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ranbrew
New Member


Date Joined Mar 2010
Total Posts : 7
   Posted 3/12/2010 11:52 AM (GMT -7)   
My 30 y/o son is in liver failure due to ETOH abuse.  He drank heavily for 10 yrs.  He has been hospitalized several times for alcoholic Hepatitis.  In the ICU twice. He has been alcohol free x 7 mos now and is living with us in Illinois.   His MELD score is 22 but he keeps going to work at his PT min wage job.  Yesterday we went to NW Hospital in Chicago, they want to put him on the transplant list now.  It was a whirlwind of MDs SWs Psychiatrists nurses, tests etc.....  We are both overwhelmed.  I dont know what to do? He is so scared.  Unsure of what to expect etc .  Thanks for listening.

mathman
Regular Member


Date Joined Jan 2010
Total Posts : 31
   Posted 3/12/2010 12:47 PM (GMT -7)   
Very sorry about your son. :( Good on him for staying off the booze. Youth is on his side at least. I would suggest that he joins online support forums. This one, DailyStrength, and MDJunction are all fairly active and have many other patients who share tips and experiences with each other. Here are a couple good websites to check out in the mean time, made by patients.

http://livingwithcirrhosis.weebly.com/
http://livingwithliverdisease.ning.com/profiles/blog/list

If he follows doctor orders and takes very good care of himself his condition may improve. There's hope, just take it one day at a time. And be mindful of his condition... tiredness and irritability come with the disease, if he displays these.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/12/2010 1:07 PM (GMT -7)   

Ranbrew, welcome to the forum.  I'm sorry your son has ESLD.  The good news is that he is on a transplant list!  Most caregivers and patients come here trying to get on one.  He will absolutely be a new person after transplant, if he doesn't reject the liver.  Of course, he will get anti-rejection medication.

Do a search here for transplant and you will find a number of posts.  The most important thing is for your son to stay sober and to do everything the transplant team asks of him.   Does he go to AA?  Most places require 6 months of documented AA attendance before they will list an alcoholic for transplant.

It might be best for him to apply for SSI and stop working.  He will not be able to work for awhile after transplant anyway.  He needs to rest his body.  Once he has recovered from transplant, of course he can return to work.

If you have questions, we will try to answer.

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 3/13/2010 12:17:24 PM (GMT-7)


ranbrew
New Member


Date Joined Mar 2010
Total Posts : 7
   Posted 3/12/2010 2:06 PM (GMT -7)   
Thank you for responding,  There is no question of my sons sobriety for the last 7 mos by his family or physicians thank God.  I guess my questions are Will he likely lead a healthy normal life after transplant?  Does he have to go on disablity?  How do we pay for the post transplant drugs?  SOOO MUCH to think about.  I have heard some people can still cont to improve up to 18 mos after ETOH liver damage.  It has only been 7 mos.  Should we wait to go on the list?  Also they are starting a clinical trial in Virginia for Hepatocyte Therapy.  Basically they inject Liver Cells into your body and your body grows its own new Liver???!!!  I am overwhelmed!!!!

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/12/2010 4:13 PM (GMT -7)   
Hello Ranbrew and welcome. With a meld of 22 don't wait. Get him on the list as soon as possible. While he's on the list you can check out any other options, but it is important to get him on the list. And like Connie, everything that I have heard and experienced with the evaluation for transplant requires a 6 month documented sobriety either with AA or some sort of counseling if the transplant team is aware of the prior drinking. My husband had quit on his own 2 years before and they still required him to have documented AA meetings before they would list him.

I sure hope that they are successful with that clinical trial for Hepatocyte Therapy. If they are just starting it ......it probably has a long ways to go before they find out if it actually will grow new liver cells. Liver Disease is so unpredictable sometimes.........I would get on the list first and then discuss it with my hepatologist.

Lot's of thoughts and prayers for your son and your family............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/12/2010 4:27 PM (GMT -7)   

Ranbrew, I completely agree with PG.  If the transplant center is ready to list him, let them.  They will not proceed with transplant unless he gets really bad, but that could happen quickly.  If he has cirrhosis, that is not reversible.  It can be halted or slowed, but not reversed.  Also, anything that is just going into trials will not be widely available for some time.  I wouldn't recommend him trying to join such a trial with a MELD of 22.

