I Never Felt So Alone
After 20 years with Type 1 Diabetes, my body and mind were exhausted. The constant management needs combined with the dangerous volatility in blood sugar had taken its toll on my kidneys and eyes. I was told that I needed a kidney transplant, or I would need to be on dialysis within the next six months. I knew what dialysis does to someone with T1D — the average life expectancy is 5 years, and those years would be encumbered by 3 weekly 4-hour long visits to a dialysis center, living with a port, and slowly but steadily getting sicker and weaker.
While I was incredibly fortunate to be under excellent medical care and to have a very supportive family, I felt so alone. I could not imagine what a transplant would be like. How would it feel to have another person’s organ executing critical functions in my body? I was desperate to connect with someone who had been in my shoes, someone similar to me, someone to whom I could ask questions, relate my worries, feel inspired by and feel less alone.
My Diabetes journey had been a never-ending road that kept finding new forks. I had attempted to reverse the damage to my kidneys with diet, multiple drugs and intense glucose management, but the function just kept dipping toward 10 percent. To save my vision, I underwent dozens of laser treatments of the back of my eyes, burning the very tissue that I needed to see. But they saved my eyes from the bleeding and leaking that would cause blindness otherwise. I was so fortunate to be able to receive a kidney from my father for my first of two transplant surgeries. But despite that surgical success, due to my T1D, one evening I passed out and hit my forehead on the dishwasher corner, which led to a broken nose, cracked open forehead, and the loss of a couple of teeth (check out the middle picture below…it was not pretty.) With my face still bruised from this accident, I was thrilled to get the call that a pancreas was available, and I was finally on top of the list — I was ready to fight for my new life!
After receiving my transplants, I had so many questions for others who had experienced what I was experiencing. I especially wanted to find people similar to me age-wise and workwise, people with whom I could also connect with socially. I wanted to know how to tell my boss about my medical needs and how to introduce myself as a single woman to a new date. I also was curious as to how others managed the nausea and GI issues. Were there any food groups that worked better, and how worried should I be when hanging around little kids?! Could I ever have a child of my own? In order to get these questions answered, I needed access to a transplant community that extended beyond my transplant center and treatment team.
Today, I am excited to publicly announce the launch of TransplantLyfe: a place where transplant recipients, donors, care partners and those waiting for a transplant can connect and learn from one another. This launch is extremely personal to me, for obvious reasons, and connecting patients to other patients has been fundamental to our mission since I co-founded Lyfebulb in 2014.
Please check it out here! This is a digital connectivity platform for patients, donors and care partners, built by patients and care partners for patients and care partners! TransplantLyfe brings patients, donors and care partners together with one another to provide a community sharing platform, 1:1 connections, educational resources and a personal (digital) health journal. Our goal is to allow one to thrive with a transplant, rather than merely survive.
We hope you join as a member. I’d love to speak to each of you on Find a Friend and in the Forum! Thank you and please let us know what you think — no question or comment is bad. I care so very much about this platform, and I think we all deserve to live better with our transplants (and we owe it to our donors as well)!
With Love,
Karin
P.S. I do wish to recognize and thank our partner, CSL Behring, for its support of TransplantLyfe which helped turn this vision into a reality.
