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Wednesday, May 30, 2012

Calculus is not taught in 1st Grade

So after my last post I figured I needed to get engaged and meet with my doctors to make sure I had fully considered the risk of waiting a year.  After lengthy discussion and reflection we have decided that that is not in my best interest.  As my doctor explained it comes down to perception and how numbers can manipulate or distort reality.  It seems simple to say 15 years after transplant and 1 or 2 years on the device maximizes that time (15+1, or 2....).  The reality is that I probably have some level of risk of an adverse event occurring, significantly higher than any healthy person,, that I have grown to tolerate on a daily basis. Similar to a soldier making a foot patrol in hostile territory.  You just get used to it and after awhile ignore it.  If that risk is say 5% and I were playing the lottery I might take those odds if I thought I could win.  If on the other hands that represented risk that something devastating would happen to my family on the next car ride I would never take those odds.  So, how can I take them with my life? So after much reflection I have decided to take my 1A time starting on June 18th.  I have 30 days of it coming to me for free (meaning no time in the hospital).  Hopefully I am blessed with a heart in this time.  I think about everything I can do now and it is bittersweet because I can't swim with my kids or run or road bike.  I don't feel bad about that at all (well I do miss swimming with the kids a lot!), but I think by not challenging myself to move forward and get my life back unencumbered by cables, batteries, and shower bags, I am actually doing the 1 thing I swore I would never do, define my life by heart disease.

We were running a straw poll around the house on what date I would get a new heart.  Unique things that you don't think about unless you are going through this, but hearties celebrate a 2nd birthday....the day the receive their new heart.  How cool would it have been to get a new heart on my birthday in June?  The kids chose that date of course.  Unfortunately that won't be the case......maybe 4th of July?

The real countdown.....18 and a butt days..............

Tuesday, May 22, 2012

1st grade math

Today in my email was a link to a story about a gentlemen from my hometown who has twice been transplanted.  I met him last Christmas and we talked on the phone several times.  It reminded me that Thursday was the day we planned to start my 30 days of 1A time.  As things sit right now, we are not going to take the 1A time.  Last Monday I had pulmonary flow tests (PFTs), a right heart catheterization, and the vampire came to see me.  My tests all look very good and in light of how well I have done this past year my doctors think I am a good candidate to wait another year before starting the transplant process.  For every  year this LVAD lasts me it adds another year to my life (as a reminder the mean survival for heart transplant is roughly 15 years) and delays the immunosuppressive therapy that I want to avoid.  That is the crap that will kill me in the long run.  Awesome that I have earned the right and the faith of my doctors to participate in making this decision. As I have learned, this process is like choosing something to watch on cable.....the fewer choices you have the easier it is to chose.  In this case the more options you have the harder it is to make a choice.  There is NO book out there to make this decision and anything that I factor into the process ultimately feels hedonistic compared to my health.  Do I want to move or do I need to move?  Do I want to accept the promotion for work or do I need to take it?  The only way to take the wants out of the equation, or so it seems to me, is to put my family first.  Doing so tells me that choosing to stay on the LVAD another year, rather than "electing" to be transplanted, is the best decision based on something that really matters, my family.  The wait takes on a life of its own and it is hard on everyone around me, even when we don't talk about it.

I have had many people reach out to me the past few days for an update on what we are going to do.  People I haven't heard from in a long time, people I didn't even know knew.  I can't tell you have much that means to me that people care.  All I can say is thank you for the thoughts and prayers.  And thank you for reaching out!  It has been great to reconnect.

On a much more fun note, we went to see Van Halen on Saturday night, sat front row, center stage.  Amazing. See a couple of pictures, one of which shows me and the LVAD.  To quote the security person when we entered the arena, "What the hell is that, and can I touch it without killing you?"  Lol, suffice it to say security was easy.

Tuesday, May 15, 2012

The Final Countdown

It has been awhile now since my last post.  Time has been marching on.  I was in clinic yesterday for Pulmonary Flow Tests and a right heart cauterization.  Not too bad, but a very long day.  My case is going before the transplant committee tomorrow for the final determination on if I go to be elevated to 1A next Thursday.  In talking with one of my doctors yesterday at the hospital I think they may leave it up to me at this point.  The trade-off to be made is balancing my current health (which is good other than the heart failure and LVAD) against the risk that the pump could fail at some point in the future.  How do you decide when to have a transplant when you are otherwise healthy?  Please tell me:-)

I was at Baylor Heart Hospital in Plano, TX last week and had a really amazing experience.  I was taking questions from nurses about living with a LVAD and discussing in general the patient perspective.  One nurse approached me and after a short discussion shared that her son had donated his heart 20 years ago.  We had a moment and talked about the courage it took to make the decision to donate, and how happy she is that he made that choice.  She has built a relationship with the woman who received the gift and she talked about what a wonderful lady she is.  It was an amazing moment to be there and share it with her.  I hope that I have that type of experience with my donor family.........So, more to follow after the transplant committee meets tomorrow.  8 and a butt days...............