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!