Antibodies

[Tracy]

I am needing to vent a little...please.

I got a phone call Feb 09 for a kidney/pancreas transplant within 3 days  of going on the list.  It failed before I could get out of the hospital and they removed everything and hooked back up my old stuff.  So, here I am over a year later and not only is my GFR 8, but my antibodies are 89%.  So, they are saying the transplant will happen, and that they are just not getting very many donors in.  I feel like if I was tested properly before my last transplant, I wouldn't have had the transplant and wouldn't be in this exact situation now.  I am very frustrated because my coordinator won't call me to let me know what is going on, claims she doesn't know anything and now I'm getting worse and needing to start D. 

Incidentally, my surgeon left and went out of state and stopped doing surgeries.  He is a teacher now.  HMMMM  I am thinking of making an appt with the chief of staff at the hospital, since now I don't have a surgeon or really anyone to talk to.  I'm feeling a little left out of the loop, like they are passing me by for K/P so I don't make their numbers go down further.  It is all about the success rate of their transplants. 

I'm so sorry, but I am really frustrated and scared and don't want to be in this situation.

Thank you!  Tracy

[MooseMom]

There is nothing worse than fighting for your life and yet feeling like you are being ignored by the very people in whom you have placed your trust and your life.  I am tempted to suggest going to another transplant center, but I suspect it's not that easy...or is it?  I don't know with whom it is best to start, the transplant coordinator or the chief of staff.  Sometimes going to the head guy is the best way to go, but if it is a big hospital, the big guy often just delegates stuff to the little guy, and you end up going to the transplant coordinator after all.

That their inaction is leading to closer to D is atrocious.  If there is a problem, they should let you in on the big secret.  For the transplant coordinator to claim that s/he doesn't know what's going on is ridiculous...it's her/his job to KNOW what is going on and to COORDINATE with you.

[paris]

It is frustrating.  The co-ordinator doesn't always know everything.  I don't wait for her to call me with information. I am one of so many of her patients and she is dealing with the one being transplanted at that moment.   If you are on the UNOS list, they delegate the organs according to match,etc. The hospital doesn't control the availability.     My antibodies are 100%, they still keep me active, but we realize it is a slim, slim chance of finding a match.  I would think the right kidney/pancreas hasn't been available yet.  It is amazing you were called the first time after being on the list 3 days. You must have wondered how that happened so fast!  I would imagine it is just a matter of waiting for the right kidney for you.    It is a very frustrating, exhausting time.  I have been listed for over 4 years.   One thing kidney disease tries to teach you is patience----I am not a patient person.   I like instant results!!  LOL     I call the center every so often, just so they remember who I am!    I am listed at two centers. One where I live and another about 2 hours away.  Also been listed at Johns Hopkins.   It becomes a full time job taking care of yourself and trying to get a transplant.   It will all happen for you.  Keep coming here and venting to us. We do understand   

[MooseMom]

I'm new at this transplant stuff, so perhaps I don't understand what all the coordinator is supposed to know.  If she cannot answer your questions, perhaps she could tell you who can?

I can be patient and let everyone do their jobs, but if I begin to suspect that someone is neglecting my well-being, that's a whole nuther thing..,

[RichardMEL]

that totally sucks for you. I'm so sorry.

I can't imagine how it must have felt getting THE CALL just THREE DAYS (3!!!) after being listed, with that hope of good things to come being dashed almost immediately. I suppose the good part is that you didn't have to go on D straight away and have stayed off for a year or so.

I think the real problem now is your high PRA (antibodies) as you pointed out - which you've got courtesy of that failed transplant - it's like a double whammy for you - you got nothing out of the tx except a high antibody count, and that count makes the number of potential matches available to you that much lower.

Perhaps when the co-ordinator says they don't know anything it really could be that they just can't tell you anything further. You're waiting for a match just like the rest of us. I haven't heard a peep from my co-ordinator in a year or so, and that's only because I emailed HER with a question.

One thing that is positive for you is that Kidney/Pancreas patients tend to have to wait far less time than just kidney patients, so even with your high PRA you may still get another bite at the transplant cherry sooner rather than later - I certainly hope so!

As someone who gets frustrated with the waiting (over 4 years now for me) I can only empathise with how you must be feeling.

 

[Tracy]

Thank you all for listening and talking to me.  I feel like I am a pretty patient person.  And if I was feeling better than I am, I probably wouldn't be so  freaked out right now.  But, with me not feeling well daily, it is scaring me.  Your responses helped me realize that I am NOT the only one of the list and that all of us are on it, waiting.  I apologize for being insensitive, but I do appreciate this site letting me feel like it's "my party and I can cry if I want to!"      

[paris]

We all need a place to have a pity party!  Good thing is, when I post here, someone will tell me if this is normal of if I need to do things different.  It really is a hard process and no one understands until they are in the situation themselves.  How many times have I heard " have you got that new kidney yet?".  Let me just go down to the kidney store and pick one of those up.      If it were only that easy!!    Keep hanging out with us      We'll keep you company while we all wait together.   

[Tracy]

I realize we haven't talked about antibodies in a while, but I just found out yesterday that my antibodies went from an 89% to 99%.  I asked my NEW coordinator, how?  He said have you had another transplant, no.  Have you had a baby, no. Have you had more blood transfusions, no.  So, he said sometimes they just go up.

WHAT???  I text my neph and he said we could possibly talk about a desensitization protocol.  A what?  I googled it and I am still not sure what exactly it is.  It sorta sounds like a blood cleaning process.    I am not sure.  I hope whatever it is, that it can help me.  Do yall know what it is?

Thanks again!  Tracy    

[Phil]

Can somebody please explain to me the concept of antibodies and HD/transplants.....havent quite understood it.....