So what do I do all day??

Oh hey.  You still there??  Hmmm....been quite a while since I have written in this blog format here about my transplant journey.

Last May it looks like.  Ooops.  But I do have a Facebook page dedicated to my heart, and it is a bit easier to write something quick on that than to sit down and compose something more substantial.

So there's that, but can I be honest?  Being on the list has proven to be incredibly challenging from a mental standpoint, much moreso than the physical side.  At least for me, cause I have been relatively stable in terms of what I can and can't do here lately (the past year or so) and honestly, most days it doesn't even feel like I am on the list. But yet, when I try to do anything besides just walking around or sitting in my recliner watching Leave It To Beaver reruns I get super tired.  And need to sleep it off..so to speak.  And if I get a cold...forget it.   I have zero in the tank and certainly nothing left over for fun stuff.  

And writing about (or even thinking about) why I am so tired makes me MORE tired, and so a few days or a couple weeks without a new post become a couple months, becomes last May.    Sooo how 'bout this... if you don't see something from me for a while, it's safe to assume one thing.  I'm crazy tired, physically or mentally or both.  And just want to sleep or just chill out and do nothing.

And the funny/sad thing is, I don't LOOK sick, most of the time.  But I guess I've become a hell of an actor.  I'm so used to being dog tired on one hand and wanting to be just normal old me again on the other hand.  I can put up a brave face with the best of em.  Lot of sick people can and do just that.

So I do go to the store and my sons ball games,  but I just sit there.  Look closely next time, you won't see me doing much.  I am a spectator...watching life, the fun parts of life, where I can get out there and mix it up and get a sweat on and engage people, just pass me by.  And that sucks.  That ain't me, or at least it didn't used to be, and I hate that.   But if I dwell on the apparent futility and at time hopelessness of this transplant stuff...well, that's not a good thing to do.  This journey breaks some people.  I see it all the time.  The anger and bitterness takes over and makes the waiting, the transplant, and the recovery sooooo much more challenging.  I don't want that to be me.  I refuse to let that be me. Happy face it is.

So...instead of writing about all this frustration here on a more regular basis, I just try to ignore it.

Strike that.

I do things to keep my mind off it as best I can. Heart disease is almost impossible to ignore.  I'm fully aware I almost died twice this past year, and without a state of the art computer hooked up to my heart 24/7, I'd be a goner.  My heart is very sick, it doesn't want to do this much longer, but that doesn't mean it won't   New medicines have given me and my heart more time...and time is good. And I still got this kick ass pacer/ICD in my chest that will save me again and again if need be.

Bottom line, if I keep thinking TODAY is gonna be THE day (yet here we are, nearly 900 days on the list, and it could be very well be ANOTHER 900 days just as easily as it could be today) and if I were to go through those emotions each and ever day

...anticipation...disappointment

...anticipation...disappointment

...anticipation...disappointment...

I don't think I would have made it this far.

So I work super hard every day to stay positive.  To practice mindfulness, to listen to music, to listen to jokes.  Take walks around the lake.  To just be me....not to be me 'with a bad heart'.  If that makes sense.

I don't know what my heart numbers are: what my ejection fraction is, or what a certain protein level is, or the thickness of my left ventricle wall.  I just don't have room in my mind for that stuff.  Let the doctors worry about that, and adjust accordingly.  I just show up, to each day, and that's half the battle, and so far I am winning.

Friends ask me or Tammy all the time why I haven't gotten a heart yet.   Sure, I have been on the list over two years, but the thing is there are always people coming along behind me that have sicker hearts than I am and they move ahead of me on the list.  And that's the thing people don't understand very well.  In a way that's not fair to me, but it truly the best use of a scarce resource (ie donor hearts).  That's just the reality folks.  More people need hearts than are hearts available.  And sicker people get highest priority.  There are people who will die today, somewhere in the world, waiting for the transplant that never comes.  I am grateful each day that it is not me, that I am not one of those who ran out of time.

The silver lining in all this is that somehow, some way, I have been able to keep from getting sicker, thanks to the help of my doctors of course, and to Tammy and all the others who care for me and about me.  Again, I work super hard every day to stay positive.  To practice mindfulness, to listen to music, to tell jokes.  Take walks around the lake. To read.  To think.  To SMILE.

So there's your answer to 'What do I do all day?'

I stay alive.  I don't give up.  And I try to be as funny and as pleasant a person as I can to be...an example of someone doing the best with the very crappy hand I have been dealt.  And believe me when I say I wouldn't wish this transplant stuff on anyone.  It's just a big ol' pile of yuck most of the time, and I gotta better things I would rather be doing.

