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ESLD questions please help!
My dear friend was diagnosed with ESLD in October. He had hepatitis when he was 18. He’s 63 now and all these years has been damaging his liver. Unbeknownst to him. Here we are. He has been suddenly having to have his acites drained 2x a week. His initial blood work showed amphetamines in his system. Since then he has taken no drug that could cause him harm. His hematologist was vague when we went to see him once. He said he didn’t have his MELD score handy. I called back two days later and left a message. I didn’t get a response until I called again. The score is 20. The assistant said 15 is where you begin to get on the transplant list. I asked how sick 20 is. Again very vague but the asst said it can go to 49 or 50. He is mostly in bed, no energy at all. He is on lactulose, spiralactone, 50 mg and 40 mg of Lasix. I’ve heard different prognosis’s from different people. The doctor only said much of the desire has to come from within him. Ok but not very technical. Also he said bc of the amphetamine he has to have no drugs illegal or not in his system for six months. Will he make it that long. Today it’s 5 months away. Is there anything I can do to improve his health? He’s on a salt restricted diet but that’s it as far as nutrition. I’m so worried. I have no idea if any of his liver is functioning at all. The Dr. Is not giving him meds to cure the hepatitis bc he said may be better to wait until he gets a new liver. Six months is t going to make a difference. Really?? I was not impressed by his hepatologist. I am looking into changing his insurance to one Mayo accepts. We live in Phoenix. It’s so difficult watching a once very strong man look like he’s wasting away. His muscles seem to have evaporated. He’s gone from 174 to 150 in a short period of time. He doesn’t have cancer of the liver, if there is an up side I suppose it’s that. Can anyone please tell me what to expect? He doesn’t want false hope but he seems very depressed. Thanks for any information you can help with. My heart is breaking over all of this. It’s happened so fast.
Unfortunately because of his drug use most transplant centers will not put him on the transplant list. It sounds like he is getting proper care. Most transplants occur with a MELD score above 30 and higher. As far as I am aware the scale only goes to 40.
Did you mean he is being seen by a hepatologist? Is his doctor associated with a liver transplant center? They are best equipped to follow a patient like him with ESLD.
Patients can be registered with multiple transplant centers however they have to be able to travel to the other facility within a short time. Different regions have different MELD scores that patients receive transplants depending on how many patients are in that region.
Being approved for a liver transplant is a major process with evaluations of patient’s overall health as well as their ability to have caregivers post transplant to health insurance for survival post procedure. About 16,000 people are listed waiting for transplants with about 6,000 transplants being performed. Sadly many people die waiting for a compatable organ.
You said he had Hepatitis which form? Does he have Hepatitis C?
As ill as he seems many patients can hang in there for long periods of time. Even if he was listed today he would likely still need to get to a MELD above 30 before he would be high enough to receive an organ.
Wishing you friend all the best.
Did you mean he is being seen by a hepatologist? Is his doctor associated with a liver transplant center? They are best equipped to follow a patient like him with ESLD.
Patients can be registered with multiple transplant centers however they have to be able to travel to the other facility within a short time. Different regions have different MELD scores that patients receive transplants depending on how many patients are in that region.
Being approved for a liver transplant is a major process with evaluations of patient’s overall health as well as their ability to have caregivers post transplant to health insurance for survival post procedure. About 16,000 people are listed waiting for transplants with about 6,000 transplants being performed. Sadly many people die waiting for a compatable organ.
You said he had Hepatitis which form? Does he have Hepatitis C?
As ill as he seems many patients can hang in there for long periods of time. Even if he was listed today he would likely still need to get to a MELD above 30 before he would be high enough to receive an organ.
Wishing you friend all the best.
4 Comments
Thank you for your answer. Yes, hepatitis C.
With his situation treating hep c won’t help his liver at this point it could just leave him in limbo very sick but not sick enough for a transplant.
If he is eligible for a transplant they can treat him after the transplant to cure his hep c and keep his new liver healthy.
First he will need to stay clean long enough to get on the transplant list.
As part of the process he will have to have psychological evaluations about the whole transplant process, his willingness to stay clean, to be compliant with his post transplant anti-rejection meds and multiple doctor appointments. He will also have lots of testing to determine he is in general healthy enough to survive the procedure. They will also want to evaluate his social situation will there be someone to care for him post transplant after he is released from the hospital. There will also be discussions with financial counselors about how to obtain financial aid and insurance coverage. They may also send him to a nutritionist specializing in best diet for those with ESDL and also post transplant.
Once on the list for transplant patients who develop HCC while waiting patients are given extra points that move them up on the list. So in some cases liver cancer can be a benefit if it allows the patient to get a transplant sooner while in generally better health than suffering the symptoms of very advanced liver failure.
I wish him all the best and that he is able to get listed in time and is able to get a transplant. Wishing you my best as well he surely needs a good friend right now.
If he is eligible for a transplant they can treat him after the transplant to cure his hep c and keep his new liver healthy.
First he will need to stay clean long enough to get on the transplant list.
As part of the process he will have to have psychological evaluations about the whole transplant process, his willingness to stay clean, to be compliant with his post transplant anti-rejection meds and multiple doctor appointments. He will also have lots of testing to determine he is in general healthy enough to survive the procedure. They will also want to evaluate his social situation will there be someone to care for him post transplant after he is released from the hospital. There will also be discussions with financial counselors about how to obtain financial aid and insurance coverage. They may also send him to a nutritionist specializing in best diet for those with ESDL and also post transplant.
Once on the list for transplant patients who develop HCC while waiting patients are given extra points that move them up on the list. So in some cases liver cancer can be a benefit if it allows the patient to get a transplant sooner while in generally better health than suffering the symptoms of very advanced liver failure.
I wish him all the best and that he is able to get listed in time and is able to get a transplant. Wishing you my best as well he surely needs a good friend right now.
Update: he is finally going to have the tests to make sure he can handle the transplant. I am cautiously optimistic. It’s been a long road thus far, and he isn’t getting better but hanging tough. Please keep him in your thoughts . There’s a lot to be said for the power of positive thinking. Thanks.
Best wishes for you and your family good luck
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