Liver transplant support group

Posted by lmctif @lmctif, Oct 29, 2018

Hello everyone! I am a transplant social worker in Florida. I am currently gathering information to put together a “Liver” support group. I was curious as to what specific topics people would be most interested in learning new information about / discussing! It is supposed to be more of an interactive class in which group members lead the discussion, but I would be interested to see what kinds of topics or discussions would be most beneficial from an outsiders perspective! Thanks in advance for any suggestions!

@racing212

I'm in hospital now because i had an he episode yesterday at the shop..my forman broight me in

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@racing212 Kudos to your foreman for knowing enough to bring you in. I am thinking it must not have been that severe an episode if today you are able to be on the computer and communicating. When my episodes were severe enough for me to end up in the hospital it was a couple of days before I was able to communicate with any sense on my iPad, I sometimes couldn't even remember how to get on it!

Take care and get better quickly, it sounds as if this will be a brief stay in the hospital.
JK

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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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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.

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@rosemarya

Advancing liver disease can affect the kidneys. Sometimes the liver transplant will bring the kidneys back to health. Sometimes patients require dialysis until liver transplant.
Never give up! My doctors and my family did not give up on me. I had a liver and kidney transplant 10 years ago at age 60.
Sending positive thoughts.

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Thank you guys so much. We are just trying to get some answers here and it’s just one bad situation after the other. I’m hoping they will put him on dialysis and hoping that will help, even if it’s just a little. Seeing him struggle is so heartbreaking. Thank you again to everyone helping, it means a lot and is helping more than you guys know!

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@tgshomes

What is a HE Episode?

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@tgshomes The diagnosis I was given was NASH. I had one severe HE episode 7 months prior to transplant. I woke up one morning very incoherent and combative about getting dressed and going to work that day. I tried to text my work supervisor but could only type nonsense into my cell phone. Luckily my daughter was visiting and called my husband to come home. I was hospitalized for 3 days but do not remember the first 2 days. My ammonia level was too high and affected my brain. They increased my Lactulose and brought the ammonia level down. The downside of the Lactulose was having severe diarrhea and needed to wear Depends. I was no longer allowed to drive. I also noticed short term memory issues. My husband was my primary caregiver and thank goodness he would remember what the medical staff at Mayo in Jacksonville would explain to us before and after the transplant. I was also very fatigued and would fall asleep frequently each day. As the months went on my health declined very quickly with 3 more hospitalizations due to kidney failure. I also started to have ascites and needed a paracentesis once a week to remove between 8 to 9 1/2 liters of fluid. The week prior to my liver transplant I was again released from the hospital and became very weak especially in my legs and was barely eating anything. I also had edema in my legs and needed shoes 2 sizes larger than I normally wore. I was hospitalized again after a week out of the hospital with a MELD of 44, over the 6 to 40 scale that we were told that there was. I did receive the liver transplant that night.
Since my liver transplant 8 months ago, most all of these symptoms went away. I do feel the HE episode and memory issues did create some changes to my brain. I have trouble remembering a word to use in the middle of sentences frequently. It takes me a few seconds and I usually can recall the correct word.
I hope your father receives a liver very soon. You sound like a wonderful son and an asset as a caregiver along with your mother. My children stepped up when we needed their help during my illness and appreciated all they did for us.

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@contentandwell

@racing212 Kudos to your foreman for knowing enough to bring you in. I am thinking it must not have been that severe an episode if today you are able to be on the computer and communicating. When my episodes were severe enough for me to end up in the hospital it was a couple of days before I was able to communicate with any sense on my iPad, I sometimes couldn't even remember how to get on it!

Take care and get better quickly, it sounds as if this will be a brief stay in the hospital.
JK

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The Dr. Said my amonia levels have come down a lot since i came in…I've had really bads one's where I'm in hospital 2 weeks in another town with a bigger hospital. And i don't know how to use phone

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@rosemarya

@racing212, I hope and pray that this is a minor episode for you. Hugs to your foreman for his quick action to get you in for treatment.
I don't know whether you live near your transplant center for treatment, but if not, I hope that they are involved and will be able to figure out what is causing these episodes.
I have not had any HE episodes so I can only try to imagine what you are going thru.
Hugs.

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I live 3. 5 hours from my transplant center… The Dr's here let him know when I'm in the hospital

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@racing212

The Dr. Said my amonia levels have come down a lot since i came in…I've had really bads one's where I'm in hospital 2 weeks in another town with a bigger hospital. And i don't know how to use phone

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@racing212 I'm happy to hear your ammonia levels are down. This is a victory! Be easy on yourself. If you have troubles with the phone ask a nurse for assistance. I was in the hospital for 3 weeks and when i forgot something or needed help I always asked a nurse. They are usually very happy to assist.

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@contentandwell

@racing212 Kudos to your foreman for knowing enough to bring you in. I am thinking it must not have been that severe an episode if today you are able to be on the computer and communicating. When my episodes were severe enough for me to end up in the hospital it was a couple of days before I was able to communicate with any sense on my iPad, I sometimes couldn't even remember how to get on it!