But I WILL try to update more, on Facebook if nothing else. As we ramp up fundraising activities for post transplant that will be good reason to keep everyone more up to date.

Anyway, that's all I got for today.  Have a great day everyone!  Be good to your own ticker!

HAPPY On The Transplant List

Seems impossible right?

That I, or anyone really, could be happy, genuinely really truly HAPPY while we wait for a new heart...and that new start.

Yet that's pretty much where I find myself these days.  Now some 11+ months that I have been on this crazy ol heart transplant list. Still status 1B...second highest priority.  1A is the highest.  I don't wanna be 1A anytime soon.  Cause that's reserved for the sickest of the sick.  : (

But for me...and let's just cut to the chase:  I'm not anywhere close to the sickest of the sick...no need to be hospitalized or do anything too drastic like a heart pump just yet.  Which is a good thing.  (A reason to be HAPPY...hint, hint.)

The docs says I'm in class III heart failure:

Marked limitation of physical activity. Comfortable at rest. Less than ordinary activity causes fatigue, palpitation, or dyspnea (trouble breathing)

And there are other heart numbers the docs keep track of:

Ejection Fractions
NT-PROBNPs
Blah, Blah, Blah, etc. etc. etc.

Oh and my Gamma Glutamyltranspeptidase....gotta love Gamma Glutamyltranspeptidase.  I know I do!  That number is A-OK by the way.

Anyway, those numbers all come together to indicate I am pretty much holding steady where I am at. Not too hot.  Not too cold.  Just right.  Not perfect health by any means, but things could be A LOT worse.  (Another reason to be HAPPY...hint, hint)

Just waitin for THE CALL.  Annnnny day now would be just fine with me.

The transplant team continues to watch me like a hawk.  I see em every few weeks at least, and I even have a little meeting with my transplant surgeon today.   And every time I get so much as a hang nail they seem very concerned, which is very reassuring if nothing else.

Don't get me wrong...Stairs still stink, and hills. Uggh.   And I really can't keep up when we're walking a long distance...say waaaay around the block.   Like a 1/4 mile or whatever.  Pretty weak. But it is what it is.

But I can sit on my couch LIKE A BOSS!  And watch funny videos and listen to great music, and listen to great speakers give incredibly motivational speeches. --More on that later...oh, and I'll let you in on a little secret....but I'll save that for the end.  : )



Oh and did I tell you, I had a few roadblocks here these past few months.  Ahem.

So in May, my pacemaker/ICD...I affectionately called him Marcus...you know from Marcus Welby MD?  Binge watch it someday.  Good stuff.  




Anyway Marcus got infected.  By who knows what; the pathologists could never determine just what it was. So a few days in the hospital on IV antibiotics, and another 10 days at home oral antibiotics, and they thought I'd be good to go.

1st infection.  Thought it was a rash.

2nd Infection.  Eeesh.

Well crud. Three days later, the infection came back.  So back into the hospital I went.

This time the docs were playin for reals...yanked out Marcus, and I got a fancy new wiz bang ICD, whom I've decided to name Rocky.  From...you know...the Rocky movies?  I, II, III, IV, and V!  Oh and Rocky VI called Balboa.  And Rocky VII coming later this year I think, entitled Creed!

And things were going along swimmingly.  Old site was healing...new site was healing.  I was feeling groovy.

And THEN...just this past week, I had to have the ventricular ICD lead re-positioned cause it wasn't firing quite right.  Hey it happens.

And it took two tries. Had to put me under and open me up twice in just the span of a couple days. Again...it happens.  No biggie.  Extra nurse time.  Wink. Wink. Nod. Nod.

Oh, Hi Tammy.  : )

The doc thought he could use the old ventricular lead and just move it to a different spot, but no dice. So he just went back in the next day and put in a whole new lead.  Works awesome now.  Just the way it's supposed to.  Did I mention the extra nurse time...the extra CUTE, friendly, super knowledgeable, compassionate, awesome nurse time  : )

The really cool thing about ALL those procedures...is that they all turned out pretty much perfect.   Not 100% perfect...heck nothing, or no one, is perfect.  But it's still pretty darn good.

And never let perfect be the enemy of pretty darn good. That's what my ol pappy used to say...except darn was replaced by #@#!$%!@!

