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!

Yes maam I am staying overnight. Have to, Mayo is 140 miles from home. I get far to run down to drive that much. Yes I did the tour of The Gift of Life house.

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Thank you so much. I needed to hear that.

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@jim1208 and all.
Here is a helpful hint: when you are directing your response to a particular person you can use that person’s @name and they will receive a notification that they have been mentioned.

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@gaylea1

Yes I can relate. I was light headed and dizzy most of the time but several other symptoms were a lot worse. My MELD was 34 when i was 16 months on wait list. I received my liver 17 months in from being on the wait list. I was very ill the year prior to diagnosis. My transplant was Nov 28 2018. I'm still light headed but thank goodness the worst symptoms are all gone.

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@gaylea1 What does the doctor say about still being light headed? I had nothing like that after my transplant, just some fatigue for a while. I hope the light-headedness goes away soon, I would not want to live like that on a daily basis. Is it pretty much all of the time?
JK

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@luckonetj

Jim,
I was extremely ill for 6 months with a meld score of 27 and above. My Family doctor asked if I wanted to go on disability/ssI but didn't for personal reasons.
I received my liver by way of an emergency Transplant at Meld 40+ when not occupied I would rest at home. My family doctor shared that I had 6 months tops until a transplant was needed. Other than that sobering bit of news I learned all thing Transplant on my own and with the help of the conversations I had with a liver Surgeon once, and incidental conversations I had with Nurses during parasynthesis. Once I was transferred to the transplant hospital the all the services were available to me including Amy my Transplant Social worker, Leslie my Transplant coordinator, Dr. Kim and Nessin, Toto and Klein and Brook and Vesna post op Transplant. All totally professional and caring to whom I remain grateful to this day. I hope you have the same experience that I have had with your team

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Great picture, @luckonetj you look nice and healthy.

From your post, it sounds as if you went through most of your pre-transplant time not seeing a hepatologist, but your regular doctor. Is that accurate? That's pretty unusual. My PCP immediately had me go to a hepatologist. He did some research and had me go to one that he thought would be good but neither my husband nor I cared for her so I did my own research and found a different one. The one he sent me too was like a little Nazi!
The doctor who handled you for most of the time must have been unusually good to be able to handle cirrhosis, and the important thing is that you are now healthy with all of that behind you. It's such a relief, isn't it?
JK

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@kltchrmn

@jim1208
I’m at Mayo Rochester. I just started year three on the list. My MELD has been all over the place from my current 11 to 26. At my last check up my doctor stopped my driving due to “overt signs” of Encephalopathy. I have been on medical disability through my employer since January 2nd. Luckily I live in the twin cities and attend a weekly support group for people pre- and post-transplant at the U of M. A little harder now I’m not allowed to drive. I have no idea how long it will be before I’m eligible for transplant.

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@jim1208 You are having HE at a MELD of only 11? I didn't know that could happen. The thing that brought my cirrhosis to the attention of my doctor was an HE episode. It still took almost a year and a half to get a diagnosis despite having other symptoms such as lowering platelet counts, shaky hands, edema, and chills. I was then sent to a hepatologist and she immediately prescribed xifaxan. I was on lactulose. I didn't need lactulose for almost a year while on xifaxan but then as my cirrhosis progressed I had another HE episode so had to resume taking lactulose along with xifaxan.
I was very lucky. When I was not having an HE episode my cognitive abilities were not affected at all. I was dreading that day that they take my license away but it didn't happen. The last summer prior to transplant I told my husband that I didn't want to have drive far myself. I always either woke up having an HE episode, or had warning symptoms. I would get a bad stomach ache. If I was out and my stomach hurt I would immediately head home. Sometimes nothing further happened but better safe than sorry.

@luckonetj I was in the hospital due to an undiagnosed HE episode when the neurologist suspected that it was my liver so that was when they tested me for ammonia. I had been sent to a neurologist because it was thought that the confusion episodes were neurological, but of course they were not.
How could a person get that high a MELD without being on the transplant list? I thought when it hit a certain number that was when you were put on the list. Mine was in the teens when I was put on the list and fortunate to get transplanted at MELD 28. I was due for my MELD to be increased at the end of the month and I am sure it would have been in the 30s at that point. I had really gone downhill.
JK

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@livertrex

The doctor told me not to drive since I was impaired. I have been dizzy since my ammonia levels went up. My own ammonia levels were so high that I had to go to the ER.

