Liver transplant - Let's support each other

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

@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

@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 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!

@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?

@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 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

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??

@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

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.