Liver transplant - Let's support each other

@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

@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.

@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?

@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!

@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.

@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

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

@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

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

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