Turned down for waiting list

[sparklelady]

Hi all!! My father has kidney disease, he is not yet on dialysis, he was diagnosed 3 years ago and by some miracle, he is managing to stave off dialysis.He takes very good care of himself, watches his diet almost obsessively and golfs every weekend. I, myself had a transplant in Jan. of this year, so I know a little bit about transplants,etc.
My question is, the hospital that tested him for the waiting list turned him down. The reason they gave was "it will not enhance the quality of your life". WTF?
I was not there and of course, neither my mom or dad asked any questions. He is 73, but he is still active and in good health. He apparently passed all of the tests ( as far as I know), doesn't smoke or drink, is not overweight and doesn't have any heart problems.
His neph told him to test at another hospital.
Would I be out of line to call his coordinator to get more information?
Mom and Dad are very old fashioned, whatever the doc says goes, no questions asked.
I am very upset about this.
Any suggestions??
Thanks!!!

[Rerun]

Yes, you call his coordinator and if she/he pulls the "privacy" issue then say you will call UNOS and try to get to the bottom of this.  They do not want a call from UNOS.  (United Network of Organ Sharing)

Who are they to decide his life.  Especially if he is healthy. 

Do you think he is scared to have a transplant and just told you that?  Something to think about.

[jbeany]

You dad can sign a release form allowing them to discuss his condition with you. 

Are they saying he's not at low enough function to qualify for the list?

[malaka]

I'm guessing that his kf is sufficient to maintain life as evidenced by his level of activity.  I am unaware that one can join the list on the "if come" that kf will decline sufficiently to warrant transplantation at some uncertain date in the future.  I asked my nephrologist about getting on the list and was told that wasn't going to happen until I was on dialysis.  This, even though the list is more accurately described as a pool of potential transplantees.

[sparklelady]

Rerun,
He is not scared. He was devastated when they turned him down. I am going to call tomorrow and demand answers.
jbeany,
No other answer except that it won't enhance the quality of his life. To me, that is a BSh#t answer as far as I'm concerned. When I was going through testing, I questioned everything and didn't stop until I got answers. Howeveer, my dad just takes their word for it, so I'm on a mission to help him come hell or high water!!!!
Thanks to all of you for responding!!!

[willowtreewren]

Malaka,

You do NOT have to be on dialysis to get on the list. My husband's nephrologist tried to get him listed early enough to get a pre-emptive transplant. The social worker at the transplant center was mis-informed about the insurance, though, and that delayed getting listed by nearly a year. My husband was listed in May of 2008, but did not start dialysis until the end of June of that year.

Sparkle, DEFINITELY call to try to get this straightened out.

Aleta

[jbeany]

I agree - it is a BS answer with no useful info at all!

[MooseMom]

"Age discrimination" comes to my mind....

[paris]

Many of us here have had a preemptive transplant.   I'm probably one of the older ones.   I even asked when my age would take me off the list. I was told that there isn't a set age at this center. It really depends on the patient and situation.    They need to answer a lot of question to your father.   Questions for you might be; what is his pra, his gfr,and of course, what disqualified him.    I always took someone with me to take notes when talking to coordinator or surgeons.  It is easy to check out mentally once the words "you don't qualify" are spoken.    You have experience, so you totally understand how overwhelming this is.   You will be an excellent advocate for your Dad.  I am assuming you are not at the same transplant center as your Dad.     Time to take the         and start hitting people!   Hope you get some answers.

[sparklelady]

Paris,
He takes my mom , who doesn't ask any questions, either. Our transplant hospitals are different but only 4 miles apart. ( I had my transplant at UPMC Montefiore in Pgh, he is at Allegheny General, also in Pgh)
I plan on asking a lot of questions tomorrow. I am really getting more and more pissed as I think about this.
I can totally see if they disqualified him due to health concerns, but that's not what they said.
I am on a mission!!!!
I will get answers if it kills me. ( I can be a real biotch, look out AGH!!)
Thanks for the support

[Ang]

down here in australia, cut off is 70 years of age i believe for transplant.

[paris]

I'm going to watch for your next post.  I think we all want to hear what happens.  Maybe I should watch the national news!!       Good luck.  You Dad is lucky to have you.     

How are you feeling just being a few months post transplant? 

I took my daughter who loves to take notes, puts everything on spreadsheets and everything is on a list.  I knew she had to be the one to go with me!!   My husband has selective hearing and only wants to hear the good things.   

Hope tomorrow is successful.   

[cariad]

I agree with the nephrologist - have your dad go elsewhere. I would most certainly grill the first hospital as well, but it sounds to me like they are (not very subtly) saying that at your dad's age, transplant will not extend his life significantly and so they've decided he shouldn't bother. They said quality, I think they were thinking quantity. Also, I would say it takes a solid year for many people to recover from transplant, perhaps longer if you are older, and so once again they are thinking about that rough first year and deciding that it would not be worth it for him given what he might get in return. Mind-bogglingly arrogant, but that's the transplant field for you.

I am very curious as to what their defense will be. Please report back soon. And best of luck!

[Jie]

"Age discrimination" comes to my mind....

Well, UNOS is developing a policy to openly discriminate old folks, so I am not sure UNOS helps much in this case. Like many posts said, try different centers.

[Chris]

First, Pgh shorthand for Pittsburhg?
 
Second raise as much he** as you want I say and also go to another center. If you can, also go with your dad if possible. Most of his testing can be transferred over and used with a minimum amount of retesting and possible  new test.