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From Chronic Kidney Disease To The Gift Of A New Life

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Authors: Julika Wocial (JW) and Michael Moore (MM)

MM The need for a donor
After being diagnosed with chronic kidney disease I was able to lead a full and productive life for 25 years, although more recently my energy sagged. Looming options were dialysis, the 5-7 year wait for a deceased donor or a living donor. Dr Google said A living donor was the best option. But how? It must be different for each patient - a direct ask seemed weird, but silence was not an option. Happily I had made no secret of my lousy kidneys thus, 'How you doing?' lead on to the need.

JW What it means to consider living donation
I met Michael 18 years ago: my mentor and colleague. One day he told me his kidneys were failing; he needed a kidney transplant. After initial shock of the news and trying to figure out what it meant for him I started spending every free minute researching kidney diseases. A kidney transplant from a living donor was the best option - allowing Michael to live many more years. I asked myself - is there anything stopping me from being his donor? The surgery risks were minimal and I was willing to take them, the short and long-term consequences - four weeks out of work, four small scars, and lifting limitations for 3 months... All the literature out there, article after article, was proving that living donors live long and perfectly normal lives even 30 years after donation. The answer was simply NO... And shortly after, I told Michael I would like to be considered as his kidney donor.

MM The offers and what that means
The process of assembling a list of potential donors took a few months. Just having conversations. But the repeated realization that someone had offered me a kidney is impossible to adequately describe. Many of us suffer from the imposter complex to varying degrees. Never really believing that we are worthy of being, of the recognition we are given, of one's success as a spouse, parent or colleague. But the array of folks willing to donate a kidney was an irrefutable statement that my life had not been the mess that I sometimes would think of it as.

MM Recipient and donor screening
I began to understand the transplantation roadmap. The recipient and the donor have to be medically and psychologically suitable for the process. The recipient has to show a track record of compliance with medical management. No donation if the recipient isn't going to follow the treatment plan to minimize rejection risk. Likewise there must be no hint of coercion by the donor of a recipient. Both parties need a recent cancer free history - anti rejection drugs in the recipient have the risk of activating latent tumors in the new kidney or elsewhere. Infectious disease issues are also important. This is all managed by two independent teams, one advocating for the donor and one for the recipient. The process is carefully defined, and thoroughly ethical. It is not rushed. We worked with Tufts Medical Center in Boston.

JW - Being screened
Once I found out I was a match for Michael I was put under a magnifying glass - all of my systems and organs were screened for proper function and the absence of any pathology. The team collected and analyzed any and all of my bodily fluids and scanned my abdomen and lungs. The tests were mostly painless and non-invasive - the most stressful part was the possibility of finding an illness or a disease I wasn't aware of - but it never happened. I also underwent a psychosocial evaluation to ensure it was a well thought-out decision. The screening process took a couple of months and on November 11, 2015 my donor coordinator informed me I was clear to donate my kidney!

JW - Telling friends and family
Sharing the decision with my Mom was the hardest part - I was afraid, as a Mom, she will never be able to understand why I am willingly giving up one of my organs and undergoing a major surgery with absolutely no benefit to me. I underestimated my Mom though... Being the wise person that she is, after a few minutes of absorbing the news she accepted it and never questioned me. I had her unconditional support. Some family members tried to guess what my big news was but... they weren't even close (marriage and pregnancy were some of the guesses).

MM - The reality of surgery on the calendar
Timing of the surgery was rightly Julika's call. I of course front loaded my calendar prior the surgery to get as much done as I could for various ongoing projects. We settled on a date. I was busy the previous month, which was an excellent distraction. I tried to 'no big deal' the whole thing, but in the immediate aftermath I inevitably wondered what on earth was going on. Tubes sticking out of various body parts, and a less than stellar sense of wellbeing.

JW - Surgery and after
The surgery took place exactly five months after I found out I could donate. My extended family came to Boston to be with me and support me. I spent three days in the hospital - feeling 100% better and making great progress each day. I spent four weeks enjoying home cooked Blue Apron meals from my colleagues, reading tens of witty, colorful cards from my family and friends, walking my dog and planning how I can advocate living kidney donations. Six weeks after the surgery I hiked up a 4K summit in Vermont and resumed a completely normal life style. There are currently 77,457 people waiting for the most precious gift they could ever get - a gift of life... Four scars and four weeks home... That's all it took to give this gift to Michael.

MM - A new life
I'm now closing in on 5 months post-surgery. Tufts continues to monitor my progress very carefully. So many of them are looking out for me. It's really humbling. I'm learning to live with the anti-rejection drugs. I'm back at work full time. Perhaps the greatest gift of all is that compared to my uremic pre-transplant fuzziness, my brain is clearer, more motivated, and embracing the challenges of work and family as opposed to dodging it all in the months and years of insidious kidney failure. Day by day I get to do more of what I used to be able to do. Day by day the realization of what Julika has given to me and what could be given to other folks in need, swells an overwhelming emotion of gratitude and hope.