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!

@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 my HE episode occurred shortly after diagnosis I don’t remember the dosage but took it 4 times a day. A month and a half later I was being evaluated at Mayo they added xifaxin and had me titrate the lactulose but I still had issues. I met 2 patients at Mayo that had MELDs in the mid 40’s before it happened to me. I read an article about increasing the MELD scale because more people are having scores above 40. I do not remember where I read this, sorry. Having only one HE episode but noticed short term memory problems before transplant too. My local Gastroenterologist asked me in September if I suffered brain damage. I responded “no” but since then am starting to believe my short term memory issues may be brain damage.

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@flagal22

@contentandwell my HE episode occurred shortly after diagnosis I don’t remember the dosage but took it 4 times a day. A month and a half later I was being evaluated at Mayo they added xifaxin and had me titrate the lactulose but I still had issues. I met 2 patients at Mayo that had MELDs in the mid 40’s before it happened to me. I read an article about increasing the MELD scale because more people are having scores above 40. I do not remember where I read this, sorry. Having only one HE episode but noticed short term memory problems before transplant too. My local Gastroenterologist asked me in September if I suffered brain damage. I responded “no” but since then am starting to believe my short term memory issues may be brain damage.

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@flagal22 I recall reading that MELD can measure above 40 but it is not at all typical so they generally give that as the top of the range. Perhaps the new way to calculate MELD has made those high numbers more common. You were so lucky to have only had one HE episode. Did you also modify your diet? If I recall correctly, you did not wait long for a transplant, right?
I am really beginning to wonder if my short term memory could be from my HE episodes. I think some of mine is simply not paying enough attention, but that would not apply to things I read, or things I say. My son gets exasperated with me when I tell him something, saying I've told him that 100 times. Obviously he exaggerates but I know I do tell him things more than once. I think it's simply because I don't remember if I told him or someone else!
JK

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@gaylea1

@mostlybill I was taken off prednisone and cellcept months after transplant . I had very bad tremors and shaking and once off those meds i was fine.

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I see the surgeon on Thursday to discuss getting off the prednisone. Yay. The trouble is that none of this is that simple.

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@contentandwell

@flagal22 I recall reading that MELD can measure above 40 but it is not at all typical so they generally give that as the top of the range. Perhaps the new way to calculate MELD has made those high numbers more common. You were so lucky to have only had one HE episode. Did you also modify your diet? If I recall correctly, you did not wait long for a transplant, right?
I am really beginning to wonder if my short term memory could be from my HE episodes. I think some of mine is simply not paying enough attention, but that would not apply to things I read, or things I say. My son gets exasperated with me when I tell him something, saying I've told him that 100 times. Obviously he exaggerates but I know I do tell him things more than once. I think it's simply because I don't remember if I told him or someone else!
JK

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If u have seen any of my posts,u would know I’m 100% behind u about HE. I’m the one who has a disability case trying to prove that my instant and short term memory loss is due to permanent brain damage caused from excessive and long term HE episodes. My memory has gotten soo bad! Mostly it’s instant memory loss. Like I forget what I’m saying,can’t remember to turn the stove off,things like that. I suffered from HE for almost 2 years straight. It was daily HE episodes. My ammonia levels were 190+. I lived on lactolose for a year and a half. Every 3 hrs I had to drink a dose. I crapped my brains out for over a year everyday. I also was struck down with fluid every 2 weeks. I had a standing order to tap my abdomen every 12 days. They pulled ten thousand cc off. That’s 6 2liter bottles! Image that ,6 2liters of coke. Got that vision? Now,instead of coke replace it with my fluid. That’s how much they got for about a year ,tapping me every 12 days. Get this though,I was never yellow. Not my eyes,not my skin,nothing! I was never put on 2 drugs that I hear most of u were on. Something they gave you or the others to help with HE. It’s not lactolose either. It’s called something else. I’m just thinking to myself,why wasent I put on it since I suffered so bad with HE. Do u know what I’m talking about? Anybody?

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@mostlybill

I see the surgeon on Thursday to discuss getting off the prednisone. Yay. The trouble is that none of this is that simple.

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@mostlybill, I'll be thinking of you.
You are absolutely correct: None of this is simple! Remember that we are tough! We are not alone here!
I look forward to hearing from you after you see the doctor. I hope you get a good check-up and a report of a happy liver.

