How I Got Here...At Least Part Of The Story

That exact quote is on our fridge right now.  Has been for months, well before I was, for sure, going to be on the list.  I look at it every day.  A gentle reminder that yes, this IS worth doing.

You know I will be honest, and admit I have known the need for a transplant...someday...was a probability, perhaps even an inevitability.  But it hasn't really affected me much over the years, and while, again, it has been in the back of my mind for the better part of my adult life, it's sooo weird to think that 'someday' is here. Someday is right now.  

As I look back over the past year, my whole life really, I am in genuine awe of just how much I have been challenged with, endured, and overcome the span of those 40 some years, and with amazing success, if I do say so myself. And I don't say that to brag, but holy crap.  If literally hundreds of events didn't unfold just right, at just the right time, and close to perfectly...I wouldn't have made it even half this far.

Let me explain,  and this might get a little long winded, but at least I'll stick to JUST my heart this time.  I'll save my brain, my blood, my liver, and my colon for another post.

So I was born with a rather complex heart defect called Transposition of the Great Arteries.  It was almost a 100% guaranteed death sentence for babies like me, the cyanotic, or so called 'blue babies', born even just a few years prior to 1969, when I arrived on the scene. Sent home as a seemingly happy and healthy 7 lb baby boy, my parents quickly discovered that, even at 2 or 3 weeks old, my lips, fingers, toes, and even around my eyes, would turn blue..almost a purple plum-like hue.  And even though they had no idea what Transposition of the Great Arteries was at the time, they knew something wasn't quite right.

You see, in normal hearts, blood that returns to the body goes through the right side of the heart and pulmonary artery to the lungs to get oxygen.  The blood then comes back to the left side of the heart and travels out the aorta to the body, oxygenating the rest of the vital organs and the head, torso and extremities.

In TGA, the blood goes to the lungs, picks up oxygen, returns to the heart, and then flows right back into the lungs without ever going to the body.  Blood from the body returns to the heart and goes back to the body without ever picking up oxygen from the lungs.

The only thing that saved me (as well as the other 'blue babies') during those first few weeks and months was a hole in the heart, within the chamber walls, that allowed at least some oxygenated blood to mix and get sent out to the body.  

So as I mentioned the prognosis for babies like me was not good prior to about 1965.  But new surgical techniques were just beginning to be attempted and perfected throughout the world and remarkably, at a hospital near me, in the middle of nowhere Iowa, at The University of Iowa Hospitals and Clinics.  These techniques were still incredibly risky, but as the doctors told my parents, it's the only hope he's got.  20% chance of survival to 3 years, even that might be optimistic, and the reality was, I might not even make it off the operating table.

But my parents and the doctors thought it was worth the risk, given the alternative of almost certain death and I was given a chance.  Over the next two years, surgeons would skillfully craft my heart, then the size of a strawberry, and the surrounding vessels into somewhat of a makeshift, redesigned, modern marvel of medical advancement and surgical prowess.   My tiny heart and body responded well, to say the least.  And now 44 years and 10 months, I am one of the longest living survivors of of these pioneering techniques.

The first of those pioneering open heart surgeries was performed in 1970 when I was 6 months old, called the Blalock-Hanlon procedure.  Subsequently, the Mustard procedure, performed in 1972, gave me, and now thousands of kids like me, a real honest to goodness chance at a relatively normal life.  

And I absolutely enjoyed a relatively normal life.  I did well in elementary school and high school, especially academically, and was able to keep up with my friends with almost no limitations.  I was never a runner, and couldn't play contact sports, but I found other avenues, like golf and cycling, that allowed me to not just survive those years, but to thrive as well.  I was actually 'in shape' in my late 20's and 30's.  Always a bit thin, but fit, and that was OK with me and with the doctors.

I did have a bit of a hiccup though in my mid 20's and started to slow down quite considerably due to poor heart rhythm, a side effect of all the surgeries and the hundreds of stitches in and around my heart.  So I was implanted with a cardiac pacemaker in 1995 and quickly picked up steam once again.  I was able to finish college, graduate, find meaningful employment, have friends, find love, have a son, have a lot of fun and laughs, and become a real contributor to the vitality of the community.   95% of the people in my life never even knew I was born with a heart defect, let alone had all those surgeries and a pacemaker.   And the ones who did know, didn't seem to think it defined me or limited me much at all.  

Well fast forward another 20 years to last summer, when I was 43, and things really started to change for me.  I love, love, LOVE playing golf and could always make it around 18 holes no problem.  But during a round in September, I remember just hitting a wall, at about the 12th hole.  There was just nothing left in the tank. Nothing. I thought maybe I was just coming down with a late summer cold or something, and thought I would be back up an at em in no time. 

But at my next scheduled heart checkup the docs noticed my heart function had begun to decline somewhat, and they wanted to start monitoring me a bit more closely.  And rather suddenly, I was starting to have a lot of trouble making it though the day.  I would become so physically exhausted that the only thing I could do was sleep. I was fortunate that I was able to afford to take some time off work, hoping to build up my stamina and strength once again, and come back good as new.  But unfortunately that has not happened.

After some more tests,  I was told it was time for me to think about a heart transplant.  That was February 12, 2014.  10:17 am.  

Over the next several months, right up to last Friday when I was placed on the list, my heart, body, and mind were put though the proverbial ringer.  So much testing goes into qualifying a person for the list, it's just amazing....and something I never really even considered.  Remember I mentioned in an early post, that human donor organs are an incredibly valuable and coveted resource, and the goal for the recipient is to be as healthy as possible going into a transplant.  Do in large part because the transplant operation itself is so traumatic to the body, and the anti-rejection drugs are so powerful, the body really doesn't have the ability to put on a good fight on more than one or two fronts.    And some folks, sadly, are TOO sick to actually get an organ, because their body would simply not be able to withstand the trauma.

But luckily that isn't me, yet.  And hopefully I never get too sick to still be a viable candidate, but it is a slight possibility.  The great news is I'm relatively healthy all things considered, the rest of my body is good to go.   I got a brand new updated pacemaker/defibrillator, implanted just 3 weeks ago as a preventative measure to keep me alive in case my heart goes into a crazy rhythm and until a donor heart becomes available.   And while I increasingly have episodes where I get extremely tired, especially upon exertion of any kind, I am still able to be mobile, take care of my self, eat well, and bottom line, I am currently a really good candidate for a new heart.  Or at least as good as I can be.  And for that I am proud and humbled at the same time  

For all of this heart stuff really, I have always been quick with a smile and a kind word, for the doctors and for those who care for me and about me.  Modern medicine gave me a life worth living, and I feel like I owe it to all the astoundingly brave and talented doctors, nurses and support staff, as well as all those "blue" babies who came before me, and to those who still today are born with this same defect, to never, ever give up. Period.

Because it IS worth it, even it is going to be the hardest thing I've ever done.   I always knew I was somewhat special, and maybe walked around with sort of an internal swagger and confidence.  Maybe not so much because of the defect and the surgeries, but because of my infectious, contagious optimism and positive outlook on my health, and on life, in general.

I'm so excited to be here in this position. Right here, right now.  I know that the future is bright for me.  I have world class doctors at a world class medical facility just waiting for my donor heart to arrive.  I have family and friends from all over the world wishing me the very best, and I am loved beyond anything I could ever dream of.   That all makes it worth it too.

We'll get this little heart transplant thingy out of the way, and I'll be back on the back 9 in no time.

Have a GREAT day everyone!