As far back as 2020, I could articulate clearly what I needed to do to improve my health. In 2020, we faced down the pandemic and became one with DoorDash. In 2021, I started a doctoral program in May. I lost my mom, my mother-in-law, my oldest graduated from college, and my youngest started college. Following my mom’s death, I was scared straight a bit where my liver was concerned and had better enzyme numbers than in the past.
In 2022, work and school created stress that I addressed by reverting to old habits — drinking soda, eating fast food & candy, not sleeping well, and not exercising regularly. The doctoral program allowed me to see myself in a new light as truly remarkable people in my cohort respected and enjoyed me, my ideas, and my friendship. I began to experience stress in more profound ways and even took myself to the ER when I experienced difficulty breathing and a heaviness in my chest. This led to an ultrasound of my heart that was unremarkable. I knew I needed to reduce my stress so I re-entered therapy, and began working to build on lessons I was learning about myself in my doctoral program. The side effect of this learning and growing meant I began to see the reality of the state of my marriage.
Drawing the Bright Line
In 2023, I was sent on my very first consulting trip on the week of my birthday. I was so nervous and, to make a long story short, rather than finding myself with a supportive partner, I found myself prepping for the trip alone. My birthday gift was a half dozen cookies sent to my hotel room. I sent myself flowers and bought myself a decent dinner when I returned to town. Revelations surrounding things that occurred in my absence were the final straw and led me to end my marriage. I filed for divorce at the end of March.
I decided since I had faced the fear of living alone for the first time in my life, I could also stop being afraid to return to the local specialists to gain a clear picture of my liver’s status and move toward being as healthy as I could be. I knew that the horrible stress of my personal life for the past seven years had wreaked havoc on the level of inflammation in my body, played hell with my blood pressure, and put me in a place of just trying to survive rather than thrive.
In late March, I had a fibroscan that suggested my liver had progressed into advanced non-alcoholic steatohepatitis (NASH), but still I held out hope that I could reverse the damage. Because my mom died of cirrhosis brought on by an autoimmune condition that attacked her liver (primary biliary cholangitis [PBC]), I was petrified. The PA I met with at the specialist’s office knew all of this as I had met with her last the week following my mother’s death.
She had not reviewed my chart prior to coming into the exam room. She did so quickly and said, “Well. It looks like you have progressed into early cirrhosis. There is no turning back now. Nothing you can do. We will take some blood today and order an ultrasound to have more information. You should continue to try and lose weight and eat well, but you cannot turn this around at this point.” At some point in her recitation of my perceived death sentence, I had begun to cry. I left feeling hopeless but still thinking maybe they were wrong.
Denial Runs Deep
I scheduled the ultrasound for the following week and gave blood before leaving the office. The ultrasound results noted fatty liver, but did not mention cirrhosis and the blood tests that came back included a serum test that put me at F2 rather than F4 (cirrhosis). I asked for an explanation or additional context from the specialist who told me I could have a liver biopsy if I really wanted to know the staging.
The old me may have accepted that as a reasonable path, but the new me immediately referred herself to Cleveland Clinic. In my consultation with my hepatologist during the summer I learned that there is an advanced imaging test that involves an MRI with elastography. I made an appointment to travel to Cleveland in early October to have the test done.
On October 5, I had the follow-up with my hepatologist and she confirmed that I was in early cirrhosis. I cried more. She explained to me how non-alcoholic fatty liver disease (NAFLD) and its more severe form NASH are an epidemic in the U.S. today. More and more people at younger ages are being diagnosed. And, many do not learn they are in cirrhosis until it has advanced and often learn about their condition while having other testing or surgeries performed. She told me that our blood supply courses through our livers every minute and that healthy livers are like sponges allowing for easy transport of blood. Damaged livers like mine are more like pumice stones which can lead to the hepatic portal vein experiencing high pressure and causing lots of serious problems. She told me my cirrhosis is currently compensated meaning that my other organs are functioning in a manner to pick up the slack of my deficient liver function. Every year going forward I have a 5% chance of my cirrhosis becoming decompensated. That chance is not cumulative, but 5% is 5% and still scary. She told me she has had patients remain in this early stage for a decade. When I think of how fast 10 years can go and all the things I want to accomplish in them, I shuddered. Because unless some major breakthrough occurs, there will come a time when I will need a liver transplant or I will die.
The Cleveland Clinic doctor immediately changed my blood pressure medication and put me on a statin drug. I had never been advised by a physician that a statin drug could help the accumulation of fatty tissue in my liver. I had been warned against taking supplements and medications that had to be metabolized through my liver as they could harm it. Had one person told me statins could have helped me, I would have gladly taken them.
In November, my employer held a health fair. My bloodwork showed my cholesterol in great ranges, my liver enzymes in normal range, and my blood pressure maintaining a low reading. That’s how quickly my body could have been brought into check had I realized the importance of something as simple as a statin drug.
Since October, I have lost over 15 pounds, I have finally worked out my budget to allow me to have a four-ride/month membership at my favorite spin place, I haven’t eaten fast food or had a soda, I have drastically cut sugar and sodium, and I have made rest a priority. But, the fact remains that I have cirrhosis. And every six months I will have major bloodwork and an ultrasound to track my status.
Spilled Milk
I have had to resist the urge to cry over spilled milk. I spent at least the past seven years clutching onto things that did not truly exist. I wasted years breaking my own heart by trying to reconcile what I thought my life would be with what it actually was. And, in doing so, I shoved down all kinds of things that rotted my insides. When I finally remembered who I was and snapped into the true reality, I thought I would have the time and freedom to improve everything, including my health. Now, I live with the knowledge that my liver is irreparably damaged, I have a serious health condition, and my liver dysfunction could permanently affect my brain.
On the other hand, I have two amazing young women in my life who call me mom. One will be starting her career and her own married life in 2024. The other will continue to pursue her educational and career goals. And, I still have me–the one person who has always been here and who will continue to be here no matter what happens. Although 2023 drew a bright line in my life, I remain committed to making the most of what is ahead.
