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!

Just out of curiosity does anybody have any credible information out there regarding cellular memory transference? My wife and I were talking about that the other day. We are both Packer fans….she said as long as I don’t instantly become a Vikings fan it’s all good. 🙂

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@rodney9999

Just out of curiosity does anybody have any credible information out there regarding cellular memory transference? My wife and I were talking about that the other day. We are both Packer fans….she said as long as I don’t instantly become a Vikings fan it’s all good. 🙂

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@rodney9999 You got me curious about this so I did some googling. Most of the traits and tastes that people think they may have acquired from their donor can be explained by other things. Simply going through what we have gone through can have an effect on a person. I am pretty much the same person I was before, perhaps a bit more sympathetic but that was always a trait of mine. If I had to come up with any change in me I think I enjoy moderately hot (spicy) foods more than I used to but I also think that as a person ages their taste buds are not as strong so that could be the reason for that.
JK

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@tayloryvette

I too am a pre-liver transplant candidate and have just as many questions, however, I wanted to introduce myself. Taylor is my nick name, I live in very rural part of Michigan with my husband, a dog and a cat. Now a Real Estate Agent, I was a Restaurant/Bar owner and in the business for 30 years. . Just never thought Liver Disease would slowly creep in and take over my body without feeling or knowing a thing. Scary! I am in my 4th year with end-stage and getting more and more scared. My meld score went from a 16 down to a 10, 2 years ago, however I am scheduled for a current assessment and labs to determine if it has gone back up. My symptoms slowly returning are telling me to get the transplant process moving. Waiting on a number is insane.

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Hi Taylor

Please try not to be too scared. I, too, lived in a rural area with my husband and our animals; we had a busy hotel an , yes, liver disease, can creep up on you especially when you are so busy and distracted all the time. I was ill for four years without realising what was wrong until the physical symptoms became so bad that i sought help from my GP. After that, I was in the hands of my consultants and hospital who were wonderful.

I had my transplant five years ago and I feel as if I have a whole new life. I am on minimal medication and, honestly, some days I think it was all a dream. It was also a good learning experience is so many ways so it's not all negative by any means. I have a better life now and I value that life more than ever.

I know that I am in the unusual position of having no financial worries as health care here in Scotland is completely free. I am so sad when I hear the stories on this wonderful forum about people struggling to pay for care and medication.

Please be assured that members of this forum will give you all the help and advice you need. I wish I had known about it when I had my own transplant. There is a wonderful life waiting for you after your transplant.

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@gaylea1

@parmcat Hello! Hi am in London Ontario waiting for a transplant. I have never see anyone on this site before from our area. I joined connect at Mayo about a year ago as I had no support group here in London. This site has been helping me along my journey. They have been invaluable in support and advice. I was put on the wait list July 10th 2016. My MELD score is 30+ and am still waiting for a match. I would love to hear about your experiences with the transplant clinic at UH. I would love to hear frm you.

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Did you get your liver?

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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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Id sure like to talk to you about cieders..is that possible

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@craiger, I want to welcome you to Mayo Connect. I want to tag @luckonetj o this conversation because he is the patient who mentioned Cedar Sinai. I know that he can answer your questions about his experience.

Are you a liver patient? Are you considering an organ transplant?

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@craiger

Id sure like to talk to you about cieders..is that possible

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@craiger , since I am a transplant recipient at CS. I would be happy to help with info.

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@rosemarya

@craiger, I want to welcome you to Mayo Connect. I want to tag @luckonetj o this conversation because he is the patient who mentioned Cedar Sinai. I know that he can answer your questions about his experience.

Are you a liver patient? Are you considering an organ transplant?

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Yes I am and I think I will need one very soon..I have NASH and wanted to ask a few quistians.

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@luckonetj

@craiger , since I am a transplant recipient at CS. I would be happy to help with info.

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Thank you so much, I was wondering if you had any really bad right shoulder pain add and shoulder blade pain before you had your transplant and if you know anyone in this group that needed a transplant because of Nash

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@craiger

Yes I am and I think I will need one very soon..I have NASH and wanted to ask a few quistians.

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@craiger, the first step is is diagnosed liver disease. Next, a federal from your primary doctor to a liver transplant seorgon. Your medical insurance should have a list of heptologists that will be able to refer you for liver transplant evaluation. If you would like more information about a transplant evaluation I recommend calling Cedar Sinai Comprehensive liver transplant center in West Los Angeles. I assume you are in the LA area. Mayo Clinic seems to be a good choice as well as UCLA, and USC Transplant centers. I know of people that have had transplant at all the above centers. Above all you need to know what your MELD score is. I was inter hospital transferred to CS at MELD 40. I was very ill and I was given the first transplant intensive care bed that was available at the time. Dr.Nissin was my liver Surgeon. Dr. Sean Cao I was my liver specialist. Cedar Sinai and Fountain Valley in that order. Be well, Tim

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@craiger

Thank you so much, I was wondering if you had any really bad right shoulder pain add and shoulder blade pain before you had your transplant and if you know anyone in this group that needed a transplant because of Nash

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@Grainger, did have right shoulder pain. Due to laying down for a long period of time.

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@craiger

Yes I am and I think I will need one very soon..I have NASH and wanted to ask a few quistians.

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@craiger My cirrhosis was from NASH. I don’t recall any shoulder pain, but the symptoms I did have were declining platelet counts, shaky hands, HE episodes, being always cold, and terrible cramps, primarily in my thighs.

Please feel free to ask me anything. If you include the @ sign, followed by my Connect name (contentandwell). It will go to everyone but it will specifically let me know that I was mentioned.
JK

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