I Need Suggestions

[Cyndimae]

I am at end Stage kidney Disease. With PKD on Dialysis at Clinic 3 Days a week. On the Transplant list since March 2018. And on Dialysis since April 2019. Besides this Group is there support groups or Groups that help you with ideas of finding a living Donor. I have had 6 perfect matches but they were rejected for one thing or another. Since I started Dialysis. I had a Csf in the Skull due to fluid pressure. ( Brain Surgery) 2 seizures on Dialysis that broke my spine. Then 6 months good treatment. And now complications again. Im active now on the list but scared to get sick again to be inactive on the donor list. Im type A Blood and with Mass General Boston . the Transplant team tells me Im 2 years down the List . any suggestions

[steve680]

I just started dialysis myself. You mentioned above that you had two seizures while on dialysis. Was that on hemodialysis and was that caused by the dialysis? I'm currently on nocturnal hemodialysis but am looking for better options.

I too want to get a transplant but need to find a donor. Some people recommend using social media and/or letting your church group or any of your support groups (like AA) know about it. You can also let all your friends/family and even people at work (if you're comfortable with that) know you're looking for one good kidney. The more people, the better.

Perhaps I should move to Boston as in my area (SF Bay Area) that transplant waiting list is at least seven years long; it sounds like the wait time in your area is only four years long.

[BigBilly]

Cyndimae: I am CKD4, so I don't have any direct experience. However, from time-to-time I have read of individuals needing a kidney wearing a T-Shirt stating: "I need a kidney!"

Is there a neighborhood or church event that could rally around you to perhaps even obtain local media attention to your need? As you know, a live donor provides a better kidney than a kidney extracted from a cadaver. Best wishes!