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Monday, July 13, 2015

The End of Book 1

I return home tomorrow after 10 days with my family in NY.  We buried our dad Thursday of last week.  The wake was the night before and went a full hour longer than it was planned.   Hard to capture in words the loss I feel right now.  Call me naive, even having gone through this as a patient, but I never considered an adverse outcome and never death when my dad went into surgery.  I wish I knew that when I said goodbye as I was boarding the plane that it would be the last time I ever talked to my dad  with him fully healthy and in his right mind.  When I left the hospital three weeks ago I never ever thought I would never see him again.  I have been struggling that I may have pushed him into getting a transplant because I did when he wasn't ready.

I have come to view his passing, at least right now, as the "end" of Book 1.  I have been asked to write a book and consider doing a TED talk after my experience last summer and I balk at that, it seems attention seeking.  I always said in due time I will understand why and how.  My father passed away at 7: 54 EST on July 4th, 2015.  I came out of the OR and my parents met me in the CICU at Cedars Sinai, breathing on my own, at 7:54 EST on July 4th, 2014.  Literally 1 year to the minute from when I took my first breaths he took his last.  I am resolved, committed, that his passing will not be in vain, for naught.  For all that we have done and learned in the last 70 years in heart disease, and for all the literature that is out there now, we really haven't figured all that much out.  We know so much, but there is SO MUCH MORE to be learned.  I will take this on and find meaning in this so that others won't feel the same profound loss that we feel.

Saturday, July 4, 2015

My Hero

My father passed away this morning at 7:54 EST from complications with his transplant.  It was exactly 30 days from his surgery.  His time of death was nearly the exact time he saw me after my transplant surgery 1 year ago today.

I am devastated as is my family.  Life is not fair and I feel like I have been kicked in the face with that fact.  I have been waiting to share this transplant experience with my father.

My dad used to tell me when his father died that the thing that he lost that he missed the most, other than his dad, was having someone to call and talk to, to share with, to get a different and honest perspective on something.  I want so badly to call him and ask him how to deal with this because I don't have any idea what to do.....................

He was 72 years,  164 days old, which is 20 years too young.

I miss you dad

Thursday, July 2, 2015

1 Year on July 4th

It has been a little over six months since I last posted.  A lot has happened in that time.  I turned 42:-)  Also, I had my 1 year exam three days ago and I received a complete clean bill of health.  My cardiac function is outstanding and my doctors are very happy about my progress.  I have some tricuspid valve regurgitation which is more than the doctors want but I can live with it for decades before any treatment is required, provided it remains stable.  Also I had some protein in my urine that the doctors think is likely exercise related so that will be watched,   But I have to say that after 12 months things are better than I could have ever hoped.  All my exams have been great these past six months and we now move in to maintenance mode.

My dad received his call on May 28th at Newark Beth Israel.  He was at the hospital for a visit and the Dr. told him that they had just accepted a heart for my dad.  He went into the OR at 5 PM EST that day.  His new heart started beating on its own at 3 AM EST on May 29th.  It has been a long journey for my dad, but he makes positive steps every day.  I cannot wait for him to get home and get his life back.

This week has been filled with many emotions.  While I am excited about the milestone I am also filled with a heavy heart thinking of my donor and his family.  Where was he a year ago, where is his family now, are they ok?  I want to know who my donor was and what his goals in life were......who he was, what he wanted to be, what dreams did he have?  I want to honor the gift I have been given, the sacrifice that was made and make something good of this.

I received a call today from one of my great friends Dennis.  He received his call this morning, that he too would received the gift of life.  He is in surgery as I write this.  When he called me he knew that today was my day and he was excited to share with me that today was his day.

I saw an eagle today, it had been too long since I saw one flying.  It was beautiful, graceful, and amazing.

Tuesday, December 2, 2014

What I am thankful for

I had my 5 month biopsy today.  I think 5 months was officially a few days ago, but who cares, 5 months, wow.  I can say unequivocally what I am thankful for is my donor family and the thoughts and prayers the last 4 years I have received.  One of the NPs I saw today said once you get to about 6 months post transplant you become in maintenance mode.  That is an interesting observation because I have been in the heart failure program since 2002, and now I am not:-)    I know transplant is not a destination, it is very much a journey with many twists and turns.   But I am here thanks to the care I have received and the amazing graciousness of my donor family.

I have been thinking about reaching out, initiating contact with my donor family.  Now that I am beyond 90 days I can do so, but it is the sole discretion of the donor family to respond.  I want to tell them how sorry I am for their loss, how thankful I am for their courage in their darkest hour, and how this gift has impacted my life. 

