Re: Father with PSC

[Guest guest]

There's always a chance.

But IMHO, with a MELD of 10, the best chance for getting a tx sooner

rather than later is living donor.

Pam

(mom to Quantell, 15, dx 1996, tx 2001)

[Guest guest]

Unfortunately the odds that your father will receive a cadaveric liver

through UNOS with a MELD of 10 are extremely low. If he had a living

donor available, transplant centers with living donor programs would

be ready to transplant him as soon as the donor is approved.

I am concerned that your dad does not seem to be getting treatment for

the chills, weight loss and other side effects of liver disease that

he is experiencing. Is he taking anything for the itching? Rifampin

has given relief to many here. Is he getting adequate nutrition? Check

for the levels of ADE & K (fat soluable vitamins). Has he been advised

to restrict salt intake? Prescribed diuretics? Do you know if his

albumin level is low? Has the cause of the chills been identified and

treatment started? If his liver is maintaining a relatively low

bilirubin and INR, and creatinine isn't elevated, often getting all

the other little problems under control will cause a big improvement

in how he feels.

Tim R, LTX 1998, recurrence 2002, relisted Feb 2005.

> ... My dad was diagnosed with PSC around 1 and a

> half years ago. At this point, he is realy sick. He's very tired,

weak,

> itching, retaining water, shaking, cold and lost a ton of weight.

The

> doctors agree that he is extremely sick but,his meld score is only

10

> so he is much sicker that his meld score shows. They admit that he

> needs a transplant at this point. The've gone to a few centers to be

> put on the list. Is there any chance that he could get a liver with

> this situation? Thanks

>

[Guest guest]

>Thanks for your responses. He is taking tons of medicines. He is on

diaretics for the water. Not really helping . They think kidneys now

not working do well also. He has a no salt diet for a while now and is

on medications for all other problems, but, not really helping him. We

have considered a living doner but, he refuses to takr from us because,

theres a risk for the doner. Can you tell me more about that? Is there

any chance that a center would realize howw sick he is and give him a

liver?

> There's always a chance.

> But IMHO, with a MELD of 10, the best chance for getting a tx sooner

> rather than later is living donor.

>

> Pam

> (mom to Quantell, 15, dx 1996, tx 2001)

>

[Guest guest]

The center can appeal to UNOS for a change in your father's MELD, based

on otherwise uncounted factors.

But that doesn't mean UNOS will agree, or that the change will be

enough to push him to the top of the list.

Living donor can be a scarey thought. But the science has come a long

way in a short time and the risks to the healthy donor are dropping.

There are living donors represented here. You could check the archives

for some play-by-play reports.

Pam

(mom to Quantell, 15, dx 1996, tx 2001)

[Guest guest]

I am sorry to hear that your father is not responding well to the

medical treatments he is on. As others have said it is possible for a

transplant center to appeal for additional points when the MELD score

does not reflect the severity of a patient's illness. But additional

points may not put him near the top of the list. If he refuses to

consider a living donor transplant, there may not be much that you can

do to help him.

Tim R

>Thanks for your responses. He is taking tons of medicines. He is on

> diaretics for the water. Not really helping . They think kidneys now

> not working do well also. He has a no salt diet for a while now and is

> on medications for all other problems, but, not really helping him. We

> have considered a living doner but, he refuses to takr from us because,

> theres a risk for the doner. Can you tell me more about that? Is there

> any chance that a center would realize howw sick he is and give him a

> liver?

[Guest guest]

> >Thanks for your responses. He is taking tons of medicines. He is

on

> diaretics for the water. Not really helping . They think kidneys

now

> not working do well also. He has a no salt diet for a while now and

is

> on medications for all other problems, but, not really helping him.

We

> have considered a living doner but, he refuses to takr from us

because,

> theres a risk for the doner. Can you tell me more about that? Is

there

> any chance that a center would realize howw sick he is and give him

a

> liver?

> > There's always a chance.

> > But IMHO, with a MELD of 10, the best chance for getting a tx

sooner

> > rather than later is living donor.

> >

> > Pam

> > (mom to Quantell, 15, dx 1996, tx 2001)

> >

>

>

>

>

>

>

>

[Guest guest]

Lolli We live in Utica NY and go to Boston to Lahey clinic. Pittsburg has don alot of the people in our tx support group. If you want contact info let me know and I will get it for you. Marti lollip111 wrote: > >Thanks for your responses. He is taking tons of medicines. He is on > diaretics for the water. Not really helping . They think kidneys now > not working do well also. He has a no salt diet for a while now and is > on medications for all other problems, but, not really helping him. We > have considered a living doner but, he refuses to takr from us because, > theres a risk for the doner. Can you tell me more about that? Is there > any chance that a center would realize howw sick he is and give him a > liver?> > There's always a chance.> > But IMHO, with a MELD of 10, the best chance for getting a tx sooner > > rather than later is living donor.> >

> > Pam> > (mom to Quantell, 15, dx 1996, tx 2001)> >> > > > > > >