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!

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!

One In A Million...Just Like Me

Facebook, and the rest of social media, have connected me with some amazing folks from all over the world. Many who share my same heart defect, Transposition of the Great Arteries, and who have had the groundbreaking surgery, The Mustard Procedure, and at roughly the same time...in the late mid to late 60's and early 70's, and some who are currently on the heart transplant list themselves, or have already had a heart transplant.  

I find that AMAZING.  And the almost daily interations with these folks are HUGELY important in my journey right now...and probably always will be.  Well, not probably...It's always going to be important to me...and that's a guarentee.


As different as we are in some ways, this heart disease has a way to binding us together in ways few can fully understand.  A lot of these folks I have never met in person, but I am honored to know them just the same, and equally honored to call them my friend.


Heart disease, and especially heart defects that we are born with, have a way of bringing out the best of us..if we let it.  The compassion and empathy this group has for others in similar shoes is nothing short of amazing.  It's inspirational.  It's motivational.  It's life saving. It's just frickin awesome!  

I know I speak for many survivors of heart defects and related surgeries that it brings a tear to our eye to see little ones still being born with this defect, but at the same time knowing that there is hope.   This is always hope.  Folks in there 30's, 40's, and 50's just out there livin life...just cause that's what we do.  We live each day with knowing where we have been, what we have overcome, and what we are capable of overcoming.

And to the extent that our collective well-being, positive outlook, meaningful advice, and feedback is an inspiration to others who have come, and will continue to come, after us 'old timers'...well it's just very humbling.  

I'm told almost everyday now that I am am inspiration to someone.  And I take that to heart, and it really does keep me going.   I know many of us feel the same way.  So thank you for that. Seriously, it really does mean more than you could ever imagine.  

Thank You. Thank You. Thank You.  





So whether your across the state here in Iowa, or in another part of the United States, or in Canada, or England, or Australia, or New Zealand or anywhere else in the world. I just want to say you're awesome.  

Thanks for not giving up on yourself, on me, on others just like us, and on the future.  Your kindness and well wishes have gotten me to where I am today...and will get me through to a new heart and beyond.    

Ain't So Bad

Remember the Rocky movies?  All five or six of them.  Heck I think they are even making a new one...as we speak.

But anyway, such memorable characters...

Apollo Creed

Clubber Lang
Mick the trainer
The Russian Dude

Adrian....YO ADRIAN    Paulie.

And of course, the man himself, Rocky Balboa.  The Italian Stallion.

And wow, such incredible life lessons.  Do me a favor, heck do YOUR SELF a favor, and take a few minutes to watch some of the clips on youtube, or maybe you have them in your movie collection, but anyway really take the time to listen to the dialog, and immerse yourself in the story line...and sure it's just movies, just made up characters and events...but it's soo true to life just the same.

All these movies, especially the first four, and double especially, the first one...are simply amazing to me.  Classic cinematic depictions of what it means to persevere when you seemingly have zero chance.  It's my 'go to' motivational material.

Quotes, and dialog, and songs, from the movies are a staple of countless self help books and locker room pump up talks.  You would have to have lived under a pretty big rock the past 30 years not to have at least heard some of these gems a time or two.

Eye of the Tiger!  Yo Adrian, I did it!!  Cut me, Mick.  The list goes on and on...

Hopefully it's not too hard to understand why I identify a lot these days with Rocky Balboa.

The other day I was honestly feeling kind of down and pissed off about this whole situation.  I barely slept the night before, my legs hurt, and I was sick to my stomach, yet I was hungry but too tired and weak to get up and make anything remotely healthy.  And I was just tired of it...all this heart stuff, the doctors visits, the waiting rooms, the surgeries, the list, the medications....all of it...it just gets kinda old after nearly 45 years.  And while I am pretty positive most of the time, I am human, and every once in a great while, I wonder if it's all worth it.  The desire to throw in the towel is pretty strong sometime. I think it's that way for a lot of us on the list.

So as I was sitting here on the couch, feeling all sorry for myself...a scene from one of these movies popped into my head.  The scene from Rocky III when he's just starting to fight Clubber Lang, and Clubber is just pounding the crap out of Rocky...giving him everything he's got.  But Rocky just keeps takin the punches.  Just. Keeps. Taking. Punches.

