A new Olympic Event - Transplant Coordination

This is a very interesting article found in the NY Times.  It talks about the delicate and precise coordination necessary for a successful transplant.  While the article is about pediatric transplant the same applies, I think, to transplants of all ages.  Here is the link:

"giving-a-child-a-new-heart"

Last week the season finale NY Med the focus was on a cardio thoracic surgeon at Columbia Presbyterian in NY.  The last vignette was a transplant of a 60 something male who had a Heartmate 2 LVAD.  Very interesting to watch.  For me it was curious to see the old heart come out, looking like a deflated Walmart bouncy ball, the kind that we all love to bat out of the cage in the kids toy section, and the new heart looking like it was cut out of a thoroughbred.

Just finished the Minneapolis Duathlon

They claim it is the world's largest duathlon.  I finished in 2:09, which was 110/123 in my age division, and 540/630 for the men.  My goal was 2 hours.  My first run was 34:02, the 18 mile bike was 54:18, and the last run was 36:54.  I hit a wall at the 2 mile mark of the second 5k and while I HATE to admit it, I had to walk.  I had nothing left in the tank.  There was one major accident on the bike course, and it did look very bad, at least 10 bikes were piled up and a cyclist was down and not moving.  I am pretty sure I was the only competitor with heart failure and a LVAD so all things considered I think I kicked butt.  On to recovering...............

Interesting Debate

For anyone who has been touched by Autism this article really touches a nerve.  Doing my best to avoid all religious and political implications....but if we would give a heart transplant to a prisoner with a life sentence or on death row as we have seen in recent years, why would we EVER deny an autistic person the right to live.  What choice did they have in the hand that they are dealt?

paul-corby-autism-denied-heart-transplant

No Soup for You 1 Year

I officially came off of 1A yesterday at 12AM.  My 30 days has passed without having received the gift of a new heart.  I think I am ok with that.  While I am definitely ready for the next step I am aware that I am doing well with my LVAD and continue to push myself to take on new challenges.  So if I have to wait another year or so until I get the call so be it.  I can't say I am not happy that I get to avoid anti rejection therapy for a bit longer:-)  That is the silver lining.  And there is always the possibility of a miracle happening before I get the call:-)  I am pushing myself to compete in and complete the Minneapolis Duathlon at the end of the month.  This is a 5K run followed by a 15 mile bike ride followed by another 5K run.  I can do each of those by themselves....the challenge is doing all of them one after the other.  I have a completion time in mind but I wont say anything till after the race.

Update 27 days in

Tick tock, tick tock, tick tock.  Time marches on.  No call has come in the first 27 or so days on 1A.  Funny thing is that during my time on 1A I have received a call from a LVAD friend that got her own call while on 1B, and another was just put on 1A like me.  In the end it was a dry run as we in the field like to say, lol.  I continue to be in awe of the amazing attitudes of the people who are fighting this each and every day.  Here we are, each one of us, anxiously for the call to come for a HEART TRANSPLANT and what I feel inside is that it is about to be the kick-off at the Superbowl.  Bring it on!  I think I am going off 1A for about 5 days due to some activities at the hospital and then back on for the last 5 or so.  Since my last post we have finished unpacking from moving ourselves across town.  So much for hurry up and wait.................

Quick Update

Wanted to check in with everyone out there who is following me on this journey.  I am 20 days into my 30 days of 1A time and no calls as of yet.  We are hopeful that something happens between now and the 25th.  Attitude is good, physically feel good, and all around all systems are a go.  Even managed to move across town during this.  Fingers crossed and waiting for the call.

Interesting Debate......My vote....don't change the rule

Very interesting debate going on about LVAD patients and our right to 30 days of 1A time without hospitalization.  The arguments that Dr. Pinney points out are absolutely true....knowing that I had 30 days to use at some point in the future strongly influenced my decision.  What do you think?

Should LVAD patients get 30 days of 1A time?