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Post 3: How it feels to have a new diagnosis.

I don’t remember being diagnosed with cirrhosis. My mother remembers it very clearly though. I was a few days into what would end up being a very long stay at a Seattle hospital, a few hours from home. Two weeks before that was the first time any doctor had mentioned liver issues, a week before that my liver started failing, a couple of days previously I’d had a trans-jugular liver biopsy done – so we were anxiously awaiting some news. I only remember bits and pieces of those weeks in the hospital, a combination of just being very sick, sleeping a lot, and newly diagnosed hepatic encephalopathy. I don’t have any memory of the moment, that absolute turning point in my life, when my hepatologist told my mother that my biopsy had allowed them to finally give me a diagnosis – Stage 4 Decompensated Cryptogenic Cirrhosis. My mom said she remembers him telling her that cirrhosis stages weren’t like cancer stages, that Stage 4 sounds very scary but isn’t a death sentence, but the words were still a devastating shock to her. As soon as the hepatologist left, she quietly went downstairs, to a bench outside of the hospital, where she stayed and cried for a very long time. As a mother myself, it hurts my heart, imagining how hard that must have been for her, the fear that she could lose me, in spite of the doctor’s assurances that I still had a fighting chance.

I spent a couple more weeks at the hospital, before being strong enough to go home. But, “going home” meant going to live with my mother. I was medically stable enough to leave the hospital, but I was nowhere NEAR strong enough – mentally, or physically – to live on my own, let alone try to care for my 5-year old daughter. For those two months, I spent the majority of my time in her guest bedroom. She had to buy a commode for me, which felt humiliating, because even with the walker I was using to get around, I couldn’t make it to the restroom quickly enough. My strongest memories from that time are of lying in the bed, knowing that my mom and daughter were outside on the patio, and just wanting so very badly to go join them outside, and sit with them in the sunshine. I would try as hard as I could, struggling to get up out of bed, holding onto that walker for dear life – but I was too weak, and had too much muscle wasting, to make it across the house, and out to the patio. I was alone, in so many ways. Those were the hardest days of my life.

But, when you have a “why,” it gives you strength. My little girl is, and always will be, my reason why. The reason why I started doing small exercises, even though they were just from bed. The reason why I started getting up every couple of hours, even if all I could do was use my walker to make it across the hallway and back. The reason I started reading and researching, learning all that I could about liver disease, nutrition, and how to build myself a solid plan and path towards wellness. I was determined to run and play with her again, and to see her grow up. My stubborn persistence paid off, and soon enough, we were able to move back home again.

The strange thing about a cirrhosis diagnosis, is that it doesn’t just change your physical health. The changes are wide and profound and everywhere. It’s like grieving for someone you’ve lost, but that someone is you. The person you were, the dreams you had, the path you saw yourself following in life. No longer could I work as a full-time writer and public speaker, traveling around the country. No longer could I have a bright social life filled with friends, nights out, and frivolous fun. Even the books on my shelves were a reminder of a life that I no longer had – books for things like building a business, travel photography, the motherhood books I’d kept in the small chance I had another baby. That Meagan was like a ghost to me. And it took a lot of time to get over that grief.

But, like a phoenix that rises from the ashes, starting anew – I feel like I’ve truly become a different person. I have an incredibly deeper gratitude for every little thing in my life, knowing it could be otherwise. I’m learning to accept the really hard things, because they allow me to see the contrast in life - the good parts shine so much more brightly after experiencing such dark times. Cirrhosis hovers around the edges, and can’t ever be forgotten or ignored, as it requires a hypervigilance about my daily lifestyle, and watching for symptoms or signs to share with my doctor. I cried so many tears, thinking about the days of life that cirrhosis might steal from me. But none of us know how many days that we will get, whether we have a disease diagnosis or not. So I plan to spend mine living this life to the fullest – not in spite of my diagnosis, but because of it.