Great LVAD article in Wall Street Journal

Now that Mechanical Circulatory Support (MCS) is becoming a better known therapy option, articles like this one do a great job of telling the story.  I wish I could say I would be explanted, but the truth is the quality of life I have with my LVAD (nicknamed Denny), is worth it knowing I will get a new heart sometime, hopefully soon.

Met another heart failure patient today, someone who is going directly to transplant.  He and I might be buddies before too long.  And, he knows how to play poker (hopefully spades too).

Check this link out:

http://online.wsj.com/LVAD article/

Is congratulations the right word?

I haven't posted in awhile; life has a way of moving on.  This past week I went to clinic for my 2.5 year follow up and did the normal stuff (labs, echo, pacemaker clinic, visit the docs).  I have been trying some new driveline bandages and have developed a skin infection on my driveline site.  I am now on antibiotics and have been put back on 1A, the top of the list.  If I am not transplanted during the time I am on antibiotics, I will have chemo to lower the level of my antibodies.  Then I will be hospitalized to wait for a new heart.

I shared this with my coworkers and peeps the past few days.  People say "congratulations" when they hear that I am 1A, and then we look at each other wondering if they said something wrong, what should I say back, etc.  There is no inappropriate response, but I am not sure there is an appropriate one.  I guess this is another one of the things in this journey that there isn't a book you can read to figure out how to answer the question.

I am both excited at the prospect of getting a heart, since being 1A is what I need, but it does make me spend more time wondering if today is the day.  The phone hasn't rang since I went to 1A on Thursday, but I have had dreams each night about it.

I am definitely ready to be done with the LVAD.  I love my Heartmate II, I have done so well with it that I sometimes forget that I have this device.  But I am quickly reminded as I tie my shoes and the batteries smash into my head, or I get out the car and the batteries are wrapped up in the seatbelt, that things aren't normal.  I am ready to be waterproof, to swim and run again, to be able to play my guitar and not hear the hum of the pump.

Several of my LVAD friends have taken the next step and received the gift of life in a new heart.  I can't wait to join the ranks............

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