Obelisco Buenos AiresObelisco Buenos Aires, Avenidas 9 de Julio y Corrientes / by Matias Wong

I was going to write a book about getting an organ transplant, and the road to it. But every time I’d write about it, I was plunged right back into the world of illness, fatigue, hospital admissions, time spent on a gurney in an ER, IV sticks from hell, countless endoscopic procedures.

So guess what? I’m not writing it. Except for a listicle here and there of tips I learned so I could deal with all that business to make it an eensy-weensy bit better for you – patient, friend of a patient, family caregiver. I just want to pass that along to others who are going through something like that, or who loves someone who is. This isn’t about bragging. It’s about helping YOU make a better journey through medical hell.

I’m also going to tell you I was both a great patient, and the worst patient on the planet. Because there was nothing “patient” about me. I wanted The Thing to be over. And I wanted desperately to get my life back.

Instead it went on year after year. Eleven years, almost to the day, weirdly enough – from May 2005 to May 22, 2016, day of my liver transplant.

What I’m focusing on is all the absolutely spine-tinglingly ingenious, glorious and fun stuff that I did instead. Here’s my first list (oh yeah, there’s definitely more):

  1. I went Glenwood Springs, Colorado by train in January 2007. Stayed in a nice hotel just steps away from the soothing, delicious natural hot springs pool. I spent hours, morning to nearly closing time in that warm and sometimes hot water.
  2. On the way back on the train to Denver, I met a guy in the most hilarious way ever. We became boyfriend-girlfriend for about three years, and we are still friends. I’d never been able to pull that off that extension to friendship, and was 60 years old when I met him! A miracle.
  3. I spent a month in Buenos Aires, mi ciudad de corazon, in February 2007, ostensibly to write my memoir-thesis for my master’s degree. But instead I developed three regular café deployments – breakfast, lunch and dinner where the waitstaff knew me and greeted me by name. I also went to a tango club (and danced with some amazing tangueros) one night with my girlfriend who is from BA. Very friendly, great food city. I walked a lot, tutored online for students back in Denver, and had a great time. It’s hard to have a bad time there. Oh, my Spanish got lots better on that trip, too (second trip).
  4. In 2010 I ended up in Florida with family (ugh) since I’d reached the point where I couldn’t even tutor online anymore. And lost my condo (sold, but lost a little money) in my ideal neighborhood, Washington Park.
  5. But I kept journaling daily and one morning a story – complete with characters, their full names, backstories, settings – popped up and sort of just took over. I’d never written fiction. It turned out to be a romance novel, not just a story, and I’d never read one of those before. I finished that first draft and then wrote another romance novel.
  6. I’m still working on the rewrites (and that is what I’d rather be working on – romantic conflicts, not hospital conflicts!). Those love scenes are getting really honed and hot now.
  7. I wrote 31 poems on postcards and mailed them to strangers on a list who were doing the same thing every August for eight years. In all, I wrote nearly 250 poems in those eight years. I copied those poems, so those are mine now in my computer. When I look back at them, I’m pleased that some of them are pretty good.
  8. I eventually multi-listed at Cleveland Clinic. “Multi-listing” means (if you’re not in the biz) a patient can be on an organ waitlist at one transplant center, then do some comparisons in statistics (readily available) and request to be evaluated and placed on another waitlist. I chose Cleveland Clinic, the No. 2 hospital in the nation but No. 1 in gastrointestinal diseases, which is what I had. I went through an extensive evaluation beginning January 2016, was accepted and waitlisted on April 6. At Cleveland Clinic I found the most awesome group of medical people/professionals in this country, maybe the world (they have clinics all over the world). They made my whole life better, hopeful and supported. At long last!
  9. And I received The Call to come to Cleveland on May 21, 2016, 45 days after being listed and less than six months after my first phone call to their Liver Transplant Office. They sent their private jet to pick up my best friend and whisked us off to Cleveland for surgery. Classy. (And a hottie pilot as a little extra!)
  10. Oh, last but not least. I was in graduate school when I got sick, end of the first year. I completed that humanities degree on time, May 2007, with all As. I would say “with honors” but I think someone forgot to do that part and I didn’t get that memo. But I gave myself lots of honor and kudos for having done that.

 

The End…for now. Next up will be tips for how you can improve your game.

Here’s how it felt to write this. I’m glad for the nakedness.

“The moment that you feel, just possibly, you’re walking down the street naked… Exposing too much of your heart and your mind and what exists on the inside. Showing too much of yourself — that’s the moment you may be starting to get it right.”
—Neil Gaiman