Just a little summary of my recent trips to the Mayo Clinic, as well as my thoughts on the drug Amiodarone.
Friday, January 16, 2015
Tuesday, January 6, 2015
A Kid At Heart
I was a kid once.
Still am in a lot of ways.
A kid at heart. Yep that's me. I'm like the poster child for 'Kid At Heart'.
A kid at heart...born with a bad heart. But, whatever...want to hear me make fart noises with my armpit??
Yeah, I'm THAT guy.
Sure, I spent lots of time in the hospital...but I sure as heck did my share of playin' around and with my friends and arguing with my brother and sisters and avoiding girls at all cost (including the pinch on the cheek from Grandma) and chasing lightning bugs and climbing trees and spittin' watermelon seeds.
You know...kid stuff.
Loved growing up on that Iowa farm and I'd spend most evenings sitting on the fence post watching my dad do chores cause he didn't want me to get hurt, well nobody did..but I didn't care.
It was awesome.
And ah...the smell of freshly tilled soil in the spring. To this day there is nothin' better.
And there was just so much to explore...the trees and the creeks and the ponds and the cornfields.
And the animals...the cows and the chickens are what I mostly remember. But we had a short-legged duck that roamed around, and a dog or two, and a barn full of cats.
Farm cats and barns go together like peas and carrots, as do dogs and ponds.
And...and...and...there was just so much more...but it was just awesome. Every single bit of it...
And sure I spent a pretty considerable amount of my time in the hospital when I was young. Not as much as some sick kids...but still, enough to remember going there...a lot.
Enough so that my VERY FIRST memory is of being pulled up and down the hospital corridor in a little red wagon.
I can still see the nurse and her feathered, 70's era, Farrah Fawcett hair and I can hear the squeak of the rubber tires on that white, slippery, sanitized linoleum floor.
It feels like...it was yesterday.
But that's it. I don't remember much else. Nothing really.
My first big surgery was at 6 months old, another when I was 2.
I was probably 3 or 4 in that wagon ride.
No memories of the doctors, none of the nurses. Not the operating room, or waiting room or the parking ramp or the hospital food. Not the medicine, or the IV's or the blood draws.
None of it..from that whole time, at least as it pertains to my heart, and hospitals and the like, up until I was maybe 7 or 8.
I think I had a catheterization around that time where I had to lie still for 6 hours in recovery. I vaguely remember that...I think I remember the 'all the popsicles you can eat' part of it more than anything though.
And ya know, maybe that's a good thing.
Nothing wrong with fond childhood memories of the farm and sunshine and laughter. I'll take that over memories of hospitals any day.
And besides there are plenty of others that did, and still do, the remembering for me.
The surgeons remembered...
In my very early teens I enjoyed talking with some of the very doctors that were there and operated on me...and nurses who would come by just to say 'hi' if they could when I went to the hospital for my check ups every 6 months or so.
I grew up in front of their eyes. And with their gleaming approval.
I think I was their pride and joy in a way. I was, and still am, the oldest surviving person to get the Mustard procedure at my hospital. Those doctors knew that they had seen way too many babies born with that same heart defect die before having a chance to even make it off the operating table, let alone their first birthday, or their 10th, or 15th.
Seeing me, and seeing how well I was getting along, and to hear me laugh and talk with me and know I was doing well in school, and just a happy 'normal' kid..I think it meant the world to them.
There is a big part of me that wishes I would have known, or better yet, wishes I would have appreciated what rock stars those early pioneering surgeons were in not only my life..but dozens and hundreds of other kids just like me. I wish I could shake their hand and just say...
Thanks. Ya did good.
They held my heart, and my life, literally in their hands. My tiny, strawberry sized, broken TGA heart...and made it work well enough to get me to where I am today. A happy, well adjusted, well liked, accomplished, funny, smart, decent, kind caring person who more than likely wouldn't have been any of those things without their skilled hands and expertise playing a huge role in my earliest days.
And sure, I am on the transplant list now, but that's not their fault in any way. They did the absolute best they could do at the time. They were cutting edge...and I was on the cutting edge.
I'm immensely proud...and humbled, by that.
That's just frickin mind boggling to me...even today. I think I will ALWAYS have an ton of just flat out admiration and respect and love for those surgeons. Wow.
And there were others too, who did the remembering for me.
My mom in particular talks often of how much, and how often, they (let's be honest, it was almost 100% her) had to work to keep me from crying too much as a little, little baby, cause I would turn blue, my lips and fingertips especially. And my little toes. My little blue toes. I heard that a lot over the years.
I guess I could have died or got brain damage or something before they could get me to the hospital. Especially before my operation at 6 months that kept the hole open between the chambers of my heart, so at least some blood could get oxygen, and right up until I was 2 1/2 and had the big operation.
