Husband with ESLD from hepatitis

Hi im not sure if im in the right place,,,anyway my husband had a blood transfusion back in the 70s and another one in the 80s,,he was diagnosed with hep c and b ,,back in the early 90s,,in 2003 a liver doctor said she couldn't put him on interferon because his platelets were low,,now 2 years ago he started getting bad nose bleeds,,we then found a liver doctor where we're living,,at this point my family doctor gives up paperwork from way back from the first liver doctor,,on that paperwork she put down my husband would be dead in three years which should have been 2006,,we never knew that and just injoyed our life,,which now I realize thank god we did. 

Fast forward to May 13,2001,,he vomits 3 liters of blood at midnight,,I rushed him into the hospital,,he was bleeding to death,,they did the tips,,put him in a coma and life support for 5 days,,he was then taken off and was in the hospital for 20 days,,he had 2 blood transfusions ,,two blood clots in his right arm that are gone now cause he can't take blood thinners,,his arms are black and blue,,he has a lot of musle waste,,a bit yellow,,edema,,no more ascites since the TIPS,,he can't take morphine cause he vomits ,,because of the pain in his right shoulder  so he takes a small dose of morphine by needle 2 times a day,,he's a bad diabetic,,4 needles a day. 

He just got on the transplant list thank god,,BUT he is type O blood not good,,,we live 4 hours from the transplant hospital in toronto ontario,,if and when he gets a liver it will cost us around 3 thousand a month for a place to stay cause we dont know anyone there,,I dont work I take care of my husband myself because we have no one to help us,,He does have a liver doctor here in the city we live in,,I asked if they would transport him if a liver came in,,but no I have to drive him there--crazy and very stressful.  He has been going downhill since May 13th.  He has good and bad days,,takes his Lactulose,,was in the hospital for 3 days 2 weeks ago for enemas,,Im doing my best,,just everyone is different I can see that when I read in here,,Well had to vent,,any advice,,his meld is 16 but the doctor said a person can be sicker than his meld score.  Anyone ever hear of that?  Thanks for any answers I can get. linda

Post Edited By Moderator (hep93) : 10/3/2011 8:10:47 PM (GMT-6)

Hello Linda.
Welcome to healing well. I am sorry that you had the need to find us, but glad that you found this forum. There are a lot of caring people here, with lots of knowledge.
I am sure one of the moderators will be here soon to welcome you.
I am so sorry that your husband is so ill. And it sounds overwhelming regarding the transportation and finances. I am sure that there must be alternatives...
Read some of MamaLama's and blonde### (can't remember the number) posts. Both of their husbands have had transplants. MamaLama's almost 6 months ago and blonde's in the last couple of weeks.
Again, glad you found us. Welcome.

Emma

hi thanks,,I forgot to mention he also has HE,,his platlets are at 50 have been as low as 37,,, his ammonia levels were 101 a week ago,,red cells arent good,,his INR was 1.5 gone down to 1.4,,im trying to understan how the numbers keep going up and down,,but I quess everyone is different,,thanks again for any information linda

yes I guess thats how it goes,,I wish you and your husband all the luck in the world,,I have been reading your posts,,its not easy,,my husband has type O blood so he can only recieve from O,,so the waiting list is long,,we have a appointment back in toronto march 7 2012,,its a 5 hour drive to there hopefully hes well enough to travel at that time,,Like I was saying about staying in toronto after the transplant ,its ashame here in canada that there is no place for people to stay with reasnable prices,,oh well I will cross that bridge when we get there,,thanks again gods speed

Hi, Gypsy, and welcome to the forum!  I was diagnosed with hep C  in '93 and found that I'd also had B, as I had the antibody for it.  Both were contracted in '68 or '69.  The only treatment available at the time was Interferon.  I tried 2 different rounds of that, but my white count dropped too low.  I now have liver cancer for the second time, and am on a waiting list at Mayo for a liver.  I'm type O+ and genotype is 1a (hard to treat.)

In your original post, you said your husband's blood type was B.  Then, in a later post you said it is O.  Which is it?  It depends more on where he is listed than what his blood type is.  I believe AB is the rarest type.  I know that I am currently one of 13 women with Type O blood who is waiting for a liver at Mayo.

Have you asked if his transplant center has living quarters on site for a reduced rate, or if any of the nearby hotels have special rates for those being transplanted at that particular hospital? 

You are really cutting it close being 4 hours away.  I'm fortunate to live 12 min. from Mayo FL.

I also join PG in suggesting that you read the info in Hepatitis Resources and post in the Caregivers thread.

P.S.  I corrected some of your spelling and formatted your original long post to make it easier to read.  Please note that there is a list of medical terms in the Hepatitis Resources folder.

