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Regular Member

Date Joined Jun 2009
Total Posts : 30
   Posted 7/29/2009 3:59 AM (GMT -7)   
cry  Moonroe here, Got some bad news yesterday. Husband has been in the hospital since Sat. High amonia levels.This is the second time in three weeks he has been hospitalized. The doctor says this will be a recurring thing and more often than not. He has a parancentisis done this morning and then I hope he can come home. They have put him on oxygen and will have a physical therapist come in. I can get an aid 2 and half hours a day. Not sure that is going to be much help since I work 6 hours everynite from 4 till 10.His GI doctor email his transplant doc(Hyashi) with all of the results of the past month and things dont look good.He has to finish the counseling for Medicaid to consent to the transplant.That will be finished in the end of September. He has to take the heart meds for 2 months and then another echo and cath to see if the pressure has come down. Then he can be listed. Because his meld score is now 22 He said it should be 90 days for transplant. So...we are looking at another 5 to six months.Gi doc said it is unlikely that he will  make it that far.I for one am not giving up. I am going to remain optimistic and continue as if he is going to have a transplant.Time will tell if he is going to be strong enough to continue all of the testing and counseling. I am hoping my daughters  and son can help some.They have their own families and it is hard for them .This is really a pickle I am in because he has to come home. Hyashi said if we put him in a nursing care facility they will not transplant from there. Great,that leaves me only one option.Bring him home and find some help or be in 2 places at one time.I should say 3 places at one time since I have my 89 year old mother to deal with too.She has to be at Duke tommorrow to see a cancer doctor who specializes in tumor on soft tissue.Sorry this has been such a long post,but there is so much going on my head is spinning and it helps to write it all out.Ionly hope I can deal with all of this and stay sane. Thanks for listening Moonroe

Veteran Member

Date Joined Oct 2007
Total Posts : 502
   Posted 7/29/2009 6:41 AM (GMT -7)   
Moonroe, I was so sorry to read your post today. Sometimes it just seems overwhelming I know. It is amazing that we as caregivers can summon the strength to do what needs to be done even though we feel we can't do anymore. It is that inner strength that will keep you going. I am not very familiar with some of the agencies that can offer help to you but there has to be something. Have you asked the social worker at the hospital what is available? They usually have a list of all the agencies. Hopefully someone will post what they have done to get some in-home help. You can vent here any time you want, we understand.

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."


Elite Member

Date Joined Jul 2005
Total Posts : 12014
   Posted 7/29/2009 1:37 PM (GMT -7)   
I am really sorry to hear of your husband's condition.  However, I agree that you should not lose hope and should continue as though he will get a transplant.  In view of the fact that it will be another 5 mos. or so before he is listed, how about having him discharged to a NH in the meanwhile.  If you tell the doctor that there is nobody to be with him in the evening, perhaps that will be enough reason (along with the fragile health) for him to be placed in a NH, at least until he gets a little better.  It makes no sense for him to come home and then have to be hospitalized again in a few days, because he fell or something else happened while he was alone.  If that is not possible, then I think Shelly's suggestion to speak to the hospital SW is a good idea.  Explain your situation and see if perhaps there might be volunteers who could stay with him.
Please do keep us updated, and feel free to ramble or vent anytime.
Forum moderator - Hepatitis
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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