Valen and Noah with their friend Natasha (left), who joined them for one day of the transplant evaluation.
“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.
Valen’s favorite food, sushi, from one night of the evaluation when she and Noah went out for dinner.
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.
Noah the evening after day two of the transplant evaluation, saying “A day that ends with ice cream can’t be all that bad of a day.”
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.
Thanks for sharing.
Wishing you the best.
Thanks a lot, Vik. I appreciate your support!
I had my liver transplant at CPMC on January 3, 2015. You are in good hands, friend. Praying for the best for you.🙏💚
This is so comforting and wonderful to hear! Thank you so much for sharing and for your prayers. Hope you’re feeling great! Hugs!
You continue to have such strength and honesty. Thank you for sharing your journey with us!
It’s an honor, Kathy! I appreciate your support! Big hugs!
Hi, Valen. It’s good of you to share your experiences and thoughts. It is helpful for you to get your thoughts and feelings out of your head and for others in similar circumstances to read about. We always need to feel we are not alone on our journeys.
I have PKD in my family and I was diagnosed at 27. I received a new kidney from my beloved sister when I was 45. I was fortunate to have had a preemptive transplant and avoid dialysis. I can’t say it was easy but, 9 years later, my kidney function is still at 30%. At age 50, three years ago in January 2015, I had a liver transplant. As I was in liver failure from PKD, I received a cadaveric liver in “pretty good” condition after only 3 months on the wait list. Again, I did not have an easy time but, that was mostly due to the difficulty extracting my very large, polycystic liver with subsequent major blood loss. It took more than 6hours to remove the liver in pieces with the final transplant taking 16 hours in total. Another complication was that my fragile, transplanted kidney stopped working. It “slept” for 2 weeks while I had hemodialysis. What a lucky day it was when I first felt that I had to pee! The kidney did wake up and continue to improve and function adequately to where I am today. The new liver was happy from the moment of transplant and continues to be with perfect function. Three years later, I am living a normal life other than the fallout of having chronic illness for over 20 years, such as fatigue and weakness from multiple surgeries (over 30). It sounds like overall you are in better health than I was pre-liver so, you should do very well.
On a practical note, what advice I can give you in preparing for this event is be ready. By that I mean, have your little bag packed. Be ready to walk away from your life at a moments notice. I wasn’t ready and, it was a scramble and added much more stress. In a few short hours pre-op, I had to jot down as many accounts (phone, gas, electricity, insurance, etc.) and accompanying passwords as I could remember. I had to organize pick up and drop offs for my kids appointments and commitments. As I don’t and didn’t have a partner, I had to try to remember all of the various names of my banks, insurance providers, financial planner, etc. Fortunately, my brother-in-law figured things out for me and kept my life running for me while I was away in hospital in a different city. I don’t think I ended up bouncing any payments or renewals, thanks to him. Had I had all of it written down, it would have been much, much easier. It sounds like your husband is very supportive and will no doubt have these things sorted out but, I encourage you to be as prepared as you can to walk away from your life with all your ducks in a row.
Also, a list of email addresses and phone numbers for updates. Possibly a phone tree. Your friends and family are going to want to know how you are and it will be easier for your supports if a list of who you want kept in the loop is all ready.
Get those little jobs done you’ve been putting off, the sooner the better. The call may come sooner than you think. Best of luck and good wishes for a speedy recovery.
Sincerely,
Tanya
Dear Tanya,
I can’t thank you enough for sending this encouraging and informative message. I appreciate your kind sentiments and also sharing all that you have endured. Crazy how long your liver transplant surgery was and how they had to piece by piece take your PKD liver out – wow. I haven’t met too many people that have needed a kidney and liver because of PKD. And your kidney going to sleep, oh my I can’t even imagine how incredibly scary that was and I’m so thankful to hear that it woke back up and is doing ok – phew. During my evaluation process, they did testing on my transplanted kidney to see if they should list me for a liver and kidney. I’m so happy that all of the testing came back ok and they don’t feel like they need to list me for a kidney in addition to the liver. Thank you for the encouragement that I will do well with getting a new liver. It is hopeful to hear all that you have been through and that you are now doing well after a kidney and liver transplant.
I also greatly appreciate all of your advice. Noah and I are definitely in the planning and prepping mode. I have not become active on the list yet, but am very close to that happening. It is so surreal to plan for a huge life event that you don’t know when or where it will happen (as I may get listed at two different centers). We are both extremely organized people, which I know will come in handy and a good thing is that I already live post-transplant life, so that part doesn’t worry me too much. I’m so thankful to have Noah and I’m so glad that your brother-in-law helped you as I can’t imagine doing this alone.
If you are on Facebook, feel free to friend me. I’m listed at Valen Cover Keefer. I’d love to stay in touch.
I appreciate you taking the time to send this message of hope and valuable advice. Wishing you all the very best! Big hugs!
Valen,
You are such a strong beautiful person and such a source of strength and encouragement for those of us in the PKD battle. You’ve responded to me once before and I so appreciate it. I’m a 69 year young stage 4 PKD woman who is now battling anemia from the disease(not related to iron level), iron is normal. Had first injection of Procrit 4 weeks ago now waiting on lab results before next injection. To top matters off I’ve battled several skin cancers both basal and squamous. Had radiation therapy for a difficult located basal and need another. Also have had another large tumor appear on arm. It feels sometimes like I’m spinning out of control.
Then I read your blog and see what you’ve battled and I realize we just have to do what we have to do and keep on keeping on.
It is difficult being alone. I’d love to have a great mate in my life to encourage me but that’s a big job for any person! 😊
I wish you the best of everything, great healing and great love in life.
Interesting, even though I have cysts in liver, thank God, liver function is normal.
Hi Joan,
Thank you so much for sharing your experiences with PKD and for your super sweet sentiments which mean so much!
Have you had a transplant yet? I’m assuming no since you said stage 4, but your comment on the skin cancers made me wonder, because post-transplant patients have a higher risk of getting skin cancer.
We can go our whole life with liver cysts and it never affect the liver function. I hope that is the case for you. You are so right that regardless of how many health hurdles we are enduring, we must keep on keeping on. Wishing you all the best and sending lots of strength and love! If I can help you at all on your path with PKD, please let me know. Hugs!