On the List at Tampa General

What we’ve been working towards since I landed in Florida happened on Thursday.  I was formally presented to the transplant board at Tampa General and unanimously accepted! Yay!  It took longer than I would have hoped, but we ran into the holidays and the board meets on Thursdays, precluding me being considered until now.  It felt a little anticlimactic because I’d been quizzing every nurse and coordinator regarding my status and the word was I had nothing to worry about… I did anyway because I can’t help myself.  Still, two emotions surfaced with the fantastic news. 

Faithful FL Companion - Rico

One was relief.  We’d rolled the dice that TGH was my best option and we had to wait a long time to have that confirmed.  Another big reason was the anxiousness of the possibility that I’d get a call from Minneapolis Heart Institute/Abbott alerting me that they had a heart match for me 1600 miles away.  The week before Christmas, I got that call.  I was sitting in the condo on a Saturday evening when a transplant coordinator called to confirm that I was still in Florida.  I knew immediately what was going on.  I don’t think I’m over-exaggerating when I say this was possibly the lowest moment I’d had since this ordeal started last January.  Up until this point, I was simply responding to the cards I’d been dealt.  I hadn’t caused my heart failure.  As sad as I was to be facing a long battle for my survival and without really knowing what the outcome could be, I still was pretty upbeat and hopeful.  I was also grateful that I had a reasonable chance of surviving and perhaps even regaining some aspects of my life following transplant that I’d had to give up, namely running. But from my perspective, I wasn’t to blame for my situation.  Sitting in the dark with the fresh news that I had missed out on a heart back home hit me like a train.  I was responsible for this event.  I’d chosen to move to Florida.  I’d made the decision to leave behind Minneapolis Heart… and I’d chosen wrong.  It was my fault.  I brought this on myself. Then I called Jami and dumped all my sadness and anger and self-loathing on her.  She was headed with the girls to a Christmas concert.  The girls overheard what was going on.  Now I heard them crying over the phone.  I still tear up thinking about the reality of the situation, the isolation, and the aloneness.  And now the burden of having unloaded that on the three people that I care most about.  I did think for a brief moment that everyone would be a lot better off if I wasn’t there bringing pain and sadness to their lives.  Yes, it was a dark moment. 

So, you can understand the relief I experienced on Thursday with the news that I am now officially on the list at TGH and would not receive any more soul-crippling calls from Minneapolis Heart.  The footnote is that I received a follow up call from the transplant coordinator at MH. I wouldn’t not have received the heart.  I was again third on the list and the first candidate was transplanted.  All that anguish for nothing.  

And the other emotion… gratefulness.  There are so many things I’m thankful for and all those came rushing to the surface with this great news.  I was on the list.  I’m a great candidate with an excellent chance to thrive after transplant. In fact, a nurse shared with me that in presenting me to the board my cardiologist described me as the “perfect candidate”.  I’ve never been perfect at anything! So I’ve got that going for me!  I had the most amazing 2-week visit from my girls.  We had perfect weather and meaningful family time that I cherish.  I’m grateful for our little spot in Punta Gorda with a view of the water that I get to enjoy everyday.  I’m thankful for lots of family, friends and co-workers that call, email and visit, supporting me and praying for me.  Would it be a stretch to say I’m lucky?  I guess it’s a bit ironic, but that’s what I feel.  

One last Job moment (the biblical Job), and then I’ll sign off.  I found out that with all the testing they’ve done they discovered I have…drum roll… Celiac Disease.  So now I get to add a gluten free diet to everything else I need to manage.  It’s almost comical.  Almost.  

My prayer is that I won’t have enough events to merit another post before I get the call that a heart is waiting.  Until then I’ll be grateful to enjoy each day as it comes.

Mark