Re: Kathy -FINALLY Listed!

[Guest guest]

> We are officially on the list. WOOHOO!

> He has a very low MELD score (5 last we heard). But, the

> Coordinator said that since there are very few on the list (49

> total) and even fewer of his blood type (A), we shouldn't have a

> very long wait.

Kathy - Congratulations on this news (though it is bittersweet that it has

come to this point). You are *so* fortunate to be living within a small

OPO. I just checked the UNOS waitlist stats and as of May 21, there were

five people with A blood actively listed in the entire state of Indiana

listed; 2 with MELD scores between 11-18 and 3 with MELD scores lower than

10. ( In contrast, in my OPO, there are 250 people with A blood listed; 11

of whom have MELD scores higher than 19.)

In my experience of waiting -especially when I was higher on the list than

I am at present - it is hard at first not to jump each time the phone

rings. But since a watched phone never does ring, I found it helpful to as

much as I was able go about my normal daily business, to get out

of the house (provided the transplant team knows how to reach you) and to

try to set goals for the day other than getting the Call. Even the small

pleasures from a walk, a visit, a hobby, your job or whatever will take

the edge off the possible disappointment of another day without a Call. An

emergency trip to the movie theater saved my sanity and that of my entire

family one day last December, I kid you not!

Best Wishes,

Shauna (29, AIH'86, Crohns'95, PSC'99, listed@Duke'99, MELD=17)

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[Guest guest]

Thanks, Shauna.

We have been trying to live normally for a few months. His

preliminary tests were at the end of February. We've been hounding

the transplant coordinator weekly since then.

I am heavily involved in my hobby - barbershop singing. I have been

singing for the past 12 years. In April 2003, our chorus qualified

for International Competition. It will be this October -- right

here in Indianapolis. We will be one of 33 choruses competing.

Having something outside work and family to focus on has helped

TREMENDOUSLY. I highly recommend spouses and significant others of

patients to have SOMETHING to focus on besides family and work

during this time. I don't know how crazy I would have gone if I

didn't have Sweet Adelines.

I'm going to try to plan a short (time and distance) family trip for

next month since it will probably be our last for a while. I'll

keep you updated.

The hospital has both our cell phone numbers so I guess we'll be

*sleeping* with them from now on! ha

Kathy