Hello, this will be my first post as I've hid in the shadows since joining this group in December. I'll do my best to avoid writing my autobiography so bare with me. First, I am grateful for how helpful and supportive this forum has been and enjoy checking my emails daily to see what's new in the feed. I've struggled with alcohol for most of my life so I like to use this forum as my AA so to speak. I guess I'm here for some guidance as well. I will also add that I connected with the infamous Laura (insert whichever number her tag is now. Lol) and will forever be grateful for her support. When I was struggling with urges to drink I'd read and reread her story about her former husband who battled cirrhosis among the plethora of medical issues that come with it. It often brought me to tears as my own twin brother was diagnosed with ESLD (alcohol/hepatitis C) July 2019 and was in and out of the hospital like it was his job; without the pay of course. Lol. He was given a glorious second chance at life last month and received a liver transplant. We talk daily almost and he has a new pep to his step which is amazing. My paternal grandpa died at 32 years old from liver disease, other grandpa died of colon cancer, uncle passed from Parkinson's disease and alcohol runs on both sides of my family.
My story started with a UTI in August 2020 for which I was prescribed antibiotics. I returned to the ER after feeling completely ill and sent back home directing me to take another 21 day course as the UTI returned. Liver enzymes were elevated so I was referred to a hepatologist who I met with later that month. Completed a CT scan ("unremarkable), ultrasound and more blood work when they diagnosed me with hepatic steatosis or fatty liver. My hepatologist at the time took me off of the medication as it's been shown to cause acute liver damage and boy was I grateful as it caused jaundice and flu like symptoms. I took a "fatty liver" without much thought and continued to drink. I woke up with jaundice in November and felt sick, but wasn't drinking at the time so I put it down to a virus. I returned to the ER with more testing and was again referred back to the hepatologist because indirect bilirubin was close to 5 mg/dl and they suspected Gilbert's Syndrome. A genetic test later confirmed this. After leaving the ER for the third time I have not picked up a drink in 110 days and never want to think about alcohol again. I never wanted to call myself an alcoholic but that's what I am and while this will be difficult for the rest of my life I hope to never fall back on it. I have a wife and a lovely daughter I need to care for and I could never forgive myself if I let a bottle of whiskey come between that again. Even if it was top of the line stuff and had those cool ice balls to go with it. Lol. To put it into perspective, I could down an entire 750 ml like it was nobody's business. My twin went into the ER years ago with a BAC of .44 and docs were surprised he wasn't dead as he was coherent and walking around.
Within the past two months I have been diagnosed with h-pylori and given antibiotics which I somehow never got sick from. Thank goodness. However, I seemed to have other health issues but perhaps they were there all along but I was too focused on drinking that it never occurred to me. Since July 2020 I have lost 20 pounds of unexplained weight and often feel frail. I get terrible upper back pain and have to stretch regularly. I'm only 33 years old but feel criply for lack of a better word. I have an endoscopy/colonoscopy set for next week and am a bit nervous, but "this too shall pass". I am also scheduled for another ultrasound (my request) as the one from November said "coarse echotexture" with an impression of hepatic steatosis. I'm also looking into a new hepatologist as the old one retired and my new one seems to stick me in the "alcoholic box" as my twin went to the same office. He failed to look at my CT scan and said that I have a low probability of having cirrhosis based on the size of my spleen and platelet counts. He used an LFT from early December (I was 10 days sober when taken) and said I had acute alcoholic hepatitis but failed to ask me or gather any more information. I left that appointment with $50 less in my pocket and more questions than before. All of my numbers have been in range since mid-December and I feel great being sober, aside from other health stuff but I'm still ticking. I referred myself for a CRP test (range is 0-10) as I had one in January when diagnosed with h-pylori and was well above the range. Doc put this down to h-pylori and possible gut inflammation. I referred myself for bloodwork yesterday and now CRP levels are (rounding 26 mg/L) and ESR is nearly double the range. Clearly something is going on with my body but docs seem to put this down to stress. I also lost my primary doc who I've been going to for years as he's no longer covered under my insurance. I should mention that I requested testing for ANA, anti-mitochondrial antibody, aplha-1, celiac, TSH, vitamin B/D, liver-kidney antibody, hepatitis panel, Addison's Disease, and all have been negative. Sigh*
So here I am with my Gilbert Syndrome smile, searching for a doc that my brother hasn't been to, hoping to find one that can listen and point me in the right direction. I am adamant about maintaining sobriety and just don't want doctors to leave a stone unturned so to speak. If you've read the entirety of this post I thank you for listening and appreciate any feedback you may have. Sober cheers!!
Signed,
Unicorn GG
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