My not so happy annual pre-transplant assessment!!

[Rerun]

I'm A+.....Chaaa Ching -  Ring Phone Ring!!!   

I go for my yearly evaluation on Monday.  They need an EKG, Chest X-Ray, and an AIDS blood test.  Oh, yes  and I need to take the stool sample kit home (oh joy).

I was so thankful that my first wait was only 9 months.  That kidney lasted 17 years.  I can't complain about my second time around wait. 

My brother was here last weekend and he said he'd rather get the flu than have the flu shot because of the needle.... I guess he won't be offering me a kidney.

[scyankee]

I just got a call from my transplant center that it is time for another evaluation. CRAP!
I don't understand what the heck I need to go 2 hrs away when the tests could be done
near my home?  I don't understand since the only change in my health is that I am on dialysis
now since my last evaluation why they don't just use the blood workup from the dialysis center?
I'm pretty PO'd about it.  CHA CHING for the hospital, doctors and radiologists.
HATE THE HEART STRESS TEST!!!!!!!!!!!!!!!
Why bother when we are years away from a transplant and not so sure that I'm going to go
that route anyway.
SCYankee

[angela515]

Why bother when we are years away from a transplant and not so sure that I'm going to go
that route anyway.
SCYankee

I'm assuming your on the transplant list, since they wouldnt do an evaluation if you weren't. So why would you be on the list if your not sure you want a transplant? The whole reason behind it is because you never know when you will be called. It could be the next day or 2 months, or 2 years... there is no definate time line. Hnce everything needs to remain up to date and it is very necessary.

[Wattle]

Hi RichardMEL,

I am also in Melbourne. What hospital are you with? I have to go to the Transplant clinic every 6 months. Which is different from my private doctor. They check that I am still "Active" and make sure all required tests are upto date. Your Red Cross bloods should be taken every second month. I have mine in the 3rd week of the month at the Royal Melbourne. In Victoria the 'waiting time' starts from the day of your first dialysis treatment. I was put on the Transplant list early, almost a year before I started dialysis. Only to be told that it didn't count and the day of my first treatment was the start of my waiting time. They wouldn't even back date it to the day of my catheter surgery it had to be the first PD dwell. So I have been on dialysis now for 19 months and that is my official waiting time. Yes, I was more than a little bummed. To get a transplant it all comes down to waiting time, age does help (so I am told by my doctor, I am 38) but its like Amanda was told, I was also asked "Do you have a live Donor?". The answer was No.

[Treasure]

Please forgive me for asking a few questions about the UNOS waiting list and such... I was put on the list when I started dialysis, but two of my sons were already interested in donating to me, so I never did figure out how things really work on the list-- especially once they said that my average wait would be 10+ years.

I'm back on "the list" now after I lost my transplant from my son-- but when I had the nephrectomy six weeks ago, my doc said in passing that I would now be on the "special list" for people with FSGS and sensitivity issues. I hope being on the special list doesn't mean they put your name in the trash can, hehehe. But does anyone else know anything about special lists and how they fit into the revised algorhythms that UNOS supposedly has now.  Also, is there any kind of system where you can periodically check your place on the list-- besides calling your doctor repeatedly, emailing or chasing him down at Hawaii conferences?

[angela515]

Please forgive me for asking a few questions about the UNOS waiting list and such... I was put on the list when I started dialysis, but two of my sons were already interested in donating to me, so I never did figure out how things really work on the list-- especially once they said that my average wait would be 10+ years.

I'm back on "the list" now after I lost my transplant from my son-- but when I had the nephrectomy six weeks ago, my doc said in passing that I would now be on the "special list" for people with FSGS and sensitivity issues. I hope being on the special list doesn't mean they put your name in the trash can, hehehe. But does anyone else know anything about special lists and how they fit into the revised algorhythms that UNOS supposedly has now.  Also, is there any kind of system where you can periodically check your place on the list-- besides calling your doctor repeatedly, emailing or chasing him down at Hawaii conferences?

I'm not sure what he meant by the "special list", but you said you just had a surgery done, as far as I know, there is only 1 list, and if your sick, or have an infection or surgery, then they usually put you as "in-active" on the list until your better and can have a transplant if one were to become available. Therefore, once you have healed from your surgery you would call your transplant coordinator and let them know your healed and they would change you status as "active" again, and you didn't lose any time on the list b/c you werent removed from it. I would call your coordinator and tell them what your dr said and verify what it means.

You cannot check your place on the list, nobody can, not even your dr or coordinator. The list is constantly changing every second, and we are not given a specific number on a list. Basically someone dies, there organ becomes available, they then run there blood work numbers through the computer and the computer finds the best possible match. (Example, you put a suspects finger print in the computer. and it goes through thousands of other fingerprints in the system untill a match is found.) If a perfect match is found, that person gets called and offered the organ first, no matter their wait time on the list. If it's not a perfect match, the computer finds the closest possible match and then they look at other factors such as wait time on the list and such.

Hope that helps.

[Treasure]

thanks, angela for clarifying a few points for me. if i have to check with a coordinator to find out what my transplant team meant by the "special list" i'll probably be on my third or fourth transplant by then, hehehe... i don't work through my local nephrologist...i work directly with the staff at the transplant hospital i use...and they have been swamped for the past 18 months and getting a quick answer to a question takes a great deal of time and effort.

[angela515]

thanks, angela for clarifying a few points for me. if i have to check with a coordinator to find out what my transplant team meant by the "special list" i'll probably be on my third or fourth transplant by then, hehehe... i don't work through my local nephrologist...i work directly with the staff at the transplant hospital i use...and they have been swamped for the past 18 months and getting a quick answer to a question takes a great deal of time and effort.

I usually used to leave a voicemail for them, and at their lesiure they would respond. If it was timely enough for me, I emailed them, seems you get a quicker responce through email since they are always checking their email! LOL

[Treasure]

My lead transplant doctor is kind of a transplant "Rock Star" and surprisingly, he has responded to my emails...and really quickly, too. But he's taking over as president of one of the major transplant organizations and i don't think he'll be able to drop everything and answer my questions...hehehe... though maybe he should, because if he ever gets me straightened out, he's gonna get a nobel prize, for sure! hehehe.