And I was thinking...each new day on the list seems like a body blow to my spirit.  Each week on the list...a right hook to the jaw.

And that wasn't a very good place to be...those were NOT happy thoughts.

..

But then I remembered just when things looked really, REALLY bad for Rocky, something amazing happens. He says to Clubber...

Aint so bad.
Aint so bad.
                  You aint so bad.

                                         You ain't nothing.

And this just enrages clubber even more, and he redoubles the force of his punches, and Rocky takes the beatin of his life.

But Rocky never stops believing in himself...

So long story, short, just when all seems lost, Rocky starts fighting back...and quickly turns the tables on ol Mr. Lang...and gives him a taste of his old medicine.

Anyway, sitting there on the couch, and thinking about this scene, and those words, something sparked in my head, and in my soul, and I knew I wanted to adopt that mantra from here on out.

I've never been in a boxing ring, let alone much beyond a shoving match on the grade school play ground.

But make no mistake, this heart disease has me in the fight of my life.  In a fight FOR my life.

Like Clubber Lang, and before him Apollo Creed, and then the Russian dude, heart disease has every intention of pounding my head in, of bringing me to my knees
...of wanting me to throw in the towel
                                    ...of wanting to give up.

But I am not gonna do that.

To this dreaded heart disease I say, You ain't so bad...you ain't nothing.

I've never been a quitter when it comes to this heart disease, and I ain't gonna start now.

To the Surgeons, I say...cut me Mick,  Let me get back out there.  I can win this fight.

And to my symptoms, when its really hard to distinguish one from the other, I guess if there are three, I'll aim for the one in the middle.

Cause I ain't gonna stop swingin...with everything I've got.  All my strength.  All my power.  All my love.

Let me leave you with is today...one of the best inpsirational quotes of all time in my opinion.  It's from one of the later movies...but wow, does this hit home for me   Here's hoping you find your own motivation to stay in the fight..

Have a GREAT day everyone!

Let me tell you something you already know. The world ain't all sunshine and rainbows. It's a very mean and nasty place, and I don't care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't about how hard you hit. It's about how hard you can get hit and keep moving forward; how much you can take and keep moving forward. That's how winning is done! Now, if you know what you're worth, then go out and get what you're worth. But you gotta be willing to take the hits, and not pointing fingers saying you ain't where you wanna be because of him, or her, or anybody. Cowards do that and that ain't you. 

Road Trip!!

Road Trips.

We've all been on them.

Pack the bags, corral the kids and the dog in the back seat and head out on some great, grand, wacky, wild adventure.

Maybe we head to the Grand Canyon, or the Field of Dreams, or the Mall of America, or some ball game in the 'big city', or maybe we simply take that all too familiar trip, you know, over the river and through the woods...to Grandmother's house we go.

Few would deny there is a certain thrill, a certain sense of freedom, of endless possibilities...when we stop planning, stop preparing, stop counting down the days...and we FINALLY get to actually be going.

Going.  Moving.  Doing.   Not just sitting there.  Finally the day has arrived where we finally get to go somewhere.

Anywhere but here, right?

And if the route is familiar, we know in our minds, even before we start out, where we might stop for a pee and a pop, or where that great roadside burger joint is, just 187 miles away!   World's Largest Ball of String, Check.  We trust our car will get us there, we trust the road will get us there, we trust it will be just fine.  Grandma will be there waiting for us...

And most of the time we don't even need a map (or a GPS these days)...we're at least somewhat familiar with how to get there, and as long as our sense of direction isn't totally shot, we can at least get kinda close to where were going before we might maybe..just maybe...as a LAST resort.. have to stop for directions.

Let's be honest, half the fun seems to be in the journey, not just the destination.  And sure sometimes as the miles add up we get a little restless, the kids begin to argue, 'are we there yet' is more frequent.  The engine might start to heat up, and the AC starts blowing out hot air and the fuel light comes on.  Road constructions detours you 20 miles out of your way.  But in the end you know, 99 times out of 100, you'll get there just the same, and no worse for wear.

