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Not eligble for transplant but very sick

My father-in-law has cirrhosis. He gets an endoscopy once a month to band his varices and stop the bleeding in his stomach. He has many episodes of vomitting blood. He gets transfusion 2-3 times a week. He has had very scary episodes of HE. He has fluid drained off of his stomach all the time. He had to quit work, is too tired to barely function, and has every single horrible complication you can have from cirrhosis. But yet his meld is only a 7? And of course that means he isnt eligble for a transplant.. but yet is slowly dying. Can anyone give me an idea of what to do??
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683231 tn?1467323017
As you probably know his MELD score is based only on several lab test results Bilirubin, Serum Creatinine, INR and Serum Sodium.

It sounds like your father is suffering from portal hypertension even though his other liver disease indicators are in lower range then the severity of his symptoms imply.

Have you spoken to his doctors about his situation and what they suggest? Why is he not eligible for a transplant. Could he also take beta blockers for the varicies? Is he taking a duretic to help reduce the ascities? Is he taking lactulose for his HE?

Unfortunately in ESLD there is not much to be done except treat symptoms and wait for a liver transplant. Even those on the list may die waiting for transplant. There are about 6,000 patients on the list at any given time and only about 1,600 transplants done annually due to not enough organs available.

What have his doctors told you?
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Is the only reason he is not eligible is because of his low MELD?
Yes he takes all of those medications, and has had the TIPS procedure done. He still continues to have low hemoglobin and need transfusions very frequently. He is on Lactulose but still has episodes of HE and has been on diuretics forever because of the fluid. No matter what he does, nothing helps. Drs say transplant is based on Meld and even though they agree he needs one they say there’s nothing they can do because of the score. It’s very frustrating.
Can you get a second opinion elsewhere?

I found this at UPMC web site  they are located in Philadelphia Pennsylvania.

“Who is a Liver Transplant Candidate?

Liver Transplant Eligibility: Referral Criteria and Requirements
When you have end stage liver disease, and no longer see results with medical therapy, you may be eligible for a liver transplant at UPMC.

At the UPMC Liver Transplant Program, we consider each person referred to our program – even if other centers have said that you are not a candidate.

We're committed to providing liver transplant services to anyone who will benefit, including those who are high-risk.”

Maybe give them a call even if you are no where near there they may have some advice is my best suggestion
They also suggest considering a living diner transplant if that is an option.

If there is a compatable, willing, healthy living relative they could donate up to half their liver. This allows the patient to be transplanted sooner.

“Living-Donor Liver Transplant Criteria
If you're at an earlier stage of liver failure, you may want to look into living-donor liver transplant. This surgery is a partial liver transplant, so you must have it before your liver disease is severe enough to require a full organ transplant.

The UPMC liver transplant team will work with you to help find a suitable living donor and help you both through the process.”
He has been seen at two of the top hospitals on the East Coast, along with his primary doctor here where we live, and all have told him the same thing. I will direct him to the info you have given me from that specific hospital. Thank you!
Have his specialists considered a living doner? Does he have a blood relative willing to donate?
For insurance to cover a liver transplant, he must first be put on the transplant list. If a family member decided to donate, he would still need to first be accepted on the list. So either way, that wouldnt matter at this point since he is not on the list.
I hadn’t heard that before about insurance not covering if not in the list.

Hopefully the other hospital I mentioned will have more information.
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