Celebrate the Big Days; Minimize the Bad Days

December 1, 2016 is a big day for me. It’s the 8th anniversary of my second kidney transplant. It’s also 30 years and five months since my first transplant surgery. Being fortunate enough to spend time with other transplant recipients, it’s a pretty common theme that we all mark time by the distance we’ve traveled since exiting the operating room, the hospital, the daily labs. We pride ourselves on achieving even the smallest of milestones then grieve or rage when we have medical set-backs or full-on rejections.

 

Eight years ago, our childhood friend Maureen and I walked into ECMC at 6 am with our families, and by dinnertime when our gurneys crossed, her left kidney was safely ensconced in my lower right abdomen. I cheer for Maureen and all living donors who could see past their own pain, fears, and inconvenience to bravely save a life of a family member, friend, or complete stranger. I want everyone to know how exceptional she is.

My thoughts and feelings are so jumbled that I won’t be able to properly articulate all that’s in my heart today. I’m so proud to be a transplant success story, yet at times I feel cheated that I didn’t have the chance at a regular adulthood (having been diagnosed at age 21 and transplanted at age 23.) I am profoundly grateful that modern medicine has given me three decades more of life to be with my family and dear friends, marry Jerry, watch Nicholas grow, be an important part of my nieces’ and nephews’ lives, and safely travel to many of my bucket list destinations in Europe. I’m privileged that my life journey has led me to meet many truly amazing persons across the U.S.—including doctors, nurses, organ donation advocates, donor families, and fellow recipients.

Today I celebrate. Which doesn’t mean I never have a pity party. Even when recipients feel great because our kidneys are doing their chemistry master-works for our bodies, there are often side-effects from myriad daily meds which make us feel crummy. I try to never limit what I am capable of doing, but I temper that with a healthy dose of common sense. I think most recipients feel the same way; some don’t. At times it may take me an extra beat to steel myself when my medical team prescribes the next nasty treatment to combat acute or chronic rejection, but I’ll do so willingly again and again if it means that I can live. I wish some days that I would feel no adverse side effects, not need to nap on the couch, and not have to cancel plans when “everyone else” can attend. To me, it would be unconscionable to do anything that would bring any potential harm to my well-being or my kidney.

Receiving a living donor kidney was quite a different experience for me versus my first transplant from my deceased donor, Joseph Albers. I didn’t know his identity for more than 26 years; I just knew he was 20, killed in a car accident, and that his family was planning a funeral as I prepped for surgery. In the hospital, as a small way to say Thank You, I vowed that I would live half my life for this young man who never got the chance to live his. I planned for his gift to last forever. It didn’t, but it lasted phenomenally long. It took me quite a while to embrace that transplantation is a treatment—not a cure—albeit a really good one. Ever since Maureen gave me a kidney it is a joy to call her any time just to let her know what we’ve been up to. It often goes unsaid, but every conversation could begin, “Thank You! Because of you…”

Beyond words, I hope my life’s deeds show her my everlasting thanks. I volunteer to help others in this same unenviable situation—not only to pay it forward but to share my hard-won knowledge. My sister MaryEllen recently asked me if I remember what it feels like to not be sick. I don’t. I am always waiting for the other shoe to fall. I wish I was as healthy as I was when Maureen and I first knew each other, but that’s not reality. Reality is accepting the hand you’ve been dealt then retooling your life to make it the very best you can.

Have an awesome Pity Party when you need it, then Live, Live, Live!