Is there a financial incentive for transplant centers to place someone directly on the inactive list instead of denying them outright?

[barbara55109]

Is there a financial incentive for transplant centers to place someone directly on the inactive list instead of denying them outright? Most people on the inactive list are never activated and just die. I just got put on the inactive list and from everything I read it's simply a death sentence. I can't figure out why they just wouldn't outright deny me.

[panthersfanee]

I’m not sure about incentive. But they put my son on the inactive list at 16 so he could claim pediatric points and time accrued since he would most likely be an adult when the kidney was needed. I thought it was a good thing for him, not a death sentence. Can be upgraded to active at anytime and reviewed at least once per year. He has stage 4 CKD at about 26% GFR now, at 17.

[Darlenia]

Hi! My husband was in the active list and now is on the inactive list because of a blood thinner he's taking for a stent. He will return to the active list after his prescription is done. But you have a valid question. At the time he received the stent, I questioned his cardiologist about "the reality of him actually receiving a kidney down the road" and "if he was simply serving as a convenient money machine for the transplant center" as lab and procedures check-ins are frequent and expensive. The cardiologist reassured me that he has seen numerous patients receive kidneys after stent placement and that people do move back and forth on the active/inactive lists without harming their chances for a transplant. That has since been confirmed by others in internet groups - some of whom who received their first kidney after a decade or more on dialysis and extended periods of inactivity. I've also become aware that those completely dropped off the list are generally those with compromised blood vessels, high antibodies, certain cancers, etc. So you my want to keep trying to get a kidney. The reward may be great!

[barbara55109 in reply to Darlenia]

I was given no concrete reason. They just said "get stronger." I'm only getting weaker as my CKD worsens.

[Darlenia in reply to barbara55109]

I understand that your numbers have to be in a certain range before you're placed on the active transplant list. You may want to ask your nephrologist what your local transplant center requires. A person's placement on the list is determined by the date you're placed on dialysis. Occasionally someone may be given a kidney transplant before they were placed on dialysis, but that is rare. Hope you eventually get one too.

[Jayhawker in reply to Darlenia]

I just had an appointment at my transplant center yesterday. My creatinine and GFR improved unexpectedly at the beginning of March. If my data stays in this better range, they will move me to inactive status on the transplant waitlist. I’ll remain on inactive status until my renal function falls back to a GFR of 15 or lower. But I’ll continue to accrue time toward the transplant while placed on inactive status.

So, very likely, when I move back to active status, I would have accrued enough time to be eligible for a kidney essentially immediately. That’s my current understanding. The reason they will do this in my case is because the average life of the donor kidney is 8-10 years. They want to get the greatest benefit from the 8-10 year life of the donor kidney. (Their words, not mine.)

Also, I’m still not on dialysis. So my transplant wait time began accruing from the date I was actively waitlisted, Jan 10, 2020. I mention this as it is possible to be waitlisted while you are not on dialysis. I gather that is somewhat rare, but it does happen.

And finally, all cases are different. My data clearly falls outside the norm. My transplant nephrologist talked about that with me at length yesterday. As I’ve mentioned in other posts, I’m not taking BP meds. I’m also not taking diabetic meds, although I have Type II diabetes which caused my chronic kidney disease. I control my diabetes without meds. My cardiovascular health is very strong with all data falling well within the normal range. My lungs and liver are also fine. He said I’m a very healthy 67-year-old woman who simply needs a healthy kidney.

So, we are each different and unique cases. We need to talk with and listen to our medical team members and do what they say. We can each maximize our own situations. Regardless of treatment approach, doing this will improve our quality of life.

Jayhawker

[Darlenia in reply to Jayhawker]

Yes, some get a kidney pre-emptively which you're trying to do. Glad you could speak to that as my hubby is going the regular route. I suspect most of us have discovered that inactivation on the transplant waitlist isn't uncommon and can occur for any number of reasons. I simply hope that Barbara receives a good reason for the inactive designation and is given a good explanation for what is required to be moved to active status. I've followed people who have received transplants following cycles of inactivation and activation. So, a little knowledge goes a long way.