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Posted 3/12/2009 6:10 AM (GMT 0)
You all are an answer to prayers!  My 52 year old bf has been diagnosed with cirrhosis.  He has been on lactulose for just over a month now which has helped his ammonia levels a lot.  Sadly, I've discovered that he is still drinking (which is the cause of major fights!).  He has no health insurance, and I don't know what kind of care I'm going to be able to find for him when I can't take care of him.  As it is now, I work full time, so have to trust that he is able to care for himself during the day.  Along with the lactulose, he takes Metopropolol for high BP, and I am giving him Milk Thistle for his liver.  He has lost a substantial amount of weight, and I can't get him to eat much of anything.  Any ideas for things he might eat would be appreciated.

Thanks!

Posted 3/12/2009 4:59 PM (GMT 0)
Dear Ringzemall,

Hang in there. I certainly wish he would stop drinking. It only makes everything worse. My friend continued drinking for about 6 months after she found out she was in ESLD. After a few hospital visits, and some scarey episodes of falling, etc. she stopped. Once she did, she told me that she was THANKFUL for this disease because it helped her stop drinking. She had been trying to quit for over 30 years. At first I didn't understand about her being thankful for the disease, but I do now. She sees and understands some things she couldn't when she was drinking. Fights probably won't stop him, but if you can't take the situation, you may have to walk away. I don't mean that you threaten him, but maybe he should understand that this is not just happening to him. If you stay on, you will be in for a very rocky ride. So, love is one thing, but your sanity is another. Keep reading and writing on this forum. You will find some wonderful people here who know just how you feel!

Take care,

Joan
Posted 3/12/2009 6:21 PM (GMT 0)

Hello, Ringzemall, and welcome to the forum.  I'm very sorry to hear that your b.f. has liver disease, and especially sorry to hear that he continues to drink alcohol.  Joan is right--fights won't help or make him stop.  He has to truly want to quit.  Perhaps you can approach the subject in a calm and objective manner.  Tell him that everytime he takes a drink (even a beer), he is throwing alcohol on a fire.  His disease will progress much more quickly and his death will be hastened if he continues to drink.  Offer to go to an AA meeting with him.  He may secretly want to quit, but just doesn't know how.  I have been sober for 22 1/2 years, thanks to AA.  Thankfully, I had been sober 6 yrs. when diagnosed in '93 with hep C.  I have cirrhosis and have had liver cancer and am still here to talk about it.  I know I wouldn't be if I had continued drinking.

If your b.f. won't accompany you to an AA meeting, you might find that Al-Anon meetings will help you to take care of yourself and evaluate the relationship.

The alcohol will blunt his appetite, so he won't feel hungry.  Give him some Ensure or Slim Fast if you can get him to take it.  Otherwise, cheese, fruit, eggs...basically anything with nutrition that he can get down.

As for the medical care issue, has your b.f. applied for SS Disability?  If he is not qualified for Medicaid, perhaps your local hospital has charity coverage.  Teaching hospitals usually have clinics that are cost-free or low-cost if one qualifies financially.  Even Mayo has a charity fund.  I am under Mayo's care, and anything that Medicare won't pay, their charity fund does, so I have never gotten a bill.  That's a tremendous relief from stress.  If your b.f. is approved for SSD, he will receive Medicare two years from the time he applied for it.  Since he is taking Lactulose, that tells me his liver disease is quite advanced.

Talk these things over with him in a calm manner, when he is sober.  Don't ever try to discuss things with him when he has been drinking as he will not be receptive.  Most importantly, be sure to take care of yourself.

Hugs,

Connie


Posted 3/13/2009 5:49 AM (GMT 0)
Thanks for your replies!  He was approved for SSD last October, ironically for other problems not related to alcohol or liver disease.  His liver was not even an issue then.  He had quit drinking several months ago.  As you know, he is not eligible for medicare for quite some time yet.   We have a local clinic that has a sliding scale fee, so he is getting some care.  He has not been able to sleep, and is in a lot of pain, which is why he decided to drink again.  We've had a rational discussion today, and I am going to encourage him to return to AA.  I'm trying to find out from the doc what kind of OTC pain relievers are ok (I know not to give him Tylenol).