Man, that had to have been pretty scary for mom. A hard working farm wife and mother of 4 other healthy kids with nothing more than a high school education and hearty 'good luck' at home from the doctors.
"You call us if he gets too blue...and then come to the hospital right away"
OK...time out. Rock star status re-assessment here. Mom was THE rock star...but the surgeons were certainly in the band.
One of her favorite stories to tell is how one night I simply would NOT stop crying, and she finally put me in the saddle bag of my dads old Harley motorcycle and rocked it back and forth and THAT got me to stop crying.
My mom and my older sisters would spend hours rubbing my back, just soothing me and talking to me a in soft voice to keep me calm.
To this day I love having my back rubbed, it almost instantly puts me to sleep. And I love whispers. I love quiet...and low light...and calm. Shhhhhh. Just listen....
Not hard to figure out why I'm that way I guess...
And I'm sure that wagon ride was part fun, and part keeping me from crying.
The nurses certainly were rock stars in their own right. Maybe they were the lead singers...
But all that I know from that time is what these remarkably caring people have told me over the years...and the few grainy black and white photos of me at home, and a few doctors notes here and there.
That's it.
It wasn't until I was about 10 I reckin I didn't have a clue what my defect was called, or what operations I had. Didn't really care...cause I was too busy being a kid.
But I know now.
dextro-Transposition of Great Arteries
Atrial Septal Defect
Blalock Hanlon Atrial Septectomy at 6 months
Mustard Procedure repair at 2 1/2 years.
Reporting for duty...Sir!
Now I see all these pictures on Facebook of little heart warriors like I once was...just as they come out of the surgery with their tubes and wires running every which way and I know that they will have much more of visual record of their young lives to be sure...and their parents now have the luxury of an entire world of knowledge and wisdom and expertise at their finger tips.
My mom had a 7 page pamphlet...
Operations like mine, and now more advanced versions of that Mustard repair, are now routine, and the survival rate for 5, 10, 20 years is excellent.
And perhaps most importantly, increasingly more and more 'old timers' like myself are around, and many of us love, love, LOVE sharing our own stories of those early days...in hopes of making it just a little bit less scary to raise a child with a heart defect...or to be a child with a heart defect, for that matter.
I hope too, that these younger ones coming along are able to one day say that they, like me, remember the happier times of their childhood so much more so than their time in the hospital.
Stay a kid at heart as long as you can! That's my #1 best piece of advice...for not just heart kids...but for everyone!
Their moms and dads and friends and families and doctors and nurses will do the remembering...
Trust me on that one.
Now about those fart noises....
Still am in a lot of ways.
 |
| The Kindergarten Me...@1975 |
A kid at heart. Yep that's me. I'm like the poster child for 'Kid At Heart'.
A kid at heart...born with a bad heart. But, whatever...want to hear me make fart noises with my armpit??
Yeah, I'm THAT guy.
Sure, I spent lots of time in the hospital...but I sure as heck did my share of playin' around and with my friends and arguing with my brother and sisters and avoiding girls at all cost (including the pinch on the cheek from Grandma) and chasing lightning bugs and climbing trees and spittin' watermelon seeds.
You know...kid stuff.
Loved growing up on that Iowa farm and I'd spend most evenings sitting on the fence post watching my dad do chores cause he didn't want me to get hurt, well nobody did..but I didn't care.
It was awesome.
And ah...the smell of freshly tilled soil in the spring. To this day there is nothin' better.
And there was just so much to explore...the trees and the creeks and the ponds and the cornfields.
And the animals...the cows and the chickens are what I mostly remember. But we had a short-legged duck that roamed around, and a dog or two, and a barn full of cats.
Farm cats and barns go together like peas and carrots, as do dogs and ponds.
And...and...and...there was just so much more...but it was just awesome. Every single bit of it...
And sure I spent a pretty considerable amount of my time in the hospital when I was young. Not as much as some sick kids...but still, enough to remember going there...a lot.
Enough so that my VERY FIRST memory is of being pulled up and down the hospital corridor in a little red wagon.
I can still see the nurse and her feathered, 70's era, Farrah Fawcett hair and I can hear the squeak of the rubber tires on that white, slippery, sanitized linoleum floor.
It feels like...it was yesterday.
But that's it. I don't remember much else. Nothing really.
My first big surgery was at 6 months old, another when I was 2.
I was probably 3 or 4 in that wagon ride.
No memories of the doctors, none of the nurses. Not the operating room, or waiting room or the parking ramp or the hospital food. Not the medicine, or the IV's or the blood draws.
None of it..from that whole time, at least as it pertains to my heart, and hospitals and the like, up until I was maybe 7 or 8.
I think I had a catheterization around that time where I had to lie still for 6 hours in recovery. I vaguely remember that...I think I remember the 'all the popsicles you can eat' part of it more than anything though.
And ya know, maybe that's a good thing.
