Ken's evaluation @ Baylor

[Guest guest]

Ken’s evaluation

@ Baylor went almost as planned.

The Coordinator canceled the Hepatologist appointment…..saying we

had just seen him! Ahhh, no, we saw

him – 2 years ago…..so we have to go back to Dallas

next week for the Hep visit.

Ken was stuck 13 times

in 4 days, the majority of the time; they had to “dig” for a

vein. Needless to say, both arms

& hands are really bruised.

Heart is good, kidneys are good (except one is being squished by his

spleen). Spleen is huge, liver cirrhosis,

& ammonia is still elevated, MELD 12.

No surprises there, but finally, they know what we have known for a long

time! Ken

liked his Coordinator (I’m old school, so wished she had spit out the *~^*

gum, wouldn’t mind if the Cardiologist cut off his pony tail either!)

I did learn that, Baylor does NOT limit protein (from

meat) even with HE. They reasoned

that only 2% of the tx population actually benefits from the reduction &

they believe that “saving muscle mass & maintaining weight” is

far more important. They backed this

line of thinking up with what they say is “an above average survival

rate”. So Ken

will be adding meat protein back into his diet. His normal weight was 175; it increased

earlier this year to 205, 212 pounds this week. The last MRI & US (done at home)

didn’t see “significant fluid”, but they (Baylor docs) agreed

it’s there and will know more when the tests come back.

Coordinator said in 2 weeks they will present his case

to the tx Committee & vote on his listing, but she said there was no doubt

in her mind, that he will be listed.

The only shocker came during the visit with the

transplant surgeon (we saw Dr. Chinnakotla.) Ken

asked him “when” & the doctor said “SOON”! Ken

said “I want to plan my life, so give me your best professional opinion,

a year or two”? (I know what Ken

meant; he wants to go hunting this fall & is concerned about investing

money for a new crossbow & not being able to use it.) The transplant surgeon said “don’t plan your life….. I won’t give you a set date,

but SOON”. That

blew our minds. Soon?? Doc went on to say that they (Baylor)

gave away 2 AB livers earlier this year……one to Houston & one

to Oklahoma, because they didn’t have anyone listed with AB blood type. Right now they have 2 people listed with

AB blood (Ken would be #3), so it might not

take very long until Ken’s tx. Yikes!! We drove home in silence…… Ken

has thought about it & now says he’s ready for the tx.

So much is running through (TJ’s & mine)

minds. We’ve wanted Ken

listed, but transplant so (what we think is) early…..? Wait till later? But….. will there be an AB liver when

it’s really needed? Only 3%

of people have AB blood type. How

many of those will pass away & donate in time for Ken

IF he’s really sick? Cancer

is a concern, we believe Ken has had PSC since

1991. Doctor said ( & everyone

knows this) the healthier you are going in, the healthier you’ll be after

surgery. So we wonder. “Soon” could mean when

Baylor gets the third AB liver donated!

One thing I didn’t agree with (but you’d

be proud of me…..I kept my mouth shut), tx surgeon said 10% chance of PSC

returning. It’s higher, but

what do I know?

Well, that’s the news from Texas,

sorry this is so long. Will try and

scan an MRI picture they gave Ken later today.

Barb in Texas