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!

@mditri

Thank you for the articles. I will read them–but it is very hard and discouraging.

He is in Seattle Washington and we are in Dalton Georgia (just south of Chattanooga), so he has had to go through it alone. With covid (and his condition) we couldn't go out there. It has been very stressful. He just texted me. He didn't give me his weight, but they took 8.5 liters (over 14 days). (I'm into measurements). That is 0.61 liters/day–down from 0.83. My guess is his weight will be down again ~137#s and he is a tall man. He just moved and can't find his scale. We (my wife Suzanne and I) are vaccinated and he got his first shot Monday. At least one of us should be able to get out there soon. Have a nice evening, Mike.

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It sounds like your son is on the right path. I was diagnosed in the summer of 2019 with an autoimmune disease which caused stage 3 liver cirrhosis. I developed varices and had several upper GI bleeds due to bursting varices, and had the TIPS procedure. If your son’s doctors suspect he may be in danger from varices, getting the TIPS will be beneficial. It’s a noninvasive surgery. Please keep encouraging your son to stay away from alcohol, eat well (lots of protein, fruit, veggies), and exercise (walking is great). The healthier he is, the better chance he has for forestalling the need for a transplant and doing well if he does need one. I agree with Rosemary that the liver can be amazingly resilient. While my disease is also incurable, I did reasonably well for nearly a year and received a liver transplant in August. Please let us know of your son’s progress.

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Anybody here waiting for, or already been transplanted for HCC? Just curious what were, or if you had any symptoms pre TX?

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@gman66

Anybody here waiting for, or already been transplanted for HCC? Just curious what were, or if you had any symptoms pre TX?

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Hello @gman66 and welcome to Mayo Clinic Connect. It sounds like you may be preparing for this procedure and would like to learn from others what could be expected.

Both @rosemary and @athenalee have been recent contributors to this conversation and confirmed they have had liver transplants so may be able to provide you some helpful information as well.

Here is some information I found that may be helpful in the meantime.

– Mayo Clinic Streamlines HCC Treatment:
https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/mayo-clinic-streamlines-hcc-treatment/mac-20430425
Can I start by confirming that you are asking for yourself?

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@gman66

Anybody here waiting for, or already been transplanted for HCC? Just curious what were, or if you had any symptoms pre TX?

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@gman66, I want to say Welcome to Connect. I am a liver and kidney recipient, and I am aware that there are many different symptoms that we, transplant patients, might experience.
Are you listed for, or considering a liver transplant? Have you already had a transplant? What are some of the symptoms that concern you? I would like to help you find answers.

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@amandajro

Hello @gman66 and welcome to Mayo Clinic Connect. It sounds like you may be preparing for this procedure and would like to learn from others what could be expected.

Both @rosemary and @athenalee have been recent contributors to this conversation and confirmed they have had liver transplants so may be able to provide you some helpful information as well.

Here is some information I found that may be helpful in the meantime.

– Mayo Clinic Streamlines HCC Treatment:
https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/mayo-clinic-streamlines-hcc-treatment/mac-20430425
Can I start by confirming that you are asking for yourself?

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Yes for myself,I am currently under transplant evaluation. I was just hoping to find others in similar situations.

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@rosemarya

@gman66, I want to say Welcome to Connect. I am a liver and kidney recipient, and I am aware that there are many different symptoms that we, transplant patients, might experience.
Are you listed for, or considering a liver transplant? Have you already had a transplant? What are some of the symptoms that concern you? I would like to help you find answers.

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I am currently under transplant evaluation. I was just hoping to find others in similar situations. I have had one resection, and had y90 one year later when another tumor developed. Now I have no symptoms, and I am cancer free 1-1/2 years post y90. The team recommends a transplant, but I feel perfectly healthy and I am wondering if this is common in HCC patients.

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@gman66

I am currently under transplant evaluation. I was just hoping to find others in similar situations. I have had one resection, and had y90 one year later when another tumor developed. Now I have no symptoms, and I am cancer free 1-1/2 years post y90. The team recommends a transplant, but I feel perfectly healthy and I am wondering if this is common in HCC patients.

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@gman66,

Congratulations on the report of being cancer free and able to proceed to transplant evaluation. I hope that the evaluation is going well for you. I can understand that you are probably confused right now, but if I were you, I would place my trust in the doctors who are being proactive with your care. You might stay healthy or your health might begin to fail. I do not know the common pattern for patients with HCC.

