One month ago today, my mother died from liver disease, which her doctor said was non-alcoholic fatty liver disease. Her death wasn't a shock since she'd been suffering for a number of years, but I was surprised at how quickly her condition deteriorated. My mother and I haven't been close for many years, but her death leaves me feeling sad, depressed and very mortal.
I've been terribly negligent about keeping this blog updated. Here's where I stand in my journey: I describe myself as being on "maintenance" status with my transplant center. By this, I mean that I'm not a candidate for any available treatments, so I have blood tests every three months and we track my MELD score. For the past few tests, my MELD score has remained constant - 12 - which is pretty good (relatively speaking). My next set of labs will be drawn in about two weeks.
There's much more to share, but I'm too blue to write about all of it now. Before I go, a quick shout-out to Beaux and his successful transplant. I'm encouraged to read about every bit of progress there is. To those of you awaiting transplant, may you find peace in your trial. And to those who have had transplants and are struggling to achieve a "normal" life, please know that awaits. Normal will be different, but it will feel oh, so good!
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What didn't the doc tell me? Plenty! Due to cirrhosis caused by hepatitis C, I had a liver transplant and my world was forever changed. Doctors explained the risks and said it would be tough, but their warnings didn't begin to adequately prepare us for what laid ahead.
This blog describes my experiences and what I've learned, including the things my docs didn't tell me. I created it to be a place for learning, complaining and celebrating while traveling our difficult journeys.
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About Me
- Jay
- Florida
Married to Gene, a wonderful, caring man
Blessed with two awesome children - a son and a daughter, both of whom attend college
Former marketing and PR consultant and freelancer, now receiving Social Security Disability benefits
Resources
- Adult MELD Score Calculator (OPTN website)
- Guide to Liver Blood Test Results
- HCV Advocate
- Liver Connection Patient Newsletter from Columbia University Center for Liver Disease and Transplantation
- OPTN Transplant Waiting List Data (available by Transplant Center)
- Scientific Registry of Transplant Recipients (transplant statistics)
- Understanding Lab (Blood) Tests
3 comments:
I'm glad you are back. I have been worried about you for months, anxiously awaiting a status update. God Bless.
I have liver disease and the diagnosis is cryptogenic cirrhosis. I was very healthy and young for my age of 45. The situation created hematomas in my brain before my liver disease was discovered. This created a situation that put me in Neuro ICU for 60+ days at the University of Colorado Hospital. I of course remember nothing, but my incredible wife remembers it all. Thank the good Lord for bringing me through even when the doctors thought I would die. I am on the transplant list at the same hospital and someday will need that transplant. After being tested every four weeks my MELD score continues to be between 15 & 18. My TIPS has had no problems and my ERCP works great too. I have learned lactulose is awful tasting but effective at keeping my ammonia levels down and have found that Xifaxin is a wonderful drug if your insurance can help you afford it. Unfortunately, I have also discovered that some people and employers treat you like your broken and what you have might rub off on them. But I have great support from family and friends and a great number of my current and former students and their families, as I am a high school math teacher. My day will come when I absolutely need a transplant to continue my life, but my hepatologist says to keep using mine that functions at 20-25% as long as I can. He is tremendous and answers all if my questions. My PCP doctor has educated himself well, but lets my hepatologist call the big shots and communicates regularly with him concerning my condition.
I was diagnosed as HEPATITIS B carrier in 2013 with fibrosis of the
liver already present. I started on antiviral medications which
reduced the viral load initially. After a couple of years the virus
became resistant. I started on HEPATITIS B Herbal treatment from
ULTIMATE LIFE CLINIC (www.ultimatelifeclinic.com) in March, 2020. Their
treatment totally reversed the virus. I did another blood test after
the 6 months long treatment and tested negative to the virus. Amazing
treatment! This treatment is a breakthrough for all HBV carriers.
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