The continuing saga

[Sluff]

It is official, folks. As of November 13, 2007, kitkatz is not eligible for transplant. 

There it is.  The news. 

I'm sorry Kit  Is there a official reason or cause for that decision? Just curious.

[2_DallasCowboys]

Kit,

So very sorry to hear this, please keep strong!

Anne

[angela515]

So sorry to hear that kit 

[paddbear0000]

I'm so sorry! 

[goofynina]

Damn, when they told you that you should've got that big stick of yours and stuck it up their ass!!!    I am sorry Kit 

[skyedogrocks]

I'm so sorry....

[willieandwinnie]

kitkatz

I don't have the words for how sorry I am. Take care.

willieandwinnie

[Beth36]

I am so sorry.


Beth

[okarol]

Every transplant has it's own rules. Perhaps it is time to find another.
Kit, never say never. 

[lola]

  Can you try somewhere else? thinking of you

[Chris]

Sorry to hear what happened to you kitkatz.

[Wattle]

Every transplant has it's own rules. Perhaps it is time to find another.
Kit, never say never. 

I'm with Okarol. Never say never     What about a live donor? Keep trying Kit     

[paris]

Even with a living donor, you have to be approved and on the list. 

Kitkatz, I just am so sorry.  You have been dealing with way too much.   Take time to be mad, sad and disappointed; just like the grieving process for any other loss.  We are here when you need us 

[angela515]

Even with a living donor, you have to be approved and on the list. 

Not true.. at least not true at my centers. My first transplant.. I was never on the list and never tried to get on it since my mom was being tested.

[Beth36]

My mom isn't on the list, either.  UAB sent her the paperwork and she was so mad after the way they treated her when they found out she had high PRA, she told the nurse to stuff 'em.

Beth

[okarol]

Even with a living donor, you have to be approved and on the list. 

Not true.. at least not true at my centers. My first transplant.. I was never on the list and never tried to get on it since my mom was being tested.

 Each center determines their own criteria. It's worth investigating other centers.

[Jill D.]

If you have a living donor lined up you do not have to be on the list. I didn't get on the list until after my first scheduled transplant date was cancelled because they realized my PRA was so high. However, you still have to be evaluated. Kit, I have no idea why you were not accepted or if there is any chance of things changing, but we can only hope....and be here for you.

[paris]

I probably posted that wrong--even though I had a living donor lined up, my center had me go through the whole evaluation process before they would begin testing the donor. And at the second center, I again had to be current on all my evaluations before testing the potential donors. 

And I think that is the point with Kitkatz- there are medical reasons she couldn't be listed and wouldn't those reasons still remain even with a living donor?  She still has to be a good candidate for a transplant, right?  Or is my tired, confused brain not understanding?  That is entirely possible!!

[angela515]

I probably posted that wrong--even though I had a living donor lined up, my center had me go through the whole evaluation process before they would begin testing the donor. And at the second center, I again had to be current on all my evaluations before testing the potential donors. 

And I think that is the point with Kitkatz- there are medical reasons she couldn't be listed and wouldn't those reasons still remain even with a living donor?  She still has to be a good candidate for a transplant, right?  Or is my tired, confused brain not understanding?  That is entirely possible!!

Yes, correct, she would still have to meet the medical criteria... so those would probably still prevent that. Your brain is working just fine.    I was just clarifying that you don't have to get on the list, but yes, you definitely still have to be evaluated and meet the standards. 

[paris]

Thanks, Angela!  I don't always think staight right now!   I feel so bad for Kitkatz. The realization of this must be overwhelming for her.  It all sounds so simple but the reality is so different than the pretty picture most people have of transplantation.   I wish I could give her my place on the list since my PRA will always keep me from receiving a cadaver kidney.  It certainly is a helpless feeling--not being in control of your own body.     Again, thanks for telling me my brain is working fine

[Romona]

It wouldn't hurt to keep trying. I met two people at my center that were refused at other hospitals. 

[kitkatz]

They gave me a choice. Have major back surgery and get the cyst that is hanging out between my back and rectum and get the ovarian cyst taken care of, then         come back for reevaluation; or leave it and no transplant.  Well I talked to the surgeon and he did not want to touch it with a ten foot pole.  The surgery would be very complicated with lots of possible complications.  He says leave it alone and wait to see what happens with it.  It has not done anything in nine years and probably won't.  The center is worried it might turn cancerous after transplant,so they want it out.  I do NOT want more surgery with no guarantee I will be listed.  I can imagine after all of this crap, being told no because you have had too many surgeries.  So I had to make the choice myself.  Given that i am doing okay on dialysis and am coping alright, I chose the route of no transplant. 

Part of me is glad  there will be no more hassle with these people over tests and doctors recs and things with transplant. The other part thinks it sucks and wonders how long i can go without a HUGE glass of something to drink!

[Bajanne]

Every once in a while, take a LARGE GLASS of something.  But only once in the day that you do it!  My dietitian believes that every once in a while you can break the rule.  But not often.  Just pnce in a while to continue to feel you have some kind of control over your own life.