“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!
Extensive history of PKD in my Moms Dads side of the family led me to the process of my own transplant at the age of 58. I learned I had PKD after a few years of low back pain and low energy at age 39. With a mother, 3 aunts, and a grandfather (not to mention great aunts and uncles, 3rd cousins and 2nd cousins) with PKD I had a fairly deep understanding of most things related to PKD. But was still amazed at the total affects to my own life. I had a great nephrologist in DR. STUART HANDELSMAN AT NORTSIDE IN ATLANTA FOR 18 years. At 56 we began the testing process at which time my funtion was at about 22%. It took 2 years for it to fall to about 12%. My husband was tested at this time in the late spring of 2013. He was a match..antibodies and all..Praise Be! I am 5 years out doing great
Wow! It’s amazing how this is such a “family disease” and miraculous how your story unfolded. I’m overjoyed that your husband was a perfect match…now that’s a meant to be relationship. 🙂 I’m so happy you are doing great. Thank you for sharing your story! Wishing you continued great health!
Glory to God! I have pkd and has my own struggle, I recently had to see the Hepatologist about my liver, I was anxious but The Dr elevated my fears my liver was doing great in spite of the cysts. Valen I follow you on social media and I admire your strength Keep on! Sherry Cheers to you and your family, May God continue to bless bot you and any other persons living with this disease. #wewillwinthefightagainstpkd
Thank you very much for your sweet sentiments and reading my blog. I appreciate your comment and am so glad to hear that your liver is doing great! Wishing you all the best! #PKDWillNotBeatUS
I’m 56 and have a gfr of 36. Diagnosed w PKD and PLD when I was 29. Hanging in there, eating well. I enjoy your inspirational story and the comments too. This may be in my future-transplant. Thank you Valen.
Anne Edwards, Jackson Mississippi
I’m so happy to hear that you enjoy reading my blog and I appreciate your support. With being transplanted at 19, it is great to hear that you are 56 and hanging in there with not needing a transplant yet. I hope your GFR remains stable for awhile, and if you wind up needing a transplant, hopefully living donation will be an option for you and you won’t have to go through dialysis. Wishing you all the best on your path with PKD.
I know it’s not quite as intense as the evaluation for the recipient, but I will be heading to N.Y. next week for my two days of testing and evaluation to be a liver donor… Fingers crossed!!
This is incredible! Wishing you all the very best for your testing and evaluation. I hope it all goes wonderfully! So exciting! My fingers are crossed with you!
Nice Blog. Thank you for sharing.