new & I have some questions

[Guest guest]

Hello,

My sister was diagnosed with PSC almost 12 years ago - she is now

28. She has had 2 liver transplants - the most recent of which was

in June 2006. The 2nd transplant was difficult & recovery was slow.

She had a few OK months & then started showing increased problems

with nausea & headaches. She became diabetic almost 2 years ago

(mainly due to long-term steroid use). The nausea & headaches began

around the time she was diagnosed with diabeties. Her sugars are

easy to control & she ended up getting off of insulin just prior to

her transplant in June.

However, things have gotten very serious again. The liver numbers

are looking great, but her digestive system is not working properly.

She was admitted to the hospital in Philadelphia on March 5th with

severe dehydration, nausea, & vomiting. She had the usual

procedures...including an endoscopy. The endoscopy showed

UNdigested food and BILE in her stomach. She has not been able to

keep food down AT ALL and is constantly headachy & nauseous.

Has anyone else experienced anything like this? The doctors

actually injected botox into her stomach during an 2nd endoscopy to

try & " awaken " the digestive track. That was Monday & there has

been NO improvement at all.

Needless to say I'm frustrated with the doctors. They just don't

seem to know what is wrong & my sister is very depressed & just

plain SICK and they don't seem to make anything better after almost

12 days in the hospital. (she is at University of Pennsylvania as

she always is)

She has had TPN for about 1 week with intermittent attempts at

liquid trays etc....to no avail.

Oh my - and now they want to SEND HER HOME with TPN!!! I'm just

sooooo upset & concerned for her.

TPN!! with no explanation as to why there was/is bile in her stomach

or why her food isn't being digested. Plus, she's gained a TON of

weight since this 2nd transplant & it is NOT from overeating.

(obviously)

OK, wow, I'm really venting here. I apologize.

I'm just at my wits end.

ADVISE please.

thank you!

Gail

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