“What do I have to say now?”
It’s what I think as I consider writing again. July is an emotional month every year and the intensity and spectrum of emotion increases through to October.
It’s my current goal that led me to post in a round-about way. I’m digitizing boxes of paper records and documents, getting rid of things I don’t need or want, and simplifying as I try to decide what I want to do next in my life.
Those records, well, they’re predominantly medical records from my time on dialysis and my efforts to get a kidney transplant. The lab tests, medical exams, letters, and hospital records were necessary for so long. I needed them at my fingertips. They bring up the memories, the emotions, the gut-wrenching struggles as I go through them to decide what to keep and what to toss. Processing takes time, externally and internally.
So Dear Reader, I’ll be going between the present, past, and future to get to where I am today with my kidney story. I’ve thought a lot about if letting it fade into obscurity is the better choice. Is there any benefit in the telling of a bit of my life now, so many years after my last post?
YES! I am a recipient!
A kidney became available for me in October of 2016. I’d been on dialysis almost five and a half years by then.
I boarded the plane in jeans, a white long-sleeved pullover, and a pink tutu at LAX for the early morning flight. Wearing the plastic captain’s wings as I passed by others and hearing them tell me, “Good Luck!” made me smile more as I looked for my seat. I’d spoken to the pilots, while waiting for the boarding announcement, to check if we’d be on time for our arrival in Phoenix. It was crucial that we land on time. The pilots gave me the wings to wear. I still have those tucked away as one of many reminders of that day that started at 2:00 am.
How do I describe what it was like to be on my way to a better life? Elation, amazement, disbelief, awe. I felt all of that and more as I flew by myself to go get the kidney that would let me live a more joy- full life. I only felt excitement and no fear. I’d accepted that there were two outcomes possible: I’d live or I’d die. If I’d gone all the way for a stem cell treatment in Trinidad, then I could certainly get on a plane after two hours of sleep and go get a transplant.
Everyday for a few months I visualized my body accepting a new kidney and integrating it into my body and spirit. I imagined it becoming a part of me easily. I told myself that I could do it and that it would be the best kidney I could hope to be given.
When I got off the plane, my phone rang. A transplant nurse had been keeping track of my flight. She asked me how I planned to get to the airport. I certainly was not going to stand around for an Uber. I took a taxi and was there by 8:30 am. No one was there with me. No one met me there. Comforting reassurance was absent and I relied upon my courage. I knew the facts about my donor and knew with every fiber of my being that it was the kidney for me. Waiting in the admitting area of the hospital, brimming with anticipation, I wanted to scream out, “I’m here! I’m ready!”. Courage and a knowing that it was my kidney had filled me, leaving little room for anything else. There was no turning back.
Even as I think of it now, the tears well up and my lips form a smile. That day was absolutely the best day of my life!
My transplant team doesn’t know that I had two stem cell treatments and neither do any of my current doctors. I initially kept it to myself so that I wouldn’t be rejected as a possible kidney recipient when I went through transplant evaluations. That’s right; I went through more than one of those and traveled to multiple transplant hospitals in America.
I’ve proven that the stem cell treatments caused me no harm, and haven’t affected my transplanted kidney or body in any negative way. My kidney is a super star and my creatinine ranges between 0.65 – 0.78. I remain a huge proponent of stem cell medicine and marvel at what can be done with it now. There are several transplant hospitals that combine a stem cell infusion with a transplanted kidney from the same living donor. Those recipients have a chance at taking little to no anti-rejection medications.
I have no regrets as a kidney recipient. As I sit here resting my left knee which became inflamed over the weekend from a stuck kneecap (ouch!), I’ve decided to revisit the keyboard. Life is never the perfect ideal we imagine. I embrace that I am free from the dialysis machines every day. There have been great, good, sad, infuriating, wonderful, peaceful, painful, and mind-blowing moments: there will certainly be more of them. I remain a realist envisioning the next steps of my journey, choosing to embrace my life through it all.
Today, five years ago I found out that I was active on the list of that transplant hospital. Memories can be so sweet.
Kidney Recovery: stem cells to transplant 