Just want to help!

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abuela
New Member


Date Joined Jun 2009
Total Posts : 1
   Posted 6/14/2009 12:57 PM (GMT -7)   

This is going to be a long post -- I hope someone reads it.

My neice is diagnosed "mildly retarded." She lives with a boyfriend who has supposedly normal mental function (but is a bit pig-headed and paranoid and also very besotted with her -- all of which can interfere with rational decision making.) He has an incredible ability to be in denial of any facts that are inconvenient or unpleasant.

He has worked most of his life but hasn't the last few years because of an injury. She doesn't work. She doesn't drive. He drives the minimum necessary to keep food in the house because of poor vision (cataract) and also no car insurance. They live a very simple (meager) but happy life on two scanty social security checks. They are very independent and private. They don't seem to have or need any friends. She has no family but me. They never ask for my help except in dire emergencies.   I've forced my help on her in the form of getting her all the benefits I can find to help them survive.  She is clueless when it comes to dealing with "the system".  He is paranoid about "the system."

Last week they called and said he had a hernia. I took them to the vets hospital (he's a vet) two hours from here. It turns out he has hep C (has probably had it for 30 or 40 years) and now has liver failure and was bloated.  He apparently has known of liver complications for at least  a few months and had already been told to stop drinking.  I know what I know about his case from a little he told me, a little I overheard while I was in the hospital, and from Googling some of the medicines they prescribed for him. (In other words, he isn't confiding in me or asking for my help.)  They drained drained the excess fluid and sent him home with diuretics and something that will make him excrete ammonia through his poop and some other medications.  He's supposed to drink no alcohol at all and to reduce his salt intake. 

I don't know what they told him about how serious his condition is. I don't know how much he took in of what they told him. The impression my neice has is that his problem was bloating, and that's been taken care of, so everything's back to normal now.

It sounds, from what I gleaned and from what I've learned on this forum, like his situation is pretty serious. He may be in complete denial about that. I imagine the hospital people got the impression that he has support in the home, but in fact my neice cannot be counted on for much help or any decision making.

He has some family, but none that live near here. I've never met any of them.

You can imagine the questions running through my head. How long does he have? (I know from the other posts that no one knows that...) How much should I (can I) get involved?  (Not that I want to get involved, but he appears to have no one.)  If I don't get involved now, no doubt the time will come when they'll be asking for my help.  Should I try to inform his family? At some point in the future should I?  Should I be starting the process of finding a place for my neice to live?  (Last I heard there was a 2-year waiting list for the most appropriate option.)

I'm pretty sure no one mentioned the possibility of a liver transplant to him. Does anyone kow if that would ever be a possibility for someone at a vet's hospital? (He also has medicare but hasn't used it because he can't afford the copay.) Would a Medicare patient ever be considered for a liver transplant? I can hardly approach the system and start advocating for him to get a liver transplant when he hasn't told me he needs one.

Any thoughts???? Thanks for being there.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/14/2009 2:04 PM (GMT -7)   

Hi, Abeula, and welcome to the forum.  You have quite a situation there.  How much you should or want to get involved is really up to you.  First of all, you need to make sure that your niece understands that her b.f. has hep C and that is a disease that doesn't just "go away" without treatment.  Was there any mention of treatment?  I would think that the VA would do that much.  Not sure about transplant.  As far as Medicare Part B, the b.f. could most likely get Medicaid to pay for it.  They pay my monthly premium.  If he doesn't have Part D (prescription drug plan), he can get that when there is open enrollment and Medicaid would also probably pay for his premium for that.  On the Medicare site, it's known as "extra help" in paying premiums.

If the b.f. is still drinking, he would not even be considered for a transplant.  He would need to be verifiably sober at an approved program (AA or alcohol counseling, depending on what the transplant center requires) for 6 mos. before he would even be evaluated!  He needs to stop drinking now.  He should also get a referral to a Transplant Center where he can get further information on their requirements (they vary from center to center and even state to state.)  Medicare does pay for transplants, I think.

The medication he was put on for high ammonia was most likely Lactulose.  This is to prevent encephalopathy.  Between that and the draining, I would say that he is end stage.  That doesn't mean that he's going to die tomorrow, but that his liver is in serious trouble.  You might try to explain this to your niece and also tell her that she needs to get on a waiting list for suitable living quarters in case something should happen to her b.f.  He is probably going to be in and out of the hospital for paracentesis (draining of fluid in the belly) and perhaps some emergencies such as bleeding varices.  This is just the beginning of a long road.  You might want to recommend to her that she contact his family and let them know that he is very sick.  Unless it becomes a necessity, I don't think you should be the one to do this.

Hope this helps a little.  Keep us posted on the situation.



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


WhiteChocChip
Regular Member


Date Joined Jun 2009
Total Posts : 439
   Posted 6/14/2009 3:46 PM (GMT -7)   
The VA may actually increase his benefits if his current health problems are the result of something that happened to him while in the service ... or so I hear from my contacts who deal with the VA regularly.
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