So once again I've proven to be a fella who can genuinely roll with the punches and come out of most medical adventures feeling great...all things considered.  And that make me and the transplant team ooooo soooo happy.  (And being HAPPY is a good thing...hint, hint.)

Oh, and learned, once again that I am a pretty fast healer.  And that make me and the transplant team ooooo soooo happy.  (And being HAPPY is a good thing...hint, hint.)

So that's been my summer thus far.  Just chillin..gettin some surgeries.  Eatin some cake.  Watchin the cat lick his nether regions. Listenin to some minor league baseball.  Hangin out with my son and my girlfriend and trying to keep some normalcy to my life.

And just making a real concerted effort to find some reason, ANY reason, to be HAPPY each and every day. Hint. Hint.

Yep.  I got my head screwed on straight this summer.  Heck it's screwed on damn near perfect these days.

And never let perfect be the enemy of pretty darn good.  ; )

You see, it's just that I have had soooo much time to think, about who I am, about the kind of person I want to be, not just when I get that new heart...and that new start, but here today, now.  We live our lives...or at least we should...not in the past, or in some dream of a seemingly distant future.  But Now. Right now...these multitude of split seconds are the 'stuff' that makes up or lives.

The Now.   Now. Now. Now.

I took the time to really think about the kind of people and issues that I think are worth my time. and heck, I live in the same world you all do.  I see the headlines and all the garbage back and forth that goes on in the news and on Facebook and Twitter.  And if I spent any amount of time around that energy sucking negativity, I could just feel my heart acting up. And that's not good for anyone...and especially me.  Emotions, good and bad, are HUGE in heart health.  I wish more people understood that.

Funny thing...ok, maybe not so much, but there is a great thing called the OFF button.  Use it once in a while : )  Or even the little hitting that 'X' on the posts that make your blood boil....click.  Ah, sweet relief.  And empower yourself by unfriending, or unfollowing at least...people that always gripe and moan about things.  There is a growing mountain of research that excessive time on social media...and engaging in online debates are HORRIBLE for you.  For you mental health to be sure, but on your body too.

And I gotta tell ya, being dead serious honest here...if you can somehow make that decision get rid of negative people, especially on social media, and filter out all the 'news' you can't really do anything about anyway...and instead focus each and every day on seeking out things that are positive and funny and uplifting, it will play a HUGE role in fostering the best possible environment for the best possible outcome.

That right there is my Numero Uno piece of advice to new folks new to transplant.  Heck it applies to anyone facing any challenge in life.  Don't let other people or the events half way around make you feel worse about this crazy thing called life.  I feel really strongly about this.  

I, Eric J. McClintock, 110% believe that has been THE deciding factor in me and my little ol heart not getting any worse these past few months.

You see, every day we have a choice.

There are like a trillion things to feel bad about if that's how you want to look at your situation and at the world.  And frankly, that's what most people do.  Whoa is me.  Whoa is the whole effin' world.

But then....oh this is so great... here are like a trillion AND ONE things to feel good about if THAT's how you decide to look at your situation and the world.  YOU decide. It's your CHOICE.

It's not always easy...and the Negative Nat's and Nellie's of the world are gonna try to suck you back in all the time.   But don't let em...

Sorry this is so long...but it's good.  A few more items here...

So what do I do keep my head on straight.  I love, love, LOVE music.  And I love to watch people doing awesome, amazing spectacular things.   And wouldn't ya know it, the YouTubes is full of that kind of stuff.  You just have to look for it.  Here's a pretty cool one.  And there are hundreds.  Just search for People Are Awesome...or Epic Wins, That sort of thing.

And I JUST discovered these awesome AWESOME videos by a guy that goes by the YouTube handle of Scottdw.  His videos AND music are mesmerizing, and fun, and POSITIVE.  I can't tell you how much these videos make me smile.  And Happy.  (And HAPPY is a good thing...hint, hint.)

But check this guy out, and check out all his videos.  Tell all your friends, and share share share. This is as good as it gets folks!

Finally there are some fantastic videos that give snippets of inspiring words by great speakers over motivational, uplifting music.  It is so worth your time to seek these out too.  You'll hear from names like Eric Thomas, Les Brown, Jim Rohn, Will Smith, Abraham Hicks.  This stuff is great...and it really feeds the mind, and the body, and the soul.  Here is one of my favs

And FINALLY, and I told you I had a little secret.

Well I guess it's not much of secret...but more of a revelation I guess...in my own life.  Maybe it will be in yours too.

