live donor and roux en Y, transplant evaluation tests

[Guest guest]

athan, I am also seeing Dr. Raiford and agree with you, he's

great. I think I remember us going over the connection several

years ago. Dr. Raiford has been tremendous through this all.

Interesting I hadn't thought about asking him regarding what or how

much to discuss with the kids nor did I know Vanderbilt wasn't doing

live donor transplants. I keep meaning to ask whether I was eligible

for a live donor transplant since I had a roux en Y

hepaticojejunostomy when an ERCP went bad or rather the bile duct

system sprung a leak during an ERCP. So much for the out patient

day procedure - ended up in a two week hospital stay. That was when

I was diagnosed with PSC.

Does anyone know - can you still have a live donor if you've had a

roux en Y? Wasn't sure whether I'll need the whole bile duct system.

Dr. Raiford indicated to me as well that the actual transplants are

going to patients with MELDs in the 20s, but they start the listing

process in the upper teens. This way if things accelerate they are

prepared. Looking at the delay in insurance approval, I can see

why. So far I've been waiting two weeks to get the evaluation tests

scheduled because of the need for insurance approval. I guess they

approve the whole transplant before they start with the evaluation

tests. Anyone have a good site to go to regarding the evaluation

tests centers typically run you through?

One more question for the group - as I seem to be getting worse I

get horrible gas which the Dr. said was due to the food not properly

being digested in the stomach so it reaches the bowel not totally

digested - definately some foods seem to trigger it more - heavy fat

content foods. I don't quite know what IBS is but I'm wondering if

I'm starting to get it? Does it feel like you cramp up, have a bunch

of gas, with small spastic bowel movements to then almost feeling

like you are having dry heaves out of your bottom? I can't think of

a less gross way to explain.

Sorry for the diluge of questions but I can't think of a better

spectrum of live through it experts.

> I see Dr. Raiford at Vanderbilt, and I'd recommend him (and the

liver

> transplant program in general) highly. Of course I haven't had a

> transplant yet, so there is a limit to what I know about the

program,

> but so far they've been very good at meeting my needs, and at

treating

> me like a person rather than just a disease!

>

> I live about 3.5 hrs away from Vanderbilt (Knoxville area), but I

have a

> sister who lives close to Nashville, so I usually just stay at her

place

> when I have appointments over there.

>

> A couple of other points about Vanderbilt... when I last asked,

they

> said that transplants were going to people with MELD scores in the

20's

> (that was a couple years ago)... I'm not sure if ton is in

a

> different region, or if there is a significant difference between

the

> MELD scores there and at Vandy... you might check though.

>

> Also, if you are interested in the possibility of a living donor,

> Vanderbilt's not doing them right now (as of about 9 months or a

year

> ago). That's not really a problem for me at this point (my MELD

score

> is about 10) but if I decide to look into it in the future, I'll

> probably have to find a different center.

>

> All things considered though, I've been extremely happy with

Vanderbilt

> in general, and with Dr. Raiford in specific. Actually now that I

think

> of it he'd be a good person to ask about what to tell the kids...

he's

> always been very interested in my family and my kids, and is easy

to

> talk to about things like that.

>

> If there are any other specific questions you have, let me know!

>

> athan

[Guest guest]

Cinda

Hello JD here. I saw the piece in IBS (Irritable Bowel Syndrome) vs. IBD (Inflammatory Bowel Diseases). The symptoms you describe could point to either. Something like 70% of us PSC types also end up with IBD. The diseases which make up this generic term are Ulcerative Colitis and Crohns disease. IBS which is also a pain but is more limited in terms of not causing serious physical damage to the digestive system, but it can sure make you miserable. There are drugs, diets and many options for all the above. From where I sit, it is worth a serious medical workup. Please know going in that some of these diseases are a bit tricky to diagnose. I had symptoms and medical attention for a year or two before the "right doc" made the diagnosis in 2 appointments.

Here is hoping you have none of the above.

Your Southern Illinois Neighbor

jd

UC 1973, Jpouch 2000, Pouchitis 2001, PSC 10-04

ston City IL

krmpotich@...

[Guest guest]

Dear Cinda;

A good article on liver transplantation can be found at:

http://www.emedicine.com/med/topic3510.htm

It gives a thorough description of the " evaluation and workup of

prospective LT recipients. "

I have not been able to find a good answer to your question of

whether a previous Roux en Y precludes a living donor liver

transplantion. I would tend to think it would not because the above

article indicates that in living donor transplants ... " In most cases,

the bile duct anastomosis is accomplished by Roux-Y

hepaticojejunostomy (although sometimes performing duct-to-duct

anastomosis is possible). " It would seem that to me that an existing

Roux-Y would not prevent substitution with another. But you doctors

would be the best persons to consult about this.

Best regards,

Dave

(father of (19); PSC 07/03; UC 08/03)

>

> athan, I am also seeing Dr. Raiford and agree with you, he's

> great. I think I remember us going over the connection several

> years ago. Dr. Raiford has been tremendous through this all.

> Interesting I hadn't thought about asking him regarding what or how

> much to discuss with the kids nor did I know Vanderbilt wasn't

doing

> live donor transplants. I keep meaning to ask whether I was

eligible

> for a live donor transplant since I had a roux en Y

> hepaticojejunostomy when an ERCP went bad or rather the bile duct

> system sprung a leak during an ERCP. So much for the out patient

> day procedure - ended up in a two week hospital stay. That was

when

> I was diagnosed with PSC.

>

> Does anyone know - can you still have a live donor if you've had a

> roux en Y? Wasn't sure whether I'll need the whole bile duct

system.

>

> Dr. Raiford indicated to me as well that the actual transplants are

> going to patients with MELDs in the 20s, but they start the listing

> process in the upper teens. This way if things accelerate they are

> prepared. Looking at the delay in insurance approval, I can see

> why. So far I've been waiting two weeks to get the evaluation tests

> scheduled because of the need for insurance approval. I guess they

> approve the whole transplant before they start with the evaluation

> tests. Anyone have a good site to go to regarding the evaluation

> tests centers typically run you through?

>

[Guest guest]

I don't have the answer either, but I do know that when Todd had his

living liver donor transplant his bile duct anastomosis was

accomplished with Roux en Y. The Starzyl Transplantation

Institute does many living donor transplants and they could probably

answer that question for you. Their website is www.sti.upmc.com and

they do have a link to contact them through email. Maybe they could

answer that question for you.

After reading our fellow support group member Shauna's struggle(and

heartbreaking story) with not getting a transplant before she became

so sick makes me so thankful and grateful that we chose and were

able to follow through with the living donor transplant route for

Todd.

Joanne (mom of Todd, 18, psc 12/01, crohns 1/02, tx twice 12/03 and

living life to the fullest as any " normal " 18 yr old in 12/04 -

minus the alcohol consumption as a freshman in college)

rhodesdavid@i...> wrote:

I have not been able to find a good answer to your question of

whether a previous Roux en Y precludes a living donor liver

transplantion. I would tend to think it would not because the above

article indicates that in living donor transplants ... " In most

cases, the bile duct anastomosis is accomplished by Roux-Y

hepaticojejunostomy (although sometimes performing duct-to-duct

anastomosis is possible). "