Dec 19, 2017 Latest post:
Apr 25, 2019
Well, if you've found your way here, I'd be surprised if you don't know at least part of my story... I've never been shy about sharing it and if you've ever spent 20 minutes with me, odds are good I've told you quite a bit about me. I'd like to think it's part of my charm.
And yet there are things we hold back, aren't there? Even those of us who seem like a completely open book.
I was diagnosed with a disease called cardiomyopathy when I was 36 years old. Put very simply, cardiomyopathy is a chronic disease of the heart muscle and while there are different flavors of it, mine is called "non-compaction." It means that my heart didn't form correctly in utero and has likely never functioned properly-- but we had no idea that I had this birth defect.
Sure, I had all of the symptoms, I just didn't realize they were symptoms-- I thought that everyone had them. The elephant was already in the living room when I bought the house, so to speak, so I never questioned its existence, I just arranged my furniture around it. But all of that changed a bit with my diagnosis in 2002 and changed a LOT when we made the decision in 2003 to implant an internal defibrillator to prevent sudden cardiac death. After that, I started making real changes in my life: Over the years I walked away from a successful but highly stressful career in Sales, gave up on any chances to have my own children, divorced, remarried, moved to Colorado, divorced again, got a new defibrillator when the old one's battery gave out, met the love of my life and moved to the Pacific Northwest. I traveled, I hiked, I kayaked, I began to pursue a lifelong dream of performing in musical theater, and I laughed. A lot.
I'd like to think that, with a few very memorable exceptions (there was a pretty maudlin evening at La Strada in Houston with my bestie Vicki early on that we still laugh about-- OMG that poor waiter), I've handled this all with a certain graciousness and an outstanding sense of humor. I've stiff upper-lipped the HELL out of this for fifteen years and honestly, even though I think about my traitorous heart every single day of my life, I never really believed that it would get worse. If you've heard my story, you likely heard me end it with an almost flippant "and if things do get bad enough, I will just get a new heart."
But that was never real.
That was never going to happen.
I was going to continue singing and dancing my way across the stage of this thing we call life, and sure, I was never going to be a world class athlete, but I'd be okay. I mean, I'm too stubborn to die. Everyone knows this.
And then I died on August 26, 2017.
It makes Derek crazy when I say that, because in reality what happened is I had something called "Ventricular flutter" for a prolonged period of time, keeping oxygen from my brain for so long that I passed out. My defibrillator worked perfectly, shocking me back to life shortly after I hit the floor and before I knew it my bathroom was filled with handsome firemen, I was being whisked away to the hospital and after a one-night stay, everything returned to normal.
Except it didn't.
I went back to work two days later because of the aforementioned stiff upper lip. Yes, I worked remotely (without doing my 4-hour round trip commute), and certainly I was aware that my brain seemed to not be functioning well because I kept finding myself confused easily, highly forgetful, and so nonstop anxious that shortly before I went on disability, I would find myself lying face down on my bed shrieking in frustration, multiple times per day. So I went onto disability, took 6 weeks off and slowed way, WAY down.
Except for that whole singing and dancing thing because I was in the middle of rehearsals for "Priscilla, Queen of the Desert." But my cardiologist felt that the exercise would actually be really good for me, so I was given the go-ahead to stay with the show. Knowing what we know now, honestly, it's pretty remarkable that I did it. It was a combination of heavy reliance on my asthma puffer, nonstop backstage popping of nitroglycerin pills to keep the searing arm and chest pain at a minimum, and sheer force of will.
The show ended, I eventually felt like I could return to work, and agreed to return to the office one day per week. On December 5th I went into Seattle and worked a full day... and found myself almost unable to get out of bed for the next two days. We thought it was stress, we thought it was anxiety. We thought lots of things. We knew we had this giant test on the horizon that would answer our questions about my long-term future so we just kept muddling through.
Last week I started to gain weight and my lungs began to wheeze and crackle a little. After a lifetime spent obsessed with my weight and appearance, I weigh myself every day and usually understand when I fluctuate up because I can tie it to my eating behavior. But not this time... I've barely eaten for weeks. I have no appetite. I had been off my daily asthma meds for about a week and thought the wheezing was due to that. I was very aware that my mental confusion had continued and the anxiety it was creating for me while I tried to do my job was becoming unbearable.
On December 14, we headed into the Heart Failure Clinic at Virginia Mason in Seattle and had two tests done: A new echocardiogram (like the 1000th of my life) and a VO2 Max test to measure how effective my heart and lungs were working to distribute oxygen to my body. And on December 15 we got the results. They weren't what we had hoped to hear.
I'm in end-stage heart failure.
I've been referred to the University of Washington Hospital for a heart transplant.
And right now, that is almost all we know for sure. We've done some reading that suggests I'm well-positioned. I scored at the very top end of the range for transplant consideration, meaning I'm the "wellest" you can be and still get a new heart. I'm under 55, I'm not morbidly obese, and I have no other big health issues. This means that I have a strong likelihood of surviving the procedure-- and I could get as much as 10 - 25 more years.
And now you know as much as we know. We plan to use this site to provide updates on my condition and on our "journey" and honestly just writing the word "journey" skeeves me out, but I hope you'll come with me on this one.