Transplant center update

[paris]

I spent today at UNC for my 2 year anniversary testing.  Had labs, chest x-ray, EKG and stress sestamibi cardiac scan. Got home a little before 4 and since I had been fasting from the night before, I was glad to have Christmas leftovers waiting for me.  Good thing was, there was no one at the hospital for scheduled tests, so everything was ahead of schedule. That was a nice surprise.  The technicial that helped with the cardiac scan remembered me from last year.  I don't know if that is good or bad!  The cardiologist said he wanted to hire me to coach others through the procedure because I didn't complain or tell him how horrible it was.  My theory---just do it and get it over with.  It takes 2-3 hours-------you just can't complain for that long about anything.  They couldn't schedule the surgeons appointment ( I am sure he was on Christmas vacation!), so will have to meet with him again in January.  He isn't going to tell me anything new---nothing has changed---still PRA of 100%.  Not sure why I am going through all of this, but I will play the game.   I just can't get my hopes up any more; what happens, happens no matter how much I worry or stress.   Just glad the day is over.

[okarol]

I cannot recall paris, why aren't they doing anything to reduce your PRA?

[goofynina]

Paris, never give up HOPE my friend, we need something to hold on to to keep us going and there is nothing better than HOPE   And i am sure that tech remembered you cuz only special, warm and caring people leave a lasting impression on someone and you are an extremely warm and caring person  and i wish nothing but the best for you my friend, i just love you  

[George Jung]

Are you involved with the paired donation program there?   

[Romona]

 
I love you too Paris. Like Susie said don't give up hope!

[kitkatz]

Come on over to my corner and sit with me. I could use the company in No Transplant Land.      ( I really am kidding here.)

[Jill D.]

Hang in there, Paris, and please, please don't give up hope!!! You never know...a donor could appear when you least expect it and you are doing all the right things: you have found a good transplant center for a positive crossmatch transplant, you are keeping your evaluation info current and you have a great support system with your kids and us!!!
I love you!!!

[paris]

Thank you all for your kind words. They were just what I needed.  I continue to leave no stone unturned---paired donation, etc.   The meeting with the surgeon in January is also to talk about IVIG therapy. They are just beginning to do it at UNC and I want them to include me.  Thanks to all of you, I have so much knowledge and am ready to try anything.  What do people do who don't have this site to go to?  Thanks friends for always being there

[angela515]

Just read this thread. Paris, I look forward to reading how your appt goes in Jan, and I hope you get your IVIG therapy

[st789]

Do your best and leave  everything to the one up there!

[Beth36]

That's great, Paris!  My mom's PRA went up a little when she was tested at Mayo, I don't know what the number was because she didn't ask  ....I think she was scared to know, truth be told.  However, they are holding off a bit on her transplant because they are waiting for a new drug to become available that they use on higher PRA patients now.  I don't know what it's called because my mom didn't and my dad didn't write the name down    I really really wish I had been able to go with them BUT I wasn't able to...ugh...anyway, you might want to ask your doc about it and/or see if they can find out what it is or get it for you....good luck and I am hoping for the best for you!

Beth