Liver transplant - Let's support each other

Just wanted to welcome you and I’m sorry to hear of your dads illness. My name is ramona and I had a transplant in July of 2015. I’m on my 4th yr post transplant. I was 47 yrs old. I’m from MD,Baltimore county. My transplant was done at the university of Maryland. I lived in the hospital for almost 2 yrs. If I was released,I would be back in the ER within 12-14 days. I had 2 main problems,fluid and HE. I was about 180 at the most when I got sick. By transplant date I weighed 420lbs. All fluid. Docs had to tap me every 12 days and each time they fulled out 6 2 liter bottles. Image a 2liter bottle of coke. Now at 5 more 2liters to that. Every 2 weeks. I now weigh 150lbs at 5 foot 9. I also lived with HE every single day for almost 2 solid yrs. I had it bad! My ammonia levels were 190-over 200. Comatose levels. I drank lactolose all day and all night long! Every single day for almost 2 yrs. Sorry,I already said that! If you have any questions feel free..... I will try to follow your posts.

@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

Thanks, @gaylea1 every time I think about those days I shudder. It really was a nightmare and going almost a year and a half not knowing what was wrong with me is insane, I had many typical symptoms such as low platelets and shaky hands. As I have mentioned before, the PCP I did have called me, on the phone, and very simply stated that she thought I had Alzheimer’s! This was after one HE! She was the first doctor who referred me to a neurologist, but I stayed with him, after I quickly changed PCPs. The neurologist was stunned at that suggestion too, after one episode of confusion, and did a little informal testing, and although he didn’t know yet what was wrong he did know it was not Alzheimer’s. He was the one who figured it was a liver problem.

When I was hospitalized they didn’t know yet what was wrong and the treatment was horrible. It wasn’t much better after my diagnosis either, except for a small handful of nurses.

That it took so long to diagnose me is ridiculous. Granted, I never got jaundiced, and my ALT and AST were not horrible, but I have read that is not uncommon. The doctor I switched to, who is still my PCP due to not being able to find a decent one taking new patients, said when I confronted him about not diagnosing me, that he was relying on what previous doctors had diagnosed - shaky hands as essential tremor, low platelets as ITP (immune thrombocytopenia). My other symptoms were not addressed. I’ve had it in my mind that I will change doctors but have been dragging my feet. Being reminded of all of this, along with him dropping the ball on my osteopenia that is now rather advanced osteoporosis, has given me more resolve to make a change after the holidays. The one thing making that decision difficult is that I have a good communication with my PCP, and I like him!
JK

@rowdyramsey make sure that you are on a wait list for the doctor in case there are cancellations.
The only time I have had a cancellation done without my knowledge was because the doctor was not going to be there. That time they gave me a new appointment without it being at a convenient time for me! I then had to reschedule which was a longer wait.
Maybe your PCP could get them to give your appointment some priority too, I have heard that sometimes that helps.
JK

Unfortunately, I spoke with the secretary of my neurology just today. They said a certain employee canceled my Dec. 17th appointment. The employee was not working today so they could not tell me why she did it! Can u believe that. It would be o.k.but they couldn’t give the appointment back. Now they can’t see me till Jan.14th. That’s what made me mad. They claim they can’t do anything about it! I think I will talk to my MD.and see if he can’t order the testing. I see him in about 2 weeks. I will keep u posted!! Thank you for enquiring about the situation!🙂

@rowdyramsey Ramona, a hospitalist told me when I was being discharged from an inpatient stay due to HE that they could have a permanent effect on your brain. Not a great thing to tell a person really but perhaps she just wanted to impress upon me the necessity of using the dreaded lactulose to avoid HE. Other people generally seem to not think that though, so it is a very controversial question. I am really interested in what you hear after having brain scans. When are these scheduled?
JK

@rowdyramsey I almost lost my life during the first HE episode. The first 48 hours were just touch and go as to whether I would survive it. I was hospitalized in intensive care for a week then they moved me to a private room for extensive care. I think that would qualify as pretty severe. The next 6 months are a blur, no memory of that time or awareness to my surroundings. Subsequent episodes landed me in hospital a week at a time. I took lactulose (30 ml) every four hours and then I also took rifaximin. I didn't suffer from a lot of diahrea but made sure I drank lots of water to keep hydrated. I now feel a bit foggy at times but my memory is pretty good and I tend to make lists and enter everything into my calendar.

Not sure if I responded already to this. If I have ,sorry. It’s my memory. I can’t remember if I responded or not. Crap like that happens all the time. Anyway to answer your first question. My loss of memory started soon after the transplant. I gave myself almost a year for recovery and during that first year or towards the end of the year,I began noticing that I wasent getting any better with my memory. It just got worse. So,yes,I noticed it right away. Once the “fog” lifted and my body was got better,I noticed my mind and my thinking had drastically changed. I would love to keep posting my updates because I believe in what I’m doing and saying. I do believe that long lasting HE will leave “brain damage” permanently. Depending on the severity of your experience with HE.

Not sure if I responded already to this. If I have ,sorry. It’s my memory. I can’t remember if I responded or not. Crap like that happens all the time. Anyway to answer your first question. My loss of memory started soon after the transplant. I gave myself almost a year for recovery and during that first year or towards the end of the year,I began noticing that I wasent getting any better with my memory. It just got worse. So,yes,I noticed it right away. Once the “fog” lifted and my body was got better,I noticed my mind and my thinking had drastically changed. I would love to keep posting my updates because I believe in what I’m doing and saying. I do believe that long lasting HE will leave “brain damage” permanently. Depending on the severity of your experience with HE.

@rowdyramsey I just went back to read your prior posts. It sounds as if these problems didn't start immediately after transplant? I saw a response I had before that I still believe - I have no medical training but I think if they started a couple of years after your transplant then the problems are probably not related to HE episodes. Did you have any of these problems immediately after transplant?
That's good that you are seeing a neurologist. I don't know anything about brain scans but hopefully, if you are unable to hold a job they will be able to help you get disability no matter the cause. I am also not familiar with disability. If you are on disability are you allowed to hold a part-time job? I would think that could help you with depression, getting out and interacting and doing something, even if the part-time job is something fairly easy.
Try to eat something. When I can't eat, which is pretty rare, I find that toast does go down well, maybe with a little ginger ale. You do need to keep your energy up and if you don't eat you will be even worse. You mention a son. Does he of anyone live with you to give you some help?
When will you be having brain scans? I hope you will let us know how they turn out.
JK