Just got off the phone with the Dr. (DH was discharged Mon. and back in Thurs)

[Joanne]

He's still there. His ammonia level went UP while in the hospital, taking the main symptom management medicine as prescribed.

 

The Dr. (the local hospital's GI specialist) asked a lot of background questions. In the end, he couldn't assist and concluded saying "you've done everything you can."

 

Based on something Adrian said yesterday in the hospital, I gathered all the guns in the house and took them to a friend's home. This friend happens to be a gun collector AND a person with a new liver (and kidney). I remember his trips to the hospital, struggle, and eventual transplant. He's back to WORK now, after years of disability.

 

Ironically, he is 1 day younger than Adrian. Well, I talked to him yesterday. I didn't know the whole story. He is also diabetic, and his cirhossis was lifestyle induced. He spent a couple of years like us, in the hospital a lot, before he was even on the transplant list. He then spent a couple of years waiting on the list. Talking to him yesterday was oddly comforting; it is unfathomable to me that someone could be that chronically sick at that level and not be "sick enough".

 

It also, unfortunately, confirmed for me what I suspected - most people don't even make the list and instead die before that point (a fall, infection, etc.)

 

I am working with the manufacturer of Xifaxin, which may help manage symptoms, but costs $1500 a MONTH. In the meantime, they are putting him on a antibiotic that will block toxins from leaving the gut. That is also expensive, but not nearly as much.

 

The social worker at the hospital filed a request with the Department of Aging and Disability for us. The case worker there has 14 days to contact us to arrange a visit to evaluate for services (hygiene, grooming, dressing, basic housekeeping, meal) which would be paid if we get medicaid. I'm not sure we will qualify for medicaid with my new job.:confused: So, I googled for an eldercare planning attorney. The thought that I may have to divorce him to get him help is constantly present.

 

He will qualify for medicare in June of 2013, and then he can switch to one of the liver speciality centers.

[Truscifi]

:grouphug::grouphug::grouphug:

 

I wish I could think of more to say or do, but I can't, so I'll just keep sending :grouphug: and our thoughts.

[PollyOR]

:grouphug::grouphug: He is blessed to have you in his corner.

[Twigs]

:grouphug::grouphug::grouphug:

[sparrow]

:grouphug: Such an emotionally exhausting situation.

 

It is an awful shame that married couples have to divorce to get care in our country :(. We bought our house from a couple that had been married over 40 years, but had to divorce in order to afford care for the wife with MS.

[MariannNOVA]

I am so sorry, Joanne. I wish there was something else I could say or something I could do. Thoughts and prayers.:grouphug:

[BMW]

I'm grabbing my prayer journal right now, Joanne. Will hold you and him in prayer.:grouphug:

[Chris in VA]

Still thinking of you so often and praying for you and your family.

My brother received a double lung transplant, as you may remember. He was so, so sick for such a long time, but that transplant was a miracle. To see him take a deep breath was amazing. Stay hopeful. Stay strong. David Bailey's music helped my other brother when he was battling cancer--it's filled with hope. Maybe you could call it up on youtube for a minibreak.

I'll pray specifically that you can stay married and receive help. Hope that's ok.

[southcarolinamom]

I'm just.so.sorry, JoAnne.

 

Praying for your mental, physical and spiritual health. :grouphug: