The Mayo Clinic and Amiodarone

Hey Folks.

Just a little summary of my recent trips to the Mayo Clinic, as well as my thoughts on the drug Amiodarone.  

A Kid At Heart

I was a kid once.

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....

Heart Transplants In 2025...Or Sooner!

Ok folks...this is JAWDROPPING stuff.  These two surgeons may be on to the next big thing in heart failure surgical options.  

Heart surgeons  are AWESOME.

CAUTION:  It does show some actual footage of surgery, so if you are squeamish, you might want to avoid those parts.

2014...A Look Back

So just a couple days left in 2014.

I guess I'll spend a little time here and look back at where I've been.

Something I rarely do...always try to keep moving forward...even if its just baby steps.

But it might be worth it to take a few minutes to reflect on all that I have overcome this year...to even make it on this transplant list.

And I thought I would change it up a bit by making a little video...I think I will do more of this in 2015.

And you'll notice I made a few changes to the look of the blog too...always a work in progress.

And finally I'm adding a YouTube channel to host these videos.  It's kinda fun to learn a few new tricks here and there.

Anyway, thanks for watching, and have a very safe and very Happy New Year!

Holidays

Well Christmas 2014 came and went without the call for a new heart.

Santa did bring couple nifty pull overs and my iconic plaid shirts.  And new ear pads for my headphones...they're like new now.

And I got to see lots of smiles on Tammy's face.  And on my son as well.  And that was awesome.  My mom even moved out of the stone age and got a decent flat screen TV.

So it was a good day.  No heart...but still a good day.

And I'm definitely ok with that.  Just as I was when Thanksgiving 2014 came and went a month or so ago. Same with my birthday 2014.

I've done a pretty good job I think of just taking one day at a time, and trying very, very hard not to count the days.

There are other things to celebrate.

A friend of mine got her new heart first part of December, and got out on Christmas day.  That is awesome for her.

Another friend got an LVAD put in a few days before Christmas, she's still in the hospital,   Plus she got placed on this list just a couple weeks ago.  But her LVAD operation went well.

Found out my nephew's father-in-law is waiting on this list too.

I root for each of them, and all the others, who are waiting, like me.  And doubly so for the handful I know personally that have gotten their new heart.  Seeing how great they feel now does a lot to keep me going.

I know it's just a matter of time...

As I have gotten to know others stories I know for some, the wait has been quite long.  800 and some days for one lady,  500 for another guy.  Some more...some less.  It is what it is.

So I think I at 120 days or there bouts.  I'm just getting warmed up.   Heck pregnancy is 9 months long...

Just happy my heart, body, and mind are still strong enough to keep me here at home, and not in the hospital as I wait.

I wouldn't mind getting a New Year's Day heart though...

Have a great day everyone!

I'm Ready for My New Heart!

I am as sure as I've ever been, right now here today, at what, 4:28 in the afternoon on a cold yucky day in the middle of December 2014, that I am ready for a new heart.

This waiting, now some 110 days or so, is getting kind of old.  And while fortunately I am not in any real pain, I am pretty limited in what I can do. At least physically...and that's the frustrating part.

1 or 2 flights of stairs, or the equivalent, and I'm done.  Nothing left in the tank.  And it's getting worse...not better.  That stinks.  But it is what it is, and I can live with it.

I don't really have much say in the matter.

But a key word there was...'live',  I like that word.  : )

And I am well aware too, that while I am not on deaths' doorstep, not by any stretch of the imagination, I am at least meandering up the sidewalk, heck I've even peeked in the window a time or two over the years.

I know too that I no longer have the luxury of having all the time in the world.   The next several months will shape the rest of my life...or if I even get to keep having a life.

I hate saying stuff like that, cause I know people I care about will read what I write here now..people that I know and love, and that know and love me...that want me to stick around...need me to stick around.

But acknowledgement, and more importantly acceptance, is key.

A first step if you will, in embracing the very real notion, of the change that is inevitable, and will more than likely occur sooner...rather than later.

And this change will be huge.  Monumental.  Life changing.

But believe me when say I want that change...I genuinely want my life to go on as loooong as possible.

Shout it from the roof tops...I want to live Clarence, I want to live!

