Transplant Cancelled

[alperk]

My wife's identical twin is a 6 of 6 antigen match and we were hopeful for a transplant in the next few months.

GUT PUNCH !!!

In the second to last day of donor testing she was found to have stones in both kidneys, one 9mm. She was immediately taken off donor status and my wife went on the active waiting list.

Twin got urologist appt 4/4. Does anyone think after cause is determined she could get lithotripsy, have kidneys restored to healthy and back on donor list ?

Meanwhile we need to buy time for waiting list which can be 3 years. GFR 16. No dialysis. Active, healthy appearing. Nephrologists thinks FISTULA could stabilize GFR. What do you think ?

[Bassetmommer]

What do I think... I think is so terrible to be so close only to have it cancelled. However, for your Twin, it is a good find before her kidneys are damaged too much. Kidney stones can really mess up your kidney... I know... I had 5, 9mm,6mm, 5mm and two 3mm. I took/take allopurinol and sodium citrate and they are supposedly gone. But the damage was done. I passed over 32 stones in two years. They were small but still...

[StayingOptimistic in reply to Bassetmommer]

what kind of tests you had to find out about these exact stone’s measurements? Thanks

[Bassetmommer in reply to StayingOptimistic]

ultra sounds and CT

[PostivelyJo]

I’m so sorry ! This is a very difficult time. You have a lot of adjusting to do. My EFGR was 4 when I was transplanted . I know it’s not the only measure needed but it might give you some comfort. The worst case scenario might be 3 years on the list but it could be much quicker , in the UK I waited 11 months with O+ blood ,

Why would a fistula help ? What is the thinking ?

[alperk in reply to PostivelyJo]

Our nephrologist recommended it . A couple studies from Google showed effectiveness but the procedure has not been approved yet. We think it's worth a shot to but time. Amazingly 2 people have offered to be donors. Feeling more blessed today

renalandurologynews.com/new...

bmcnephrol.biomedcentral.co...

[Parkerbarker in reply to alperk]

That is wild!

[Darlenia in reply to alperk]

Interesting articles. It makes sense that placing a fistula sooner than later so dialysis can be started earlier would be easier on the kidneys than waiting until the kidneys crash or are terribly stressed. According to the article, “Clinicians understand the difficulty in persuading some patients to agree to timely AVF creation,” he noted. “The possibility that this maneuver might delay hemodialysis may be the persuasive tipover rationale for the reluctant patient to have an AVF created in a timely manner.”

My only concern is that the patient may not be told about other forms of dialysis...simply railroaded into hemodialysis with the promise that it's good for you although peritoneal dialysis has the same outcome and may be indeed better for transplant purposes since it doesn't involve accessing blood and blood vessels.

[SN23 in reply to alperk]

It must very hard - gut punch as you said. But it’s amazing that you have other donors come forward🙏🤞

At 16 percent your wife could also work to preserve her kidney function while she waits for the transplant through kidney friendly diet and eating according to her labs. Typically highly plant based less processed intake of food. She could consult with a renal dietician.

All the very best.

.

[Tolmezzo]

Unfortunately kidney stones it's hard stop. If your transplant center is settled you can accept "marginal kidney" or "dual kidney" program. This will reduce a lot your waiting time. With bit of luck you should be able to avoid dyalisis..

[Cleo0806]

Have the potential donor get the stones taken care of. Get a 2nd opinion from another transplant center! About 3 years ago I was turned down to be a kidney donor for my son. I was told my kidney arteries were too small. I got another opinion from another transplant center(Mayo Clinic- Minnesota) and I was approved to be a donor. Two years ago my son had a successful transplant and I donated my kidney and had no problems.

[ShyeLoverDoctor]

First of all I am very very sorry. Harsh news. I was positive my sister was going to donate, we are the same blood type and there was a 1 in 4 chance of us being matched very closely. Unfortunately, unknown to me, she had had some medical issues from her C-section 15 years ago - urinary retention - her urologist recommended against the procedure. She quit the evalution process because she didn’t trust the transplant center, she thought they only wanted her kidney and didn’t care about what happened to her after the operation. I wish she had finished the evaluation and heard what the transplant center doctors had to say!!! I don’t think I can ever forgive her. The reason I say this is, I was 100% counting on her kidney and it didn’t happen.

I have never ever read that kidney stones will be accepted as a donor. My friend was willing to donate, but when he tried, they said you had kidney stones, no. It’s on the screener quiz you can usually take online, called the BREEZE quiz - or at least they have that in the. US.

All a fistula is, they dig into your arm and surgically graft your artery (arteries are deep and the blood flows fast ) into your vein (which runs along the surface). That way you have a lot of blood going fast along the surface which allows them to stick two dialysis needles in it, one goes in and one goes out, and filter your blood by running it through a dialysis machine. It takes 3 moths to fully develop. You can help it along by squeezing a rubber ball to encourage blood flow. If your fistula gets cut by accident, like a knife slice, you will bleed to death in about 9 minutes.

I am not a doctor but 1. I don’t see how this could possibly improve your kidney function. All it does is re-route blood flow. 2. I’ve never read about this either and I consider myself very well informed.

I don’t know how sick you are. Some doctors like to start dialysis when your GFR hits 15, which I have heard called “early start”. Some wait until GFR 10, because there were studies done that early start had no effect on outcome mortality, etc. My guess is you have a doctor who thinks you’re going to be put on dialysis soon. ASK THE DOCTOR.

[GemLvr]

What a heartbreak! I think it depends on the transplant center as to whether the twin can donate. I had a good friend offer to donate to me but he was rejected for having kidney stones many years ago. Fortunately my cousin also offered his kidney and that worked out well. If your wife is doing ok at 16 gfr she can avoid dialysis for now. I was at 10-12 gfr and no dialysis before my transplant. I suggest you both start looking for other donors and get on the transplant list asap. If the twin works out, so much the better but be prepared if not. Good luck!

[JackN]

Hi,

Sorry for your sudden event -- I'm a little confused by one thing. It sounds like your wife is a live donor for you, so why is there any kind of waiting list? She's apparently ready, you're ready, why isn't it "go time"?

[alperk in reply to JackN]

My wife is the recipient and her twin WAS the donor

[JackN]

OH, I totally misunderstood. Sorry about that! I hope her twin can donate once she resolves her stones issue.