Anyone had experience with having a donor kidney nephrectomy

[dputrich]

My wife has Membranoproliferative glomerulonephritis. She was in remission for eight years (cellcept). The cellcept stopped working and a series of things were tried ranging from retuxan to a brand new (and very expensive drug) called eculizimab. Niether worked and she is now in ESKD.

Obviously, she feels lousy and after a meeting with the doctors and discussions with palliative care-- she decided to go on dialysis. However, the doctors also recommended nephrectomies of her native and transplanted kidneys. We learned of a procedure that ablates the kidneys and negates the need for major surgery. That currently is the plan and hopefully will start in week or two.

Our question is about ablating the donor kidney. One of the benefits of getting rid of the transplanted kidney is going off immune suppressants (Prograf, Prednisone) and related drugs. However, one doctor has raised the issue of whether those drugs can be stopped if the ablated donor kidney is left in-- although the ablation would stop its functioning-- it still is foreign tissue.

I imagine this is a long shot-- but does anyone have any information on this.


EDITED:  Thread moved to proper section:  "Transplant Discussion" - jbeany, Moderator

[smcd23]

I have no experience with this specific issue, but from the experience I do have with donor kidneys I would think as long as the kidney is in, she'd need to take the anti rejection medications. My husband has now lost 2 transplants to rejection shortly after receiving them. The first kidney was mine, and his body clotted the artery while his body apparently mounted an antibody defense. The kidney stopped working as it had no blood flow, and since he still made urine at the time, the didn't know that my kidney was also not making the urine they were seeing. He got a fever and had elevated WBCs so they took a closer look and found that all of this had happened and removed the kidney.

After his last tx, he was in rejection and they were using a lot of hardcore anti rejection drugs including eculizimab and had told us that we would be going for surgery in the morning, but if the kidney caused him to become toxic, they'd have to take him for emergency surgery to remove it that night. It also was not working, but it did have blood flow to it, unlike the first time when it did not.

This is why I'd think it would need to come out even if it wasn't functioning, because her body would still see it as foreign tissue like you said, and start rejecting it as soon as the medications are stopped. Are they willing to remove it?

[Kitty Cat]

This is the exact same disease my husband had. You are the first person I've seen who's mentioned it.

My husband had to have his kidneys and transplanted kidney removed. It may be a different situation, in his case his transplanted kidney was not a perfect match, but it was done to save his life (it gave him 6 extra years). The transplanted kidney swelled up and had to come out because it was at the point where they were afraid that it would rupture. His kidneys came out because he developed kidney cancer (once they were removed, he no longer had the cancer). He was only able to stop the meds once the kidney came out. He needed to stay on his med regimen while the kidney was still in there.  I don't have any guess as to what would happen if the meds were stopped and the kidney wasn't removed. This was our experience with it. Hope it helps.

[MommyChick]

Hello there!

I did have a nephrectomy that was my donor kidney. They had to remove my transplanted kidney because my blood pressure was so high it put me into seziers & a coma. So they removed that kidney to help bring my BP down. Once my kidney was removed they stopped all my anti-rejection meds. except prograf was one that they had to slowly ween me from. I know everyone's situations are different! But as far as I know if you would keep the kidney in your body you would still have to take those meds.
Good Luck & God Bless !

[KatieV]

My first transplant has been in chronic rejection for quite a while.  I've been back on dialysis since October 2011 and continued to take my immunosuppressants (including a trial to determine which ones I could handle well).  In December, after catching Mono, they decided to take me off everything except my Pred.  I now take only 5 mg of Pred a day.  That keeps my kidney from going into Acute Rejection. 

Perhaps she could be weaned down to just Pred?