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!

@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.

Jump to this post

Did you get your liver?

REPLY
@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.

Jump to this post

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

REPLY

@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?

REPLY
@craiger

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

Jump to this post

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

REPLY
@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?

Jump to this post

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

REPLY
@luckonetj

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

Jump to this post

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

REPLY
@craiger

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

Jump to this post

@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

REPLY
@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

Jump to this post

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

REPLY
@craiger

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

Jump to this post

@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

REPLY
@craiger

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

Jump to this post

@craiger, I would like to jump in here and add some information about NASH from NASH Patients: Blog Round-Up. These posts are relevant to patients, or caregivers of patients, with nonalcoholic fatty liver disease, also known as nonalcoholic steatohepatitis.
https://connect.mayoclinic.org/page/transplant/newsfeed-post/nash-patients-blog-round-up/

On Connect, your questions are always welcome. I am happy to see that you have already met some expert member patients.

REPLY
@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

Jump to this post

@craiger I had a liver transplant in February of 2019 at the Mayo Clinic in Jacksonville. My pre-transplant symptoms were extreme fatigue, very weak leg muscles, hand shaking, trouble with my short term memory and leg cramps. I was always very cold all of the time. I did not have shoulder pain. I was hospitalized for hepatic encephalopathy once in July of 2018. Last fall I began to have ascites with paracentisis once a week. I also had kidney failure and was hospitalized 3 times from November to the end of January. The last weeks before my transplant I had a terrible time eating anything and mostly ate soup. My MELD was 44 and increased to 47 the day I was readmitted to Mayo. I received the transplant that night. I did not know a MELD could go that high until meeting 2 liver transplant patients while waiting for an appointment. NASH was my diagnosis. I wish you well!

REPLY
@flagal22

@craiger I had a liver transplant in February of 2019 at the Mayo Clinic in Jacksonville. My pre-transplant symptoms were extreme fatigue, very weak leg muscles, hand shaking, trouble with my short term memory and leg cramps. I was always very cold all of the time. I did not have shoulder pain. I was hospitalized for hepatic encephalopathy once in July of 2018. Last fall I began to have ascites with paracentisis once a week. I also had kidney failure and was hospitalized 3 times from November to the end of January. The last weeks before my transplant I had a terrible time eating anything and mostly ate soup. My MELD was 44 and increased to 47 the day I was readmitted to Mayo. I received the transplant that night. I did not know a MELD could go that high until meeting 2 liver transplant patients while waiting for an appointment. NASH was my diagnosis. I wish you well!

Jump to this post

@flagal22, I also didn't know that theMELD could go thart high. I was inactivated from the list for a while, and also in ICU in critical condition (potential hospice care) so there were no MELD's recorded. It was 36 when I transplanted.

When did you learn of your NASH diagnosis? Did you have early mild symptoms? Or was it discovered during another health screening?

REPLY
@rosemarya

@flagal22, I also didn't know that theMELD could go thart high. I was inactivated from the list for a while, and also in ICU in critical condition (potential hospice care) so there were no MELD's recorded. It was 36 when I transplanted.

When did you learn of your NASH diagnosis? Did you have early mild symptoms? Or was it discovered during another health screening?

Jump to this post

@rosemarya In December 2017 my PCP noticed by bloodwork indicated a fatty liver issue and requested I see a Gastroenterologist. I did beginning in January of 2018. He had me get a colonoscopy and endoscopy. I had polyps removed and varices in my colon and esophagus. In April, I had tests and a liver biopsy. I did not have liver cancer but was diagnosed with end stage cirrhosis of the liver, NASH in mid-May 2018. My MELD was 10 at that time. My health was pretty good until the end of October. It went downhill quickly. My transplant was on February 2nd of 2019. I wasn’t listed until the end of December my 3rd hospitalization in 2 months. By then I completed a left heart cath, a right heart cath and a mammogram required by my Mayo Doctors. I was considered “deferred” until then. When I look back in time, the most pronounced symptoms were fatigue and memory issues. I was 63 years old at transplant.

REPLY
@flagal22

@rosemarya In December 2017 my PCP noticed by bloodwork indicated a fatty liver issue and requested I see a Gastroenterologist. I did beginning in January of 2018. He had me get a colonoscopy and endoscopy. I had polyps removed and varices in my colon and esophagus. In April, I had tests and a liver biopsy. I did not have liver cancer but was diagnosed with end stage cirrhosis of the liver, NASH in mid-May 2018. My MELD was 10 at that time. My health was pretty good until the end of October. It went downhill quickly. My transplant was on February 2nd of 2019. I wasn’t listed until the end of December my 3rd hospitalization in 2 months. By then I completed a left heart cath, a right heart cath and a mammogram required by my Mayo Doctors. I was considered “deferred” until then. When I look back in time, the most pronounced symptoms were fatigue and memory issues. I was 63 years old at transplant.

Jump to this post

@flagal22 Your symptoms (fatigue, shaky hands, leg cramps). are so similar to what mine were, except for memory issues although I did have HE episodes. The last MELD I knew was 28 but it was due to be increased and I had gone downhill quickly in the 6 or so weeks prior to transplant.
I had been listed much earlier, perhaps due to having malignant lesions in my liver that were ablated.
JK

Liked by luckonetj

REPLY
@flagal22

@rosemarya In December 2017 my PCP noticed by bloodwork indicated a fatty liver issue and requested I see a Gastroenterologist. I did beginning in January of 2018. He had me get a colonoscopy and endoscopy. I had polyps removed and varices in my colon and esophagus. In April, I had tests and a liver biopsy. I did not have liver cancer but was diagnosed with end stage cirrhosis of the liver, NASH in mid-May 2018. My MELD was 10 at that time. My health was pretty good until the end of October. It went downhill quickly. My transplant was on February 2nd of 2019. I wasn’t listed until the end of December my 3rd hospitalization in 2 months. By then I completed a left heart cath, a right heart cath and a mammogram required by my Mayo Doctors. I was considered “deferred” until then. When I look back in time, the most pronounced symptoms were fatigue and memory issues. I was 63 years old at transplant.

Jump to this post

How fortunate that you got the help you needed. My story is similar..my Meld is only 8 and Mayo watches me….like a hawk! What was your turning point? Im waiting but I really havent changed…or it is silently creeping up on me.
I will be 69 years old next week..what happens if I stay this way til 73 and then it suddenly falls apart? Will I be too old??
What do you think??

REPLY
Please login or register to post a reply.