Bill and Helen are Champions and chronic kidney disease advocates who want to give others hope. They lead the Saddleback Kidney Disease Support Group that has helped many get the education and support they need.
Champion Spotlight is a series that features Mayo Clinic Champions and celebrates the effect they have on people’s lives. Tony Hart, Mayo Clinic Champion specialist, talks with Champions who have provided hope for others in their own ways.
TONY: Can you tell me a little about your healthcare journey?
BILL & HELEN: We live in Southern California. Bill was diagnosed with End Stage Kidney Disease 11 years ago at the age of 72. Our road was quite a rocky one and our first nephrologist gave us very little information about any treatment options other than dialysis. We spent the next 2.5 years pursuing transplant with a dear friend, Jeff, age 46 as our living donor. Once the donor was declined at the first transplant center, two additional centers approved Bill but wouldn’t consider the donor since he had been previously declined. We were devastated. It was then through nothing short of a miracle we met Dr. Mark Wedel, a retired physician who was passionate about helping kidney patients. He had been transplanted at Mayo Rochester the year before. He referred us to another local center where they were much more forward thinking and willing to screen our donor on his own merit. On July 6, 2011 Bill received Jeff’s kidney…at the age of 75. Bill is now 83 and thriving! We knew we needed to share our story so that we could help others facing kidney failure.
TONY: That’s quite a journey. I’m glad you were able to find a living donor and receive a kidney transplant despite hurdles. What made you decide to share your experience and become advocates?
BILL & HELEN: We learned a great deal about the hurdles kidney patients face and the roadblocks they often encounter in seeking solutions. For us this included navigating insurance matters, transplant screenings, waiting list barriers, and dialysis options, all while taking care of Bill’s day-to-day health regimen and dietary requirements. We wanted to help in any way we could to educate and walk along side of others as a way to pay it forward. In 2011 we worked with Dr. Wedel to implement a local support group at Saddleback Church. As the group began to increase its number of patients, we were finding some of them had rather unusual health histories that we felt local centers wouldn’t consider. When those patients appeared, Dr. Wedel stepped in to determine their best options and then reached out to his contacts at Mayo on their behalf where a number of them received transplants. We also know that the Mayo Team is willing to “think outside the box” when screening patients and donors. We feel each patient is entitled to be screened on his/her own merit, unless their medical records say otherwise.
TONY: Despite not receiving a transplant at Mayo Clinic yourselves, what drives so many from your support group to Mayo?
BILL & HELEN: As the wait for deceased organs is terribly long in Southern California, several patients from our group began contacting Mayo in Arizona. The waiting list is considerably shorter for deceased organs in Arizona and it is a fairly convenient travel destination. Each and every patient at any Mayo facility has been treated with equal professionalism and exceptional care. To date 28 patients from the group have received kidney transplants and 15 of those have been at Mayo facilities. Additional patients are still in the process of pursuing transplant at Mayo facilities. The streamlined process for screening patients and donors is one of the high points for patients. At local transplant centers, it’s not unusual for patients to spend a minimum of 6-8 months being screened with lots of frustration in the process. As a number of group members have migrated to Mayo in AZ, we were also honored when several of the doctors from The Mayo Arizona Transplant team came to Southern California and held a Q&A for the patients and their families. It was very informative and helped more of the group members to think broader about their opportunities.
TONY: Your passion for helping others really shines through in your work as advocates. What do you find most rewarding about helping others?
BILL & HELEN: We wanted to turn our biggest setback into our best comeback so people know they are not alone. When we see patients attend the group for the first time, they often are like “deer in the headlights”; overwhelmed with their diagnosis and not sure where to go and what to do. Once they have attended meetings regularly for a month or so and have been loved on and learned more, we slowly see them become more peaceful and reach out to encourage the others who are new to the group. This is what really brings us joy…knowing they are more in control of their disease instead of allowing their disease to be in control of them.
We remember those days of frustration during Bill’s early stages of his disease. There is so much information available but it’s often overwhelming to sort through and put together a plan. If it weren’t for our faith in God we would have lost hope. We also want patients to know about all the options available to them, not just the ones in their own backyard.
A support group needs leaders for sure. That being said, Bill and I are very much aware that this group wouldn’t exist without the willingness of all the patients and family members who come and share their stories. They come to get help but in the process they are helping others.
TONY: What a difference you’ve made! Is there any advice you would give other Champions or those wanting to share their own experience?
BILL & HELEN: Every patient’s journey is different. Some stories have happy endings and others maybe not so happy. But every patient’s story can help someone else who may be going through a similar experience. Don’t waste a hurt but use it to help others.
We have been fortunate since the inception of this group to have “alumni” continue to attend our meetings and become very proactive advocates for those group members still pursuing their transplant journey. These alumni members are very useful in giving the patients a new perspective and helping them see their situation from a different lens. It’s one of life’s best rewards and we are grateful for their continued commitment to pay it forward.
You can spread hope
Mayo Clinic Champions love to hear what others are doing to spread hope. If you’d like to tell your story, comment below or email the Champions program, and you may be the next Champion Spotlight.