Patient Advisor Spotlight

 Written By: Jak Cooper, Sober Livers' Advisor and Transplant Recipient 

I caught up with Advisory Committee member Lindsey, who shared her story of sobriety, autoimmune disease, & liver failure. Lindsey joined Sober Livers following a discussion with Transplant Hepatologist Dr Hersh Schroff who was our September educational speaker.

Drinking began in middle school, and then her “Blue Pill” era started with her Mother giving her Xanax for panic attacks, and Oxycontin from her Dad. 

Drinking continued through High School and College. Percocet then became a part of her journey in her twenties. She met her now ex-husband who didn’t like her Percocet use, so she quit, and her drinking increased.

Physical changes began in 2017 with tingling sensations in her extremities, followed by mobility issues, and a misdiagnosis of FLD (Now Steatotic Liver Disease). Her condition worsened, leading to paralysis in 2019. Despite her worsening health, she continued to drink, unnoticed. Doctors suggested she may have ALS, and told her that she would never walk again.

In April 2020 she was diagnosed with Liver Failure,  Doctors thought previous drug infusions may have hastened it. She experienced Psychosis, and even when she didn’t know what year it was, she knew who the President was, and that she wasn’t happy about it – which was reassuring to her friends who were unable to visit because of COVID-19.

Eventually being sent home for palliative care, her ascites had to be drained every 3 days. Her liver disease is now compensated, and she has been diagnosed with CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) a slowly developing autoimmune disorder in which the body's immune system attacks the myelin that insulates and protects the body's nerves. 

Lindsey is an absolute force of nature - despite the pain and difficulty of rebuilding her strength and mobility, she persevered and eventually ran again, proving her doctors wrong. The passing of her friends Mother being one of the things that spurred her on through the pain. She explained when her friend called to tell her “I literally couldn’t do a thing about it. I couldn't get out of the chair. I couldn't get into the bath. I couldn't get on the toilet to go see her. I couldn't do any of it. And I said to myself, If you can't even be there for your best friend, then why are you here?”

Now, Alcohol doesn’t exist in her world, she divorced her husband who continued to drink; losing her Health Insurance. She is living in her own space for the first time in 35 years. Physically – she is in a better place, walking, driving, doing CrossFit and eating well. Medically she has twice yearly liver check-ups, ultrasounds, and bloodwork. She hopes that addiction will classified as a chronic illness, allowing for earlier diagnosis and better treatment.

What’s next for Lindsey? She is going back to become an addiction councilor, and volunteers at the local High School with her CrossFit Gym, working with sober students. Her kindness and willingness to support those in need extends to her aim of fostering troubled teens.