How do I react to this? I am afraid of disappointment!

[LostWife]

So.  Let me start with an update - we've been in the hospital (with 15 hours home in between) for basically the last two weeks.  They diagnosed it as nephritis (kidney infection) and he had pain that moved from his kidney, ureter, bladder, etc.  It was NOT a stone...we still don't know what type of obstruction it was, someone suggested a mass of white blood cells was a possibility.   He's having a urinary tract scope on Monday for them to review as they are all pretty darn baffled as to why he has pain, and they might put in a stint for the restriction they are seeing on the scans.  He was in a crazy amount of pain for the last few weeks.

ANYWAY, while we were checked in the transplant coordinator told us that my husband is "3/4 of the way up the list" and that she wouldn't be checking in on getting everything done if he wasn't as high up.  She wanted to get labs drawn for a few things and a cardio echo test.

I honestly don't know how to react.  I have always hated "the list" because it is SUCH a black box, you never get any information, and you sometimes even think "are we still even listed on that thing?"  Well now I don't want to get my hopes up!  I am petrified of being disappointed.  I am halfway hopeful that this Hell might be over soon.  I am scared I'll be here this time next year, in the same place, writing the same post.

Dang, this is hard.  I just don't know what to think.  Does anyone have any insight?  I'm thinking of calling her once a month just to try to get updates...is that terrible?

Thanks and good health and happy holidays to you all!

[okarol]

I hope you can get things stablilized and the pain is dealt with, poor guy.
It is a rollercoaster of emotions. Moving up the list, and some other poor soul has to lose their life to perpetuate that of another. Very stressful stuff. But try to stay in the moment, see where it goes. The future will come whether we're ready or not.
Keep hope alive, but keep living too, so each set back is not devastating.
Best wishes for a Merry Christmas!
   

[looneytunes]

LW...no doubt it is an emotional roller coaster.  I hope it is resolved soon for you. 

[LostWife]

Thanks to both of you.  I"m just all caught up in my head tonight.

He does seem stable right now, knock on wood.  He's been resting a lot but hasn't taken a pain killer today at all.   

Happy Holidays!  It's midnight! 

[RichardMEL]

I know our system is a little different but I don't even know how they can say you're 3/4 up the list or whatever given it all comes down to best matches in the end. I decided to not ask because I knew what the answer would be (don't ask!!) and then you're rife for disappointment anyway - like a month or so before I got the call the guy sitting in front of me got the call and I found out he was my same blood type and had only been waiting 3 years... and I admit I did feel disappointed a bit when I heard that - stoked for him of course but thinking "hey, I've been waiting longer!" - my brain knows it was a better match for him of course. My heart though did feel a little down. I just had to sit there knowing that my time would come when it was right, and hopefully now it *is* right!!

i certainly can understand the sort of rollercoaster that you're on though and being told stuff like that certainly must get some hopes up that you'll be sooner rather than later - which is both exciting but then probably also gives you a sense of expectation that may be more of a let down over time if it doesn't happen so quickly.

Hang in there. I am proof, like many other IHD members before and after me, that it WILL happen!!!

[natnnnat]

Thanks for the update.  I don't know about the transplant lists.   I just wish you weren't both trudging in and out of hospitals at Christmas time.  Is he in hospital now?  Wasn't sure from your last post.  Gah, the worry and the logistics!  Not festive.  I hope things get straightened out soon.

[LostWife]

Yes, I hate hospitals, but especially when they've robbed us of having a holiday.  My parents are coming tomorrow so I'm postponing most gifts, but it sure is depressing.  Hubs is upstairs sleeping off pain meds.

He's home now but still having to take pain medicine.  HOPING that the procedure we're scheduled for on Monday will give us some answers.  They have discussed removing the kidney if it is severely infected, but that could also be scheduled for later this year if necessary.  For now we're just hoping to find the cause of the pain, which 5 nephs and 3 urologists have yet to be able to puzzle out.

[MooseMom]

I wish we had the answers for you.  I'm so sorry you are having to deal with this at Christmas time.  Hopefully New Year's will be much, much better.