And it boils down to this. Before I thought I was ready for a new heart...and a new heart.  But now I KNOW I have a new MIND too...and that will allow me, in a million little ways, to enjoy my new heart, and my new start so very much more.  Woo Daddy...its gonna be a fun ride!

But I gotta work at it, and I keep working on it each and every day.  And I am happy...THRILLED beyond imagination..to do just that.

We all...each and every one of us...could and should work on being just a little bit happier.  Happy You.  Happy Me.  Happy World.

It's just that it's soooo worth it to be happy HAPPY in whatever circumstance you find yourself it.

Trust me!

Thanks for reading folks...and have a GREAT and HAPPY day!

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.

    

Two Lists Are Better Than One

In a few days we travel to Rochester, Minnesota.  Home of the Mayo Clinic.

Ah yes...THE Mayo Clinic.

Many would argue it is the best hospital in the country. Number 1 in a whole host of areas, and in the top 5 in just about everything else.  Most importantly to me, the cardiac specialties, and especially the transplant center, are rock solid.


With transplant centers in Arizona and Florida as well, Mayo performs more transplants than any other medical center in the world, and that includes all kinds of organs and tissues: lungs and livers and kidneys, even bone marrow.

And of course, the human heart....my favorite.   450 plus in the last 10 years or thereabouts, so I am pretty dang sure they know what they are doing.

And it's the way they practice the art of medicine that impresses me and so many others.  Mayo thrives on it's dedicated teamwork approach and unbelievable patient focus.  There is real, genuine sense of shared responsibility and accountability to their patients...coupled with the most advanced, cutting edge medical technology, knowledge, skill, and innovation the world has ever known.

I almost have to pinch myself here..some of the finest, most highly skilled, compassionate, and dedicated healthcare professionals...again...in the world...are gonna poke, and prod, and test, and retest me little ol' me...for the better part of three days.  Three days!! Yeah, I'm not exactly thrilled about that poking and prodding part...but it is what it is..and it will be worth it in the end.  Remember...a new heart...a new start. That's what it's all about!

So they will take that results obtained in those precious few days, combined with all the transplant workup I have already completed over these past 9 months or so, and hopefully come to the same conclusion that the doctors here in Iowa have reached, and that is I have a very sick heart, and that I am indeed a good candidate for transplant...not just here in Iowa...but at the Mayo Clinic as well.

I should mention, that it's perfectly acceptable, and often encouraged, to be on the list at more than one transplant center. It basically comes down to a numbers game.   The Mayo Clinic is in an area in which there is a much, much larger potential donor pool.  And they perform heart transplants more frequently than other centers.  Having a realistic chance at a donor heart few times a month, compared with a few times a year..could make all the difference to me.   Time isn't exactly on my side here.

And let me say too, that The University of Iowa Hospitals and Clinics are FANTASTIC... don't get me wrong.  And I'm not saying, nor are my doctors here saying, that there is anything wrong with my current hospital, Not at all.

I owe my life to that place.  Every surgery I have ever had has been there.  And virtually all my medical care, spanning 45 years has been there.    And if I get THE CALL to go the U of I for a new heart...I wouldn't hesitate one second.  It's an awesome, awesome hospital with AMAZING doctors it it's own right.  I know I would receive the very best of care, just as I always have.

But as luck would have it.  I live relatively close to not one, but two, world class transplant centers.  I am one lucky, lucky guy in that respect.  It would be beyond silly to not take advantage of both places.

Furthermore, it is especially important for tough or unusual cases like mine to be in the care of the best medicine has to offer.  The transplant itself, taking my unusually complex heart defect and blood vessel anatomy into account, takes an entire medical team, the surgeon most notably, that have proven to be, and will continue to be...well...a cut above the rest.

Not everyone would take my case.  Only the best, of the best, of the best, would even try.  

Like I said, it's a numbers game.  The University of Iowa Hospital and Clinics is in, you guess it... middle of Iowa.  Cornfields and hogs and pigs and chickens just a couple miles away.

But not many people. And that means not many potential donors.

Even the "Big City" of Des Moines, with around 600,000 inhabitants, pales in comparison to big populations centers like Chicago and Minneapolis.  And Mayo has access to those donors before Iowa.  It's just the way it works.  Indeed wait times here in Iowa can be longer than the national average...and unfortunately I don't really have the luxury of time right now.

And I am thrilled my doctors, especially my transplant surgeon, here in Iowa have encouraged me to get listed at Mayo.  They, along with their wonderful support staff,  did all the behind the scenes work to get all the appoints set up and sent off my previous test results weeks ago,   Bags are packed, GPS is set...and I'm rarin' to go.

To say I am humbled by all the work sooo many folks have done on behalf of me and my health, would be a huge understatement.   All I can say is thank you...for this opportunity.   Thank you. Thank you.  Thank you!

Finally just a word or two about the only sort of bummer here in this whole story, and that is that the fact that IF a heart becomes available there...in at Mayo...in Minnesota...I have to go there.  And stay there, for a few weeks beyond the actual transplant...at the very least.  To recover, and be constantly monitored for signs of rejection.   It will be my home away from home.  It stinks in a way to be away like that..it will be hard on me, and on Tammy, and the rest of my family, but again, I have to constantly remind myself that it will be worth it. For a new heart,,,a new start.

We'll let you know how it goes up there in the Minnesota, the Star of The North they claim.

Let's hope!

Thanks for continuing to be a part of this journey, and have a great day!

The Year That Was...All 45 Of Em

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

strawberry.  My aorta...the size of the straw in your soda.  Sutures the size of pin head..silk barely larger than a human hair.  If you ever have a chance, and the nerve, and the stomach, to watch a pediatric cardiac surgeon at work...do so.

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.

Tammy holding my hand during one
 of my hospital stays.  Awe. 

But they found the leaky vessel, WAAAAAAY up in my nose, and cauterized my nose WAAAAAY up in there...and I haven't had once since.   Knock on wood!   That was pretty close to the most pain I have ever had....lasted only a couple seconds...but good Lord...that hurt.

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.

Social Media

Hi, Everyone.  I thought I might start to tweet a bit more about this journey as well.  Especially as I hopefully get closer and closer to a new heart : )  I'd like to tweet out as much as I can when I actually get THE CALL.

So if you want to follow me on Twitter it's:  @EricJMcClintock
My Facebook page;  https://www.facebook.com/321StartLiving
And my email is:   ejm1114@yahoo.com

Being able to connect with folks all over the world during this journey...well, it means the world to me.

Time Marches On

It's been a while since I my last post.  Sometime last month.  Almost a month ago I guess.

And it's getting close to three months now since I was placed on the transplant list.   Sometimes it still seems surreal that I could get the call this afternoon, any afternoon really.  Or morning, Noon, or night.

I think about it every day....kind of hard not to.

Go to the hospital, take a few sleepy drugs, and wake up with another human heart beating inside my chest.  Easy Peasy.

I know it happens, successfully, all the time.  But when I think about little ol me being the one going through it all, when I stop to think of the enormity of it all...

Well...

 Queue the Twilight Zone music.

I haven't counted the EXACT days for a while..its over 80 though I think.  Not that it really matters. Numbers can mess with your head if you let em, and I try really, really hard not to do that to myself.

I hate the talk of average wait times, and odds of finding a donor, and all that jazz.  It is what it is. I've gotten very good at dealing with things as they are.

I've heard that 'against the odds' stuff my whole life.  Lot's of folks with MD behind their names told me and my parents I wouldn't make it to 1 or 3 or 5...but here I am.. almost 45 frickin years old, thank you very much.

Kids like me, and now tens of thousands of grown ups like me, who battle on, and on, and on, in the face of congenital heart disease, with no little or no guarantee of future success, are called SURVIVORS ...for a reason.  There is very little, if any, quit in any of us.

But..I am aware, painfully aware at times, that time...moves...sooooo...slowly.  Again, not all the time, and not every day...but good gravy, there are times when I swear the second hand stops moving.

In some ways I still feel like I'm 9 years old in the back of Dad's mile long Chrysler Newport on the way to Grandma's in Ohio,  and over and over again, uttering those three little magic words, even it it was under my breath..Are we there yet?

Are we there yet?  Are we there yet?  Oh, for the love of Pete, are we there yet?

(Thank the Lord dad let us listen to country music on the 8-track.  #saidnokidever)

But time marches on....it always does.

And to be honest, more often than not, I catch myself thinking, has it really been that long?  3 months? For Real?

Football season is almost over.  Crops are almost completely harvested.  Snow is on the way. Thanksgiving is just around the corner.  Then Christmas.  Then a whole new year.

It's just this waiting is so dang boring.  Oh my gosh.  BOOOOOORING!

Mainly cause I can't do a whole lot....except sleep.

I'm GREAT at that.  Holy mackerel, I have mastered that.

10, 12, 14 hours a day. No problem.  But it's not very fun...at all.

And the fact that I sleep that much leaves little time do much else, because when I am not sleeping, I'm still not 100%.  Not even close.

I'm not sick enough to be hospitalized yet, but I'm not healthy enough to have much of a life.  It stinks at times.  Stinks real bad.

Good thing is I don't have any real pain yet...I just get extremely tired after doing very little.  It's frustrating.  And it's boring.  Did I say it was boring?

Not exactly ideal conditions for prodigious blogging...hence the month between blog posts.  Not exactly ideal conditions for much of anything...except waiting for a new heart.

Queue Buck Owens (and the whole Hee Haw gang) drifting over those lime jello colored leatherette seats...

Are we there yet?  Are we there yet?  Are we there yet?

Oh wait, I said that already.  That STILL didn't make the phone ring...what a jip.

So I used to track the days.  But once a few days became a few weeks, and now almost a few months well, I gotta be honest.  The thrill is gone.  The novelty has worn off.  I'm ready and rarin ta go.  A little personal LOL here...If my dad were still here, I could hear him say, "son, it's time to shit or get off the pot."  I agree Dad..I agree.

But whatever the wait time ends up being, I'm guess I'm OK with it. I kinda have to be.  I'm not going to give up.  I've come to far.  Too many people pulling for me.  I'm surrounded by world class doctors and world class love, I still feel like the luckiest guy in the whole wide universe sometimes.  Heck, most of the time.

And I still think I'll beat the averages. and I'd be more than happy to spend the holidays the in hospital if it means starting the new year with a new ticker.

Any in case your wondering,  I do still visit the doctor every few weeks and everything, besides my heart, seems to be just fine.  In fact they say the all this sleep and fatigue is very common and perfectly acceptable.  My body has figured out a way to cope as best it can with the circumstance it finds itself in.

So for my overall good health, I am very grateful.  It bodes well for the future and for my recovery post transplant.

My appetite is hit and miss, Fortunately most of the time I am indeed hungry.  But I feel full so fast. I have to force myself to eat a few extra bites it seems. But I am maintaining my weight.

Again, for that I am very grateful.

Wrapping up here, I was just thinking. remember when we were kids and we used to play freeze tag.  We'd run around like goofballs till the 'it' kid touched us.  And we had to stay there, in that exact spot, almost frozen in time, until some came along and 'unfroze' us.

That's a pretty darn good analogy to how I feel.  I'm just kinda stuck, like in a childhood game of tag..and like in the backseat of that old Chrysler. Waiting.  Waiting.  Waiting for a new heart...and a new start.

Have a great day everyone!

Lining Up The Ducks

The first few days on the list have now turned in to a couple weeks.  I never really was under illusion, or delusion, that I would get the call in the first week or two, but then again, it does happen.

But the phone hasn't rang....yet.

I do, however, think I've settled into a pretty good routine.  I need a lot of rest, but I accept that, and don't try to push too hard too often, cause I would like to stay out of the hospital as long as I can.  I watch a lot of comedy clips on YouTube and am glad football season is hear once again.  Bottom line, I try to keep my mind on other things besides my heart.

I think I've done all the preparing I could up to this point.  All the things that a prudent and responsible person in my position should do, I have already done.  I got my financial and legal stuff in order, I've got my letters written to loved ones, and made my peace with the universe.   We've got people lined up around the corner waiting and willing to help us out in whatever way we may need.   That's an awesome feeling.

And not that I am anticipating anything other than being able to walk out of that hospital with a smile on my face a mile wide, and a new, powerful, healthy heart...but still, I know there is that chance, that well...things won't go storybook perfect.   And again, it is a risk I fully understand,  but more than willing to accept.

So I honestly try no to think about it too much, and certainly I don't obsess about it.  Life has a way of unfolding in ways that astonish and delight if that's what we expect.   And I do think that this will be be coolest experience of my life.  Call me crazy I guess.

I've always been a glass half full kind of guy, heck, even a glass clear full and overflowing kind of guy.

The alternative just doesn't appeal to me...doom and gloom and poor me and all that jazz, well it's never really been me, so why start now???

I guess I hope my donor is an otherwise happy and healthy, fairly normal, but somewhat goofy guy (or gal) like me.

Are there other things I would rather be doing?  Sure.  But I still choose to be fully present in this moment of my life, and embrace my circumstance, what ever they might be.  To quote Rocky Balboa..."Ain't so bad."

All in all, I think I have a done a pretty good job of getting my ducks in a row!