Embrace the improbable: Meet @stephanierp

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Apr 9 8:00am | Rosemary, Volunteer Mentor | @rosemarya | Comments (23)

ROSEMARY: What brought you to Mayo Clinic Connect? 

@stephanierp: When I was 33, I was diagnosed with PKD, Polycystic Kidney Disease, which took out my kidney function over the course of 20 years. After receiving a kidney transplant in February of 2020, I remember sitting in the hospital, hearing about something called the coronavirus. I assumed the repercussions for me would be minimal, like the bird flu or Zika virus. 

Instead, within weeks, the world went into a lock-down. I was still on high levels of immunosuppressants, and doing my transplant check-ups online, rather than in person. When I had to go to the clinic for blood draws, I wore double masks, gloves, and stood in the waiting room, rather than sit next to anyone. I felt isolated and frightened, and knew this was not a great mental space in which to heal. 

Through Mayo Clinic Connect, I found a supportive community that helped me transition into post-transplant life, in an era that felt post-apocalyptic. About 5-weeks after my transplant, I felt particularly hopeless—as if I was never going to feel healthy again. I posted in the Transplants support group, sharing my fears; and members immediately responded with support and kindness. It was uplifting to know these people were my peers. They had all gone through a transplant and were now living healthy lives again. It was transforming. 

ROSEMARY: What motivates you to take part in the community?

@stephanierp: Gratitude. I am grateful to this community for the support they have shown me. I remember vividly how frightened I was before and after my transplant. And I remember how comforted I felt, after reaching out to this group. I was even able to reach out to other people, with PKD, when I needed advice about whether to have my second kidney removed—a decision only PKD patients would understand. This was extraordinary. 

I am grateful to those who buoyed me up, when I felt overwhelmed, through their kind words, and the examples of healthy transplant survivors they showed me. I am committed to supporting others as they navigate kidney failure and possible transplant experiences.

ROSEMARY: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?

@stephanierp: Certainly, all the beautiful people, who share their stories, support, and experiences. Also, the mentors and moderators do a fantastic job of making sure everyone who posts, receives a prompt response and is directed to related discussions and connected with community members, who have dealt with similar issues. The conversations are honest and respectful, with upbeat responses. This combination makes Mayo Clinic Connect, a special community that is warm, safe and friendly. 

ROSEMARY: What groups do you participate in?

@stephanierp: I like to check-in with the Kidney & Bladder support group, and the Transplants support group. I have learned a lot through the experiences that others have shared. 

ROSEMARY: Tell us about a meaningful moment on Mayo Clinic Connect.

@stephanierp: The traditional route for transplant recipients with PKD is to remove one kidney, at the time of transplant, wait six months, and then remove the second kidney. I was onboard with that, before my transplant. However, after the painful healing process of the first transplant, I was not sure I wanted to withstand the second surgery. 

Mayo Clinic Connect allowed me to connect with other PKD patients about the decisions they had made and why. This was an extraordinary opportunity. PKD is not that common, and people with PKD, who have also had a transplant, are not easily found. Through Mayo Connect and their fabulous mentors, I was put in touch with a group of people, who understood my specific situation and were able to share the decisions they had made and why. One member, @jolinda, was the first patient to have both kidneys removed during the transplant surgery with Dr. Prieto at Mayo Clinic. She, and others, encouraged removal. Because they dealt with the same disease I did, I knew their choices were relevant. This gave me the courage to schedule an appointment with Dr. Prieto and have my second kidney removed. This decision made all the difference. I was finally able to truly feel healthy again and get on with my life, two years after my transplant. 

ROSEMARY: What surprised you the most about Mayo Clinic Connect?

@stephanierp: I am surprised by how diverse the support groups are, covering a range of conditions and experience, and how educated the members have become. During COVID, when the vaccines came out, I received informed communication, in an environment that was safe to share thoughts, concerns, and differences, without fear of being verbally attacked. I accredit the moderators, mentors, and the members for not allowing the conversations to become divisive or aggressive, during a time that was fueled by fear and uncertainty. 

ROSEMARY: What energizes you, or how do you find balance in your life?

@stephanierp: Dance has been my oxygen, since I was a child, then as a student, a professional performer; and now as teacher, coach and dance studio owner. Our dance studio is my happy place. Serving the students and our community is a joy. I love spending time with my co-workers, who are caring, creative, and inspiring. I am especially inspired when teaching our classes for students with special needs. 

I find balance through family, writing, nature, weight-lifting and yoga practice. 

ROSEMARY: Tell us about your favorite pastime or activity.

@stephanierp: I love to read, write, walk in nature, spend time with animals, teach, and work-out.

ROSEMARY: Do you have a favorite quote, life motto or personal mantra?

My descent into kidney failure taught me incredible life lessons that continue to serve me as I heal and move forward. My motto is four point: 

1. Embrace the improbable: I always expected to live healthy, even when renal failure made that look impossible. The truth is the improbable occurs every day. Our very existence is practically impossible. Statistician, Ali Binazir, came up with the odds that any one of us exists, are somewhere about 1 in 10 to the 2,285,000th. So why not expect the best, even if it looks unlikely? 
2. Always look up: Stay focused on the potential and the expansiveness of the sky. This one proved to be true both theoretically and physically when I was dealing with renal failure and the light-headed dizziness that could be immobilizing. I found by focusing up, to a cloud or a tree, I could steady myself and continue moving forward. 
3. Adaptation is survival; your plan is not: When I was living in renal failure, I read a book called Deep Survival by Lawrence Rodriquez. He shared stories of people, who survived insurmountable odds. And time and time again, the common denominators revealed were: acceptance and adaptation. Survivors do not hang on to their idea of how things should be. Survivors adapt quickly to a sudden shift in their environment; gather new information, and develop a way to adapt. This is true in the medical environment, as well as in nature. 
4. Sometimes, it is just ugly: No amount of gratitude, positive thinking, or focus can take away the ugly realities of disease. It is okay to cry snot bubbles, sometimes. Or to be angry and mourn the life you wanted. None of us wanted to be sick. It is sad and disappointing, and it is okay to allow yourself to grieve. Just don’t stay there for long. There is still a sun shining. Children are still outside laughing and playing. Life goes on, and we need to embrace this, for whatever time we are granted. 

ROSEMARY: What do you appreciate the most in your friends?

@stephanierp: I love creative individuals – people who create something that was not there before their minds conceived of the idea. This creativity can be in the arts, in creating a business, in creative conversation, problem-solving, or humor. 

I also love the loyalty of my friends and family. Loyalty is such a beautiful human quality. 

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