The Frustrating Road to Discovering I Have a Fatty Liver

I have struggled with my weight nearly my entire life, so I suppose I should not have been so shocked to discover that I was diagnosed with fatty liver disease by looking at my post-operative report on Epic with my PCP beside me.

My liver disease diagnosis shocked me

What shocked me more was that the gastroenterologist who performed the procedure did not notify me directly of the results or inform me that he had pinned me with a new diagnosis in my permanent electronic medical chart.

Actually, as a bladder cancer survivor who had to fight tooth and nail to be heard and diagnosed, it outright pissed me off. For the life of me, I don’t understand why a doctor would not inform a patient that they have a new or worsening medical condition of any sort, especially when it is a chronic, potentially life-altering, or even life-threatening diagnosis. What’s more, how is this even an acceptable medical practice?!

I felt that my health was disregarded

That particular gastro doctor was rude, unhelpful, and unsupportive from the beginning, so I had already planned never to see that man again. Still, the complete disregard for my health by omitting to tell me of my fatty liver disease status put the nail in the coffin of our supposedly therapeutic relationship. The lack of transparency after getting diagnosed was unacceptable.

I have been through too much in my life to tolerate medical personnel who are not upfront and honest with me about what is going on with my body. I no longer tolerate unsupportive, uncommunicative, and uncollaborative medical practitioners.

If you do not practice participatory medicine and will not openly communicate my diagnoses or care plans, then you do not get my business. I will take my personal funds and insurance elsewhere... and give you horrible reviews on every platform I can find. (That’s what copy and paste is for!)

The road to treatment for liver disease

Thankfully, I knew a bit about this disease already, as I had spent about a decade working in a pediatric GI office where they had a specialty clinic for youth with fatty liver disease. So, my PCP and I checked my labs.

Since I was apparently in the early stages of the disease, my labs checked out fine. There weren’t any obvious physical symptoms of fatty liver disease. I regularly have labs and CT scans as part of my cancer monitoring, and I was already actively working with a bariatric team to lose weight and get healthier (by making the lifestyle changes often suggested for fatty liver patients). Because of this, I did not feel an immediate need to dive into active treatment with a hepatologist.

After some research and significant self-reflection, I decided to focus on the health issues at hand at that moment and work on finding a hepatologist to manage my fatty liver condition at a later point.

Navigating challenges after diagnosis

I still have not had any physical symptoms or found a hepatologist whom I like and who also accepts my current insurance plan. (Grumble-grumble!) However, as I get my footing now, I have the opportunity to share more of the journey with you. As I thoughtfully and purposefully maneuver the processes for the treatment of adult-onset fatty liver disease, I plan to become more involved in the community and advocacy for this condition.

Come along for the ride! Let us know what questions you have about liver disease below.