And that's the mindset I am trying to maintain during my wait time.  Destination...New Heart.  Have fun on this adventure...anticipate a bump or two or five along the way, and just take time to enjoy the entire process of...Going.  Moving.  Doing.

But I know this is no ordinary road trip.

I really have no idea how long the trip is going to be.   For me miles are measured in weeks and months.
  2 months?
                         17 weeks?  14 months?
                                                       Tomorrow??
           Who knows?


I'm not even sure where Grandma lives anymore, and nobody else knows either.

I'm hoping my engine holds up long enough to get there, and the tires have enough tread on them, and the crack in the windshield doesn't get too much bigger, and I'll be able to get something on the radio besides talk, talk, talk,   And...and...and.    There is always another 'and'.

I hope I don't run out of gas.
I hope I don't get into some silly fender bender that will make the trip even longer, or even impossible.
I hope I know when to let someone else take over when I get too tired to drive...

But I still want to take the time to slow down and soak in all the little, and not so little quite honestly, things I've seen before, but never took the time to appreciate.  Cause I always thought I had more time...I think we all do

Everything on this trip takes a new meaning when I am stopped in my tracks at times, and I wonder if I will ever pass this way again.

I try not to dwell on that thought much, but it's there.  And it's silly to deny that it is.

I love being on this adventure, don't get me wrong, and still just keep believing that the New Heart is just around the next bend, just over the next hill.

One Month Down

One month ago today I got placed on the list. No call yet.

But you know what, despite what Homer says, it's OK.  The waiting game has given me time to genuinely come to terms with all this, and continue to do what I can to get my body ready for this new heart.  Best thing I can do now is not push my luck, because I still get extremely tired very quickly, and it's way too easy to over do it. Learning new limits is almost a daily occurrence now.

My job now is to stay as healthy and strong as I can, for as long as I can. The success of my transplant depends on the skills of the doctors and nurses and the care of my loved ones, sure, but ultimately my preparedness and positive attitude will mean just as much, perhaps even more.  I love, LOVE, knowing that I still have some control over the outcome.

Anyway, the past week has been really kind of amazing.  I had a cath last Monday and found I have managed to maintain and actually improve my heart function enough to stay off the IV milrinone for the time being.  Hoo Rah.

I'll take that.

I'm in no hurry to get on that medicine.  I'll take what ever level of freedom and mobility I can get, for as long as I can.  I know a lot of folks on the list aren't as lucky as me at this stage of heart failure and this 1B status, but again, I'll take it.

I had thought I would be able to blog more regularly about this, but honestly, it's hard to put in to words all the thoughts, feelings, and emotions that go into being in my position.

I'm not a worry wart.  Never have been, so why start now?  I remind myself every single day of the dozens of times in my life when I have kicked the odds against me right in the proverbial ass.  Not sure how or why that is. Just lucky to be born with a resilient spirit I guess.

No wait, I know why.

Because I make a concerted, conscious effort to not whine about my situation, and I have learned to keep my distance from those who complain about theirs.

I know in my heart of hearts, in my soul, that things will always work out for me as long as I don't ever give up hoping for a brighter day.

It'd be nice if I got the call sooner rather than later, but in the mean time, I don't want to lose sight of the awesome things going on in my life now.  I'm still me.  And I always will be.

If anything being on the list for a month now has reminded me just how crazy lucky I have been in my life, and I am so gonna love having a heart that takes my body where my mind yearns to go.

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!

Football Weekends

The hospital I have gone to my whole life, and the one where I will get my new heart, is right across from Kinnick Stadium, home of the Iowa Hawkeyes.   The fact that I have been a life long fan of their instate rival, the Iowa State Cyclones, well let's just say that the irony isn't lost on me, and it's been the source of plenty of good-natured ribbing over the years.

 Hospital parking ramps just to the right

I'm not a sports nut, but I do like college football, and really love small town high school football on Friday nights.  Just great atmospheres.  So fun.  

Unfortunately it's really hard now, probably almost impossible for me, to manage going up and down the stadium steps.  And as much as I would like to be out there, tailgating with my friends and giving back a little of that good-natured ribbing myself, it's just not in the cards right now.  

So we watch at home.   And I kinda multitask, its just sort of on in the background.

