It's on the internet, so it must be true

I was asked a few months ago to tell my story on camera for the transplant center where I am under care.  they published a video last week on youtube of it.  Here it is.  Let's get to 1M hits:-)  Bring on Psy.

http://www.youtube.com/watch?v=9P6BYSpE4_Q

17 years too late

When I played baseball at West Point Derek Jeter was still in Double A but we all knew he was going to be in the major leagues.  In 1994 he ate breakfast in the same room as us at the Holiday Inn Express in Tampa, Florida and Jorge Posada gave me a bat.

Army to host NY Yankees in Exhibition

Insanity Month 2 and other updates

Happy New Year.  It has been sometime since I wrote here and I have a number of thoughts running through my mind.  Should you be bored or having trouble sleeping then by all means keep reading.  In no particular order:

• We started month 2, or week 6 of Insanity on Monday.  The first four weeks were hard enough though admittedly they got easier as time went on.  This was followed by a recovery week that still had me choking on my sweat, but much easier.  Typical work out in month one is about 35 minutes door to door.  Month 2 started with a 25 minute fitness test, to compare performance to your day 1 baseline fit test, and a 58 minute work out.  From my view here in the front row I can safely say month  1 was child's play.  But, it is working, I do have to admit  and while I hate getting up at 5 AM I do find my days are more fulfilling starting out with a great work out.
• I changed jobs on January 14th.  While otherwise no big deal, changing jobs while active on the transplant list and wearing a medical device that is scary is no easy proposition.  It seemed ludicrous to consider doing it, but like everything we did this past year, I found it to be very liberating to not let heart disease define me.  I cannot attenuate other people's fear for me, and have to make decisions based on what is best for us.  There truly is no book you can read about if, when, and how to tell your new employer, "Oh by the way I have end stage heart failure and need a transplant."  In the end I chose to view it as my problem, not theirs, employee provided insurance does come with risk for the employer too (after all I am just 1 employee amongst 91,000), and this is really nothing different than pregnancy.  While you are laughing let me explain.  I will get the call, hopefully, and go have my surgery.  Barring the unforeseen complications and dreaded disaster, I will be able to return to work in 8 weeks.  Should you be wondering I did cop to it prior to getting an offer and was commended for the courage to be so transparent.
• Heart month is a few weeks away.  I have been nauseated at the thought of pursuing any opportunity that would draw attention to me from this disease.  However I do feel that my story and the great care and research done at the Minneapolis Heart Institute are noteworthy on a grand scale.  One small fact that attests to this is the fact that Minnesota is the only state in the US that does not list heart disease as its leading cause of death.  I petitioned our local NBC affiliate with some facts and a potential story for heart month (Disabled Veteran, tragically diagnosed with heart disease, cheats death, becomes national fitness instructor while actively waiting for transplant blah blah blah) but was told not interesting and not national news.  disappointing, but I guess how do I compete with The Voice or American Idol, two truly great, nobal causes for mankind.  I also pointed out that heart disease kills 10x more women than breast cancer and more women than all forms of cancer combined but gets almost no press.  I  challenge you during February to count how many heart disease stories, and in particular those for people under age 55, you see.  When I saw pink bats, and pink cleats, and pink penalty flags it really gets me fired up.  Nobody loves a healthy set of breasts more than me, but is it more newsworthy than heart disease?  Are you doing all you can to make it better for those behind us, those not yet afflicted?  Maybe it is because people see heart disease as an express ticket to a ugly death, versus cancer (cut it out, lose your hair, get on with your life) which can be beat.  I have not had cancer, though I know the deck is stacked against me in the future.  It is cruel and I don't know what it is like to suffer with it.  But I do know what it is like to feel like you are drowning for 7 straight days and I can tell you, it sucked!
• Loved the story about the woman who held her dead heart after being transplanted.  I want to see mine after surgery.  I am sure it sounds morbid, but to truly stare the tiger in the eye and know that I won.....I just cannot explain it.   It would be like Superman looking at kryptonite.  In case you missed it....Woman holds her old heart after transplant

I guess I will wrap up now.  The "wait" truly does take on a life of its own.  I don't spend time thinking about it, but that doesn't mean ever or never.  As Jon Bon Jovi famously said, "Sometimes when you're alone, all you do is think."

This is Insanity

So we took the plunge and started the Insanity workouts yesterday.  So much for thinking I was in shape, lol.  After the 25 minute fit test which left me on my hands and knees in a pool of my own sweat on our cold basement floor I realized this is INSANE!  Today was day 2 and it was 40 minutes.  I ache all over and am exhausted.  But we are not quitting.  So we will see what happens in 60 days:-)  I will say that for me the best part of this is having my LVAD holster slinging over me like a cargo net or when I am sweating into my eyes I feel like a giant octopus is wrestling with me.  But then I finish and ask myself how many other heart failure patients awaiting heart transplant are doing INSANITY:-)  As my NCOs used to say in the Army, pain is weakness leaving the body.  I must be pretty weak then:-)

Read all about it: Organ Donation

This is a great call to action.  Please pass this article on to anyone and everyone you know.

a-tale-of-two-transplants


Halloween pictures

Welcome to the Board

After the Minneapolis Heart Institute Gala I had the opportunity to have lunch with the President and CEO of the Heart Institute Foundation.  During that meeting I was asked if I would accept, if nominated, an offer to be on Board of Directors.  Long story short I was and I did.   I am not 100% sure all what this means but I think we help provide input and guidance as to the direction the institute moves from a research perspective, marketing, branding, community interaction etc.  Very exciting to me.

RRRAAAAA-OOOOOLLLLLLLLL, Let's go Yankee's

18 months post implant - clinic up date......Where has the time gone.  I had clinic yesterday and I didn't even realize that it had been 18 months since my Heartmate II LVAD was implanted.  It seems like it was yesterday and yet so long ago.  There are times where I am startled by reminders of my stay in the hospital.  Grey's Anatomy just started a new season and something new is the personal phones all the characters have.  They make a chirp instead of a ring.  I know this because all the clinicians at Abbot have the exact same thing.  I felt like Pavlov's dog hearing the chirp and looking for a nurse.

Clinic was unremarkable and eye opening at the same time.  I feel great and my blood work was all very good.  However my echo came back with an EF of 15.  I have to admit that this is surprising given that my workouts have continued to improve steadily.  My chamber volume is back to 5.9, down from the 8.5 cm when I was first sick.  The doctor astutely pointed out that the echo serves as a reminder that while I am doing very well on the surface, but behind the scenes my heart is "profoundly" compromised and will never get better.  He said it is a good reminder for everyone how fortunate I have been.  I left clinic reflecting on our conversation and how truly lucky I am to have tolerated this therapy so well.  It was pointed out that every day I am not transplanted is a day closer to a cure, a day without immunosupression drugs, and another day that the clock doesn't start ticking down.  I have so much to be thankful for and it surprises me how at ease I really am with where things are at in my life right now.

I ran at the gym tonight.  I just needed a break from the elliptical.  Someone can only do the same exercise for so many straight workouts.  I have been on the elliptical since June of 2011, I needed a change:-)

How about them Yankee's