I want to share part of a conversation that @japv2001 posted on Sep 7, 2018.. Here is the link where you can read what he, and @jodeej, and especially what @keggebraaten have shared.
https://connect.mayoclinic.org/discussion/new-blog-posts/?pg=19#comment-138817
@charicen, @silverwoman, @contentandwell, @jerrydrennan, What would would you share with @gmann66 about your transplant and HCC?

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@rosemarya

@gman66,

Congratulations on the report of being cancer free and able to proceed to transplant evaluation. I hope that the evaluation is going well for you. I can understand that you are probably confused right now, but if I were you, I would place my trust in the doctors who are being proactive with your care. You might stay healthy or your health might begin to fail. I do not know the common pattern for patients with HCC.

I want to share part of a conversation that @japv2001 posted on Sep 7, 2018.. Here is the link where you can read what he, and @jodeej, and especially what @keggebraaten have shared.
https://connect.mayoclinic.org/discussion/new-blog-posts/?pg=19#comment-138817
@charicen, @silverwoman, @contentandwell, @jerrydrennan, What would would you share with @gmann66 about your transplant and HCC?

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I'm 30 months post transplant and it sounds as if gman66 and I may have a common thread to our stories. I too had HCC after many years of cirrhosis due to PBC. The miracle workers at Mayo Jacksonville were able to eradicate my liver tumors with Y-90 treatment but, as wondrous as that was, it didn't mean I could immediately be put on the transplant list. I had to remain cancer-free for a period of time stipulated by UNOS in order to be put on the list. I finally met the criteria after the required time elapsed and was very fortunate that I didn't have to wait long (just a matter of weeks) before my call came that they had an organ donor for me. The waiting to satisfy the UNOS requirement is a bit tense, but the way I look at it I would likely have been dead six months after my diagnosis and every day that the Y-90 bought me was one I didn't have before. I went for the transplant because it was my understanding that once a cirrhotic liver starts to develop HCC tumors, it will in all probability continue to develop them, so transplant was my best option for living a longer, healthier life. It is also relevant to my case that I never felt very ill from my PBC; my liver did a very good job of compensating, so I wasn't debilitated and was a good candidate for transplant; that matters.

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@silverwoman

I'm 30 months post transplant and it sounds as if gman66 and I may have a common thread to our stories. I too had HCC after many years of cirrhosis due to PBC. The miracle workers at Mayo Jacksonville were able to eradicate my liver tumors with Y-90 treatment but, as wondrous as that was, it didn't mean I could immediately be put on the transplant list. I had to remain cancer-free for a period of time stipulated by UNOS in order to be put on the list. I finally met the criteria after the required time elapsed and was very fortunate that I didn't have to wait long (just a matter of weeks) before my call came that they had an organ donor for me. The waiting to satisfy the UNOS requirement is a bit tense, but the way I look at it I would likely have been dead six months after my diagnosis and every day that the Y-90 bought me was one I didn't have before. I went for the transplant because it was my understanding that once a cirrhotic liver starts to develop HCC tumors, it will in all probability continue to develop them, so transplant was my best option for living a longer, healthier life. It is also relevant to my case that I never felt very ill from my PBC; my liver did a very good job of compensating, so I wasn't debilitated and was a good candidate for transplant; that matters.

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I am almost 8 months out from my transplant and short of two years diagnosed with Stage 3 liver cirrhosis. I did not have HCC, but have PBC and two other autoimmune diseases. I agree that being in the best health possible is important for being a candidate and recover post transplant. When I was diagnosed, my liver doctor told me to eat healthy (which I was doing) and exercise (which admittedly I wasn’t much into other than walking my dog).

I added more protein to my diet, more walking, and gentle exercises. Even when I was ill enough to be on the list, I continued my regimen as best I could. So, if you can, I encourage you to walk and exercise if you don’t already. And, of course only within any limitations you may have. I’ve found talking with my liver doctors and nutritionists about exercise and diet to be valuable.

This series of articles was also very beneficial for me: Nutrition and the liver transplant patient. Part one: pre-transplant.
May 2015; Lynsey Spillman at Cambridge University Hospitals NHS Foundation Trust. I’ve attached the pdf.

Shared files

LiverTransplantPart1 (LiverTransplantPart1.May2015.pdf)

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