It's especially hard for me to watch close games.  The adrenaline gets pumping and my heart gets pounding, and I start to not feel so good.  People really do have heart attacks during exciting sporting events, and to be fair, that's probably due in part because they may have just spent the last couple hours, oh I don't know, gorging on greasy foods, salty snacks and an adult beverage or two, or five. So as far as me tempting fate these days, yeah not so much.    

So I miss a lot of big plays, because I look away or go in the other room.  Or flip over to the cooking channel for a couple minutes.

And that stinks in a way. Cause I really like football, But I really, REALLY like being alive too.  

I guess I am not a very fun guy to watch a game with these days.   Oh well.  There are worse things.

So many things are gonna be better when I get the new heart...and this is just one of them.  Trivial perhaps, but part of what will make it worth it in the end.  

Good Days...In Perspective

I've enjoyed a string of two or three 'good days' here in a row.  I've gained back a little weight, my appetite has been OK, and am still quite positive about eventually getting a new heart.

But honestly for me, and being on the transplant list, these 'good days' are sort of a relative thing.  

You see, I often long for good ol'  'good days' that included waking up refreshed, feeling like eating a decent healthy breakfast, putting in a full days work.  Riding my bike at lunch time.  Golf in the evenings.  Playing with my son.   The list could go on and on...

And I had all that, maybe 5 years ago.

I wish I could go back to a time before I started feeling the force of my heart with just about every beat, being able go on a walk, let alone carry on a conversation without losing my breath, and again, the list could go on and on.

Every Day Now...

Every day it seems I get a bit slower, maybe take a couple extra breaths here and there.  Steps have been tough for a while, and inclines too, now just walking slowly and carrying on any kind of conversation is a bit harder than I'm used to.

But...

Every day I am just a little more appreciative and thankful for how far I've come, and reminded in a million little ways how many people are genuinely pulling for me.  And honestly, that's the most important medicine I take right now...the kind words to me and Tammy and the rest of my family, really do help us look forward to another tomorrow.

Today was a day of laughter and friends and family and just silly stupid stuff.  Kind of a perfect day if you ask me.

Being on this list isn't so bad right now.  My goal is to always keep that attitude.   To not waste today waiting for a better tomorrow

Setting a PICC

Well yesterday was an interesting day.  I had my first appointment at the hospital since getting on the list.

We met with my transplant cardiologist, a woman named Kelly Ann, a couple years younger that me I believe, and just an awesome, awesome advocate for my care.  I'll write more on doctors and nurses at some point, cause they are such an important part of this journey.  But she really is just perfect for me and my temperament, and also simply top notch with helping Tammy take all this in.

We went over some of what will happen now that I am on the list, and what will happen when I get THE CALL.  It was stuff I had heard before, but it was always about some other patient.  I've said this before, but it's a bit surreal when I am the one being talked to, and about.

Anyway, my heart obviously is having a lot of trouble keeping up.  Just doing daily activities pushes it to its limit, and this is starting to result in some weight loss and muscle mass loss.  And my appetite comes and goes...and even when I am hungry, I am full after just a few bites.  And I used to be a HUGE eater. Like a whole pizza in one sitting kind of appetite.   So this is certainly different for me.

And the danger is that I could be so weakened buy this, that my body would have a much harder time dealing with the transplant.

But there is a miracle drug called Milrinone, that is dosed out through a small pump I can wear in a fanny pack.  This medicine will be constantly fed into my body via a semi permanent IV line (call a PICC...Peripherally Inserted Central Catheter).
I'll get that placed in a couple weeks, in mid September, once I am about 6 weeks out from the ICD placement I had on August 5. So a few days in the hospital to make sure everything is working as it should,  and then I will have a home health nurse come an check on it once a week it sounds like, and supply me with more of the drug...and batteries for the pump.  Batteries are important!

I've heard great things about this drug, and hopefully it will give me the energy to at least maintain the weight and muscle mass I do have until I get the call.

Oh, and I got the letter in the mail officially stating I am listed for transplant, at a Status 1b.

Have a GREAT DAY everyone!

Weighty Issues

Today's entry is going to be pretty short.

