I had a birthday a couple days ago.
45. Forty-Five!!
If I live to be 90...I'm officially middle aged.
Then again I plan on making 90 the new 50. So it's all good.
But it sure is fun to kind of let than number sink in a bit.
Foooooorty Fiiiive.
A simply amazing number...for the hundreds and thousands of folks very much like me who are really, truly living with this crazy, unpredictable, roller-coaster adventure called congenital heart disease, and especially those living with my specific defect, Transposition of the Great Arteries...well, it's just extra, extra sweet.
I know that among my fellow TGAers along with our parents and families, we are not alone in hearing...
He might not make it through the surgery.
He might not live to see his 3rd birthday. Or his 5th. Teenage years? Yeah, not so sure.
Don't get your hopes up.
He will probably have suffered brain damage.
He won't be like the other kids.
Don't expect much from him...ever.
My parents heard those 'warnings' and much worse...especially in those early years. I'll give those doctors the benefit of the doubt, and acknowledge that sugar coating and bedside manner most likely took a back seat to the unbelievably daunting task these pioneering surgeons were about to undertake. Born maybe 5 years earlier, I would have most certainly died...within just a few months of birth. And indeed there were no guarantees given. None.
This was cutting edge medicine. Babies just like me were still dying. But it was my only hope.
Still to this day I am in complete, absolute AWE at what these pioneering surgeons were able to accomplish. And that the surgery they performed on me, now known as Mustard procedure, went on to save hundreds if not thousands of babies like me, it's just an amazing feeling.
Even more amazing when you consider the size of my heart at the time...about the size of a
So anyway, throw in a couple more cardiac surgeries and a couple dozen catheterizations and three different pacemakers and a defibrillator, and about 5 feet of scar tissue on my chest and thousands of stitches and staples IN my chest...I'd say I've earned the right to have the happiest of happy Birthdays!
Not a day goes by that I am not thankful what those surgeons did for me. And sooo much more so on my birthdays.
I gotta admit, I got choked up a bit this time around when I thought about how far I'd come, and how demanding this past year in particular, has been.
As I have said, all things considered, I have had a pretty darn good run...especially in light of my heart.
But doctors around the world are starting to note a significant decline in the heart function of folks like me, with TGA as we get into our 40's. The surgical repairs, as groundbreaking and life saving as they were, were never intended as a cure, and once again, I find myself on the cutting egde of what is possible. Will he make it to 50? 60? With my heart functioning at about a third of a normal heart, and declining...that doesn't seem likely...without a transplant.
And that's were I am today. Waiting for a new heart. And a new start.
So rewind 10 months to February 12th of this year and Tammy and I were ushered into my cardiologist's office and said that it was time to start thinking about transplant.
I didn't know getting on the list was such a big deal...and that's what most of this past year was about.
I had to pass what seemed like 8,000 tests, have another major surgery...not really related to my heart...get a new pacemaker, overcome a blood disease, and...keep my sanity! Oh, and about 20 nose bleeds...can't forget those!
Let me explain.
First the surgery. I came down with diverticulitis of all things around mid January of '13 Diverticulitis results in excruciatingly painful pockets that form in the lower portion of the colon, become infected, and can eventually kill the surrounding colon walls...and in some cases...the patients.
After a 4 am trip to the hospital, and a 5 day stay with lots of powerful IV antibiotics, as well as another ER visit 9 months later and a 4 day hospital stay with still more antibiotic....the transplant doctors said that that part of my colon had to come out. Cause if that diverticulitis flared up again, when I was on the anti rejection drugs...it would not be a good thing.
So that was in April of this year. now I have 30.5cm less colon. Woo Hoo. But zero chance of the diverticulitis coming back...and that's what's important.
But BEFORE that, in January of this year. I got to have massive nosebleeds. The likes of which I have never seen, or even heard of. I had 21 nosebleeds in about 18 days. Four of which resulted in more trips to the ER, and even a couple ambulance rides.
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| Tammy holding my hand during one of my hospital stays. Awe. |
And Finally, I had to get rid of Hepatitis C..which is a blood disease that effects the liver if not treated. Heck, I didn't even know I had it till I tried to give blood in my late 20's and they said I contracted it during a blood transfusion in one of my childhood operations. Never had a complication from it and barely had any scarring, but again, I had to get rid of it before I could be placed on the list.
Luckily a new drug came on the market just a few months earlier that has had tremendously positive results. Instead of painful, and in large part ineffective treatments, I was CURED of the disease in 84 days. With the aforementioned miracle drug. Easy peasy.
So dozens of trips to the hospital for blood tests, and exercise tests, and mental tests, and, and, and...sooo many tests...and here were are.
On the waiting list for a brand new to me heart. I can honestly say, that it has ALL been worth it...what an adventure.
But getting a new heart, at least for me, is not in any way about atoning for the past...instead it's about laying the ground work for what I know will be the best of my life...the rest of my life.
Chock full of even more challenges to be sure, but ones I am excited to take on, and and overcome. As I've done many times before.
And I do it all willingly, eagerly, proudly. For me and my loved ones sure, but also for the hundreds and thousands of TGAers who many indeed be in my shoes someday.
TGAers that are just as brave and courageous and inspiring in their own right.
To you, all of you, and especially my heart friends, thank you for ridin' along on this journey of a life time.
You're more awesome than you have ever realized, in more ways than you can ever imagine.
So remember, 45 is half of 90. I know I can make it...maybe even more, oh so much more...
With a new heart. And a new start.
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