Life on this Journey...(Tammy)

Hey everyone...normally Eric writes blogs here but I asked him if it was OK if I gave it a try.  He is an amazing writer and loved to blog a lot on this journey.  It was healthy and cathartic for him at times.  But I understand why it became difficult.  It is like a child waiting and counting down until Christmas but for him, it is counting up and waiting for a life saving gift.
I thought with the fund-raising page it might be nice to have my perspective as well.  This is not meant to be about me but what we both go through on this trip.  And today happens to be 2.5 years on the list exactly...August 22, 2014.  So here I go, bear with me.
There are times in life when you know that you are not alone on a journey but there are days when you feel there is no one else but the 2 of you pushing through this.  Then people from your past, and even present, become a shining beacon and you are so grateful for the friendships you made that are still there to encourage you to keep going.
People come and go in life and we have to be thankful for each and everyone of them.  Woman were often taught to be dependent and reliant on others.  I wouldn't categorize myself as dependent on others but never really saw myself as "strong".  Then I sat back one day and reflected on the things in my life and realized people don't experience some of the things I have without coming out stronger.  I survived a car accident at 18 that I never should have, much less remained a functioning human who could take care of myself.  I have experience death of loved ones, a young niece and nephew too soon, that I thought would never stop hurting.  I lost my father a year and a half ago and he was the strongest, most stubborn man I know and I felt the tears wouldn't stop.  And you know what...I am still here and stronger than I ever believed.
And there is Eric...he has gone through so many things in his years that I cannot even imagine.  He has endured heart surgeries from infancy, heart procedures through his life, the loss of friends and family, and now the journey of transplant.  He is one strong person and I hope I can keep up.
We all make choices in our lives, some that others don't understand.  But I, even through this journey, have never questioned my choice to be with him by his side through it all.  No we are not married, no I am not bound by a paper to be here, but we wear rings and yes I am here and I am staying here.  (For those of you that don't know me...I am the sappy one.  When we found out about transplant, I needed him to know that I was not going anywhere.  So we exchanged rings as our commitment to each other)
So there it is...life is never easy but it is what you make of it.  You can go through life angry and resentful but that only hurts you and the ones closest to you.  I am not trying to say that our journey is harder or more difficult than anyone else because you never know what anyone else endures within themselves,  But we have an amazing, beautiful new home, we try to laugh and joke every day and some days are not perfect, but we always make sure at the end of the day, the other knows we love them.  Relationships are never easy, and they require work, and at the end of the day, it is worth it when you go through the work to make them special.
I hope you enjoy this...I would like to continue as we move along on to transplant with Eric.

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!

Compassion Feels Good

It’s not hard to see why I have a bit more of an interest in getting folks to think about signing up to be organ donors.  I’m kinda going to need one of these days.    

And so do a whole bunch of other folks, 120,801 are waiting today, right this very minute, according to the United Network of Organ Sharing.
People ask me quite often, ‘So what’s the deal…why have you been waiting 21 months?’  But it’s not like we can go down to Wal Mart and pick up a 22 year old O+ blood type heart, defect and disease free….the Ironman Triathlete Pro Edition.  Man, wouldn’t that be awesome.
But that isn’t how it works.  About a hundred things have to perfectly align to be the one to finally get THE CALL.  And it ALL starts with people agreeing to be organ donors when they die.   Not enough people are doing that right now.  No Donors=No Calls.   Simple as that.
Fortunately, more and more people do indeed get that call every single day, and I am sooo happy for them.  But on average 18 of us won’t make it to see tomorrow…they’ll never get that call.  And that stinks.
So it behooves me (ha…behooves…I love that word)…it behooves me to try to get more people to consider organ donation.   I don’t want to be one of the 18.  Ever.
I think about ways to do that all the time.  And it’s been hard, for me, because it seems kinda selfish in a way to ask for something so personal as one of your organs for goodness sakes.  
But I know people like to feel good…and the whole notion of ‘what’s in it for me’ certainly is part of the equation too.
So I was thinking about how people rally around each other in times of natural disaster.  Think of the thousands and thousands of folks who filled sandbags during floods here in Iowa in 2008 or the tornadoes that wreak havoc seemingly on a weekly basis…and the whole town practically shows up with chain saws and baloney sandwiches.  Or the farmers who help their cancer stricken neighbor harvest those last 30 acres before the snow flies.  And there are countless others examples, the point is you really do see the best in the human spirit when your fellow man is up the proverbial creek without a paddle.

To me, all that help is just…compassion. And it feels good to help out when and how we can….to show a bit of compassion for the plight of others once in a while is a good thing.  Heck, I think it’s just about the best thing you can do, and one of the best feelings you can have!

Compassion…feels…good.

So my approach from here on out I think is gonna be to remind people of all the times they have either been the one who showed a bit of compassion, or better yet, been on the receiving end of a little compassion.   And how did that feel?  I bet it felt good.

Compassion.  Feels.  Good.

That’s all organ donation is.  Compassion for your fellow man.  And a chance to feel good about knowing you are going to help someone even when you think you no longer can.    But the kicker is…every single day, from the day you become a registered donor...you can tap into that good feeling knowing you are doing what you can.  And we all like to feel good right?

COMPASSION FEELS GOOD!

pssst...you can register today at www.donatelife.net

Still Waiting...But That's Ok

Still Waiting.

ZZZZZZZZZZZZZZZ.  

Almost 14 months now.

Still need a new heart.  Hello?  Is this thing still on?

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!