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Saturday, March 31, 2012

Today for Yesterday

I ran out of time yesterday.  I had intended to post every day during the last 60 days.  After working all day I went to Group X Fitness instructor training at the YMCA.  I broke a big pile of Don't Do Rules as an LVAD patient.  I did kick-boxing, Turbo-Kick, and kick-boxing MMA class.  This guy won't be on "So you think you can dance" any time soon.  Lol.  But I did it and it was awesome.  Back to 8 hours of class today.

Thursday, March 29, 2012

Where were you 1 year ago right his second

I can answer that question quite easily.  I was in a hospital bed dying.  I will never forget it, it seems like last night and yet it seems forever ago.  I remember so much and yet I have forgotten it seems anymore.  I will never forget arriving at Abbot and the shear chaos of Dr.'s, nurses, and technicians working on me.  I wont forget Dr. R. asking me where my family was because I might not make it through the night.  I won't forget Dr. Sun sitting at the end of my bed rubbing my feet and keeping me calm and explaining to me the options I had to save my life, LVAD or transplant.  I won't forget my parents arriving or Heidi arriving.  For those of you keeping score at home, it was the 31st of March.  My son's, John, birthday is April 1st and I was afraid I wouldn't live to see it.

We have set a date to take my 1A time.  May 24th.  Coincidentally it is about 2 months from today.  I think I am going to try and post everyday what I am thinking.

Since Saturday night organ transplantation has been a very popular topic in light of Dick Cheney receiving his heart.  Since he and I had the exact same LVAD model, I think about his experience.  The Cheney effect as I call has helped me explain to others what an LVAD is.  When people ask me to explain I say, "oh it's the exact same device Dick Cheney has" they suddenly know exactly what I am talking about.  Magic:-)

I find myself feeling three things a lot.  The first is the complete fear of anti-rejection med complications.  I have been lucky so far in that I have tolerated all medications without side effect, at least that I am aware of.  I pray that continues.  I think about it a lot.

The second thing I feel is wow, I have a lot of energy.  I have been working on my honey-do list, most of it is self imposed.  I squeeze working out, work, golf lessons, yard and house work in around everything else.  Amazingly I have fun doing it.  I just took my first certification test to become a National Fitness Instructor at the YMCA and I passed.  Yeah for me:-)

Lastly I am dreading the two weeks after surgery.  No getting around it but just being back in the hospital, split open and needles and IVs sticking out my arms, neck, chest etc.  Small price for what I get out of it but I have to tell you it is hard.  Just need to suck it up.

I guess that is all for now.

Tuesday, March 13, 2012

Thoughts

I have not really posted anything in awhile about what I am thinking.  Lots going on these days.  We have talked at home and settled on May 24th as the day to opt into our 1A time.  1A means I am at the very top of the transplant list and I cant go anywhere or do anything because I could get the call at any moment.  This is significant because this 1A time is my 30 days "free" that I get because I have a LVAD.  I have my next LVAD clinic appointment on April 11th and from there we are about 6 weeks from 1A.  Lately I have had a mix of emotions and thoughts:
1) I am definitely ready for the next step.  It has been nearly a year since my crash and I am in a great place and feel great but I really want to not have something sticking out of me, to be able to shower without a 5 lb. bag hanging around my neck and I am SO SICK of the itching from when I change my dressing.  I find when I take the kids to swimming lessons I just want to shut my eyes and fall into the pool.  I miss swimming with them.
2) I am running out of time to get everything done.  Not that there isn't a future beyond this next step but most people go through life and can't tell you hey on  May or June XX I have a 5% chance of dying.  In my mind I do sometimes have that thought.   Its not about being morbid, I guess it is just that the hurdle I have to jump over on that day is huge and so I can't really allow myself to look beyond.  I think it is important be in the "1 day at a time" mindset until I can drive again and stop having biopsies every week:-)
3) I have a huge list of projects I want to do around the house.  Shelves to be hung, shelves to be built in the basement, a fence to be built outside, another fence to be painted, a foundation to be fixed etc etc.  Each one is a full day project or more.....so if I have 8 weekends left can I get them all done.  GGRRRRR.
4) I want to take my kids, 1 at a time, out of school for a daddy hooky day.  We can go do whatever they want.  There day with me.  Twins game, mall of America, Five Guys...whatever, I don't care.  Just want a day with them
5) Golf.  I have started taking lessons and have set it up with work to take a couple or 4 Friday's off leading up to the 1A date.  I just want to clear my head and be in a good place.  I want to play bogey golf or better again and I hope these lessons get me going.  I have had 2 already and I love what I have learned.
6) Group Fitness Instructor - I am sitting for the training to become a national cycle instructor so I can teach group cycle or spinning at the YMCA.  That is in two weeks.  So I am scrambling to get my CPR/AED training done.  This one seems crazy in light of everything else but to me it makes the most sense.  In my daily workouts I feel like I have leveled off.  Not a good place to be since emotionally I think you need to be challenging yourself.  I have strong desires to run and compete athletically on the other side and by become an instructor I can get in the mindset to start training now.  I can't wait.
7) We have so much left to plan.  Being the nerd that I am I have built a spreadsheet tool for how to have a transplant.  Based on all the books and blogs and articles I have read I have compiled the list of suggestions from people and made this tool.  What to pack, who to call, what to do blah blah blah.  Just like being 40 weeks pregnant.  When the call comes is not the time to crap your pants and say what do we do.  We have a lot left to do.........will signing, power of attorney signed, HC directive signed and delivered to appropriate people, call lists, child care etc.  We just need to review it.
8) Fundraiser.  This is a big one.  I have read repeatedly that people WANT to help but they are afraid to approach and ask how and don't want to be a nuisance.  We know we cannot do this on our own and are partnering with the YMCA to do a fundraiser.  We are just beginning to figure out when and how and what it will entail.  Need to get engaged here.
9) Starting from scratch.  When I reflect on the last year, how much I have gone through, how it has impacted everyone, and gosh here we go again.  Surgery, recovery, coming home, cardiac rehab, sleeping on my back, medications, don't do list etc.  I think at this point the waiting is the worst part.  Which takes me back to where I started this.

I am ready for the next step.  72 and a butt days....................

Thursday, March 8, 2012

THE Game Changer

Chimera.  Look it up.  I have seen this therapy reported twice before but today it was on CNN.  Considered the holy-grail for organ transplantation and other advanced medical therapies.  I would sign up for this in a heart beat, pun intended.   This is exciting stuff.

Sunday, March 4, 2012

What's next, bubble gum and duck tape?

Read an amazing article today about the advances in treatments for advanced heart failure.  I don't think this will save me from the transplant buffet, but it may save others in the future.  Check it out:

Injectible Gel