Diagnosed with PKD nearly 20 years ago, Karyn Waxman helped establish the Memphis Chapter and has acted as its coordinator for the past 19 years. Her passion lies in heightening PKD awareness through fundraising events, talking to anyone and everyone about PKD, and offering support and encouragement to those who are newly diagnosed or those who simply need to connect with others.
Karyn recently received a kidney from her friend and living donor, Sara Kelly, and was gracious enough to share her experience with us.
What has been your journey up to this point?
As someone with zero family history of PKD, these past 20 years since my diagnosis have been filled with questions, curiosity, and a desire to learn as much as possible about a disease that I felt had the potential of not only altering my life, but that of my immediate family. Despite being a mostly healthy asymptomatic patient who has spent years eating well and exercising, I have watched my energy level wane as my kidney function slowly declined. While doctors during the early years promised that I’d be amongst those never having to worry about ESRD, it’s obvious that my kidneys had plans of their own.
Why are you choosing to share this experience with others?
I personally have found comfort in learning from the experience of others who have traveled this PKD road before me. When I was diagnosed I felt alone and frightened with no frame of reference for what to expect. Sharing our experiences is one way to educate and emotionally support those needing to know that they are part of a caring group of people who understand what they are going through. It’s quite empowering to know that we are stronger than we give ourselves credit for and more resilient than we ever could have imagined. I also feel that it’s important for PKD patients to know that dialysis does not have to be everyone’s fate. I believe in partnering with our healthcare professionals and having open lines of communication. Therefore, my nephrologist and I agreed that I would be referred for transplant early enough in the process to allow ample time to hopefully find a living donor. Miraculously, my very first tester was deemed a match and quickly approved as my donor! I was able to receive a pre-emptive transplant with 18% kidney function instead of waiting until I was feeling weak and ill or tethered to a dialysis machine. It’s something that I believe is so important to strive for whenever possible.
What is the significance of the blanket and why is it important?
I have been a Volunteer Chapter Coordinator here in Memphis for 19 years. I can recall hosting our very first Walk for PKD and the excitement of attending our conferences throughout my 20-year journey. When I received this extraordinary blanket comprised of Walk and event t-shirts sent to me with love from my PKD buddy Cathy Perkins, I was honestly moved to tears. It represents “US” — the PKD community — we are united in our fight, our goals, and our resolve to end this dreadful disease. I felt the strength of our mission as I wrapped myself in all the love and hard work represented by each shirt in that blanket. It’s truly special indeed!
Where are you having the procedure?
My surgery took place May 21, 2019 at Methodist University Hospital in Memphis, Tennessee.
Why did you choose this location?
I selected this location initially because it’s located in the city where I live. I stayed with this location because my donor is local as well so it has helped keep a complicated situation as simple as possible for us and our families.
What would you like people to know about this process?
I think that one of the important things people should consider when being referred for transplant is staying as organized as possible with all of their pertinent medical history and information. I can recall waltzing into my first evaluation with a folder containing records of my latest colonoscopy, mammogram, cardiology report, dental records, and nephrology labs. It was helpful keeping everything together and having all my doctors’ names and numbers available for the transplant coordinator as well as an updated list of all my medications. Follow up phone calls are important too as most centers are understaffed and overworked. Patience is a virtue when trying to navigate the system.
Having been through the process, were there things that surprised you or that you wished you were better prepared for?
I think that one of the most surprising things for me was the amount of time it takes to navigate through everything. I was referred in March of 2018 but not called for a mandatory education class until June. Then it took until September for them to contact me for my actual testing to begin. I was officially listed by UNOS in October and my donor was called for testing the first week in November. In January 2019, Sara Kelly was officially approved as my living donor!
Is there any other advice you can share with others contemplating this journey?
You can self-refer to a transplant center once your eGFR is close to the 20% mark. There’s no need to wait until you are in ESRD if you are hoping to try to find a living donor. In most cases it can take up to a year or more to have prospective donors tested, as many insurance companies will only allow testing for one person at a time. Giving yourself ample time to find prospective donors and then time for the testing process is terribly important if you want to stave off dialysis.
How do you see your experience as a way to inspire others to consider living organ donation?
I think that most people feel uncomfortable “asking” for a kidney. I can totally relate, as my plan was never to “ask” for a kidney but rather to ask people to kindly share my need for one. I believe that putting the need out in public and watching it work organically is magical. Telling your story helps give people perspective and understand the problem and how they can graciously be the solution. In my case I was told that the initial response to my share request was huge and the number of inquiries to my transplant coordinator unusually high. I’m so full of gratitude to all who considered donation and I truly hope that if they were willing to donate to me that they will still consider donating to someone else in need. Each living kidney donor saves two individuals: the one who receives their kidney, and the person who then can move up the UNOS list one slot sooner.
How do you feel post-procedure, compared to before?
As I’m only one week postop, it’s fair to say that I’m still rather sore and quite bloated from the fluids that they pump you full of during surgery. However, my new BFF “Kelly” the kidney is working like a champ and for the first time in 20 years I have perfect kidney function! I’m looking forward to enjoying renewed energy, completing 18 holes of golf again, and wrestling with my adorable grandkids without feeling exhausted.
What were the emotional aspects of this journey like?
There are lots of ups and downs when you realize that you have no choice but to face your fears of major surgery vs. being tethered to a machine for the rest of your life. The options are poor and it’s a hard pill to swallow. It’s also difficult to sit back and wonder about the “what if” scenario of not being able to find a donor in time. There are days that you find yourself wallowing in self-pity and then days that you simply take a deep breath and push on trying to have faith that it will all work out. I think that the days leading up to my surgery were the hardest, as I feared the surgery itself and a life relegated to a harsh drug regimen that would leave my immune system compromised. However, now that I’m postop, the reality of the situation is here and it is time to heal and resume living my best life. I’ve no doubt there will be many new unforeseen challenges ahead as we tweak medications and find balance to keep this precious new bean healthy. But I’m totally on board with that and ready for this next part of my journey.
Interested in learning more about kidney transplants? Register for our webinar: Having a kidney transplant? What to expect post surgery.