Update from Barby's CaringBridge site

[Guest guest]

http://www.caringbridge.org/visit/barbaranordgren

THURSDAY, OCTOBER 11, 2007 06:33 AM, CDT

Received a call on Oct. 5th from the tx coordinator letting me know I received

some exemption points from UNOS which bumps me up to 1st on the tx list at KUMC.

Good news!

Still having problems sleeping...........

[Guest guest]

Thanks for sharing the update with everyone. I wrote it when I couldn't sleep - again. Have any of you been told our meld scores are private and not to be told to anyone? One of my docs called last week. Apparently someone on this forum saw I had given my meld score and was upset and told him. I definitely didn't mean to offend anyone but had no idea the meld was private especially since we can figure it out ourselves. Blessings, Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, listed 9/18/07married 28 years , 5 sons, 2 daughters in law, 1 granddaughter born 6/06 and 2 golden retrievers

[Guest guest]

Barby wrote:

>

> Have any of you been told our meld scores are private and not to be

> told to anyone?

I've never heard that from anyone anywhere. Many people here (including

myself) have shared our MELD scores many times. There may be some

reasons for keeping it private, but the person most concerned is the

patient and it's their responsibility to decide how to use their own

medical information.

Did they say specifically why they didn't want you to share your MELD score?

athan

[Guest guest]

Did they say specifically why they didn't want you to share your MELD score?>>>> No but from listening to the doc he made it sound like other patients might be jealous/upset that maybe their score isn't as high. I really don't have a clue and was so shocked by the call that I didn't ask. I don't want to get on the bad side of my tx team so I just listened and then felt guilty the rest of the day. Blessings, Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, listed 9/18/07married 28 years , 5 sons, 2 daughters in law, 1 granddaughter born 6/06 and 2 golden retrievers