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@livertrex I too welcome you to Connect.
When I had cirrhosis I too had HE episodes but mine were distinct and did not have a constant affect on me. Do you have a pretty much constant state of mild confusion and dizziness? Some of my episodes did land me in the hospital and my ammonia was very high. I also had episodes that I could just sleep off. The more serious ones were really bad. I remember most of them, but there are a few I do not. I have very vague memories of getting to the hospital when I had serious episodes. They were very scary for me, I felt like I was losing my mind.
JK

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I can sleep them off. I definitely feel like I am losing my mind. Always dizzy and lightheaded. My right hand has started shaking some now.

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@contentandwell

@jim1208 You are having HE at a MELD of only 11? I didn't know that could happen. The thing that brought my cirrhosis to the attention of my doctor was an HE episode. It still took almost a year and a half to get a diagnosis despite having other symptoms such as lowering platelet counts, shaky hands, edema, and chills. I was then sent to a hepatologist and she immediately prescribed xifaxan. I was on lactulose. I didn't need lactulose for almost a year while on xifaxan but then as my cirrhosis progressed I had another HE episode so had to resume taking lactulose along with xifaxan.
I was very lucky. When I was not having an HE episode my cognitive abilities were not affected at all. I was dreading that day that they take my license away but it didn't happen. The last summer prior to transplant I told my husband that I didn't want to have drive far myself. I always either woke up having an HE episode, or had warning symptoms. I would get a bad stomach ache. If I was out and my stomach hurt I would immediately head home. Sometimes nothing further happened but better safe than sorry.

@luckonetj I was in the hospital due to an undiagnosed HE episode when the neurologist suspected that it was my liver so that was when they tested me for ammonia. I had been sent to a neurologist because it was thought that the confusion episodes were neurological, but of course they were not.
How could a person get that high a MELD without being on the transplant list? I thought when it hit a certain number that was when you were put on the list. Mine was in the teens when I was put on the list and fortunate to get transplanted at MELD 28. I was due for my MELD to be increased at the end of the month and I am sure it would have been in the 30s at that point. I had really gone downhill.
JK

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@jim1208 I have signs of HE at 11. Shaking hands at times, easily off-balance, slowdown in speech, difficult word retrieval. My worst episode was in December 2017. Was hospitalized after a bout with norovirus – total lack of memory. My MELD has gone down since then. No serious attacks since then, just the symptoms.

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@contentandwell

@jim1208 You are having HE at a MELD of only 11? I didn't know that could happen. The thing that brought my cirrhosis to the attention of my doctor was an HE episode. It still took almost a year and a half to get a diagnosis despite having other symptoms such as lowering platelet counts, shaky hands, edema, and chills. I was then sent to a hepatologist and she immediately prescribed xifaxan. I was on lactulose. I didn't need lactulose for almost a year while on xifaxan but then as my cirrhosis progressed I had another HE episode so had to resume taking lactulose along with xifaxan.
I was very lucky. When I was not having an HE episode my cognitive abilities were not affected at all. I was dreading that day that they take my license away but it didn't happen. The last summer prior to transplant I told my husband that I didn't want to have drive far myself. I always either woke up having an HE episode, or had warning symptoms. I would get a bad stomach ache. If I was out and my stomach hurt I would immediately head home. Sometimes nothing further happened but better safe than sorry.

@luckonetj I was in the hospital due to an undiagnosed HE episode when the neurologist suspected that it was my liver so that was when they tested me for ammonia. I had been sent to a neurologist because it was thought that the confusion episodes were neurological, but of course they were not.
How could a person get that high a MELD without being on the transplant list? I thought when it hit a certain number that was when you were put on the list. Mine was in the teens when I was put on the list and fortunate to get transplanted at MELD 28. I was due for my MELD to be increased at the end of the month and I am sure it would have been in the 30s at that point. I had really gone downhill.
JK

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@contentandwell, my wife informed me that I had a bought of HE a few days before my transplant while at Hospital. I remember being extremely talkative and upset.

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@contentandwell

Great picture, @luckonetj you look nice and healthy.

