Meld scores and liver failure symptons

[Guest guest]

I have a question, my husband who is 58 yo was diagnosed with PSC in 05

he has had a meld score of 12 for about a year and a half. Within the

last 6 months he has consistenly decompenstated to ascites, HE, lost 50

pounds, no muscle mass, just skin and bones he weighs around 150,

vomitting at least 4 times on a daily basis, sleeps total about 8 hours

just wakes up for meds. Wednesday morning around 1am had to call an

ambulance he had severe HE, didn't know where he was, combative, fell

and incontinent, and vomitting. He is currently on a transplant list

but with a meld score of 12 probably won't be happening anytime soon.I

am curious can you have a meld score of 12 and still have all these

things happening to you? Is there anything that quantates your meld

score to progression of disease? He is currently on meds, actigall,

nexium,nadolol, xifixan, calcium citrate, fish oil, lasix, aldactone,

added lactluose and quanquin for cramps.He has had two major bleeds in

02 and 03 but for the most part was feeling pretty well until the last

few months. He has an appointment in the transplant clinic in 2 weeks

they mentioned doing and endoscopoy. He has had the mrcp yearly and

ultrasounds. I joined a few years back but I admit I have been

reading the post and replys I have learned alot regarding this disease.

any input would be greatly appreciated.

Becky Steffaic

[Guest guest]

It is up to the transplant team to move him up on the list. My husband was a 11 meld score and they reviewed his case and gave him a meld score

of 22. He didn't have any ascites just constant inflammation of bile ducts and stricturing and in and out of hospital constantlty. He was transplanted 8 days later in 2005. He is now doing great. He is working 10 to 12 hours a day and living his life as normal as he can.

We wish you luck and hope things will work out for the better soon. If we can help with any questions, don't hestitate to ask.

Tina

Meld scores and liver failure symptons

I have a question, my husband who is 58 yo was diagnosed with PSC in 05 he has had a meld score of 12 for about a year and a half. Within the last 6 months he has consistenly decompenstated to ascites, HE, lost 50 pounds, no muscle mass, just skin and bones he weighs around 150, vomitting at least 4 times on a daily basis, sleeps total about 8 hours just wakes up for meds. Wednesday morning around 1am had to call an ambulance he had severe HE, didn't know where he was, combative, fell and incontinent, and vomitting. He is currently on a transplant list but with a meld score of 12 probably won't be happening anytime soon.I am curious can you have a meld score of 12 and still have all these things happening to you? Is there anything that quantates your meld score to progression of disease? He is currently on meds, actigall, nexium,nadolol, xifixan, calcium citrate, fish oil, lasix, aldactone, added

lactluose and quanquin for cramps.He has had two major bleeds in 02 and 03 but for the most part was feeling pretty well until the last few months. He has an appointment in the transplant clinic in 2 weeks they mentioned doing and endoscopoy. He has had the mrcp yearly and ultrasounds. I joined a few years back but I admit I have been reading the post and replys I have learned alot regarding this disease. any input would be greatly appreciated.Becky Steffaic

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[Guest guest]

Tina--

I needed to read your posting. Thanks for helping me out enormously,

because I'm starting to go through a similar experience.

We rarely see criticisms of Mayo Clinic here, but the bloom has gone

off the Mayo rose from my standpoint. My MELD has gone from 9-13 in

the last year. Things are pretty miserable now, but the folks at Mayo

don't want to consider listing me, and any talk of a living donor

transplant is out of the question. But, the itching is driving me

crazy and Rifampin has stopped working. My spleen is so enlarged from

portal hypertension that the doctors here refer to it as " spleens " ,

and I think they are getting ready to put a plaque with my name on it

over my favorite ER bed in Reston...I have been visiting there every 3

weeks or so.

Meanwhile, the blood tests are deteriorating at an accelerating rate,

and my white cell count is down to 2.4...scary low. But, I can't get

the attention of anyone in Rochester because I'm not sick, according

to the almighty MELD score.

On the other hand, I spent much of the day yesterday at town in

DC. The chief of hepatology concluded that my MELD of 13 should be

bumped up substantially because my quality of life has been so

terrible, and she is pushing to do so. The shortage of organs in the

DC area is still an issue, but a living donor option was strongly

suggested. While it's not yet a hair-on-fire situation, everyone at

town understood that I have had two rough quarters, with no

improvement in sight, and they are taking ownership of the situation.

I'm glad that someone finally sees the urgency in all of this.

Bottom line: We all need to be our own advocates, and despite the

reputation of a given facility, if you're not getting satisfaction

there, find someone else.

Tom

PSC 1999

Crohns 2006

>

> It is up to the transplant team to move him up on the list. My

husband was a 11 meld score and they reviewed his case and gave him a

meld score

> of 22. He didn't have any ascites just constant inflammation of bile

ducts and stricturing and in and out of hospital constantlty. He was

transplanted 8 days later in 2005. He is now doing great. He is

working 10 to 12 hours a day and living his life as normal as he can.

>

> We wish you luck and hope things will work out for the better soon.

If we can help with any questions, don't hestitate to ask.

> Tina

>

>

>

>

> Meld scores and liver failure symptons

>

> I have a question, my husband who is 58 yo was diagnosed with PSC in 05

> he has had a meld score of 12 for about a year and a half. Within the

> last 6 months he has consistenly decompenstated to ascites, HE, lost 50

> pounds, no muscle mass, just skin and bones he weighs around 150,

> vomitting at least 4 times on a daily basis, sleeps total about 8 hours

> just wakes up for meds. Wednesday morning around 1am had to call an

> ambulance he had severe HE, didn't know where he was, combative, fell

> and incontinent, and vomitting. He is currently on a transplant list

> but with a meld score of 12 probably won't be happening anytime soon.I

> am curious can you have a meld score of 12 and still have all these

> things happening to you? Is there anything that quantates your meld

> score to progression of disease? He is currently on meds, actigall,

> nexium,nadolol, xifixan, calcium citrate, fish oil, lasix, aldactone,

> added lactluose and quanquin for cramps.He has had two major bleeds in

> 02 and 03 but for the most part was feeling pretty well until the last

> few months. He has an appointment in the transplant clinic in 2 weeks

> they mentioned doing and endoscopoy. He has had the mrcp yearly and

> ultrasounds. I joined a few years back but I admit I have been

> reading the post and replys I have learned alot regarding this disease.

> any input would be greatly appreciated.

> Becky Steffaic

>

>

>

>

>

>

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