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!

@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, 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.

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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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@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!

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@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!

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@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?

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@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?

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@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.

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@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.

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@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

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@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.

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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??

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@jeanne5009

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??

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@jeanne5009 That’s a pretty low MELD. Are you even on the transplant list yet?

I think that each transplant center has their own guidelines when it comes to transplant age. I’ve heard the cutoff point at some is 70, but at my transplant center (Mass General in Boston) I’ve been told they decide not based on chronological age but on the health of the patient. Some people can be in better health at 75 than others are at 55! I worked at being in the best possible shape knowing that would serve me well in my recovery from an eventual transplant, and I was overweight, BMI was in the “obese” category, so I lost a significant number of pounds. I am still technically “overweight” but my doctors are happy with my current weight so it’s not a real worry, although I would like to drop a few more pounds and not be overweight.
My transplant happened at MELD 28, two days before I turned 69.
JK

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@jeanne5009

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??

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Jeanne5009, Pre- liver Transplant my meld score was 10 to 15 for 8 years. My personal experiences is such that in the beginning my illness presented as a esophageal varasies. Life style changes extended my time without symptoms of end stage liver disease. I had no worries until Acidies kicked in a year before my transplant. At that point I put my house in order.

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@luckonetj

Jeanne5009, Pre- liver Transplant my meld score was 10 to 15 for 8 years. My personal experiences is such that in the beginning my illness presented as a esophageal varasies. Life style changes extended my time without symptoms of end stage liver disease. I had no worries until Acidies kicked in a year before my transplant. At that point I put my house in order.

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Luckonetj did you have PSC? My son with PSC had a blocked bile duct & cholangitis last December. His MELD was 34 at that time. He was evaluated & placed on the transplant list. Since then he has stabilized with a MELD of 13. His best chance for a transplant now would be a living donor. His doctors monitor him closely, especially for esophageal varices & acsites.

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@stella25

Luckonetj did you have PSC? My son with PSC had a blocked bile duct & cholangitis last December. His MELD was 34 at that time. He was evaluated & placed on the transplant list. Since then he has stabilized with a MELD of 13. His best chance for a transplant now would be a living donor. His doctors monitor him closely, especially for esophageal varices & acsites.

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Stella25, I had alcoholic liver desease. Although, I have a friend that had PSC he was a heavy drinker for many years.

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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, You have mentioned some right shoulder pain. I remember when I have had liver biopsies, that I was told that I might have some shoulder pain called referred pain. In my situation, I would call it a temporary nuisance that was relieved with tylenol for a couple of days.
Have you found any relief for your pain? What have the doctors told you about it?

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@luckonetj

@christinelouise I to have higher creatinine levels with Tacrolimus just past the normal range. I'll mention sirolimus to my nurse next time. They attributed the hi levels of creatinine to the Antiviral I was on. I do have to drink more water during the day. Doctors orders.

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@luckonetj How are your creatinine levels now? Are you still on tacrolimus and drinking loads of water? Despite the change to sirolimus I do still have to drink about 80 ounces of water a day which is a problem since I have incontinence issues — I tend to be up about 6 times a night, no matter how early in the day I drink the water.
Other than the creatinine problems how is everything else? I hope you are continuing to do well.
JK

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