He's feeling a bit better today, but fell again, so I got another dose of lactulose into him.  What a ride this disease is!

Cindy

Posted 3/13/2009 6:46 PM (GMT 0)

I'm glad to hear that your b.f. is getting some type of care.  I take it he is ineligible for Medicaid?  I also was approved for SSD for a different medical problem.  It took 2 yrs. to get approval, so I also got Medicare at the same time.  I hope that he will return to AA.  That is the very best thing he could do to help himself.

Please keep us posted on his progress, and don't forget to take care of yourself.

Posted 3/15/2009 10:48 PM (GMT 0)

He is ineligible for Medicaid, as he makes way too much money on SSD.  Not enough to afford medical care, but too much to qualify...the conundrum of our health care industry!

He is doing a bit better the last couple of days.  We seem to have a better handle on the encephalopathy, and the lactulose dosing.  I'm getting nutrition down him as best I can, and he is doing what he can to be cooperative about the whole thing.  I wish I could find something for his pain and to help him sleep.  When he says a 7 out of 10 is a good day, I feel terrible for him.  I'm learning a ton while reading old posts, and feel so much less alone in the world of liver disease.  That is helping us both a lot!

Cindy

Posted 3/16/2009 2:50 AM (GMT 0)
Dear Cindy,

My friend Mary has been having sleep trouble for a year now.   Don't mean to sound pessimistic, but sleep problems seem to be a prevalent problem with this disease.   There's something to the idea that they "mix up their nights and days."   She really has trouble sleeping at night so then needs to make it up in the daytime.   I read somewhere that some people fear they won't wake up.  There are probably many reasons for the sleep troubles.  

Take care.   Your bf is blessed to have you on his side!  

  

Posted 3/16/2009 3:18 AM (GMT 0)

Hi, Cindy!  Prior to getting disability approval, I had only worked P/T for 10 yrs.  So I couldn't get insurance that I could afford.  I got care at a teaching hospital, which is why I suggested that.

I have hep C and cirrhosis and tend to sleep a lot, but have a problem getting to sleep at a decent hour.  I mentioned it to my PMD and she suggested melatonin, which you can get OTC in 1 mg, 3 mg, and 5 mg strengths.  I've found it to be helpful.  Whereas before I wasn't getting to sleep until 4 or 5 AM, I'm usually asleep by 1:30 now.  I just keep trying to make it earlier each night.  However, once asleep I awaken easily.  But I also can go right back to sleep.  The fatigue that goes with this disease is unbelievable and very hard to describe.  No amount of sleep makes it better.

I hope your b.f.'s encephalopathy remains manageable.

Posted 3/16/2009 5:08 AM (GMT 0)

Oddly enough, I do have a smidge of understanding of what a liver patient goes through.  I had mono a couple of years ago, and got mono-hepatitis from it.  I couldn't believe the exhaustion, the pain, the lack of appetite (I lost 15 lbs. in a matter of a couple of weeks), and the lovely fluorescent orange urine.  Thankfully it didn't last very long, and I certainly had no trouble sleeping (that's all I did outside of work), but it makes me much more patient with him than I might otherwise be.  He's taking melatonin...I'll have to check the dosage...I might try upping that.

Thanks!

Cindy

Posted 3/22/2009 9:27 PM (GMT 0)

A word of caution about Melatonin . . .

 

People taking anti-seizure medications or blood pressure medication (including those for portal hypertension) should avoid melatonin or at least be monitored closely by a doctor.  The same holds true for those with diabetes as glucose levels are affected by the supplement.  Some diuretics are affected by melatonin.  It also increases the affects of barbiturates, narcotics, antidepressants, and alcohol.  

 

Melatonin has not been proven safe when taken on a regular basis over the long term.  Harmful effects may take years to appear.  Melatonin is a hormone supplement metabolized by liver enzymes.  Drugs or diseases that alter the activity of these enzymes may increase/decrease the effects of melatonin supplements.  

 

Take care,

 

Penny

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