Nothing wrong with fond childhood memories of the farm and sunshine and laughter. I'll take that over memories of hospitals any day.
And besides there are plenty of others that did, and still do, the remembering for me.
The surgeons remembered...
In my very early teens I enjoyed talking with some of the very doctors that were there and operated on me...and nurses who would come by just to say 'hi' if they could when I went to the hospital for my check ups every 6 months or so.
I grew up in front of their eyes. And with their gleaming approval.
I think I was their pride and joy in a way. I was, and still am, the oldest surviving person to get the Mustard procedure at my hospital. Those doctors knew that they had seen way too many babies born with that same heart defect die before having a chance to even make it off the operating table, let alone their first birthday, or their 10th, or 15th.
Seeing me, and seeing how well I was getting along, and to hear me laugh and talk with me and know I was doing well in school, and just a happy 'normal' kid..I think it meant the world to them.
There is a big part of me that wishes I would have known, or better yet, wishes I would have appreciated what rock stars those early pioneering surgeons were in not only my life..but dozens and hundreds of other kids just like me. I wish I could shake their hand and just say...
Thanks. Ya did good.
They held my heart, and my life, literally in their hands. My tiny, strawberry sized, broken TGA heart...and made it work well enough to get me to where I am today. A happy, well adjusted, well liked, accomplished, funny, smart, decent, kind caring person who more than likely wouldn't have been any of those things without their skilled hands and expertise playing a huge role in my earliest days.
And sure, I am on the transplant list now, but that's not their fault in any way. They did the absolute best they could do at the time. They were cutting edge...and I was on the cutting edge.
I'm immensely proud...and humbled, by that.
That's just frickin mind boggling to me...even today. I think I will ALWAYS have an ton of just flat out admiration and respect and love for those surgeons. Wow.
And there were others too, who did the remembering for me.
My mom in particular talks often of how much, and how often, they (let's be honest, it was almost 100% her) had to work to keep me from crying too much as a little, little baby, cause I would turn blue, my lips and fingertips especially. And my little toes. My little blue toes. I heard that a lot over the years.
I guess I could have died or got brain damage or something before they could get me to the hospital. Especially before my operation at 6 months that kept the hole open between the chambers of my heart, so at least some blood could get oxygen, and right up until I was 2 1/2 and had the big operation.
Man, that had to have been pretty scary for mom. A hard working farm wife and mother of 4 other healthy kids with nothing more than a high school education and hearty 'good luck' at home from the doctors.
"You call us if he gets too blue...and then come to the hospital right away"
OK...time out. Rock star status re-assessment here. Mom was THE rock star...but the surgeons were certainly in the band.
One of her favorite stories to tell is how one night I simply would NOT stop crying, and she finally put me in the saddle bag of my dads old Harley motorcycle and rocked it back and forth and THAT got me to stop crying.
My mom and my older sisters would spend hours rubbing my back, just soothing me and talking to me a in soft voice to keep me calm.
To this day I love having my back rubbed, it almost instantly puts me to sleep. And I love whispers. I love quiet...and low light...and calm. Shhhhhh. Just listen....
Not hard to figure out why I'm that way I guess...
And I'm sure that wagon ride was part fun, and part keeping me from crying.
The nurses certainly were rock stars in their own right. Maybe they were the lead singers...
But all that I know from that time is what these remarkably caring people have told me over the years...and the few grainy black and white photos of me at home, and a few doctors notes here and there.
That's it.
It wasn't until I was about 10 I reckin I didn't have a clue what my defect was called, or what operations I had. Didn't really care...cause I was too busy being a kid.
But I know now.
dextro-Transposition of Great Arteries
Atrial Septal Defect
Blalock Hanlon Atrial Septectomy at 6 months
Mustard Procedure repair at 2 1/2 years.
Reporting for duty...Sir!
Now I see all these pictures on Facebook of little heart warriors like I once was...just as they come out of the surgery with their tubes and wires running every which way and I know that they will have much more of visual record of their young lives to be sure...and their parents now have the luxury of an entire world of knowledge and wisdom and expertise at their finger tips.
My mom had a 7 page pamphlet...
Operations like mine, and now more advanced versions of that Mustard repair, are now routine, and the survival rate for 5, 10, 20 years is excellent.
And perhaps most importantly, increasingly more and more 'old timers' like myself are around, and many of us love, love, LOVE sharing our own stories of those early days...in hopes of making it just a little bit less scary to raise a child with a heart defect...or to be a child with a heart defect, for that matter.
I hope too, that these younger ones coming along are able to one day say that they, like me, remember the happier times of their childhood so much more so than their time in the hospital.
Stay a kid at heart as long as you can! That's my #1 best piece of advice...for not just heart kids...but for everyone!
Their moms and dads and friends and families and doctors and nurses will do the remembering...
Trust me on that one.
Now about those fart noises....
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