Take care and get better quickly, it sounds as if this will be a brief stay in the hospital.
JK

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@contentandwell I was the same. I had to rely on my contacts list to call anyone. The nurses were a great help. I kept losing my phone in a tangle of bedsheets and IV lines. They would always find it for me. My tablet lay on my side table always getting entangled in power lines. I had my devices charging and unplugging them to get to the bathroom was always a struggle. I laugh now thinking of all the predicaments I got myself into.

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@flagal22

@tgshomes The diagnosis I was given was NASH. I had one severe HE episode 7 months prior to transplant. I woke up one morning very incoherent and combative about getting dressed and going to work that day. I tried to text my work supervisor but could only type nonsense into my cell phone. Luckily my daughter was visiting and called my husband to come home. I was hospitalized for 3 days but do not remember the first 2 days. My ammonia level was too high and affected my brain. They increased my Lactulose and brought the ammonia level down. The downside of the Lactulose was having severe diarrhea and needed to wear Depends. I was no longer allowed to drive. I also noticed short term memory issues. My husband was my primary caregiver and thank goodness he would remember what the medical staff at Mayo in Jacksonville would explain to us before and after the transplant. I was also very fatigued and would fall asleep frequently each day. As the months went on my health declined very quickly with 3 more hospitalizations due to kidney failure. I also started to have ascites and needed a paracentesis once a week to remove between 8 to 9 1/2 liters of fluid. The week prior to my liver transplant I was again released from the hospital and became very weak especially in my legs and was barely eating anything. I also had edema in my legs and needed shoes 2 sizes larger than I normally wore. I was hospitalized again after a week out of the hospital with a MELD of 44, over the 6 to 40 scale that we were told that there was. I did receive the liver transplant that night.
Since my liver transplant 8 months ago, most all of these symptoms went away. I do feel the HE episode and memory issues did create some changes to my brain. I have trouble remembering a word to use in the middle of sentences frequently. It takes me a few seconds and I usually can recall the correct word.
I hope your father receives a liver very soon. You sound like a wonderful son and an asset as a caregiver along with your mother. My children stepped up when we needed their help during my illness and appreciated all they did for us.

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@flagal22 they didn’t tell you to titrate the lactulose yourself to achieve the desired effects? I generally took about 30 – 35 ml, 3 times a day but if that wasn’t doing it increased it to 40 or so. When a hospitalist put me on over 60 ml, 4 times a day, all heck broke loose and that was when my husband had to get disposable underwear for me. When I decreased it things normalized with controllable loose bowel movements, 3 or 4 times a day.
Your MELD is one of the highest I’ve heard of. You must have really felt miserable. The last time before transplant that mine had been calculated was a few weeks before. Things were going downhill fast so I wonder if it was calculated again when I went in for the transplant.
I didn’t buy new shoes, I had some Ugg slip on slippers and they were the only thing I could get on my feet.
These conversations make me wonder if the little memory problems I have could be due to my HE episodes, not simply old-age.

@racing212 ammonia levels can really fluctuate greatly which is why testing ammonia randomly is not a good indication of an impending HE episode. I was discharged from the hospital after an HE episode but was back in a day and a half later, ammonia up again.

@gaylea1 when I had HE episodes I went to my local hospital. I was very uncontrollable so my husband needed to get me somewhere fast. My local hospital apparently knew nothing about HE, and initially I had not even been diagnosed yet, so I got no sympathy and little help from most of the nurses. To them I was a problem patient. 😥. I hope I NEVER have to be in that hospital again, it would give me nightmares.
JK

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@contentandwell

@flagal22 they didn’t tell you to titrate the lactulose yourself to achieve the desired effects? I generally took about 30 – 35 ml, 3 times a day but if that wasn’t doing it increased it to 40 or so. When a hospitalist put me on over 60 ml, 4 times a day, all heck broke loose and that was when my husband had to get disposable underwear for me. When I decreased it things normalized with controllable loose bowel movements, 3 or 4 times a day.
Your MELD is one of the highest I’ve heard of. You must have really felt miserable. The last time before transplant that mine had been calculated was a few weeks before. Things were going downhill fast so I wonder if it was calculated again when I went in for the transplant.
I didn’t buy new shoes, I had some Ugg slip on slippers and they were the only thing I could get on my feet.
These conversations make me wonder if the little memory problems I have could be due to my HE episodes, not simply old-age.

@racing212 ammonia levels can really fluctuate greatly which is why testing ammonia randomly is not a good indication of an impending HE episode. I was discharged from the hospital after an HE episode but was back in a day and a half later, ammonia up again.