I suggest that he apply immediately for SSI.  If approved, he will also get Medicaid, which should help with the bills.  You should also go with him to his next appt. at the transplant center and ask them whatever questions you have.  You can also look into whatever charity help they might have at the center.  See a SW there, not the financial people.

Your son is lucky to have your support.  Many don't have any type of family support.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 3/12/2010 10:22 PM (GMT -7)   
Ranbrew, Get on the list ASAP! I received a liver (last July) with a MELD score of 24. That's atypical, but why wait until things get worse. There are a lot of tests to get listed, but it's worth the endeavor. I went from feeling crummy for years to having a new beginning. I realize that things could go south from rejection or illness. What's the alternative? I'd prefer to have a shot at life, than declining health, which would only turn out badly. Do whatever it takes and get your name into the "pipeline." I have yet to talk to anyone with a transplant, liver, kidney or heart that regrets doing so. Even the people who've had problems after the transplant are happy they did it. You need to let the docs do their job. Then listen to them, when they tell you your job. Feel free to ask me anything about my journey. It was (and is) a good one. Stay well. **David**

ranbrew
New Member


Date Joined Mar 2010
Total Posts : 7
   Posted 3/13/2010 9:02 AM (GMT -7)   
Thank you all for your responses. My other son has called and dsaid he wants to donate part of his liver. I guess my question is which gives him a better chance a live donation from A+ or a cadaver liver exact match to his AB+ Aso My son is afraid of losing his job and is not keen on going on disability or Medicaid He is a very proud person. Can he eventually go back to work and lead a normal life? Thanks so much Vanessa

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 3/13/2010 10:39 AM (GMT -7)   
First you'll have to see if his brother's a match. As to not losing his job, will his employer hold his job for the entire time it takes him to recover. It would have to be a minimum of 3-4 months and could be a year, or more. Does he have medical coverage from his job? If not, he's unlikely to be able to pay for the meds, much less the transplant. You said his job is part time at minimum wage. That wouldn't pay for meds, much less food, clothing, housing, etc..I applied for disability, just got it and am back to work part time. I didn't get paid for the first 5 months out and once you begin going back to work, they'll pay you for 8 months as you're getting back on your feet. Forget pride, it's about saving your life and I worked hard and have paid taxes and SS for 40 years. It isn't stealing, it's what I put into the system and am now getting some back. My health insurance is the same thing. I've paid it for over 3 decades and now they're paying for my transplant and meds. **David**

mathman
Regular Member


Date Joined Jan 2010
Total Posts : 31
   Posted 3/13/2010 11:25 AM (GMT -7)   
Yes, a transplant itself can cost in the ballpark of half a million dollars if uninsured, or more. Plus his body really does need the rest.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/13/2010 12:23 PM (GMT -7)   

I just want to say that I agree with everything that David and Mathman said.  A part/time minimum wage job likely does not have insurance coverage.  It's time for him to have some humility and admit he needs help, at least temporarily.  It takes time to be approved, so he may as well apply now.  Of course he can return to work in the future, if all goes well.  He's still quite young.   He might want to ask about taking a medical leave of absence if he is really intent on keeping that particular job.

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


ranbrew
New Member


Date Joined Mar 2010
Total Posts : 7
   Posted 3/15/2010 7:52 AM (GMT -7)   
Thanks guys He pays privately for an insurance policy that covers very well once his deductable is met (5000.00) per yr. I am wondering if it would be feasable to just apply for medicaid right now? to help pay for medical costs. I dont know, I guess I need to talk to the SW at Northwestern further and let them help. You guys are great Thank you so much Vanessa

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/15/2010 10:27 AM (GMT -7)   
Ranbrew, you will need to talk to the SW, by all means.  However, I'm fairly certain that he will not be eligible for Medicaid if he has a private policy.  Also, he has to be determined disabled before he could get Medicaid.  I'm guessing that he has not met his deductible yet (and that's a high deductible--how does he meet it on a P/T job?)  Maybe, due to current circumstances, he could drop that private policy. 
 
As David said, his brother would have to go through testing to see if he is a match for his brother.  It is not just having the same blood type.   On the positive side, it may cost less and also the length of sobriety would not be a problem.  The pros and cons are something to discuss with  his hepatologist.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


ranbrew
New Member


Date Joined Mar 2010
Total Posts : 7
   Posted 3/15/2010 5:45 PM (GMT -7)   
Thanks .....All good food for thought
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