I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Potential Donors => Topic started by: Deanne on July 25, 2007, 03:13:55 PM
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I have FSGS and learned one of my nephews has been diagnosed with it, too. This means that although my sister doesn't show any signs of illness, that she must be a carrier. She spilled protein when she was pregnant, but that resolved when her children were born. I don't know if that means anything or not. She has offered before to be a donor for me when the time comes that I need a kidney (I'm at 25% function). As a carrier of the disease, is she ineligible to donate? Since FSGS can recur in the donated kidney, is recurrance more likely to happen?
Deanne (who mostly lurks these days because my internet access is through work and I have deadlines up to my eyeballs!)
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My grand daughter was diagnosed with MCNS when she was three years old but the disease never responded to treatment. Biopsy never showed FSGS but the doctor always eluded to the probability it was FSGS.
Lindsey was evaluated for transplant in mid-December. At that time a family member offered a kidney. The transplant team turned him down before even testing and said they would not use a family member because the genetic link increased the probability of recurrence.
Then, two non-family members offered to donate. Transplant team turned them down as well saying that the probability of recurrence was so high that they did not want to take a kidney from a living donor but have decided that Lindsey's first transplant needs to be a cadaver kidney.
So yes, recurrence of FSGS is a very real concern and no, your sister would probably not be considered as a donor.
Has your FSGS been in remission?
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Is that your grandaughter in your avatar? She's a beautiful girl! Is Lindsey doing well?
I've never been in remission, but my disease is very, very slow in progressing. I was diagnosed with "some sort of kidney disease" when I was 9 and I still have 25% function now. I'll be 45 next month. I finally got the FSGS diagnosis when I was about 30.
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Yes, that is my grand daughter. Thank you for the compliment she is a cutie but Glamour Shots sure helps !
Lindsey has been on dialysis for seven weeks now and appears to be doing wonderfully. Her labs are still awful - her creatinine has parked at 7.5 and holding. But headaches are gone, appetite is raging, energy levels are good and she just all around looks better.
We saw the Ped/Neph today and hauled in a 24 hour urine, blood and her dialysate from last night so they can run the Kt/V. When we get the results we will know more.
Lindsey is on the machine ten hours a night and that is restrictive for us all. In order for her to get up at 6:30 - you know, hair, makeup, clothing changes - she must be on the machine by 8:30 in the evening. That pretty much puts an end to evening activities like Wednesday church - hanging out at a friend's house. Luckily she is able to sleep through all the filling, dwelling and draining so she is not sleep deprived.
All in all, this has not been too difficult a transition to make considering how well she feels.
We are waiting for the perfect kidney.
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I have found that donor restrictions vary from state to state and center to center. For instance, some centers in this area won't consider live donors who aren't blood relatives. I guess everyone has their own rules.
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I'd forgotten I'd posted this years ago and I just came across it now. My neph told me that none of my siblings would be considered as donors for me because the chance of recurrance would be too high, but they could take part in a paired donation. She said they wouldn't be disqualifed as donors in general, but would be disqualified as donors to a close relative.
The transplant center said the jury was out on the question of recuurance in this case and they wouldn't disqualify her because of the FSGS genetic tie, but they said they won't look strongly at my sister as a donor for me anyway because they'd question her wish to donate to me when her son might follow a more rapid disease progression than I have and he might need a transplant, too. My sister might regret it later if she donated to me and her son needs a transplant later.