Bob’s NewHeart

By not making the decision to donate, you have chosen to let people die.  Picture yourself standing by a stranger’s bedside knowing you could save that life and choosing not to.  Do you want the responsibility of knowing you stood by and let a person die when you had the power to save that life? Do you?

My story is mild next to some I have heard, but my story is the only story I know.   So I want to fill you in on my long journey to get a heart transplant.  I died a couple of times along the way. 

I used to be a communications consultant.  My mom told her friends that, “Bob teaches big shots how to talk.”  My job was a little more complex than that but the description made my sweet little Italian mom happy and it was a fun story to tell.  As a practitioner of the “teaching big shots how to talk” profession, I traveled a great deal.  It was not unusual for me to be on a plane headed for somewhere once a week or more.  I became quite familiar with airports, cabs, hotels, meeting rooms and eating out.  Eating out regardless of how expensive the restaurant, was not a treat for me.  Chef Mario is Chef Mario whether you are in New York City or Duluth, Minnesota.  After a while, you would give anything for a taste of mom’s ravioli or my wife Robin’s 108-bean salad. 

My transplant journey began with a diagnosis of Cardiomyopathy (a form of heart failure) in 1995.  It still has not ended but I got a heart transplant in 2007 — twelve years after my diagnosis.  It was twelve years of slowly deteriorating health, more and more medication, several hospitalizations and less and less strength.  You see — you have got to be pretty sick before the transplant docs will agree to list you for transplantation.  You have to be dying. 

By 2005, I was no longer running through airports I was walking very slowly and stopping often.  I left more and more time between appointments and my lovely Robin volunteered to give up her life, so to speak, to travel with me and help with bags and carry-on items.  I had all I could do to walk through the airport and even that usually left me breathless.

When you have a chronic illness, one you know will only get worse, being sick is always on your mind especially when there are so few “good” days,  When 2006 arrived I was “faking it” most of the time with clients and friends.  I let my business slowly disintegrate until finally I had only two or three clients but they were clients in the medical field who had more than a passing acquaintance with heart failure and organ transplantation and they were aware of my condition. 

2006 was not a good year.  Each passing day seemed to bring on more difficulty getting around, more medication changes, more tests and increasing fatigue.  When I wasn’t working, and that was often, my whole life revolved around driving, freeways, parking, physicians, nurses, medications, tests, disappointments, small victories, insurance, medical bills etc.  Then, like the movie, “Groundhog Day,” it was all repeated the next day. 

Finally, one of my greatest fears was realized, I could no longer walk very far.  If I flew somewhere to work with a client, I would ask the airline to have a wheelchair waiting for me.   Sometimes I even had trouble walking to the wheelchair.  Breathing was becoming increasingly more difficult.  Sitting still was the only time I was really comfortable and I wondered how long that would last.  

Eventually, after endless tests and consultations, Dr. Jeffrey Hosenpud at the Mayo Clinic in Jacksonville, Florida told me I could be listed.  That was one of the few highlights in the process.  I could actually get listed. Then came the waiting when the days were 48 hours long and the telephone was never for me.  In case you haven’t guessed, waiting for an organ is an experience in suffering — physical and emotional suffering.  If you think for a minute that you get a diagnosis of heart disease and then all is fine until you get a transplant, think again. 

I knew I had a slim chance of getting an organ.  I also knew that no one, no member of government, no politician, no one — could do anything that would substantively increase the donor supply in time to save my life especially when you consider that I was 68 years old had COPD (Chronic Obstructive Pulmonary Disease) and a somewhat rare blood type, B positive.  Like many, I was subject to the luck of the draw.  The right person had to die in the right place at the right time. I was dying, I knew it and despite being the eternal optimist, I knew my chances of getting an organ were very, very slim.  “Frankly,” I thought, “Why should I get an organ when so many people so much younger than me needed organs, too, and they had a lot to more life to look forward to.”

Here’s one of those ugly truths that occurs to you like a bolt of lightning in times of great stress and usually when you need it least, “None of the people who signed organ donor cards can give up their organs to save me — because they are not dead yet!”   With the exception of very few living donors for a select few organs, and the heart is not one of them, you have to wait for someone to die.  Now isn’t that a reassuring thought.    

My family, like any family suffered with the wait, too. “Hi dad…any news yet?”  My wife had to live with it daily, she could see my condition deteriorating, she stood by me no matter what my mood, she knew there were no more drugs, I was already taking everything that could help my condition, and months earlier she stood by as I had three surgeries to implant ICDs (Implanted Cardioverter Defibrillator — a sophisticated pacemaker).  She waited as the doctors struggled to get give me life on two occasions, once they had to use the “paddles” nine times before the flat line on the screen started to jump again.  Can you imagine the effect on her after the first time I died – the horror?  Yes, the patient suffers, but I didn’t know I was dead until I was alive again.  My wife and family had to wait for what seemed an interminable amount of time, waiting for the doors to swing open and a Doctor to pop out with some word of how was doing. 

But I digress.  Here I am six months after my heart transplant writing blogs about the importance of organ donation.  I am absolute proof that there are miracles because after only thirteen days on the national organ waiting list, I got a heart from a generous stranger who is still unknown to me.  He was the right man, who died in the right place, at the right time, with the perfect organ for me.  I am still overwhelmed and will be eternally grateful to him and his family.  I will take good care of your heart sir, I promise! 

And so I return to what I started with.  If you are on the fence about becoming an organ donor there may be several people who are on the fence about living because of your procrastination.  What’s holding you back.  Become an organ donor for heaven’s sake…you have absolutely nothing to lose.  And — several families have their loved ones to gain.  Get off your duff! Become an organ donor and insist that everyone you know do the same.  I mean it.  I know where you live. J