Hugs,

Connie

OMG I must be losing my mind,,or my fingers need help,,Sorry my husband has type O blood,,so he can only recieve a liver from a person with type O blood,,If a person is A..B...or AB they can recieve a liver from any blood type,,So if a liver comes in tommorow and someone else in the province of ontario has a higher meld score than him they recieve the live first,,which I understand,,The thing is that alot of people have O type blood but it is the hardest and a very long waiting list when it comes to transplants,,And yep its a far drive to get there and the hospital is down town toronto ,,something like downtown new york a real nightmare,I asked the social worker in toronto about a place to stay,,she gave me a list of hotels and motels the cheapest was 149.00 a night,,I serched the internet and found some cheap motels but someone told me they would be crack inns,,so yep im worried about that,,dont know what I will do,,stressfull for sure But the liver doctor told us he would be on his death bed before he MAY recieve a liver,,in that case they may helicopter him to toronto,,obvisly I can put him in a car at that point,,unreal ,,,butI thank evryone for there support and information

Gypsy,
Does the hospital have a Ronald McDonald House or similar program? Also, our local hospital has housing units across the street for families that travel long distances to have procedures in the cardiac unit. Does the hospital have something like that? Churches in the area that maybe offer transitional housing? With so much stress involved with the health issue, you would think there is an organization that would assist with the other issues. Prayers for you.

Emma

Linda,

I saw this site when wandering around.

http://mervsheppard.blogspot.com/2008/09/lung-transplant-patient-housing-in.html

Note it is for lung transplants and there is a NOTE POSTED says it is no longer available but gives an email address of the person to contact for additional information.

Maybe this person has some idea of where to get help with your housing situation.

It seems kind of awful to have the services set up such that only the well-to-do can get a transplant.

Should you guys move to Toronto for a year or so? Sub let or rent your own place short term?  Like you, my full time has been Mike's caregiver and I don't work (but for volunteeism and some writing I do for myself.)  We considered moving to Miami and it would have been easier as he goes many times a month and it is 2.5 hours each way..not nearly what you have, but twice a week for labs at first has been exhausting, and gas is expensive.

I checked today and we have had 80 overnight stays in 2011!  At $100 a pop (reduced rate), that's a lot!

Hugs,

Carol

Hi tahnks agian,,I had metioned to the liver doctors in toronto about moving there,,,we just rent in kingston so I dont mind moving,,but the doctor said we were better off to stay here because my husband would be on his death bed before he has a chance of a transplant,,we do have few freinds here but know one in toronto,,and if the doctor is right about my husband beeing that sick,,then its best to stay here,,we do have great GI doctors here in kingston,,they just dont do transplant here,, I just dont understand why they wait till a person is so sick they have a hard time fighting infections ect,, As for the hospital well they dont really care about the person and there situation,, Its a big city and yes if you have money you can stay anywhere,,Also my husband and I both signed a paper stating that as soon as he was well enough to leave the hospital he would have to leave yet stay in toronto for appointments,,I guess they do that to cover there backs,,Maybe in the past the hospital was held responsible for housing or helping people after the fact,,so know they make it very clear,,unreal,,I will check out the site you sent and see what I can do,,Thanks for all the support and help linda PS if god for bid he ends up in the hospital here in kingston and a liver comes in,,they will heicopter him to toronto,,otherwise if hes at home when the call comes in then I will drive to toronto thanks again everyone

After my transplant (11 days in the hospital), I was out for a couple of days, then re admitted overnight, because they thought I might have an infection. I didn't, but it was the right thing to do. At that point you're vulnerable to a myriad of problems and could easily succumb to many minor things. When one is healthy these things would mean little, after major surgery they can kill you. Also, your meds will need to be adjusted and that is critical. In my case, the meds were right within 10 days and I was allowed to return home. Had to go back a month later, but was allowed to be tested locally each week. The hospital isn't trying to make your life difficult, they're doing what most transplant clinics do; make you live longer than you would, if you weren't being treated by experts. I've learned that the docs often seem to be emotionally removed, but they have to be to treat you. You too need to be as well. Otherwise you'll hear what you want to, not what they're actually telling you.

Deb, you're a gem! 

This is why this forum works...so many people sharing info and experiences.

Thanks!

Connie

Gypsy, we have alot of people in the US that abuse the system too . . it's everywhere.

MamaLama/Carol posted some very good info, as well as the other members, and you have time to check it out. Even tho even $50.nite is alot of money, it's much better than $150. Fundraising is another way to get some help. Do you belong to a church, or any social organizations? They too may help you. Now is the time tho . . go to these places and ask for help. Take documentation with you about the transplant so they know you are legitamite.

good luck!!

Debbie

Hi I havent been in here,,my computer went in for repair,,then I just got a little depressed and have been watching to much tv,,,my husband sleeps alot,,nose bleeds every day,,,meld score 16 but Im sure hes sicker than his meld score,,bruises all over his arms and chest,,his breasts are swollen with a lump in the left one ,,the doctor said its because of the water pills, his sugar levels are crazey,,I give him 4 shots of insulin a day,,plus I give him morfine shots when reqired for the pain in his right shoulder,,they say its his shoulder,,plus he gets cortizon shots every 6 weeks,,,makes no sense since a person can only get 3 a year,,and he gets one every 6 weeks,, hes alittle yellow,,still on spirolactone 50 mil every 2nd day,,edema in the legs but not to much,,well gotta run wake him up will be back in here later..thanks for listen,,,any advise is welcome thanks again linda