A Kidney Transplant Spouse’s Story - Preface

I am fortunate that I’ve been a lot of “things” in my life. I often say I’ve reinvented myself more than anyone I know. That’s both professionally and personally however there has been one constant in my life for the past 30+ years, Michael.

Michael is a private person. Michael thinks the Internet is up to no good. Michael sees no reason for social media. Michael is a performer but only on stage, not online. The day I met Michael I said to myself, “I’m going to know this person the rest of my life.” I’d never had that experience before or since. Love at first sight? Maybe. Cosmic intervention? Maybe. The Lord doing his/her j-o-b? Maybe. All I know is I’m grateful for him in my life because he loves me as I am for who I am (even if that changes from moment to moment).

When I recently started (over six months now) working for a well-known charity, in a “get to know you” exercise, they asked, “Tell us something we don’t know about you.” I said, “I believe in my heart, I’m a writer.” (Confused but supportive looks.) My Mother believes she’s a writer, my aunt IS a writer, my niece is a writer so I guess it’s no big leap that I would think I was one too.

In 2006 I was chosen in a national contest to blog for Project Runway Season 3. My blogs appeared on the Bravo website every week and they encouraged me to start a blog. I did. I blogged for four or more years but it became more of a chore than a joy so I stopped.

Three years ago Michael was having extreme fatigue and they kept sending him for iron shots. He was anemic and they couldn’t figure it out. Finally the diagnosis came that he was in renal failure. The kidneys were in such bad shape they didn’t biopsy them to see what happened. They suspected years of undiagnosed high blood pressure (get yours checked) and thus began our journey. For more than six months he ignored it, then he fought even the idea of dialysis, then he accepted it but we also went to Mayo Clinic to get on their transplant list and finally, he began peritoneal dialysis in the home. It started as 6 hours a night, then 8 then eventually 12 ½ hours. Recently they determined that it wasn’t working, it wasn’t cleaning his blood. Every night, I would ready the machine, carefully wiping everything down with bleach solution to ensure it was sterile and safe for him. He would hook up, he would take thousands of pills, and while he initially felt better on the dialysis, we were coming to a new phase where his doctors told him, much to his horror, he was going to have to go on hemodialysis. We dreaded it. Physically and emotionally it was the one thing we didn’t want. Then, because things happen when they’re supposed to, the call came from Mayo and within 24 hours he had a kidney placed in his body and we were off on another journey. The journey of recovery for him, for me, for us.

As Michael is a private person, this is not meant to share intimate details of his journey but rather to document and assist me in figuring out my place in all of this, as the wife from the musical Ragtime sings, “I will be journeying here, my love. As you go.” What happens when what you’ve been hoping for, for over two years, happens? Why isn’t it all sunshine, happiness and delight? Who the hell are you going to be now if you aren’t the person whose spouse needs a kidney anymore?

So why share all of this? Because I’ve always been and will always be a performer. I try to hide it but I guess I’m not a very good actor. As my mother says, “The people, everyone, they love the show business.” And it’s true for me too. I still long for applause. To hear an audience laugh or cry. To move people with my life’s work, it’s choreography, if you will. And therefore, here’s my latest work that I’m directing. My thoughts, my words, out in the universe for those that choose to read them, journey with me and hopefully laugh, cry and buy the t-shirt along the way. Thank you for reading. (Curtain slowly rises.)​

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