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End Stage Liver Disease and Diabetes

My boyfriend has been diagnosed with end stage liver disease and has been told he needs a liver transplant. He has had three esophigal bleeds where he has need blood transfusions in the past year. He also has diabetes type II At this time, he has no financial resources to proceed with even getting on a list for a transplant. He suffers from stomach pain, severe itching and muscle cramps. Can you tell me what his prognosis will be without the transplant. He also has Hepatitis C.
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683231 tn?1467323017
Really old thread to ask a new question to the group click the orange post a question link at the top right of this page.

New meds are available by prescription now have you tried to go that route?
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Avatar universal
clinical trials for hep c will not accept a person who has esophageal bleeds nor varices in other words this is where the bleeding is coming from.  I have tried and been denied.
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Avatar universal
Careful with bleeding and over the counter items. GREEN TEA, GINSING, MILK THISTLE, GARLIC, GINK BILOBA are NO NO's if taken daily. Some contain anti-coagulants like ibuprophen does, it can cause someone with very low platelets to bleed out massivly.

Just because its a "health food item" doesn't make it less dangerous.
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Avatar universal
It is early morning here in the states.  most people are offline by now, I am at work.  I received a transplant in '05 and my doctors did not tell me to limit my protein.  However, there are several post-transplant patients who regularly watch this forum.  You might want to start a new thread if you don't get a response.

I'm sorry to hear about your father and I will pray for you both.
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Avatar universal
Hello
My father was just diagnosedwith end stage liver disease. He is currently in hospital because he also has ulcerative colitis and it flared up and he had lots of bleeding etc.
He had to have an emergency operation to remove his large intestine as the bleeding was not stopping.  Well first it did and he was fine showered and shaved then the doctor gave him lactolose,
because of his liver. To this point though he had no idea he had a liver problem and was in fine health other than the colitis.
Anyways they gave him lactolose which of course was not taking into concideration the colitis
(the reason he was there) anyways he bleed so profusly he had to be give three blood transfutions,
and ruptured him large intestine.
He was complaning of stomach pain and the doctors ignored him, meanwhile his bowel was spilling into his abdomen.
Emergency surgey now he has a colostme bag.
So then the doctors told me he may live through this surgery but his liver is failing and he is going to die with in 6 months.
So I have been searching online for more information and have read that he shouldnèt eat protein,
Tonight I went to the hospital and they are force feeding him protein drinks.
His eyes are now yellow and he is very confused.
Much worse than before. And before the colitis flaring up he was fine last week he was putting in fences.
His also now septic from the fecal matter sitting in his abdomen for 36hrs.
I hope the doctors know what they are doing but really after seeing him get
progressively worse I really  don't.
Anyways question is should someone who is end stage be being force fed protein drinks?
I hope someone who knows responds before these people kill my father.
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Avatar universal
First I am sorry for everyone who is going through this.  It is my second time around the first my mom 7 years ago who died at 52.  Now my brother who is 39.  My brother had worked his whole life, but went into depression after my mother, father and little sister passed away.  His drinking became his coping.  Now he is at the end stages of cirrosis.  I can't get help or any financial assistance for him. Social Security denied him because they said his disease is alcohol related.  He looks horrible, and is not the same person anymore.  He is on lasik and other medications which go along with this.  But he stopped going to the doctors because he does not have any money to pay his bills.  I worry about him being alone at the house my mom once lived in and no one there to watch him.   I work 9 to 5 and can't be there 24 hours a day as much as I would like.  I know things do not look good for him, but my fear is that I may not be around when things go wrong.  Does anyone have any financial advise for me or resources.  He can't get dissability from work since he had stopped working when diagnosed.  Thanks. By the way this is in CA as far as SSI and financial assistance.
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Avatar universal
All of your advice is really helping.  To hate sin and not the sinner is something both myself and my boyfriend need to learn! You talked about switching to maryjane? Wouldn't that be harmful to the liver? He doesn't drink at all because of his diabetes.  He hasn't for years.
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Avatar universal
I've seen where doctors say marijuana is benign to the liver but there has to be some harmful chemicals in the smoke. Probably the best thing to do would be to eat it. I don't use it anymore myself because it causes me to have pain in the right upper quadrant. This makes me think it's not totally benign, but I seem to be unusually sensitive in that area anyway.
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Avatar universal
I agree with new sojourn, simple food is the best for a bad liver. Anything that comes in a box is full of all kinds of preservatives and **** that makes your poor old liver have to work extra hard. Fresh vegetables and fruits and grains are the best, limit red meats cause they stress your liver, too much protein and iron.
As for the beer, you have to stop that altogether, alcohol makes you 10 times more likely to progress to liver cancer. You'd be better off following new sojourn's lead and switching to maryjane, as long as you don't have to worry about **** tests at work, they tend to frown at that nowadays. :-)
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Avatar universal
wow, you've really taken this dragon (bull) by the horns. And I will try to emulate your lifestyle as much as I can.  I haven't changed much but switched from coffee to tea and cut out the beer as much as possible.  But I really like what u said about the emotional stuff.  That is all hitting me quite hard now.  I guess I always thought people would be there for me as much as I always was for them.  But if your a giver your a giver and if your a taker your a taker, and maybe people can't change.  I couldn't be more heartbroken and angry about the people around me.  Thanks for the info & good luck.
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Avatar universal
Well, the fewer toxins my liver has to process the better.  I'm not taking any chances, well a few-gotta have my chocolate, b/even then I prefer 85% organic cocoa-and try to eliminate as many toxins as possible.

