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!