Dear beloved supporters,
It's been a long time since I've sent out an update – partly because my life became very busy but mostly because there was nothing terribly exciting to report. Nothing has changed except for a simple desire to reconnect with you all and let you know how I am doing. The short answer is that I am doing, how can I put this modestly?, freakin' awesome. Read on for the looooong answer....
I also wanted to answer the question that I get asked the most: How is life different with a new heart? I attempted to answer that question a couple of months post transplant when I was euphoric to be waking up in my bed on this side of heaven every morning. Everything in that answer was true – but oh my, if I could've told myself where my heart would take me in less than 18 months, I would've called myself a liar and stomped off.
Luckily for all involved I was able to find out organically. So, what has changed? On the surface, my life almost looks virtually the same as my pre-transplant years. I'm still singing, I'm still working, and, I'm still living a very full and busy life. But that's only the beginning.
The one thing I didn't count on when I got out of the hospital on that snowy December 2006 day was how long recovery was going to take. I wasn't stupid – I knew it would take months of rehab and sleep (lots and lots of sleep) to get righted but I had no idea it would take until May. MAY 2008.
The good thing about this time was that I didn't know I was still recovering. Every day I felt better but it was so subtle that I assumed I was done. I returned to my pre -transplant activities with renewed vigor. Even so, I searched for differences between then and now and to my mind, they seemed slight: I was happy to have the extra energy required to manage two choruses; dancing was easier and I did have a clearer head and quicker mind at work. I couldn't decide what was new and what could be chalked up to enthusiasm for getting back to my life. I sorta figured that my heart was giving me the extra energy I needed to live my pre-transplant life to the fullest.
There was one thing that was different and I knew it: my workouts. Working out? As in exercise? Sweet fancy moses, yes. I love working out. I could see constant and consistent improvement. But I still had worked out back in the day - well before transplant and even before my deterioration starting in 2004 I was doing yoga, light exercise and Pilate's. Apparently, the Miss Thing that I am had some pretty high standards for recovery that even I didn't know about.
And then came May 2008. That's right. May of this year. I'd settled into a nice routine - back to activities and having a blast. I decided to challenge myself and see what Thumper could really do. So I decided, with Chris and Lisa and my good friends (hi Kris, Steve, Deb and Brian!), to do the BolderBOULDER. The night before, I was freaking out. I''d never gone 10K in a workout and most certainly had never gone that far, on foot, at any point in my life. What was I thinking?
But the next day, in the rain and cool, we got our butts out there and did it. Less than two hours after starting (1:50 to be exact) I RAN over the finish line (watch the video here). I suddenly knew I was better. And it wasn't a drug plateau, or just extra energy or just enthusiasm. This was the real deal. I was SIGNIFICANTLY BETTER than I was before. Better than I have EVER BEEN.
I'd turned a corner. This was what it was like. I've never know what this would feel like. In heart failure, I was considered "well-compensated." I'd been living with it for so long and from such a young age, my body had grown up thinking it was normal. I was used to lower limitations and tiredness as a way of life. Even my most health and energetic times were nothing like this. As an example, when I was feeling some of the best ever - in my early 20s - I went to a concert at Red Rocks. My good friend (thanks Tammy!) had to CARRY me up the stairs because, despite as well-adjusted as I was, I just couldn't do it. Two weeks ago, I climbed 1200 vertical feet to "summit" at 12,500 feet on Mt.Bierstadt . We were turned away from the real summit because of weather. It made that Red Rocks day seem far far away.
There have been other changes. I think many people thought, myself included, that the greatest and most awesome change would've been a simple element: salt. All my adult life, I'd been wishing and praying for the ability to eat regular foods and not have to watch my sodium. When the nurse in my transplant orientation meeting back in the hospital said that I would eventually be able to eat anywhere from 2000 to 5000 milligrams of sodium per day (compared to less than 500mgs – seriously) I wondered how fast I could get a new heart into my body. It was all I could dream about.
Then there was something about the VAD experience that cut that dream short. I was separated from my beloved food. I wasn't interested in eating it, reading about it, watching TV about it or even thinking about it. I now know that I had to die to that idol. I had to find my comfort elsewhere. That separation profoundly affected me.
And not surprisingly, eating regular foods wasn't the first thing I wanted to do when I got out. The first thing I wanted to do was move. Exercise. Maybe it is a specific gift from my specific donor but the urge is undeniable. I'm even writing this after a work out that consisted of riding my bicycle from the office to the gym, another 30 minutes on the treadmill at a 10% incline and a round of weights on the circuit machines.
Don't get me wrong, though, I still love eating normal food. I love bread and pho and cheese and soups and…I could go on. But it isn't the same. I appreciate the convenience of being able to eat out without retribution or easily creating a nice healthy dinner without cooking everything from scratch. But I don't eat chips non stop or mainline pretzels. Oddly enough, I think about dessert the most. That is new for me – I had no restrictions on sweets pre-transplant. Now I crave them. Another gift from my donor I am guessing.
As if a second chance weren't enough, I now have the desire and the ability to DO STUFF. And do stuff I do. Along with the sweets craving, the exercise habits, I've developed an unlikely and profound addiction to video games. Oh, the mysteries of 18 year old males. I love this heart for its youth and strength. It makes me happy to give back by playing a little Wii. That's my excuse, people, and I am sticking to it.
I am awe-struck by how my heart has continued to change my life. I continue to pray for the family of my donor – that one day I may get to meet them and thank them in person. In the meantime, though, I start every day in gratitude for this gift and praise God for giving me this incredible second chance.
Lastly, I wanted to thank the over 100 friends, family and supporters that came to my party in January. What a blow out! I was so happy to celebrate that milestone with you and I am touched beyond belief that so many of you came. For those who weren't there, you were missed! My very talented father created a video for the event – if you were not there or wish to see it again, you can find it here.
I am truly blessed to have this life.
I will write again in time to share more of my life. Until then, I remain yours in love and gratitude,
Sarah T (the "T" stands for Transplant!) Hassell