I avoid toxic fumes and cleansers-so we have one room painted every time we do on vacation.  And never rehang the pictures.  No really, I use as pure and organic products and food that I can find.  We live in a small alpine college town so the air is purer, altho this causes hardships on my partner's part since he's a professional musician and far from the bright lights.

I eat a diet strong on whole grains, veggies, fruits etc and limit my red meat, using rice protein powders in my smoothies, eggs, cheese, fish and fowl, b/only sparingly.  I limit additives, transfats, mod. corn suryps, caffine, fast food, any junk food, etc.

I take massive amts of vit and herbal supplements.  Of course milk thistle, b/SAMe is vital.  I drink lotsa green tea w/ginsing, lemon and organic honey-unless impossible, like traveling but then I bring my own teas and buy local honey.

I like very simple food, simply prepared w/minimal sodium, fats and carbs and in small amts.  Fluids are very important to keep your whole system constantly eliminating toxins so the don't build up.

Physical exercise-walking and weight work-is vital, to keep your blood moving.  Rest is a must.  Fatigue itself stresses the body and creats toxins the liver has to remove.

The hardest is eliminating toxic situations and people.  Emotional stress is the hardest.  So meditation is helpful.  Letting go and forgiving is important.  I had to learn to hate the sin, not the sinner.

We have drastically altered our life style.  Fancy dinners w/good champagne are out.  B/we now book apts instead of hotel rms when we travel, stay in one place and shop and cook.  I stay home more than my partner,b/that's by choice, my choice.  I like to spend my energy carefully now.
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Avatar universal
What do u do to live the liver friendly life?  Does milk thistle have anything to do w/ it.
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Thank you so much for all your quick responses!  He had just been approved for Social Security Disability, but since it is not SSI, he won't be eligible for Medicare for another 24 months. The social worker at the hospital moved this process along.  I will go to the links at Center Watch now and check that out.  Thanks again!
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Avatar universal
The Department of Health and Social Services department will have information on eligibility for Medicaid. If he applies for SSI, he automatically qualifies for Medicaid when approved.  He should check at the Social Security office for SSI.

Medicaid offers many ways to qualify, even if the person owns resources.  They can qualify under a dissability, even if Social Security doesn't come through.  SSI is an income, not a work related benefit.
Some providers do pro bono services also.

First stops should be SSI and Medicaid.  The Social Workers can assist with these applications, as suggested earlier.  Best wishes and keep in touch
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Avatar universal
I would suggest that he see about treatment for the hep c and stablizing his diabetes.  I've done the bleeding thing and spent 6days in icu.  I was given months to live.  B/I tx'ed, and cl'ed the hep c  May 2002  and resloved any other underlying health-incl dental-issues and now am too healthy for a transplant, altho w/decomp liver history, I'm still considered ESLD(end stage liver disease.)

I also totally overhauled my lifestyle to live the most 'liver friendly' life as possible.

I have no insurance, b/qualified for free meds.  I didn't use any other MD support except for blood tests every 2 mo after I cl@3wks.  I also didn't bx or have any other tests or procedures so only had 5 doc office/blood test visits, which we paid for in cash.  So, I spend about $3000.00 over the course of a yr.

So, start where you can and maybe you'll be able to work something out.  The life expectancy after the bleeding isn't good w/o some sort of intervention, they talk of less than 2 yrs, so don't wait around wringing your hands.
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Avatar universal
Your boyfriend must have been in the hosp. for all these things.  Didn't he talk to a social worker to say he has to resourses.  Can he apply for medicaid or disability.  My bill is getting taken care of by the state and I figure it's pretty high by now.  It's a pain filling out all the forms but worth it.  Call your Board of social services offices for your county.  Good luck to you.
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Avatar universal
There is no way that I could predict his life expectancy without transplantation. Though sometimes doctors can predict with some specificity most often they are reluctant to do so and often times they really don't know how long someone will live or how quickly the liver will deteriorate to the point of failure. My advice to you is to contact a transplant center close to you and arrange for an appointment for him to be evaluated. Generally his doctor must refer him and frequently the referring doctor must be a GI or hepatologist. I personally know several people who received liver transplants who did not have means. The government will pay for the surgery if you qualify. But first you must get a referral and explore this with a transplant center to get the necessary information so as to proceed. This can be a lengthy process and so I would suggest that he (and you) get started soon. Don't allow him to just accept his situation because he is without money. He needs an advocate and it looks like that advocate might be you. So push this thing if he would like a chance to live a longer and more fulfilled life. It can be done without money. I've seen many people get livers. One who comes to mind was not only without means but he was also on methadone from a previous addiction to heroin and he got a liver and is doing well 3.5 years later. So get busy if that's what he really wants. Good luck. Mike
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Avatar universal
sorry to butt in to this thread but it coincides with Hep C desperate people...there are some new trials starting up in Seattle WA, Colorado, NY, and TX.  

http://www.centerwatch.com/patient/studies/stu42306.html

Also there are some for Thymosin in many states, go to the Center Watch site and click on Gastroenterology and then click on Hepatitis, it has lots of free trials you can get into where they provide the medicines and testing.  
You can email them -   ***@****    they are located in Texas. (but hold trials all over the US)  (www.centerwatch.com)
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Avatar universal
oh man o man....so sorry to hear this....i really have little or no info for you, but just wanted to reply so you know there is someone here.....someone WILL respond shortly to you ,who has far more info and knowledge then i...i just wouldn't want to venture a response as this is so serious i don't want to suggest anything, but someone will...garenteed just keep checking back and hang in there....
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