treated with highdose cortison, takes about 2 months in all and then we taper the cortison till the next time.Creatinin and Urea are not great but not at dialysis level either.
He is about 155cm tall and weighs 38 kg.
He has blood type O
Kidney function is now 26%. Was 44 % two years ago.
The question: The neph doc says that now we must start planning for a transplant. When? she does not know maybe a year maybe 2.
Anyhow she has asked us to decide if we want to go with a live donor transpland or a kidney from a dead person (don't know how to term this.)
She explained the pros and cons etc... and that FSGS has a tendency to continue in transplanted kidney. She also made it clear that he would need more than one kidney in his lifetime.
We don't have a lot of relatives.
Of course, I'm ready to give my kidney to my son, but the doc sort of said "hold your horses" your kidney will be needed futher down the line.
My mom (grandma) is 64 years old and not so keen on being a donor.
The doc said a related donor is usually a better match, but if there is a genetic aspect a necrokidney could be better. But there is a time factor involved with that.
Here in Sweden she said it could take anything from one week to 1 year once on the list.
And he cannot be put on the list until he is in ESRF and on dialysis.
He wants nothing to do with dialysis and is fed up with this whole thing. As we all are!
So....I am very unsure of what to choose. As far as I understood we had to choose one or the other, not both.
Greatful for any input.
Carina in Sweden