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Saturday, September 5, 2015

On to Spain

I returned last Sunday from Buenos Aires.  We left Saturday morning from Mar Del Plata and took a bus to the airport.  Unlike the arrival which took nearly 8 hours from airport to the hotel, this took only 5 hours in return.  Things are different in a foreign county than in the US.  It sounds so obvious but until I had experienced it first-hand I don’t think I could have understood.  Things like which terminal at the airport my flight departed from, when to be there, when do the airlines show up, what does security look like.  I found it particularly funny going through security in Argentina as I nearly stripped down and spread my legs, the security people were like, “no, no, that is not necessary.  You can keep everything on and just walk through the scanner.”  But then when I got to the gate and was called to board my bag got dumped, turned upside down and shaken.  I don’t know what would have fallen out that would have been illegal but……..I was thoroughly checked and deemed worthy to board.

I ended up competing in golf, swimming, and track.  I ran the 5k on Monday morning in 26:00.  This was 4:30 faster than any time I have run post-transplant and would have won the 40-49 age group in the previous games.  I came in 15thJ  In swimming I placed 4th in all of my events and was quite close to medaling.  The competition was quite impressive in swimming with many athletes competing all around the world in Masters swimming.  That I could compete and quite nearly place with no training was a blessing and left me anxious for the next games.  Competing in a 4x100 relay in a pool that once hosted the Pan Am games, filled with people and music blaring was motivating and I won’t forget that experience.

The games went quickly with something to do nearly every day.  For me the most exciting part was being surrounded by other transplant patients, nearly 1000 of us.  I have an affinity towards heart transplant patients, I cannot help it.  But I saw that kidneys looked for kidneys, livers and lungs the same thing.   I also met athletes who had stem cell and bone marrow transplant, and even a young man from England who had a bowel transplant.  Talk about a stinky situationJ  Nobody considered themselves a patient, to a person an athlete.  Comradery abounds with competitors and supporters cheering just as hard for those who finish last as they do for the winners. 

I had the pleasure of meeting my new friend Matt, from Washington state.  He is 43 and is 5 years post-transplant.  We quickly bonded as swimmers.  Matt set 5 world records for the Transplant Games and was definitely popular amongst the other athletes.  We also met a young woman from Germany who was 14 years post-transplant.  Like Matt and me she had had a LVAD previously.  Everyone is quick to compare scars and stories. 

The hardest part though for me was leaving.  When I first arrived and met the rest of team USA I was often reminded that the first games you attend are special.  People are quick to share their stories and having competed on different continents, against certain people, long standing rivalries.  With my experiences now in hand goodbyes took the form of “see you in two years and take care of yourself.  Be healthy.”  Something I wasn’t prepared for was the solemn remembrances of athletes fighting cancer or some other complication.  Very heartfelt.

We in the US have some work to do.  While we did great at the games, finishing 4th overall, in some sports like swimming we were in awe of Great Britain, Greece, Netherlands, and Italy, to name a few.  In talking with other athletes I learned that when you are placed on the transplant list that other patients begin recruiting you to compete post-transplant.  This is done to provide you a sense of optimism and hope and something to aspire to.  In my experience, I accidently discovered the World Transplant games, an experience shared by other athletes.  I look forward to the day where transplant patients “new normal” looks like the old normal and may be better.

I am fortunate that I have my health today, I am always one blood test from a complication.  But the optimism, the energy, and the enthusiasm for life at these games was amazing.  I cannot wait for Spain in two years.  I did my absolute best and tried to carry my dad with me in every event.  He was on my mind throughout.  While we didn’t do the games together I know he was with me.

Sunday, August 23, 2015

Day 1 Update

Nearly After 28 hours of travel I made it to the Gran Hotel Provincial in Mar del Plata last night. 1 hour lay over in Atlanta followed by 10 hours in the air to Buenos Aires was Relatively smooth. We had to wait 3.5 hours in the airport but for others to arrive Other than that things went smoothly through customs. Then we had a 450km bus ride That Took us 7.5 hours and included us getting lost and stuck in the middle of a road. But we made it, and today was registration and the opening ceremonies. I was Asked by my teammates to carry the flag for Team USA and was honored to do so. Tomorrow is the first event, the 5K run. Information is quite slow down here from the organizing Officials, Often arriving just in time to make us scramble. Looking forward to seeing the competition start tomorrow.

Thursday, August 20, 2015

Transplant Olympics

I am leaving tomorrow for Buenos Aires, Argentina to participate in the World Transplant Games.
Transplant Olympics
Buenos Aires games

It will be a quick week, 6 days, sandwiched between long plane flights on either side.  I am excited to be around other survivors, to meet others who have are survivors.  It is also a chance to honor my father, to do as he would have wanted me to do, and not waste an opportunity.  I will post updates daily with pictures to share this experience.

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.