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Posts (12)

Fri, Jul 5 7:56pm · What did you find most surprising once you were out of the ICU? in Intensive Care (ICU)

I was not in ICU but was in a coma Jan 2019, for 5 days. High ammonia levels, my Meld was 26. I had a lot of hallucinations and paranoia after I woke up. It took almost a week to feel better. They attributed my cognition to a high ammonia level. 24 day of lactulose worked but caused me to have the runs nonstop.

Sun, Jun 23 8:11pm · It's not all about the MELD Score in Transplants

I have a good team, and they advise me to be prepared for anything. In Jan 2019 I was so sick that my family gathered for my final days. I was in a coma for 4 days had severe HE with weekly fluids removed from my abdomen. I had decided to get clean from alcohol and change my life style. By March I was ambulatory walking daily and eating a healthier diet. My labs continued to improve and my Meld score dropped. My doctor reminds me that I may still get sick and need a transplant, just not right now. I do a lot of Vol work with AA and the hospital as I am a LCPC and 30+ years working in a hospital. Although the damage to my liver was caused by alcohol abuse, I do what I can now, to stay healthy and help others.

Sat, Jun 22 9:13pm · It's not all about the MELD Score in Transplants

My labs Friday were excellent. Saturday was my 8 mo sobriety date and Sunday my Doc called me. Fathers Day. She indicated my liver function is improving and if my labs continue to improve by August, she may take me off the liver transplant list. My Meld was 26 in Jan now it is less than 12. I’ve changed my lifestyle completely.
Clean from drugs and alcohol, vegetarian diet, running up to 5 miles a day. It feels good being this healthy.

Mon, May 20 12:50pm · Primary Biliary Cholangitis and Autoimmune Hepatitis in Transplants

I have horrible itching in the evening and fatigue during the day. Labs all good, and Meld of 12.

Thu, May 16 9:02pm · Need a liver and information on what to do. in Transplants

Amanda89
Thank you for your post. Since Sept 2017, when they told you you needed a liver transplant, did your doctor do regular monthly labs. Where you assigned a Social worker/ therapist back then. What occurred during 9/17?and now. Was there any follow up or discussion with your doctor about a transplant (and Meld score). I learned in Jan 2019 I had cirrhosis and end stage liver disease due to drinking. My original Meld was 26 and I was quite ill. I have been getting weekly UA drug alcohol tests and I go to AA as well as see my alcohol counselor. My doctor keeps a close eye on me and I have monthly labs done. Although I have been feeling better it’s only a matter of time before my health de compensates and I get listed on the transplant list. I will say my treatment team has been very good and thorough. I would ask your doctor for latest labs, liver fiction, and liver sonogram. Let us know how you are doing. I know that all of us who need a liver are worried and apprehensive. We have to rely on our treatment team to monitor our condition.
John S.
Annapolis MD

Sat, May 4 6:50pm · It's not all about the MELD Score in Transplants

Hi Rosemary
I have had frank conversations with my liver doctor and I continue to be hopeful. I do service work for AA, giving rides, and meeting with those who request it. I take my meds and have blood work done monthly. I also do a weekly urinalysis for drugs and alcohol. Patients who test positive are often dropped from the transplant list, per most insurance companies. I am in the best shape of my life, ironically since I almost drank myself to death. I know that at some point, my health may decline to the point where I need a transplant. Until than, I will continue to live a productive, healthy life, and will deal with symptoms as they appear. Ideally I would love my liver to heal itself so that I do not need any further intervention. My doctor has made it clear that my liver is not viable and at some point it will need to be replaced. I will deal with that if / when that point arrives. As all patients, I do live with that anxiety over when that point arrives. Thank you for your response.

Wed, May 1 8:44pm · It's not all about the MELD Score in Transplants

Fatigue during the day, itchiness at night along with bathroom trips every hour. I’m glad I’m not sicker but doc has made it clear my liver is quite diseased. Of course she won’t predict the future so I will live with that uncertainty. For the time being I run 5 miles a day, eat only vegetarian and attend AA meetings. I do enjoy the fellowship of the patients on this group and the people at AA. I truly believe that fellowship helps us stay grounded and provides an avenue for support.

Wed, May 1 6:29pm · It's not all about the MELD Score in Transplants

Saw doc today. Doing so well that won’t be presented for transplant. A wait and see situation. Labs and sonogram at the end of the month