“Start by doing what’s necessary then do what’s possible; and suddenly you are doing the impossible.” ~ St. Frances of Assisi
Reposting from personal page in honor of St Francis of Assisi day and also to share here the first time I said out loud to all that I had cirrhosis and the summary of events from mid September of this year.
I have been fighting an illness this year as some may be are aware. In the past few years, I was eating and drinking all of the wrong things, considered walking to the mailbox exercise and put on quite a few pounds. A lot of exciting and some stressful things were happening in life and well…Covid and all of the upheaval of 2020 and all that goes with that was hard on all of us.
In January, a routine physical showed elevated liver enzymes. My doctor said that can happen. I had Covid in December and it can sometimes alter them, so we waited until March and re-tested. No good. I was shipped off for a more comprehensive hepatic panel and an ultrasound. I didn’t know what to think but I was getting scared. We were moving about the country, and figuring out medical on the fly. I had figured it all out in theory but I did not imagine we’d have to test that theory with such intensity our first few months in.
So while in Texas in early March I was told the ultrasound showed increased hepatic echogenicity with severe hepatic steatosis. And it was enlarged. My heart dropped. I had no idea what this meant. I was first told in a voicemail that I had NAFLD (non alcoholic fatty liver disease) and was given a long list of foods not to eat. We joked … what is left to eat, Ice cubes? I mean, my liver is Chonky…what the heck??
But my fear grew. I called the doctor back after consulting Dr. Google, who convinced me that my days were indeed, numbered. The response I got was on a message on my health portal that said…simply, you have severe scarring on your liver, you have NASH, you need to find a specialist. So I consulted google. And my fear turned to terror.
Non-alcoholic steatohepatitis (NASH) is an advanced form of non-alcoholic fatty liver disease (NAFLD).
At this point I had already realized some changes were on order. I ditched Dr. Google first and foremost and began researching on medical sites, Mayo Clinic, Liver associations…joined every support group I could find and my fear grew. I signed up for NOOM to help me get my eating in control and began to adjust to foods that do no harm and could possibly heal my poor liver. This was April 12.
I cound not find a specialist in Texas so we looked forward to Colorado Springs. Neil found me one (what a good boy). They told me I needed a test called a Fibroscan which would stage the level of fat and scarring. So when we got to Colorado I went for comprehensive blood work and got my scan on may 21st. I couldn’t imagine I’d hear anything worse. It was bad enough already, right?
A few weeks later (and already many many pounds lighter thankfully) I finally met my specialist in mid June. Prior to meeting him I had seen the results of my fibroscan in my portal. I had researched this scan and I knew how to read it. I was with our daughter that day and baby G. I asked her if I should read it now or wait. We agreed to read. And my heart sank. All of my fears realized. Yep I cried. I held baby G and told him to keep his body healthy and cuddled him. He’s a good medicine.
I met my specialist the following week and boy did we do good. I love him. He’s a keeper. He delivered the news I knew was coming and I cried again but I had a two page list of questions ready for him. What can I eat, am I doing this or that right, how long can I live…and Neil was with me thank God. He said I had Fatty liver level 3 and fibrosis level 4. I had cirrhosis. I love this doctor. He sat with us for an hour and was compassionate and honest. And he was very happy with my progress in two months not even knowing what to do really.
I know this is getting long so I will get to the good part. I began this learning what I had to do to hopefully freeze this disease in place and pray it did not get worse. Then I got to a place where I believed in my heart I would be able to do this. And today I feel I am achieving the impossible.
I had a follow up ultrasound, an EGD and lots more blood drawn these past few weeks, and I am currently down almost 80 pounds eating clean, unprocessed food and mainly water and coffee or tea.
I want to jump up and down. Shout out loud! My specialist said I'm doing amazing and I'm definitely healing. He said I'm the poster child for what to do and I should write a book or a blog and he even asked me what I'm doing. I have to recheck in 3 months but he thinks my Fibroscan will totally show regeneration and I may be a rare case that gets back to even level 2 which technically is no longer cirrhosis. The ultrasound did not show fat and my liver has shrunk back to normal size. He wishes everyone he treats would dive in like this and he made me feel like a rock star.
I also have my cholesterol, triglycerides, blood pressure and sleep apnea under control and normal levels for liver enzymes … and my thyroid meds had to be decreased.
So that’s my story. Sorry if I put you to sleep but I’m just so happy, and I’ve been so afraid. I’m not done yet and I can only hope that a positive attitude and effort continue to make life even better. I have lots to do. Lots of love to share, things to see. I won’t give up.
I could not be any more grateful for my family and friends and medical team.
I got this.

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