Engineering hearts

Regenerative medicine is getting some amazing press this week:

http://mashable.com/2013/07/10/tissue-engineering-for-heart-transplant/?utm_campaign=Feed%3A+Mashable+%28Mashable%29&utm_cid=Mash-Product-RSS-Pheedo-All-Partial&utm_medium=feed&utm_source=feedburner&partner=skygrid

2 Year Anniversary April 4th

Hard to believe it has been two years since I had my LVAD surgery.  Things sure have changed in two years.  Two years plus 1 month ago I was literally nauseated at the thought of going to the hospital for any reason and now I am perfectly at ease when I go there.  I viewed doctors then as arrogant and disinterested in my health, waiting for something to happen to me so I can be analyzed.  Now I am surrounded by a "care family" that is cheering for me and helping live as long a live as possible.  I saw my picture last night on an LVAD website and my first reaction was wow, my activism is getting noticed.  My second thought was, "oh crap, it's on the Heartware site (the competition:-))".  My cycle class, the one that I teach every Saturday morning at the Andover YMCA, gave me balloons and a big card signed by everyone last Saturday as it was  my 2 year anniversary of arriving at the hospital.  I was surprised and humbled by their comments while bursting with pride that I inspire them.

Two years also means two years of waiting.  Time marches on with no indication of moving higher up the list.   Waiting, waiting, waiting, like Poe's "Tell Tale Heart."  I am looking forward to the weather turning if it ever does here in MN.  I am anxious to get outside and golf.

Telling the story

The attached is a video of a speaking opportunity I had in February in Nashville, TN at the Annual Meeting for Specialty Care.  Specialty Care provides hospital services such as heart-lung bypass equipment, ECMO, ER services etc.  They invited me down to tell my story and connect with their team.  I got to follow their CEO on stage and make some remarks.  They were kind enough to video tape it and provide it to me, so here it is:

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:-)