“It is going to be intense.” This is how my doctor described going through the liver transplant evaluation process. I had no idea what I was getting into because I didn’t have to go through this when I received my kidney over 15 years ago due to PKD. I was too sick then to be placed on the wait list and I was fortunate to receive a kidney from a living donor. However, I now find myself in a different position with my primary sclerosing cholangitis (PSC) diagnosis. I went from being diagnosed with PSC in October 2017 to being added to the national waitlist on March 6, 2018.
My liver transplant evaluation was a two-day process at California Pacific Medical Center (CPMC). All of my scheduled appointments were to make sure I was sick enough to be placed on the wait list, but well enough to endure the major surgery. This took place in February 2018 when I was on daily IV antibiotics, so we kicked off each morning with infusion therapy.
As my husband, Noah, and I entered CPMC on day one of the evaluation, I knew it was going to be a long day of navigating around an unfamiliar hospital, enduring tests and absorbing a considerable amount of information. I was approaching it as a “travel day” – a day where so much is out of your control, you have to focus on patience and “go with the flow,” and that is just what Noah and I did. It started off with registration and lab work, followed by several hours of heart tests. I had a persantine thallium stress test, heart ultrasound, electrocardiogram and echo with bubble, all to make sure my heart is strong enough to undergo a liver transplant operation.
We went straight from the heart tests to a financial consultation where they discussed health insurance and expenses associated with transplants. Noah and I wrapped up our day by attending a liver transplant evaluation class where we learned about the specifics of the liver, what happens as the function decreases and what to expect throughout the journey to transplant.
Day two was consultation day. We started with my infusion, which was followed by a nephrology consultation to discuss if the kidney that I’ve had for over 15 years can withstand all of this or if I should be listed for a liver and kidney transplant. We then had a meeting with social services to make sure I have the support I need and am prepared for all that is to come. Next was a consultation with a liver surgeon to discuss the risks and benefits of a liver transplant. Our day concluded with a cardiologist consultation to discuss the results of the tests I had the previous day.
My doctor was right: the evaluation process was intense and mentally taxing, but Noah and I accomplished it together and made the best of it.
Stay tuned for my next blog where I discuss the emotional side of being evaluated for a liver transplant!
Have you been evaluated for a transplant? What was the process like? Please share your experience in the comments below!