Making it on the Transplant List Soon

[Cordelia]

I talked to my nephrologist today at my transplant hospital and he told me everything from my testing looked good, I can go on the List. At this stage, my husband needs to lose more weight yet so he can't be tested any further until he loses more.

I left with mixed feelings. Happy about going on the list, but because my antibodies are relatively high, I could be waiting 4-5 years, which is the bummer     Good part is, at least my pre-transplant testing is done!   

Another thing I've mixed feelings about is that I will have to defintely have surgery on my arm to get the fistula. (I've had a central line for over a year now) I have mixed feelings about it. I was hoping things would work out for my husband to donate me a kidney soon and bypass the whole surgery on my arm thing.

Bonus side is that there's less risk of infection and that I can swim again.

Now, I wait for a letter in the mail to confirm that I have 'officially' gone on the list.

What a day of mixed feelings!!  Happy and bummed at the same time!   

[C904]

Hopefully that letter comes real soon and glad that you are done with all that testing.

If your husband does not lose the weight you might be on that list a shorter amount of time, you never know and anything is possible.

[okarol]

Do you know what your antibody level is?
Sorry if you've already posted the answer to this, but has your husband already been told he matches?

[Cordelia]

Thanks C904 and Okarol   

My husband and I are the same blood type. However, I have 2 antibodies against him. IF we ever go forward, I would have to do plasma exchange. I was told likely twice before surgery and post tranplant, likely 4 times.

I think though that if the antibodies don't clear within 2/3 treatments, its a definite no go even before the surgery would proceed.

[mcclane]

congrats cordelia !! 

I am hoping the phone rings soon asking you to get to the hospital for a kidney ! 

[MooseMom]

Qualifying for the list is a HUGE thing, make no mistake.  There are so, so many people who are too ill to ever qualify.

I know it's depressing to know that the waiting list is so long, but if you're not on it, your chances of being transplanted are next to nil.  As nice as it may be to be able to count on a living donor, well, that's just it...you can't count on anyone until that kidney is in your body and is working.  Your husband may be able to lose the weight, but something else might happen, and if you're not on the list, you won't be accruing time.  So, congrats for making the list.

[Cordelia]

Hi Macclane and Moosemom, thank you both for your congrats and best wishes too!   

I am sure anxious to get the letter in the mail stating I am "officially" on the list   

I told my husband that too. He could lose more weight yet, but there may be something else yet that may not be right in the hospital's point of view. Afterall, his 24- hr bp and urine test was not to their liking. They assume if he loses more weight, his tests will be okay, but no one really knows for sure until the writing is on the wall. It will be a wait and see scenario.

[Deanne]

Congratulations on making it onto the list!  I remember long, long ago (three weeks ago) when my coordinator called to tell me I was listed. I told her I was really excited, but then backtracked. Wait - I don't want to be on the list! I want to be healthy with my OWN kidneys. This is depressing news. Is it possible to be excited and depressed about something at the same time?

Maybe your husband and my sister should talk. They're in the same "Lose weight and retest" boat.

[Cordelia]

Hi Deanne,

Thank you also for your best wishes and congrats!   

I feel exactly the same as you, happy and depressed. I had been wondering the same exact thing, is it possible to feel that way? Yes!!! 

I am concerned for my husband that if he doesn't lose weight before next spring, they'll make him go through all that testing all over again!