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Sun, Nov 10 9:10pm · Liver transplant support group in Transplants

@contentandwell my HE episode occurred shortly after diagnosis I don’t remember the dosage but took it 4 times a day. A month and a half later I was being evaluated at Mayo they added xifaxin and had me titrate the lactulose but I still had issues. I met 2 patients at Mayo that had MELDs in the mid 40’s before it happened to me. I read an article about increasing the MELD scale because more people are having scores above 40. I do not remember where I read this, sorry. Having only one HE episode but noticed short term memory problems before transplant too. My local Gastroenterologist asked me in September if I suffered brain damage. I responded “no” but since then am starting to believe my short term memory issues may be brain damage.

Sat, Nov 9 1:24pm · Liver transplant support group in Transplants

@tgshomes The diagnosis I was given was NASH. I had one severe HE episode 7 months prior to transplant. I woke up one morning very incoherent and combative about getting dressed and going to work that day. I tried to text my work supervisor but could only type nonsense into my cell phone. Luckily my daughter was visiting and called my husband to come home. I was hospitalized for 3 days but do not remember the first 2 days. My ammonia level was too high and affected my brain. They increased my Lactulose and brought the ammonia level down. The downside of the Lactulose was having severe diarrhea and needed to wear Depends. I was no longer allowed to drive. I also noticed short term memory issues. My husband was my primary caregiver and thank goodness he would remember what the medical staff at Mayo in Jacksonville would explain to us before and after the transplant. I was also very fatigued and would fall asleep frequently each day. As the months went on my health declined very quickly with 3 more hospitalizations due to kidney failure. I also started to have ascites and needed a paracentesis once a week to remove between 8 to 9 1/2 liters of fluid. The week prior to my liver transplant I was again released from the hospital and became very weak especially in my legs and was barely eating anything. I also had edema in my legs and needed shoes 2 sizes larger than I normally wore. I was hospitalized again after a week out of the hospital with a MELD of 44, over the 6 to 40 scale that we were told that there was. I did receive the liver transplant that night.
Since my liver transplant 8 months ago, most all of these symptoms went away. I do feel the HE episode and memory issues did create some changes to my brain. I have trouble remembering a word to use in the middle of sentences frequently. It takes me a few seconds and I usually can recall the correct word.
I hope your father receives a liver very soon. You sound like a wonderful son and an asset as a caregiver along with your mother. My children stepped up when we needed their help during my illness and appreciated all they did for us.

Tue, Sep 10 10:26am · Initial Visit in Jacksonville- How Long Should I Expect to be There? in Visiting Mayo Clinic

@socagirl hello! I’m a liver transplant recipient at Mayo Jacksonville. I had my initial visit one year ago. I was told ahead of time that I needed to be there for 3 weeks to complete my initial visit. It may be different for your medical issue. You may need to contact Mayo to find out how long your initial visit will be. Wishing you the best!

Thu, Sep 5 5:37pm · Why Choose Mayo Clinic for Transplant Care? in Transplant

Being a liver transplant recipient, I agree with the 5 points listed in this article. Thank you Mayo Clinic for getting me through my liver health crisis!

Wed, Aug 28 3:40pm · Liver transplant support group in Transplants

@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.

Mon, Aug 26 10:47am · Liver transplant support group in Transplants

@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!

Fri, Aug 23 7:26pm · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

@jeanern01 Hi Jean! I was treated at the Jacksonville Mayo Clinic. It is a quite a drive from Pensacola but worth the trip. We lived in Panama City until Hurricane Michael hit. I then lived at my son’s in Daphne, Alabama afterwards until the end of December 2018. You should be satisfied with the care at this location too!

Sat, Aug 17 6:47pm · The MELD Score: Definitions and Frequently Asked Questions in Transplant

@rosemarya Thank you! I almost had to have a liver and kidney transplant because I was hospitalized 3 times for kidney failure but they got my kidney issue straightened out before my transplant.