Learning about the Liver

If you are a perpetual learner like me, when you encounter a new health challenge, you start seeking more information from books, government or hospital websites, medical journals, etc.

I learned a lot about the liver in 2004 during the “Great Liver Incident” as we call it in our home (see The Great Liver Incident 2004). At the time, the information available came mostly from books and medical journals. There weren’t, as far as I knew, any liver-specific websites or forums. These days, there are a lot of things available online – some good, some questionable, some bad. It’s easy to scare yourself so if you do go looking, keep in mind that every liver patient experiences their liver disease differently and the SOURCE of the information matters a great deal. Just because somebody put it on the internet or published it in an e-book or a video doesn’t make the information accurate, true, or applicable to the situation. Caveat emptor and “Your mileage may vary.”

I am currently bobbling through a few sites that are for general information or support:

• https://liverfoundation.org/ has stories of patients and caregivers and lots, lots, lots of information on specific liver diseases.
• https://www.fattyliverfoundation.org/ has links to some excellent Biochemistry/Biology lesson videos by Armando Hasundangan but you can view more on his own site https://armandoh.org/
• https://www.inspire.com/groups/american-liver-foundation/ is a liver disease support and discussion community
• MD+Calc offers a MELD (Model End Stage Liver Disease) calculator at https://www.mdcalc.com/meld-score-model-end-stage-liver-disease-12-older#evidence and they’ve updated this to be a MELD-Na for people with cirrhosis https://www.mdcalc.com/calc/1754/meldna-meld-na-score-liver-cirrhosis
• And after 2022, we began learning about Alpha-1 and how that matters to our family – https://alpha1.org/what-is-alpha1/

Most of the time, I look for academic sites. Why? Because way back in 2004, our neighbor was a doctor and his advice stuck with me – when you don’t know why something is happening or what it is, you want to reach out to the people who are looking for zebras and who know the difference between a zebra and a horse.

Of course, the more I learn, the more I realize I don’t know. However, I do know from our past experience that the more I can learn, the better my questions will be when we are consulting a physician or looking at test results. This in turn yields better care for the patient.

I am not a medical professional. I am not an attorney. I am not a health care practitioner. I am a caregiver to a specific liver disease patient – be sure you do your own research and consult the experts before making decisions about your own (or your patient’s) care. I am writing about my experience and that of my partner nothing more.