Great Story

Just watched the first two segments of this video.  Pretty awesome.

Montclaire State University Student Heart Transplant

Friday the 13th........

Spent some time today at the hospital volunteering and supporting the doctors. Discussed my wait on the list and where I am at. What happens if I don't get a heart during my 30days on 1A? I was told it could be another year and a half before I get a heart. Wow, the wait at this point is starting to take on a life of its own. Hard to be mentally sharp and read for the effort it takes to be focused and ready for all the heart work. 42 and a butt days...

Telling the story

I am in Dallas all week for work. Great to see everyone again including my friends who are around the world but came into town. Lots of questions about this stuff hanging off of me which leads to shock and apologies etc. just ready for the next step, feeling hard to concentrate on things at times. I have been thinking about being back in the hospital and starting from scratch. Also have been wondering where I am on the list as a 1B since my transplant center won't tell me. 44 and a butt days.......

April is "Donate Life Month"

How exciting.  Too bad it doesn't make a good Hallmark Holiday so nobody advertises it and it doesn't appear in any media.  Beautiful morning here and the kids were excited that the Easter Bunny came.  Looking forward to brunch and the Masters.  Last year I watched it while in the hospital.  I have started to think about 1A time, now that there are 47 days left till I move up to the top of the list.  I find myself drifting into thought...questioning am I afraid or am I excited.  I lost some weight this week which made me feel good.  Just a couple of pounds but it puts me smack dab on the goal weight I want to maintain.  I have been questioning if electing for transplantation is the right step.  I had a great and very exciting conversation with my good friend Chris about cycling, which I can't really do right now due to the blood thinners I am on as part of the LVAD therapy.  Between blood thinners and wearing cycling shoes that clip in to the pedals.....that makes for a bad day if I fell while on the bike.  To say nothing about the driveline and other attachments hanging out and off of me right now.  Thinking about what I could do after transplant that I cannot due right now definitely makes me lean strongly towards a transplant.

I am trying to figure out how to make comments that people leave me visible to everyone.  If you know how to do that on the blogspot.com tool please let me know.  Happy Easter to everyone.  47 and a butt days............

Finally Got out to Golf

Spent a wonderful day on the golf course today.  First time this year.  Wasn't bad actually, great weather and the golf was good.  Trying to golf with the LVAD is certainly interesting.  Thought of the day today was can't wait to golf without the LVAD.  49 and a butt days.........

1 Year with a LVAD

April 4th, a date that will always stick with me.  How could it not.  I had my LVAD impanted a year ago today.  As I was walking the halls at work today I found myself wondering when I will see most of the team again.  I was asked about 5 times today what the contraption is that I am wearing.  Lots of well wishes and disbelief from those that don't know the story.  51 and a butt............

Long Days

Hard to keep up with writing on a daily basis.  Yet another reason I am NOT on Facebook, lol.  I traveled again yesterday to Dallas for work.  It isn't so bad when I get upgraded.  However, what does get old and serves as a constant reminder of the fact that our society is not educated on heart disease, is the constant shock of either TSA agents or airline personnel telling me I am too young to have heart disease etc etc.  So much opportunity to educate.  The days are long hauling an over-size carry on bag with all the LVAD gear, plus an extra checked bag for the shower bag and work out gear I always bring.  I still find myself double and triple checking myself and my gear to make sure I have everything.  Last night my surgeon shared some newly available information regarding LVAD patients and mean time to recovery being longer than previously thought.  That is a lot to process less than 2 months to transplant or 1A time.  Lots of thought about immunosupression and side effects of drugs.  52 and a butt days.............

No April Fools here

Can't believe it is Sunday night at 9:00 PM.  Very long but very exciting weekend spent training and ultimately earning my certification to be a Group X instructor at the YMCA.  In short if I earn any training certifications I could teach Turbo or Group cycle, or spinning as it is called.  I found myself feeling very thankful the entire day and reflecting a lot on where I was a year ago today.  I was asked to share my story with the training class this morning which I did.  I felt like I was reliving the experience all over again but I got through it and got a standing ovation at the end.  When I came home I cooked dinner and celebrated John's 9th birthday.  He was so happy to show me all of his gifts and play April Fools jokes.  He laughed so hard at candles that re-lit once he blew them out I thought he was going to wet his pants.  Tomorrow it is off to Dallas.  I am dreading travelling, not because I don't like it but it is SO much work hauling the LVAD around and I am constantly afraid I am going to retain fluid.  I am ready to be done with the LVAD.  More tomorrow............