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!

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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@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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Thank you so much for sharing. Yes I have a great transplant team. My wifes says that I have stabilized due to resigning from work. Maybe she's right? I just get depressed at times. Thank you again.

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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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Nice picture, @luckonetj. I hope you'll add it to your profile. Here's how to update your profile: https://connect.mayoclinic.org/page/about-connect/newsfeed-post/how-to-update-your-profile/

@jim1208, it's not easy being on the waiting list and depression does seep in. I know many here can relate. What do you do to pull yourself out of the depression?

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@jim1208

I am a year and half into waiting for transplant. MELD is stable at 15 to 17. I am on long term disability. Worst issues are with fatigue and lightheadedness and foggy. Anyone relate? Thanks.

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Yes, I was very fatigued for over a year before I was diagnosed with end stage liver cirrhosis (NASH) and did not realize why. I was diagnosed in May of 2018. My MELD score was 10 in September 2018. I did have an episode of hepatic encephalopathy (was not in a very coherent state one morning) and was hospitalized for about a day and a half. It was due to a high ammonia level in my blood. By December 2018 I was admitted to the Mayo Clinic in Florida with a MELD of 39 and in kidney failure. My MELD was brought down to 34 and the kidneys improved and I was listed at that time. My health declined very rapidly after the 1st of the year and with MELD of 40+ I received my transplant the beginning of February. I know it is difficult waiting and wondering when will I get a transplant.

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@flagal22

Yes, I was very fatigued for over a year before I was diagnosed with end stage liver cirrhosis (NASH) and did not realize why. I was diagnosed in May of 2018. My MELD score was 10 in September 2018. I did have an episode of hepatic encephalopathy (was not in a very coherent state one morning) and was hospitalized for about a day and a half. It was due to a high ammonia level in my blood. By December 2018 I was admitted to the Mayo Clinic in Florida with a MELD of 39 and in kidney failure. My MELD was brought down to 34 and the kidneys improved and I was listed at that time. My health declined very rapidly after the 1st of the year and with MELD of 40+ I received my transplant the beginning of February. I know it is difficult waiting and wondering when will I get a transplant.

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Jim, that waite from December 18 to February must have been tough. All is good now, I hope!

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Well I am 3 years sober now so I go to meetings, I sponsor men when I can and I have a sponsor. Talking about things helps some. I wish I would have seen this support group sooner. Thank you everyone for your kind responses!

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Jim, I looked around and this is a rare group. My hospital has a blog but nothing like this. I became sober seven months before my transplant. I joined AA group on Facebook called PrimeTime Now. I like the positive vibe of the people. Really thought, Alocohol does not fit into my new life and I wouldn't want to let the people down who helped me get to this point in my life. Life being the key word. Tim

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@flagal22

Yes, I was very fatigued for over a year before I was diagnosed with end stage liver cirrhosis (NASH) and did not realize why. I was diagnosed in May of 2018. My MELD score was 10 in September 2018. I did have an episode of hepatic encephalopathy (was not in a very coherent state one morning) and was hospitalized for about a day and a half. It was due to a high ammonia level in my blood. By December 2018 I was admitted to the Mayo Clinic in Florida with a MELD of 39 and in kidney failure. My MELD was brought down to 34 and the kidneys improved and I was listed at that time. My health declined very rapidly after the 1st of the year and with MELD of 40+ I received my transplant the beginning of February. I know it is difficult waiting and wondering when will I get a transplant.

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I went into a hepatic encephlalopathic coma that kept me in hospital for a month. I was in and out of consciousness the whole time. It took 2 months to remeber the day of the week, the date and the month. I forgot my address, phone number and all banking and personal accounts. Luckily i had my children as my Power of Attorneys for property already in place. I still can't recall anything about my stay in the hospital during that time. Apparently my life was on the line touch and go for the first few weeks. My kids were preparing for the worst every day. I have extreme feelings of guilt that they had to go through that. The good news is that I receved my liver November 28 2018. I am so grateful every single day.
Note: Take your lactulose if prescribed to avoid an HE episode!

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@jim1208

Well I am 3 years sober now so I go to meetings, I sponsor men when I can and I have a sponsor. Talking about things helps some. I wish I would have seen this support group sooner. Thank you everyone for your kind responses!

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@jim1208, I want to welcome you to Connect. The wait for a transplant can be a long and lonely time, and I commend you for what you are doing for yourself and others along the way. I am confident that the experiences that you have shared are giving hope to someone else who will read it.

I am a recipient, and I know how long lonely the wait can feel. I joined Connect after my transplant, and I am continually amazed at the strength and courage that are shared here. I am happy that have joined the discussion. I invite you to join in any of the discussions that look interesting to you. Questions and comments are always welcome!
How are you feeling?
And how about your wife, How is she holding up with this waiting? She might enjoy this discussion about What to Pack – https://connect.mayoclinic.org/discussion/packing-question/

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@jim1208

I am a year and half into waiting for transplant. MELD is stable at 15 to 17. I am on long term disability. Worst issues are with fatigue and lightheadedness and foggy. Anyone relate? Thanks.

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@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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@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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@kltchrmn my license was suspended Dec 2016 for the same reason. The doctors just signed the forms today to reinstate my license at our ministry of transportation. I lived in a fairly rural area – no buses and taxis were expensive to get into the city. I was literally imprisoned at home all that time. Got pretty lonely stuck in the house day after day, month after month and being ill and waiting for the "call". I can't wait to get my license back!

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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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Interesting to me that your Doctor diagnosed encephalopathy without a blood test. I had one incident that scared me. I was due for a parasytethis and my temperature went up to 106. I had a momentary black out. Wrote memory took over and I made it home. That day I went in to get drained and they tested for haptic Encephalopathy. Negative. Must have been the fever. Has anyone made it to Meld 40 without being on the transplant list?

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@gaylea1

@kltchrmn my license was suspended Dec 2016 for the same reason. The doctors just signed the forms today to reinstate my license at our ministry of transportation. I lived in a fairly rural area – no buses and taxis were expensive to get into the city. I was literally imprisoned at home all that time. Got pretty lonely stuck in the house day after day, month after month and being ill and waiting for the "call". I can't wait to get my license back!

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That is a big milestone for you, @gaylea1. This has been one big rollercoaster year for you.
Be careful driving. When I returned to driving after my transplant and recovery, I learned that distractions became a problem for my focus. Even today, I find that I need quiet in my car.

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@jim1208

Just seems like its never gonna get worse or better. Frustrating

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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

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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Hi, @livertrex, and Welcome to Connect. I am happy that you have chosen to participate by sharing your experience. Before my transpant, I did not have HE, but I did not drive because I becamem physically too sick. My husband, who was retired, was my caregiver and my driver when I needed to go somewhere. That was 10 years ago.

How are you getting along since the HE episode? Are you waiting for a liver transplant?

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