@gaylea1 when I had HE episodes I went to my local hospital. I was very uncontrollable so my husband needed to get me somewhere fast. My local hospital apparently knew nothing about HE, and initially I had not even been diagnosed yet, so I got no sympathy and little help from most of the nurses. To them I was a problem patient. 😥. I hope I NEVER have to be in that hospital again, it would give me nightmares.
JK

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@contentandwell I am so sorry you had such bad experiences. My first, and worst HE episode is what led me to diagnosis. My husband came home early from work to find me incoherent. He insisted I go to the hospital but I thought I was fine. He called my daughter and with much resistance on my part they called an ambulance. I don't recall going to the hospital or much of anything for 3 weeks. My son flew in from Ottawa as they thought I might not make it. The nurses were kind and concerned. I had several nurses check in on me as their shifts changed and they would visit with me (so I'm told). I didn't recognize many but they all knew me. I was indeed fortunate. I don't know if your hospitals have this procedure but when my nurses changed they had a board where they would write their name and the date. My family were super impressed with all the nurses and aides.

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@gaylea1

@contentandwell I am so sorry you had such bad experiences. My first, and worst HE episode is what led me to diagnosis. My husband came home early from work to find me incoherent. He insisted I go to the hospital but I thought I was fine. He called my daughter and with much resistance on my part they called an ambulance. I don't recall going to the hospital or much of anything for 3 weeks. My son flew in from Ottawa as they thought I might not make it. The nurses were kind and concerned. I had several nurses check in on me as their shifts changed and they would visit with me (so I'm told). I didn't recognize many but they all knew me. I was indeed fortunate. I don't know if your hospitals have this procedure but when my nurses changed they had a board where they would write their name and the date. My family were super impressed with all the nurses and aides.

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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

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@contentandwell

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

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I have also had a problem withHE and believe I’ve suffered permanent brain damage from it. Just wanted to say that I have enjoyed reading your posts and responses. I can relate oh so well! Thanks for sharing!

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@rowdyramsey

I have also had a problem withHE and believe I’ve suffered permanent brain damage from it. Just wanted to say that I have enjoyed reading your posts and responses. I can relate oh so well! Thanks for sharing!

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@rowdy Ramsey I am very sorry that HE may have given you permanent brain damage. I have heard that can happen but if it did for me it was fairly minor – some forgetfulness. Is there any therapy that might help with it? There is so much they can do these days and they are always finding new therapies. Maybe a really good neurologist could help.

You have mentioned having a case pending. Who would you be suing? It sounds as if all that could be done, was. You were taking large amounts of lactulose to try to minimize HE, and being drained of fluid regularly. I did not have significant fluid build-up until shortly before my transplant, I did have edema when I traveled, but never needed to have fluid drained. I was on two diuretics.
JK

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@contentandwell

@rowdy Ramsey I am very sorry that HE may have given you permanent brain damage. I have heard that can happen but if it did for me it was fairly minor – some forgetfulness. Is there any therapy that might help with it? There is so much they can do these days and they are always finding new therapies. Maybe a really good neurologist could help.

You have mentioned having a case pending. Who would you be suing? It sounds as if all that could be done, was. You were taking large amounts of lactulose to try to minimize HE, and being drained of fluid regularly. I did not have significant fluid build-up until shortly before my transplant, I did have edema when I traveled, but never needed to have fluid drained. I was on two diuretics.
JK

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I have started seeing a neurologist. They intend to do certain brain scans etc… hepetology said it’s possible that I have suffered brain damage. The court I’m talking about is disability. They want to deny,deny,deny. They fail to look at the problems I have now. They just say,oh her liver is better so send her to work 40 hours a week. It takes me 3 hours to get enough energy to just start the day. My memory constantly defies me. The doctor said I have severe depression and am forming a eating disorder. A restrictive eating disorder is what they said. I’m not hungry and haven’t been able to eat. I feel I am unable to swallow food sometimes. I eat an apple everyday and drink one ice mocha in the morning/afternoon. I had a colonoscopy on Tuesday and I haven’t been able to eat since. It’s only been several days. Normally I throw something else in their to eat,like a turkey sandwich. I don’t know if I’m doing it on purpose or if their is something medically wrong with me. I do have doctors checking on me and following me. I’ve been completely honest with the doctors. Even an eating disorder can’t get you disability. Guess they will approve me when I’m dead!

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@rowdyramsey

I have started seeing a neurologist. They intend to do certain brain scans etc… hepetology said it’s possible that I have suffered brain damage. The court I’m talking about is disability. They want to deny,deny,deny. They fail to look at the problems I have now. They just say,oh her liver is better so send her to work 40 hours a week. It takes me 3 hours to get enough energy to just start the day. My memory constantly defies me. The doctor said I have severe depression and am forming a eating disorder. A restrictive eating disorder is what they said. I’m not hungry and haven’t been able to eat. I feel I am unable to swallow food sometimes. I eat an apple everyday and drink one ice mocha in the morning/afternoon. I had a colonoscopy on Tuesday and I haven’t been able to eat since. It’s only been several days. Normally I throw something else in their to eat,like a turkey sandwich. I don’t know if I’m doing it on purpose or if their is something medically wrong with me. I do have doctors checking on me and following me. I’ve been completely honest with the doctors. Even an eating disorder can’t get you disability. Guess they will approve me when I’m dead!

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@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

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