PKD Connection Blog

Education, Transplantation

Getting to know your transplant center webinar review

Karyn Waxman, Memphis Chapter Coordinator

Our recent transplantation webinar with Melissa Blevins Bein, Executive Director of Transplant Programs at UC Davis Medical Center, was a hit! Registration filled up fast, but not before Memphis Chapter Coordinator, Karyn Waxman, reserved her spot. We reached out to Karyn to share her thoughts on the webinar:

When I was diagnosed with PKD 19 years ago, I was an asymptomatic patient with zero family history of the disease. Several doctors told me that they firmly believed that I would be amongst the group of patients who would never need to be concerned with End Stage Renal Disease (ESRD). After all, I’ve always eaten well, exercised and followed doctors’ orders. However, despite my best efforts, PKD has recently reared its ugly head and has taken a toll on my general health and wellbeing. In March of this year, my Estimated Glomerular Filtration Rate (eGFR) hit the 22% mark and my nephrologist and I had ‘the talk.’ While I had made it abundantly clear to him for months that I was willing to do anything to avoid a life on a dialysis machine, that new conversation about transplant referral hit me like a ton of bricks.

As the PKD Foundation Memphis Chapter Coordinator for the past 18 years, I have encountered many patients who have traveled the long, challenging road to a kidney transplant. It’s a bit embarrassing to admit that my knowledge about this subject up until recently was marginal at best. Since my referral to Methodist Transplant Institute in March, though, I’ve been actively engaged in transplant education.

Karyn is currently seeking a living kidney donor

With this in mind, I eagerly signed up for Melissa Blevins Bein’s recent webinar “Transplantation: Getting to Know Your Transplant Center.” As someone who firmly believes in self-advocating, I appreciated hearing her firm statements regarding not waiting for your nephrologist to refer you for transplant. According to Bein, it is perfectly acceptable for you to be proactive and refer yourself once eGFR declines to 25%. However, since you cannot be officially added to the United Network for Organ Sharing (UNOS) list until eGFR is at right at 20% or below, she suggested more frequent labs for people like me, whose eGFR tends hover slightly above that number.

She stressed the importance of having ample time to get evaluations done, of being organized with your test results, and going to appointments with someone who can take copious notes along with you. She also discussed considering multiple center listings if your transplant center has an extremely long waiting list for a kidney. She said ‘timing is everything’ for the best outcome and that this is something patients should work on ‘sooner rather than later.’

Additionally, when discussing similarities and differences in transplant centers, I found it interesting to learn that besides shorter waitlists, other considerations might be post-transplant reasons such as steroid avoidance, kidney biopsy protocol or local stay requirements. I, for one, would prefer not to be relegated to a life on steroids if I can help it and will now consider this an important question to ask when I research additional transplant centers.

Karyn with her family

All in all, this webinar was full of excellent suggestions and timely information. It validated my sense of urgency, my need to stay organized, and my desire to face my future transplant with confidence.

Want to learn more about getting to know your transplant center? Watch our webinar!

Comments

  1. Carolyn Morris says:

    Karen, you have a great approach to transplantation. My daughter, Jamie Cadiz, needs a second transplant after 12 years. Unfortunately, she had contrast (dye) about 2 years ago which destroyed her transplant. She is now in search for a kidney donor and a transplant center.

    Good luck to you.

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