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@rowdyramsey

If u have seen any of my posts,u would know I’m 100% behind u about HE. I’m the one who has a disability case trying to prove that my instant and short term memory loss is due to permanent brain damage caused from excessive and long term HE episodes. My memory has gotten soo bad! Mostly it’s instant memory loss. Like I forget what I’m saying,can’t remember to turn the stove off,things like that. I suffered from HE for almost 2 years straight. It was daily HE episodes. My ammonia levels were 190+. I lived on lactolose for a year and a half. Every 3 hrs I had to drink a dose. I crapped my brains out for over a year everyday. I also was struck down with fluid every 2 weeks. I had a standing order to tap my abdomen every 12 days. They pulled ten thousand cc off. That’s 6 2liter bottles! Image that ,6 2liters of coke. Got that vision? Now,instead of coke replace it with my fluid. That’s how much they got for about a year ,tapping me every 12 days. Get this though,I was never yellow. Not my eyes,not my skin,nothing! I was never put on 2 drugs that I hear most of u were on. Something they gave you or the others to help with HE. It’s not lactolose either. It’s called something else. I’m just thinking to myself,why wasent I put on it since I suffered so bad with HE. Do u know what I’m talking about? Anybody?

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@rowdyramsey, I did not have HE. Please know that I am thinking about you. I hope that you will soon receive the healing and answers that bring a solution that you deserve.

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@rosemarya

@rowdyramsey, I did not have HE. Please know that I am thinking about you. I hope that you will soon receive the healing and answers that bring a solution that you deserve.

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Thank you for your kindness.

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@mostlybill

Thanks for your thoughts. I think the tough part is that we need to come to terms with side effects, they will never go away. As I grow stronger I will be adding yoga to my weekly activities. This was a great help to me with relaxation pre-transplant. Daily walks help as well. I am also eager to resume social activities. See more of friends, grandchildren, and my wife and fewer doctors!

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I have a 6 yr old granddaughter, and I am 10 years post transplant. She know that grandma doesn't lip kiss, and she doesn't mess with my food or water glass. And she has always loved to use my hand sanitizer which she calls hanitizer.
Yes, as you gradually increase your activity, you see good results. My husband and I were able to resume hiking in Great Smokeys at 6 months post surgery with approval from my team, at a slower pace and less rugged trail.

Have you seen this? The Mayo transplant staff took one of the transplant discussions and made this handy list: Top Transplant Hacks: Patients Share Their Best Tips and Tricks. It might have some helpful tips for when you resume tour social activities.
https://connect.mayoclinic.org/page/transplant/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/

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@mostlybill

I see the surgeon on Thursday to discuss getting off the prednisone. Yay. The trouble is that none of this is that simple.

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@mostlybill I had not really noticed a problem from taking prednisone, until I was diagnosed with osteoporosis and discovered that prednisone contributes to that. Now I hope I will get off in the not too distant future. I asked about it at my three year appointment last month but they are not ready to discontinue it yet. I think my transplant center, Mass General, is fairly conservative. Looking forward to hearing if your surgeon approves discontinuing prednisone. I hope so since you are having so many effects from it.

@rowdyramsey Ramona, you certainly did have to put up with a lot more than many of us prior to transplant. Did you say that your memory problems did not start immediately after transplant though? If so then I think they may need to try to find a different cause. The problems are there, but it is possible that the cause is not what you are thinking it is. The end result is the same of course, it sounds like it would be impossible for you to hold down a full time job. I do hope that you can get some type of disability and also that you might be able to find some job to do that would give you some focus, assuming that is allowed when you are on disability. I personally always found working gave me a boost in how I felt and in focus.
JK

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@contentandwell

@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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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.

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@rowdyramsey

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.

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@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

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@rowdyramsey

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.

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@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.

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@gaylea1

@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.

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Wow! You also classify as severe!! That must of been soo scary! Great idea about making lists. I do that but I frequently forget where the list is!! Drinking that much lactulose , I can’t believe you didn’t have diarrhea!! I was on the same dose. Every 4 hours every 24 hrs of every day and many,many more! I will keep u posted! Thanks for sharing with me

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@contentandwell

@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

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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!🙂

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@rowdyramsey

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!🙂

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@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

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