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.