From your post, it sounds as if you went through most of your pre-transplant time not seeing a hepatologist, but your regular doctor. Is that accurate? That's pretty unusual. My PCP immediately had me go to a hepatologist. He did some research and had me go to one that he thought would be good but neither my husband nor I cared for her so I did my own research and found a different one. The one he sent me too was like a little Nazi!
The doctor who handled you for most of the time must have been unusually good to be able to handle cirrhosis, and the important thing is that you are now healthy with all of that behind you. It's such a relief, isn't it?
JK

Jump to this post

@contentandwell , my first doctor was a GP and was of no help. I looked for a liver specialist in my HMO network and found a liver surgeon who was the only liver specialist in network in my area. I asked for a referal to one of the transplant hospitals near me. My primary and liver doctor went back and forth deciding who would write the referal for a transplant evaluation. On my second and last meeting with the liver surgeon he telephoned a liver transplant surgeon at Cedar Sinai. I had a phone number and a name of a transplant surgeon when I entered the hospital at MELD 40. I gave the name and phone number to the attending nurse who them gave it to the department that found a open bed a Cedar Sinai. However, it was luck where I ended up because my condition was such that I would get the first bed that opened up at either UCLA, SC. USC Transplant centers. In hind sight I I credit wishful thinking and many prayers by my lovedones. My illness was ten years long.I was used to the illness and could have gone in either direction. My family made the loving choice to keep me around. The vote was 3-0 yet my vote didn't really count. I was tired of being sick and had planned for either outcome. The unknowns were disconcerting until I finally gave up trying to control the situation and trusted my doctors and my faith in the future. It all turned out OK.

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@luckonetj

@contentandwell , my first doctor was a GP and was of no help. I looked for a liver specialist in my HMO network and found a liver surgeon who was the only liver specialist in network in my area. I asked for a referal to one of the transplant hospitals near me. My primary and liver doctor went back and forth deciding who would write the referal for a transplant evaluation. On my second and last meeting with the liver surgeon he telephoned a liver transplant surgeon at Cedar Sinai. I had a phone number and a name of a transplant surgeon when I entered the hospital at MELD 40. I gave the name and phone number to the attending nurse who them gave it to the department that found a open bed a Cedar Sinai. However, it was luck where I ended up because my condition was such that I would get the first bed that opened up at either UCLA, SC. USC Transplant centers. In hind sight I I credit wishful thinking and many prayers by my lovedones. My illness was ten years long.I was used to the illness and could have gone in either direction. My family made the loving choice to keep me around. The vote was 3-0 yet my vote didn't really count. I was tired of being sick and had planned for either outcome. The unknowns were disconcerting until I finally gave up trying to control the situation and trusted my doctors and my faith in the future. It all turned out OK.

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@luckonetj, I did not experience HE. But I can identify with what you have shared, and your post has touched me deeply and stirred up many memories and emotions. Thank you. We have much to be thankful for.

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@contentandwell

@gaylea1 What does the doctor say about still being light headed? I had nothing like that after my transplant, just some fatigue for a while. I hope the light-headedness goes away soon, I would not want to live like that on a daily basis. Is it pretty much all of the time?
JK

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@contentandwell the doctors haven't said too much. I experience the ligjt headedness daily. Mainly I get it going up and downstairs. Somtimes if I am carrying things I get dizzy too. I'm thinking more exercise is needed.

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@contentandwell

@livertrex I too welcome you to Connect.
When I had cirrhosis I too had HE episodes but mine were distinct and did not have a constant affect on me. Do you have a pretty much constant state of mild confusion and dizziness? Some of my episodes did land me in the hospital and my ammonia was very high. I also had episodes that I could just sleep off. The more serious ones were really bad. I remember most of them, but there are a few I do not. I have very vague memories of getting to the hospital when I had serious episodes. They were very scary for me, I felt like I was losing my mind.
JK

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The first episode is how I found out that I had liver cancer, because they did a CT scan. Then I had several issues my temperature went up and I had to go to ER once again. They put a needle in my side and pumped all this fluid out. I guess it's part of the liver failure. I am on an adventure. Learning about things all along the path. i didn't know that this was a path that I would be taking, but trying to make the best of it. It's just hard to work because I bump into walls and I'm afraid to drive to work, and I'm also very confused it's hard to make good decisions.

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@livertrex

The first episode is how I found out that I had liver cancer, because they did a CT scan. Then I had several issues my temperature went up and I had to go to ER once again. They put a needle in my side and pumped all this fluid out. I guess it's part of the liver failure. I am on an adventure. Learning about things all along the path. i didn't know that this was a path that I would be taking, but trying to make the best of it. It's just hard to work because I bump into walls and I'm afraid to drive to work, and I'm also very confused it's hard to make good decisions.

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@livertrex, I wish you the best and a speedy recovery. Are the Doctors recommending A partial Liver section? My liver specialist specialized in such surgeries.

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