Update on Hubby

Hello All,

Hubby was officially listed on Monday. The infection is gone. He has been moved out of ICU onto the floor where other liver patients are. Some are awaiting transplant themselves. His MELD score has been a constant 31. We are just playing the wait game now for a liver. I find myself watching the news looking at tragedies, and hoping for a match. That is so selfish of me, and I ask The Lord to forgive me. I hate I have resorted to this, but I love him so much, and want him to have a new chance at life. You know the good thing about this is that Hubby hasn't lost hope, and says its on the way. I love that about him. He has always been the positive force in our marriage. But I know God is in control, and new healthy matched liver is on the way. I laugh and say "hopefully, it will be a young Christian liver". that would be awesome.

Well, I have taken you guys advice and not running to the hospital. The last two days I had been battling a nagging headache that seem like meds couldn't shake. I said "oh wow, pls don't let me get sick!" Thank God headache went away!

Oh yeah, he has his cell and he does call everyday once he's awake. Most calls are better than others, as I can tell when ammonia levels are high. But for the most part conversations have been good. He called me last night to wish me goodnight. It was a beautiful gesture, and it made me blush he's so sweet! I miss him so much, and so ready for transplant so I can have my healthy hubby back. The hubby I married whose mind was there, who could do everyday tasks by himself, who could help with the children, who would put the trash out on trash days, and I just miss him reading the newspaper daily. I would fight about him leaving the newspaper on the bathroom floor, and I come in slipping, lol . It wasn't funny then, but I would love to slip again. I miss my hubby, and liver disease sucks!!!!

Have a blessed day!!
Tasha

Post Edited By Moderator (hep93) : 7/7/2013 11:20:57 AM (GMT-6)

Connie, you are right, who cares now. He's 5'11 170 lbs, so I'm thinking he's an average size man. So it shouldn't be long.

I love him with all my heart! I know this too shall pass, and then we will be back in marital bliss! All of our friends have mimicked their marriages/relationships from ours, so we have a union like no other. He's my BFF!

Tasha,

Every time I heard a siren in Jacksonville, I couldn't help but wonder if this could be "it". Then I would feel so guilty and I would pray for whoever was needing emergency services.

Actually the liver could come from anywhere that would fit within CIT guidelines. CIT is the cold ischemic time, the maximum time for the liver to be explanted from one and implanted into the other.

Post Edited By Moderator (hep93) : 7/7/2013 8:23:35 PM (GMT-6)

Splash, as wonderful as it is to get extended life through transplant, you are right...it takes time to come back from such major surgery. One thing that was never mentioned to me was the possibility of steroid-induced diabetes. I had that for a few days after TP, thanks to Prednisone. It corrected itself before I was discharged, but I still had to do finger sticks for over a week at home to test my glucose level, before eating anything. It was hard to sort out all the meds at first. Tasha, get yourself a LARGE pill box for hubby, with AM, Noon, Evening, and Nighttime slots for a week and set it up for a week at a time. They will give you flow sheets to track the meds.

I had a lot of complications and will never be completely the same. It seems those with chronic active hep C at the time of TP, have a rougher time in recovery than those without it. I was also pretty weak for several weeks, needing to be pushed in a wheelchair at Mayo.

But between treatment, surgery, and TP, I've had 7 yrs more than I ever expected, but life as I knew it is gone. I never had HE, jaundice, or much ascites, though I did have problems with edema. For those who had those problems, TP will bring a huge respite from those issues.

Hugs,
Connie

Ah yes, I forgot to mention the diabetes. Unfortunately Robert is still struggling with his blood sugar. He's off the insulin for now, but will soon be using it again - they want him to start 'sticking' 3x/day, before meals. I'll be posting about him in a bit - he's still having issues.

At TGH, they gave us one of those big pill containers before discharge. The pharmacist went to his room, went over all of his meds, and then filled the pill box with the first week's pill regimen. He actually had Robert fill/empty/fill the container 3 times. Of course by the time he got home he had completely forgotten everything about it! I still fill it for him.

Post Edited (Splashdancer) : 7/7/2013 10:33:31 PM (GMT-6)

Before we left the hospital at mayo jax, they gave us a really nice pillbox with a jacket to prevent accidental opening. We sat there for almost two hours going over and over everything. We left there with every thing set up and every med we needed. In fact they won't discharge you until all your meds are in hand. They take the meds very seriously there and stress the importance of not running out.

Wow I guess they want you to take good care of their organs :)
Makes sense to me.

Speaking of MGH, I think I'll try to get an ortho appt for my arm. Hope it doesn't take forever.

Hello All,

Well, I spoke to the dr today, Hubby is hep c and Wilson's Disease negative!! The dr literally was confused at the test results. How they can be neg, then pos, the neg for antibody and virus. he said he will do fine after transplant. I also received my results and I'm neg of antibody and virus. The dr is really optimistic and said any day now for transplant, as his MELD score is a 35. I am puzzled as he can say such thing.... Do they have organs and they wait for them to get sicker??? I did ask about if his blood type is hard to find a donor, and he said O blood type is easier, than his A+, but I am positive and hopeful it will come.

Yes, his financial coordinator said we will go home with a big pill container, and 30 day supply of meds. I was told about the diabetes, and it can come and go.

I pray that the HE will go away. It is such a sad sight to see your loved one go through such confusion. The HE is horrible!! Thanks Splashdancer for the heads up on the emotional roller coaster... I have read that from a few websites that TP reicipents will experience mood swings post-transplant due to meds.

Will the accidents (BMs) subside??
What are the common rejection signs I should look for?
How long before the jaundice go away? How long?
Will the ascites and edema go away? How long?

I know I can count on u guys to give it to me straight! That's why I reach out to u guys for advice!

Tasha

Dabess, great news that neither of you have hep C! Hubby should indeed do well after TP. No, they don't have livers just lying about. He has to wait for one that matches his blood type and tissue type, as well as size. He is at the top of the list for his blood type. Since it's not as common as O+, he may have a bit of a wait, but it shouldn't be much longer. Also, they have to make sure that the donor liver is healthy. Since he doesn't have hep C, they wouldn't want to give him one with hep C. It's a little more complicated than you would think.

I was on the list for 3 mos. I'm an O+ and a small person. Just as I thought I may have longer to wait, boom! I got a phone call in the middle of the night.

Is he now on Lactulose? Since he still has encephalopathy, it seems he's not. But then you mention BMs. That's how Lactulose works...through BMs, the more the better, and they tend to be diarrhea. After TP, he shouldn't need the Lactulose.

As far as jaundice, that should also resolve after TP, though it might take some time. Usually it resolves quickly.

Rejection is not likely and not a big deal. If it should occur, they will simply increase the antirejection meds. He will have blood work every day for awhile, even the first week after discharge, along with ultrasounds of bile ducts. Believe me, they keep an eye on results and will inform you (or him.) Less for you to worry about.

They will give a list of instructions and things to look for post-transplant. They will want you both to stay close by for a month after transplant. So please try not to worry and trust his medical team His post-transplant coordinator will be his/your new best friend.

Hugs,
Connie