I have every intention of growing into an old man..wrinkly and grey and longing for the next Matlock episode...but just need one little thing...an awesome, beautiful, wonderful, perfectly functioning new-to-me heart.

I love life, and people, and nature, and technology, and sports, and food, and laughter, and romance, and so, so so, sooo much more.

Heck, I even love me.  I like what I see in the mirror, and am proud and humbled at what I have been able to do with a broken down ticker for all these 45+ years now.

But I am so much more proud and humbled, a trillion times so, at the chance, the mere opportunity, of having the energy to FINALLY take my BODY where my MIND wants to go.

And that's never been more true than it is today.  I can't emphasize that enough.

Look, I know transplant carries some not insignificant risk.  Trust me, I know all the statistics..and I respect that.  But I don't dwell on it.
That doesn't do me, or anyone else around me for that matter, any good.


But doing nothing, not going through with this journey, means I will almost certainly die of heart disease.

Well forget that noise.

I want to live.  That's the bottom line isn't it folks.  Can't make it any simpler than that.

If the phone rings in the next 10 minutes telling me to come to the hospital, I'm there...with bells on.  

Hell yeah.

Giddy Up.

Let's Go!

We've been told what to expect from when we get THE CALL to when we get the final green light, maybe a few hours at least, that the donor heart is definitely a go, is an emotionally intense, roller coaster ride of a life time to say the least.

There will be plenty of time for lots of hugs and kisses and tears a plenty I am sure, and knowing me the way I do,  I will probably tell more silly one liners and bad puns goofy sayings than I ever have in my life...right up until they put me under.

And that instant, right then and there, is gonna be the happiest time in my life...so far.

That's just my mindset right now.  This is gonna be a GREAT thing.

So I get THE CALL, then its just up to whatever fate the universe has in store for me.  And I'm willing to put my life in the hands of doctors, nurses, surgeons and literally hundreds of people that will make it possible for me to have that new heart...that new start.   All the kind words and thoughts and prayers and good vibes....all focused on that one moment in time, and the next few hours as I sleep, and the world waits, for my me and my new heart.

What a feeling...what a thought...wow.    Just. Plain. Wow.

It's weird, I just have this feeling, deep down in my gut, in my soul, that everything is gonna be all right.  I think about it every day...

I'll get the perfect heart.

A flawless, text book transplant.

The recovery...no big whoop.  

Its gonna be an awesome, awesome, AWESOME day for me.

It'll be the first...FIRST day of a NEW heart, and a NEW start.

But, isn't there always a but...and can I being brutally honest here.  It's gonna be an absolutely crap day for my donor, and his or her loved ones.  I think about that...a lot..someone I'll never know, really, but owe the rest of my life to...how weird is that?

And I think about their family and friends too..hard not to.  How hard that will be for them, to make that decision to donate, at such an incredibly difficult time...

Ugggh.  

That right there, is the hardest part for me.

Anybody that knows me knows that I am one of the good guys of the world.  Really genuinely nice to just about everyone I meet, and really hate to see bad things happen to good people.   And I would and will donate my organs when my time comes...I made that choice for myself a long time ago.

But I will be forever grateful that someone else made that choice for me...

Cause that's what is gonna take for me to get a second chance.

My thoughts are always gonna be with the donor in some ways, and my mind is not 100% wrapped around that yet...and I think that's OK, for now   It will be someday. Certainly by the time I am ready to meet my donor's friends and family.

I just want them all to  to know I will take great care of 'my' new heart.

I promise, with all that I am, that I will lead a life that everyone involved can and would be proud of. Not only for that fateful day..but in the days and weeks and months and years to follow.

For as long as I live...for as long as I live on...with "our" heart.

    

Chill Out

They call it chill out music, or lounge music. Spa music to some.  Study music to some.  Just plain ol relaxing music to others.

I call it waiting for a new heart music.

Just quiet instrumental stuff, kind of electronica.  Soft vocals and slow, powerful beats. A little piano...a little guitar.  Not really jazzy...but close.

It's a genre I stumbled upon on YouTube...maybe a few months back, and I am hooked.  I just love the way it makes me feel...and the way it frees up my mind to think about the things I need to focus on...namely getting a new heart, and more importantly...being ready for a new heart.