In the past month I have been running 3.5 miles, I have been biking up to 30 miles on a bike, doing an hour on the elliptical etc.  From that standpoint I feel healthy.  I think I have grown a lot during this time as well.  Some of the things I have learner:
  1. Its ok to have expectations - we just refer to them as goals
  2. Goof-off and other commercial grade adhesive removers actually have a place in medicine
  3. This journey is both physical and emotional
    1. For those that have had time to prepare due to a lengthy disease, as I did, the first part is emotional (think of this as grieving), then physical (surgery trauma), and then emotional again.  Once the wounds heal it is easy to contemplate where you are in life and where you are going
    2. For others who have had a quick journey, a rapid descent into heart failure, the emotional tends to dominate.  Fear, why me, what does this mean........
  4. It is ok to be afraid, to be tired, to need space.  You have to be your own advocate throughout the process, to include pushing back
  5. Being a heart disease patient turns you into the family and friend cardiologist.  It is shocking how much you learn along the way.  I relate it to being a Veteran and constantly being asked my views on politics and what I think about the latest troop deployment
  6. It CAN always be worse.  I used to say this to my cycle class when I was teaching.  You never know what someone else is dealing with.  In truth I secretly though it can't be much worse for me.  Then I met another transplant patient in CA.  He had a total artificial heart (meaning he had no heart inside him and was hooked up to a backpack that wooshed all the time), he had cardiac amyloidosis (cancer), and needed a kidney transplant too.  He and I were both transplanted on the same day, July 4th.  I saw him in clinic several times afterwards but one day in particular sticks out.  He had just been into see the kidney doctor where they removed a stent from his kidney.  The shortest path to the kidney is through.............  You get the point.  He wins, that was worse!!!  And yet he was happy to be alive.
I saw a friend today at the hospital.  He and I did time together last spring for a couple of  weeks.  There was a group of us that would gather to watch the NHL playoffs in the lounge.  It was so great to see someone, albeit slightly behind me in the journey, and say "Yes, it is definitely worth it."  It was what he needed to hear and it is what I believe.

The new movie "Unbroken" is coming out.  The story is about Louis Zamperini, and he was a B24 pilot like my grandfather.  I had read the book a couple of years ago, and it is simply amazing.  He passed away on July 3rd late in the day in Los Angeles.  The headlines in the paper the next day, the day I received my heart, are about Louis Zamperini.    Every time I see the trailer it takes me back to that day.

Enough ramblings for today.  Thanks for reading this, I hope it is helpful to others out there.

Saturday, October 4, 2014

3 Months today!

It has been 3 months today, exactly.  Okay, maybe it has been 13 weeks if you count the days:-)  I feel great.  I have had 2 biopsies since I have been home and both have been 0R.  Very exciting since I had 2 straight 1Rs before I came home.  The trip through LAX with my breathing mask on, hauling a guitar and 4 bags is a distant memory.  People told me heading into my procedure that at 90 days they really started to feel good.  I can confirm that is the case.  This past week I found myself thinking I really do feel better.  I have been running 3-3.5 miles 2 times a week and doing the elliptical for 45 minutes on the other days.  Cardiac rehab was completed after 1 visit and some debate, no need I was told.  Work has been good, but exceedingly busy.  I find a get pretty tired after a full day, sometimes I step back and remind myself that it has only been 12 weeks.

Random thought of the day. Pay attention next time you go to a restaurant or a cafeteria.  Look at the food preparers and notice the gloves they wear.  I asked someone to change them this week and I got a very nasty look and the person said, "I have to wear them, it is a cleanliness rule."  My question is this......what good do the gloves do for me and the cleanliness of my food if the person touches every thing in the kitchen with those gloves on before my food.  Does it do anything other than keep their hands clean?  You think about these things when every little thing could kill you.  Just saying...............

Friday, August 29, 2014

No place like home

Hello MN.  I arrived home last night about 7 PM and was greeted by 2 hours of rush hour traffic.  Wait, I thought I left LA behind:-)  I had my final clinic appointment the day before and it went well.  I had a little rejection again, 1R, but the doctors said don't worry at all.  Totally normal.  The rest of my tests were totally normal and my cardiac function was spectacular again.  I have started running since I last posted.  My doctors told me the week before to go live my life.  Shower, swim, run, lift weights, whatever I want to do.  I started to run on the 21st and all I could muster was .5 mile.  I didn't have any expectations, or I tried not to, but I admit to feeling disappointed.  I walked a 0.25 mile and then ran a 0.25 mile.  The next day I did two 0.5 mile runs.  Two days ago I ran 1 mile without stopping twice.  I won't beat anyone any time soon, but it doesn't matter.  My legs have been very sore.  I guess I lost muscle not having run for 3.5 years, but it feels like it is coming back quickly.  I am getting stronger every day.

It feels weird being home, not having been here for the past 5 months.  At the same time it feels great.  One fun thing I did last night was throw away all my old VAD accessories.  Things like harnesses, holsters, etc. that I wont ever need again.  Didn't feel bad at all!   I can't wait to play my guitar later today, no hum or buzz from my pump ever again.

Thursday, August 7, 2014

5 Weeks later...........(Act of War by Brad Thor review)

Tomorrow makes 5 weeks.  I have one week until I reach the magic 6 week mark.  At 6 weeks my sternum is considered healed and I can start cardiac rehab and run.  I have not run since about a month before I got my LVAD.  At that point I couldn't run for 5 minutes without have to stop because I thought I was going to pass out.  Yesterday I walked 4 miles on the treadmill in 57:30.  I think it's pretty good that I am one month out and walking sub 15 minute miles.  I feel like I could run now but I don't want to risk anything at this point and jeopardize the gift I have received.  My first refill of pills came today.  The box was so big I thought someone shipped me a basketball, lol.  I had heard horror stories of  post transplant taking 70 pills a day.  So far I am taking about 15 twice a day.

I finished "Act of War" by Brad Thor last week.  True to form 5 pages in I was hooked.  I love Brad's books because they are realistic, informed, relevant, and as a veteran I relate to his views and perspectives.  I am so thankful that Brad mailed me a copy of this and I hope that he and I connect during my last three weeks here.  I highly recommend this book and anything Brad has written.  Can't wait to read the next one.