“I’d like to talk to you in person next month about a transplant.” I heard these words from my primary sclerosing cholangitis (PSC) specialist over the phone in December when I was hospitalized for the fourth time with sepsis. The doctor’s appointment was surreal because it took place in January, and in February I completed the two-day liver transplant evaluation at California Pacific Medical Center (CPMC).
Everything is happening so fast. I feel like my mind has not had time to catch up with all that has occurred in my life over the past several months. There has only been a limited time of stability with my health and calmness for me to digest everything. Noah and I went from me being diagnosed with PSC in October 2017 at CPMC to returning to the same hospital several months later to be evaluated for a liver transplant.
I was told it was mandatory to have someone join me for the evaluation. I can’t imagine going through it alone. I was lucky to have my incredible husband by my side. Support is a necessity, not only for our emotional well-being, but also to help digest and remember all of the information discussed. I was also fortunate to have a dear friend and liver transplant recipient, Natasha, join us for one day of the evaluation.
There were many varying emotions during those two days. It was quite exhausting to discuss all that I’ve been through in my 35 years with so many specialists. They all needed to review my entire health history to make sure I’m well enough to receive a liver transplant. It almost felt like an interview, at times.
We are blessed to have a friend who lives in San Francisco and lets us stay at her home during CPMC appointments, since we live over two-and-a-half hours away from the hospital. We knew there would be very few breaks during these two days, so we did our best to be prepared. This included packing snacks and drinks, as well as all of my medical paper work, in a small wheeled bag. We knew we couldn’t control all of the stress surrounding the evaluation process, but staying close to the center and being organized definitely helped to alleviate some of the daily anxiety. Most importantly, Noah and I made the best of the experience and didn’t forget to laugh and smile throughout it all. We found enjoyable things to do together in the evenings to take our minds off of things.
I’ve been able to stay emotionally sane and in good spirits through all of this by welcoming support and taking it one day at a time. If I think “big picture,” it gets too overwhelming. I can’t fathom getting “the call” and having to be at CPMC within four-to-six hours to receive a liver transplant. The emotions aren’t just connected to my own life, but how my journey is changing my husband’s life, too. We’re shifting our mindset from “what the heck is happening to our lives” to “let’s be grateful that I might be able to get a liver transplant and feel better and hopefully live a healthier and longer life despite having primary sclerosing cholangitis.” It’s all about perspective.
Have you had a transplant? How did you handle going through the process?
Read part 1 to learn more about Valen’s transplant evaluation.