I have every intention of one day here soon waking up with this perfect, awesome, beautiful, wonderful, fantastic, new-to-me heart, that will allow me to finally...FINALLY have a new start at living the kind of life I can only dream about now.

I almost start shaking when I think about how life changing it is going to be.

So anyway, this music keeps me relaxed, and does an amazing job of keeping my mind off the enormity of all this transplant mumbo jumbo, and especially the stuff that could go wrong.   That negative, paralyzing 'what if' thinking can become a huge, raging, uncontrollable monster in no time flat if I let it...and I am 100% committed to not letting that happen to me.

As I have mentioned before, and this shouldn't be much of surprise to those wondering what it's like to be a stage 3/4 heart failure patient, but I don't have much energy these days to do much at all really. I am able walk, and do some light stuff around the house, but that's about it.  I tried wiping down the microwave the other day and had to take a 2 hour nap to recover...yeesh.

But instead of just sitting there feeling all sorry myself, or being all pissed off at my lot in life, or wondering if I am really, truly ready to get THE CALL...I find time each and every day, maybe just an hour or so, even 30 minutes, for me. Just me...mind, body, and soul...my headphones, and these mesmerizing, hypnotic sounds,..that's my happy place.

There I am truly able to take a step back from life, and just...be...breathe...relax...chill.

This music just connects with me...like deep down in my soul.  Kinda hard to explain...  

It helps in quieting my mind, and experiencing my body, especially my heart...in a way that few take the time, or make the time, to do.

Some call it mediation.  Mindfulness perhaps.

Whatever you call it, I like it.  More and more all the time.

It's just that there is so much to take in, to process, to try to make sense of.

Transplant is as much a mental challenge at this point as it is a physical challenge.. I can see how people in my shoes can and do feel overwhelmed with it all, heck I'd be lying if I said I didn't think that way myself from time to time.  I try not to, but I am human.

I think some people do indeed sort of sabotage any chance they have of a successful outcome...they sort of give up, on themselves, before they even get started.

For whatever reason some folks tend to listen to those voices that tell us the journey is too far...the mountain too high.  The battle to long.

I can't...I won't...let that be me.

So these tracks I've found are awesome...they help me lose track of time, without keeping track...if that makes sense.

And I try to stay in this mindful, meditative state of mind as long as the music plays....usually an hour or two.

As long as the music plays...kind of a metaphor for my life these days.

But I just lie back and experience being still..feeling what it's like to be in my own skin.  I let my thoughts come and go, and always try to return to just the sound, and the feel...of each and every beat of my heart.

And I've really begun to notice how uniquely different one heart beat can be from the next.

There doesn't seem to be much of the typical lub-dub lub-dub these days. instead it seems like it goes along just fine for quite a while...then wham....just wild crazy, fast, powerful beats...out of nowhere.

Takes my breath away sometimes.

When that happens I really try to just breath deeper, and slower, and see if I can get my heartbeat back to "normal" as quickly as I can.  I try to count 100, counting as many beats as I can, and appreciate each beat as a unique moment in time.  A moment in time that I am still alive and happy, and most importantly...one beat closer to hearing a new heartbeat.

So that's my life right now..for a bit of each day at least.

Bottom line is I'm trying as best I know how, and as best as I have learned here in recent months, to get my mind right in anticipation of this new heart.   I can honestly say that I now spend almost zero time thinking about what could go wrong...I'm in great hands with the medical professionals, and they know what they are doing.  Let them worry about the operation itself...my job, as I see it, is to be the absolute best in every other way I can, because I know the call could come at any time.

That's still a bit of a strange thought for me,  What it the phone rang now, and they said come on in. Am I ready?  Is anyone ever 100% ready?

Maybe that's too high of a bar to set for myself.  Again, are we ever really truly ready for anything?

It's best perhaps, to just let the magic of life unfold, as it always has, and always will.

I've have most certainly demonstrated, to myself at least, that I have done absolute best that I can to win this battle in mind my first...and that makes me very happy.

I try to stay in the moment as best I can.

And this music helps do just that.

Have a great day everybody!



Oh, go to YouTube, right now, and type in Ethereal Dreams--Chill Mix...that's what I'm taking about!