Thankful!!!

Hi Dorothy! Happy Thanksgiving to you :)

How are things with Bill since he was placed on the TP list? I know Bill was in the mid-teen MELD with complications. Would love an update on both of you.

For us, Themister continues to hang in the mid-teens and is "stable". Stable sure is not healthy, or well :) Stable often feels like being stuck. It was two years ago we were told his MELD moved off normal and that his veracies would require TIPS to avoid more bleeds. Since then, life has been difficult to accept much of the time, but here we stay.

I do hope you and Bill are well enough for your situation, and not living in ER's and hospital rooms too often. Big Hugs

Hi Dorothy...you had been back and forth to the hospital last you checked. Have things eased off. Mike was in the hospital a week a month for months before transplant. I hope things are more settled. Hugs, ML

Dorothy, So sorry to hear this. I understand what you are going through as his wife, and trying to carry on with a terribly sick husband. My heart goes out to you both.

The pain meds really can make HE scary, and I understand not wanting to RX them for someone with HE.

Where is Bill's MELD now? Is he getting close to the top of KY's transplant list? Not sure the MELD they transplant at in KY. Thanks for updating us, and hope you will keep in touch. We care. Big Hugs

I had a MELD score of 13-17 for 4 years; HE, no energy, felt awful. Then in less than a month, MELD went to 18, then back to 16, then 18 and a week later 24. Three days later I got the "call."

Don't lose hope. I was never told where I was on the list. It's better (in my opinion) not to know.

"A watched pot never boils."

Oh, Dorothy, so sorry Bill is in pain. Themister has no pain. That would be so difficult. A bit about themister's journey.

Healthy, hard working man for 40 years. No health problems. DX with Hep C in routine physical 2005, and began the liver journey. He appeared healthy with small hiccups, until 2010.

Themister had many vericies banded. EGD's every 6 months for 5 years.

Hep C treatment #1 2005-06 ....FAIL.

Gastric bleed in 2010.

Infection in the fluid. An emergency surgery for an infection in 2011. 50/50 shot of survival. He survived :)

Hep C treatment #2. .....SVR. Success!

Dx with vericies in cardia Nov. 2012. Confirmed Dec 2012. ESLD, MELD 10, 11, 12...Nov-Jan 2013.

TIPS=Jan 2013. HE began in ICU. MELD 14

Mayo transplant list, July 2013. MELD 16

Broke his shoulder, end July, 2013. Pain meds spiked hallucinations. Ditched the pain meds after realizing they were the problem. But HE was never gone entirely since TIPS.

Hepatic seizure Jan 2013. His HE was bad, but the addition of Zoloft by TP team turned out to be bad juju for themister. Quit Zoloft. MELD 14

The TIPS did bring on the HE, but he no longer requires EGD's, does not have bleeds, he does have small ascites on scan, but no taps. Has edema and entire body swelling, even on less than 1,000 mg of sodium per day. His kidney numbers are good still. So MELD is low.

Off and on jaundice

Meds:
Lactulose 30 ml. 4 x per day....more as needed
Xifaxan 550 mg. 2 per day
Lasix
Aldactone
Nexium


Themister has a benign cyst that came during interferon-riba treatment 2011... in his neck. It was drained, filled back up. He also has 2 cysts on the liver, and some on the pancreas Mayo is watching.

MELD has been mid-teens for 2 years.
Yes, many linger like this for years, and he is now one of them. Hard to be patient.

Themister is 64. How old is Bill and what meds does he take?

Big Hugs Dorothy, you need all you can get.

Looks the same as my guy, except for the propranolol they deleted. After TIPS, if one has normal blood pressure, they said it was no longer needed.

Themister needs 4 doses every day of lactulose, and more if things are not moving. Have you tried to increase that? Once themister got his mind back, he said he hated what happened. He told me all of 2013 was like a clump of time here, a clump there, and he has forgotten things like holidays. We sold a house, bought a house, moved 1,000 miles. The poor man is very sketchy on all of the detail. And he has bad days, or bad weeks still. But so much better than 2013.

You try to enjoy your Thanksgiving Dorothy. And please tell the same to Bill. Big hugs to Bill for me, as well. Big Hugs to you, every day.

What good news, Dorothy! Two months of less HE days for Bill. (and you). I hope he gets exception pts. You are at UK, right? Would love to know what MELD they transplant.
Hopefully, he will get bonus pts, and they will be enough to move Bill to the top of that elusive list. He has had such a hard road. So have you.

I suppose his MELD is still sitting in the mid teens? Keep us in the loop. So good to hear from you. Big Hugs

Hubby's. Meld stays in the mid teens. Yes we go to UK . I think its a meld of 25 or more they transplant. They don't like to give a straight answer on that. They say things like it depends on his overall health.

Hugs to all
Dorothy