Pre-emptive transplant

[enginist]

What would you do if you had an opportunity for a preemptive transplant that may not be necessary?  By not necessary I mean that my GFR, which has been as low as 16, now seems to be stable in the mid-20s.  I'm eligible for a transplant by virtue of the GFR having been below 20 for about a year.  However, if my numbers remain where they are, I'd prefer to avoid such a major procedure, with all the costs and complications that entails.  Of course, there is no way of knowing what the labs will be doing in six months or a year from now.  The kidney is notoriously unpredictable. 

A further consideration is that I'm a candidate only for a high-risk kidney; a kidney, for example, harvested from an OD victim, who may or may not have hepatitis or HIV.

Another factor is my age.  At 70, my health is excellent and the outlook for a successful transplant is more positive now than it would be in five years, when my health will have undergone a normal amount of age-related deterioration.  I've learned that transplant recipients in their early 70s do much better than those in their mid- to late 70s.

So what would you do?  I'm inclined to roll the dice and hope that my lab results remain out of the red zone for awhile. 

[iolaire]

Are you in the US?  If so get listed, since you can always go inactive or turn down kidneys.   Here in the US your wait time starts when you are approved to be listed or when you start dialysis whichever is earlier. So if you don’t get listed pre dialysis you will be waiting much longer. I was listed in 2011, started dialysis December 2013 and received my transplant 2017. I’m very happy I took my doctor’s advice to get listed early.

If you are not in the US and don’t face a wait for the kidney it’s a more complicated choice. I guess I’d recommend to do it as you are as young as possible and probably best able to recover for surgery now versus later.

But all your concerns are valid so either choice seems strong.

[Cupcake]

I say go for it! Kidney failure even with GFRs in the 20's is hard on the rest of your body. After transplant my blood pressure went to zip and my cholesterol and triglycerides dropped like a rock. I have a shoebox full of discontinued meds (that I am trying to get to the medication recycling center at the hospital) When my GFR was in the 20's I developed heart failure due to volume overload-kidneys not peeing enough.

[LorinnPKD]

Yep. I would totally get listed and then turn down kidneys that may be a bad match.  You can't win the lottery if you don't buy a ticket.

There's a Hepatitus innoculation that you might want to ask your transplant team about, which greatly reduces your risk.

By the way, people who have OD'd from opiates are one of the largest growing sources of cadaver kidneys:
https://www.vox.com/2018/9/24/17880392/opioid-crisis-public-health-liver-transplant-organs

[Simon Dog]

Chances are your xplant team will require the Hep vaccines, or at least one of them.  I know mine did.

Also might as well get the new shingles vaccine (Shingrex) pre-transplant.   Expect a case of FLS the day after each shot.   FLS :== Feel like shit syndrome.

They will not offer you a "bad match" but might offer you an elevated risk of high KDPI organ.  Elevated risk means the donor was an OD, did time in stir, etc. - but with NAT testing, they can catch HIV within a few days of infection and the risk is 1 in thousands.  KDPI is a measure of quality as correlated with graft longevity (google it).

My cadaver kidney came from an opiate OD.

A further consideration is that I'm a candidate only for a high-risk kidney; a kidney, for example, harvested from an OD victim, who may or may not have hepatitis or HIV.

Hep C is curable, assuming you or your insurance can afford $95K or so for the meds.  As I mentioned, the new Nucleic Acid Testing detects HIV very soon after infection (and they still do the old test).  I rolled the dice on this one and won.  Worry more about KDPI than HIV/Hep.

  I'm inclined to roll the dice and hope that my lab results remain out of the red zone for awhile.

if you turn down a kidney you do not lose your position on the list, nor do you get on the transplant shitlist.   A middle ground is to accept only a relatively low KDPI organ. (low is good, you will not qualify for anything <= 20, numbers range 1 to 100)

[enginist]

Good advice from all, which is appreciated.  Iolaire, I probably should get listed just in case the kidney crashes, although right now I feel as though I've never even been sick.  As long as I'm feeling good, I guess I can turn the offer down.  When I visited the transplant clinic, they said I was eligible for what they called the "targeted list," which differs from the regular list, but I'm not sure how. 

Cupcake, I don't have any of the problems that plagued you when your GFR was in the 20s.  My last blood pressure reading was 105/70.  I'm taking 5 mg of an ACE inhibitor, which I may cut in half. I recently went vegetarian, which may account for the low BP.  Best of all, I'm entirely free of itching.

Lorinn, I think if I registered I'd get an offer quickly.  I thought that if I turned it down, I'd go to the bottom of the list, but as you and Simon point out, that may not be true. Simon, I had the first shot of the two-stage shingles vaccine, but it's been six months since then and I can't get the second stage anywhere in Chicago. In any case, the first shot didn't cause anything like the FLS syndrome. 

[KeenString]

Uhhhhh..... wait, don't they test the donor for HIV and Hepatitis before they stick the kidney in someone? They do that, right? (please tell me they do that...)

[iolaire]

Uhhhhh..... wait, don't they test the donor for HIV and Hepatitis before they stick the kidney in someone? They do that, right? (please tell me they do that...)

Yes, they do testing.  The tests see infection after a short time, maybe 72 hours, if you choose to accept a higher risk kedney that means the person may have a higher risk for those types of infection, but as long as they were not infected in the last few days the tests would see it.

Some people also choose to accept Hepatitis infected kidneys because that is now treatable.  People who choose infected kindeys likly feel that they will not get to the top of the list otherwise.

[KeenString]

Ohthankyoujesus

[charlesc]

Everyone is different but here is my position:
I have been in Stage 5 since Oct. 2011 today is 2-2-19.
Creatinine vascilates between mid 4.5 to 5.6 with a GFR in the low double digits, 11-12 to lows of 9.
2.5 years ago a spot appeared on my ONE kidney so the transplant dept. decided that it "might" be cancer and wanted to remove it. I said no.
I am still on the transplant list but they will not transplant me with the spot, so if my kidney fails then remove it and I am then, according to them, transplantable!
NOTE that the spot has not developed in 2.5 yrs and the oncologist thinks that it will not.
Bottom line is I am doing rather well at this stage, in fact very well and I dont have to be available 24/7 for a call!!
If I did not have the spot on the kidney and I got a call tonight for a kidney I think that I would turn  it down. My co ordinator said that would NOT affect my standing on the liist.
By the way, I am 75 and have been living with one kidney since I was 6.
There are so many variables that you will have to evaluate the entirety at the time that an organ is available.
Good luck,
CCC

[Simon Dog]

Yes, they do testing.  The tests see infection after a short time, maybe 72 hours

The newer HIV test is referred to as NAT (Nucleic Acid Testing) and shows HIV in this timeframe.

The odds with an elevated risk kidney are something like 1/2000.  I would rather have a high quality kidney with higher risk for cooties than a lower quality kidney from a lower risk donor.   My kidney was elevated risk, 33 KDPI, and I tested negative for the bad stuff 3 months out.