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Liver transplant - Let's support each other

Transplants | Last Active: 17 hours ago | Replies (1623)

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@contentandwell

@jeanne5009 hi, Jeanne. I hope you don’t mind my responding to this too.
Initially I was just on lactulose and did have some episodes still. It is one of the only medications that the patient needs to titrate themselves - take the amount that gives the desired results without overdoing it. After a hospital admission the discharge hospitalist told me to take a HUGE amount of it and it was way too much. My husband had to go out and buy disposable underwear for me. Lactulose upset my stomach a lot so when I saw a hepatologist she switched me to xifaxan. Lactulose had not totally stopped my HE but xifaxan did for almost a year. When I had another HE episode I had to resume taking lactulose along with the xifaxan but I did still have some HE episodes. It was decided that my liver had deteriorated further.

@mostlybill more than likely the prednisone dose will be gradually decreased. I am on 5mg now and do not notice any effects but I am pretty sure that it has contributed to my developing osteoporosis. I’m happy to hear that you are back to a fairly normal routine now.
My BP has also increased but I have read that cirrhosis tends to make BP go down! My PCP wants me on a BP medication.
I think fatigue is pretty common, both before and after transplant. I find that I get tired a lot now too. I don’t sleep well but that’s another issue, but I have assumed that contributes to my fatigue. I used to be a “night-owl” but I am usually in bed now between 11:00 and 12:00. I did not have a drugged feeling but I think fatigue can cause that. On mornings when I have had a severe lack of sleep I feel woozy.

@racing212 not having HE since August is a pretty good amount of time. When I was getting them I woke up every morning praying that I would not have one that day. It’s so incredibly disturbing and I found it depressing too to not have control of my mind.

@tgshomes HE occurs when your liver doesn’t filter out ammonia and it goes to your brain. The effects can be anything from a mild fog, to confusion and being irrational, to coma and even death if severe and not attended to.
As I mentioned above, he does need to titrate the lactulose himself to get the desired results. Also certain foods tend to contribute to it more than others, particularly animal protein. My hepatologist did not recommend not eating any animal protein but she did say to have small portions. I found beef, which I love, to be most apt to bring it on.
I actually weighed my portion of meat and never exceeded 4oz.
I am glad to hear that they feel he will be close to a high enough MELD score that he won’t have to wait too long. It’s such an incredible blessing to be on the other side of transplant and be able to really live again. My cirrhosis was from NASH - non-alcohol steatohepatitis which starts as fatty liver generally.

@rowdyramsey you sure had a tough time before your transplant, with HE and fluid retention. I had edema off and on, but I didn’t have ascites until the last 6 weeks, I gained 35 pounds.
I suspect that, like me, you now feel that every day is a gift. I try to remember that even when I’m having a bad day, because it truly is.
JK

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Replies to "@jeanne5009 hi, Jeanne. I hope you don’t mind my responding to this too. Initially I was..."

This is helping so much. Did anyone have kidney issues as well? My dad is also battling kidney failure and was just hospitalized again this afternoon. He doesn’t know the year, the president, only who my mom and I are. Which I am thankful for. This is so incredible hard for our family and we are not giving up.

I take 5mg of prednisone as well, but the side effects are huge for me. The nurse told me I wouldn't notice, but can't sit still, sleep or get physically comfortable--my fingers and toes ache. Hopefully when I see the surgeon on Thursday she will have a better solution.

Yes...Im the titrating queen! Ive got this down to a science after 3 yrs. 1
huge gulp at bedtime...kind of like the candy on the pillow in hotels..lol.
If I miss it I pay because I feel miserable and dopey. Then you have to
take it until you get results. No diarrhea cramps thank God. Its the
Rifaxim that keeps me mentally sound I think. That stuff is gold! And just
as expensive! Most folks are getting help with the expense I think. If
not..speak up there is help.
Someone recently was talking about this group and what a help it is. So
true! I have learned so much...would like to see my caregivers get more
involved though. They have no clue what you all are going through. Im in
this for 3 years EDLD 4 with a Meld of only 7. Not sure Im lucky as Im
going to be 70 this year and will likely need transplant after that. So far
so good though. I can still drive myself and am still able to care for my
house and an 84 yr old friend who is in really good shape.
Caregivers...daughter will have to cope as needed.
God only knows how the cards will fall. Im waiting for a winning hand!