I had a pretty good bout of the stomach flu yesterday and just finally getting my appetite back.  The docs constantly tell me to keep track of my weight.  I used to hover around the mid 180's....now I hover around 170,  but in past couple days I've dropped 4 lbs.

Sudden weight loss (and weight gain, for that matter) can be one of the signs of heart failure, but I am hoping I'm a couple extra protein shakes away from being back to 'normal'.

I have my first appointment tomorrow since being placed on the list.  So we'll see what's up.  Hopefully it's nothing to be too concerned about at this point.

Being able to read the signs and symptoms of heart failure takes some getting used to.  I don't want to cry wolf, but I don't want things to get out of hand.

Have a GREAT day everyone!

Day To Day Living With Heart..Failure

First of all, let me say flat out, I hate that word: Failure.  Ugh.  Even worse: Heart Failure.  Double Ugh.


Sometimes I feel like saying UP YOURS medical professional.

My heart may be not quite up to snuff these days, but it's done a REMARKABLE job of getting me this far. I found a site that estimates how many heart beats I have had since the day I was born, and for me that number is:


1,695,879,288!!  (You can check yours too, here:   Heart Beats and Breaths Since You Were Born)

So that's not bad for a supposed heart FAILURE.

Yet I see HEART FAILURE on just about every pill bottle and medical form that comes my way.  And it seems like it's on the tip of the tongue of just about every doctor I speak with these days.

HEART FAILURE HEART FAILURE HEART FAILURE HEART FAILURE HEART FAILURE

It gets kinda old. I think I might ask the doctors not to say that around me.  I'll probably get the deer in the headlights look, and this may be silly perhaps, but who, or what, like's to be called a failure??
                                                                                 

heart MALFUNCTION    heart BREAKDOWN    heart DECLINE

        heart GIVIN' ER ALL SHE'S GOT JIM 

Anyway, day to day living is getting more and more challenging.  Maybe part of it is the recent heat wave of shorts we've had here in Iowa.  And it's not the heat so much, as the stinkin' humidity.   Thank goodness for air conditioning.   But even in the air conditioning I am super tired.  Slept almost 12 straight hours last night, got up, had a bite to eat, and slept another 3.  And it's deep, dead to the world, sleep.  And even now I feel like I could sleep 4 or 5 hours more, no problem.

That's the biggest symptom for me right now, is this nearly constant, debilitating fatigue.  And it gets worse if I try to actually exert myself.  Like empty the dishwasher, or climb a flight of stairs.  I just get out of breath so quickly(dyspnea), and my heart starts to feel like it might come out of my chest.  And that feeling is kind of scary at first, but I am used to it now...which is weird.  I do a lot of sitting on the couch these days...and that's not like me.

And I do seem to be coughing more, for no good reason.  And my legs hurt some times.  Both symptoms getting worse, almost daily it seems.

But the good news is I've really never had chest pain, and remarkably I don't seem to have any of the fluid retention that is common in heart failure.

FYI, I am currently classified with Class III heart failure, but I have to be darn close to Class IV.

Class	Patient Symptoms
Class I (Mild)	No limitation of physical activity. Ordinary physical activity does not cause undue fatigue, palpitation, or dyspnea (shortness of breath).
Class II (Mild)	Slight limitation of physical activity. Comfortable at rest, but ordinary physical activity results in fatigue, palpitation, or dyspnea.
Class III (Moderate)	Marked limitation of physical activity. Comfortable at rest, but less than ordinary activity causes fatigue, palpitation, or dyspnea.
Class IV (Severe)	Unable to carry out any physical activity without discomfort. Symptoms of cardiac insufficiency at rest. If any physical activity is undertaken, discomfort is increased.

From the NYHA (New York Heart Association Functional Classification...widely used)

Bottom line, it is what it is.  I try not to fret about it too much.  But I have had to learn to roll with the punches, and do what I can, and only what I can. Which is very hard for me and my stubbornness, cause I really don't like to at least not TRY to do the things I used to be able to do.  But I increasingly pay the price for not accepting this new 'normal'.  And I understand and accept its probably going to get worse before I get the call.

So now, I'm going to go take a nap, and try to recharge.

Make it a great day everyone!

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!