My Donor’s Heart — My Story
I don’t know why but somehow the formatting on WordPress got a little disjointed so ignore it if you can. I apologize for any inconveniece.
The fourth anniversary of my heart transplant is on August 21. I will never, ever forget that day. I was a very sick man. I had dilated cardiomyopathy, which is a progressive and incurable heart disease, but let us turn back the calendar to the time when I first learned I had a fatal illness and would likely need a heart transplant.
It was about 9 PM in July of 1995 and I was just leaving the office. All day my breathing had been somewhat labored but I thought it was my old asthma resurfacing so I did not dwell on it. Even though I was not having serious problems with asthma I always carried a “rescue” inhaler with me so I used it a couple of times but strangely it did not seem to be doing any good. As the day wore on breathing got more difficult. I felt like going home but I had a client coming in from six until nine that evening and was sure I could “gut” it out.
My always prompt 6 o’clock client was there early so I hurried the previous out the door and began work with my last appointment of the day. Six until nine became the longest three hours of my life. I was having such trouble breathing my client asked if I needed to go home. Always the tough guy I told her I was fine, just having a little bit of seasonal asthma.
When nine o’clock came she gathered her things and said goodnight. I was out the door about two minutes after she was. On the ride down to the parking ramp I remembered that when I had arrived that day the only parking places left were all the way at the back of the ramp, easily a block from the elevator door. My laptop and other “homework” was in my rolling briefcase so I began the walk to the car, all the time struggling for air. A couple of times I had to stop, lean on my rolling case for a couple of minutes and then start again. My breathing was getting so difficult I was starting to get a little scared. I
repeatedly used the rescue inhaler but to no avail, it was useless so I decided it was a bad inhaler or this asthma attack was a particularly strong one.
Finally I reached the car, gasping for air. I got in and just sat for a few minutes and my breathing started to become a little better, not much but a little. Home was fifteen miles from the office and it seemed like the whole world had gone into slow motion. Getting a little concerned I picked up my clunky cell phone and called home. When my wife answered I told her what was happening and that I thought I might need to go to an emergency room but I would pick her up first. When I arrived she was standing outside waiting. It was clear that I could no longer drive, I could hardly move, so my wife got behind the wheel and we sped off to the closest ER. When we walked in there was no one there but a nurse behind a desk. Now, gaspling for air and feeling faint, I told her about my breathing and about the rescue inhaler and that I thought I was having a severe asthma attack. While I was talking she was taking my blood pressure and temperature. When I finished two men came into the waiting room with a stretcher on wheels. I told them it was asthma and that I did not need the stretcher. That is when still another nurse appeared and said, “Mister, you are definitely not having an asthma attack.”
Almost as soon as I got placed in bed in a curtained cubicle a doctor appeared. As he examined me and gave instructions to the nurses I was connected to several monitors. The quietly efficient ER staff started an IV and my breathing seemed to be easing….within a few minutes it seemed to be almost normal again. Obviously there was some fast acting medication in the I V. As I began to relax and enjoy the ability to breathe again the doctor looked up from a chart and told me that I
was having some kind of heart problem and that I needed to be transferred to another facility because my condition appeared to be grave and that they did not have the cardiac care capabilities that I needed. He said an ambulance was on its way to take me to United Hospital in St. Paul, Minnesota which was a well-known cardiac care center. By now I was feeling pretty good and told the doc I did not need an ambulance — my wife could drive me there. With a stern look and a threatening voice he said, “You are a very sick man Mr. Aronson, you are going by ambulance.”
When the ambulance arrived two paramedics hopped out and began hooking me up to their monitors while they quickly wheeled me to and into the back of the big red and white truck. Siren on, lights flashing, I wondered what the big deal was. I was rushed into United Hospital and connected to what seemed to be every monitor in the room. They drew blood, sent me for x-rays and I do not really remember all the other things but it was quick, efficient and done with great respect and
concern. In short order my entire family began to gather around me joking and laughing . After all, I felt pretty good, I looked Ok and I didn’t seem to be in any danger. That’s when when a tall, gray haired, distinguished looking man walked in. He was Dr. Thomas Johnson a respected cardiologist. He was very friendly and calm but his words indicated the situation was not good. “You have a condition called cardiomyopathy,” he said and explained what the disease was and that while I was feeling good right now, it was the medication that was responsible. It was obvious from his demeanor that this situation was quite serious. When he finished his explaination to me and my family he said, “Cardiomyopathy is a progressive, incurable form of heart disease and it is likely that you will need a heart transplant.” The room fell into a prolonged silence.
Trying to make the best of a bad thing I said, “See, there’s a remedy… I’ll get a heart transplant.” I knew very little about organ donation and transplantation and assumed that if I needed a new heart we could schedule it and I would be fine after some recuperation. That is when I learned how the organ shortage I had heard about affected me. Dr. Johnson explained the organ shortage and said that some people never got the organs they needed. I also learned the procedure could not be done at United because they were not a transplant center. To make a long story short I stayed in the hospital for a few days then was given some prescriptions, instructions and set up an appointment to see Dr. Johnson in his office the next day. As we headed home, I was overwhelmed with random, disconnected and confusing thoughts. I was still kind of puzzled because I felt great. None of it made any sense.
Twelve years went by before I finally got a new heart. In the meantime I had more epiisodes and finally was fitted with an implantable defibrilator which proved to be insufficient for my condition and within a year or so required a more sophisticated device. This was all getting very real. I could feel and see the outline of the defibrilator through my skin just below my left shoulder. In the meantime I continued to work but at a slower and slower pace. I
As a communications consultant I did a lot of training for my clients and when I did my “lecture” I always stood, walked around the room and tried to make it fun but all that activity used up a lot of energy. As time went on I limited my walking around while presenting because it affected my breathing. Then I quit walking completely and just stood at a lectern and finally I could no longer even stand for any length of time, I had to sit. Now I began to understand the progressive nature of the disease.
By this time I was re-married after having lost my first wife to cancer several years earlier. As fate would have it my new, lovely wife Robin was from Jacksonville, Florida where most of her family lived. For six years we lived in Minnesota’s
twin cities of Minneapolis and St. Paul but I knew as we approached the end of the sixth year that my condition was getting very bad. I was 68 years old and loved my job but it was clear that very soon I would be unable to do it anymore. I had great difficulty making it from our family room to the bathroom. It was time to retire.
I love to do computer research so I began digging and found that the Mayo Clinic in Jacksonville had an excellent ransplantation record and they seemed to have more organs available to them sooner than any other transplant center. Besides, Robin’s entire family lived there. The decision to move to Jacksonville was easy.
I am always proud to say that when I was a communications consultant the famed Mayo Clinic was a client. Our relationship lasted for over a quarter of century in all three of their U.S. locations (Rochester MN., Scottsdale AZ and
After buying a home and making appointments at Mayo for a thorough heart and lung examination we started to settle in to our new life. The results of the examination, tread mill test, blood work, bone scan and more were further confirmmation of what Dr. Johnson had told me. Mayo Transplant Cardiologist Dr. Jeffrey Hosenpud told me he was going to go before the hospital transplant committee to convince them that I needed to be placed on the transplant list immediately.
I will try to explain just how bad my heart was. Pumping efficiency of the organ is judged by the “Ejection fraction. (EF)” Using ultra sound they determine how much blood is pumped out of your heart. The normal EF is around 60%, mine was between 10 and 20, usually closer to 10. That meant that because my heart couldn’t pump the blood out it had to find a way to store it internally so my heart kept getting bigger, much bigger in order to hold the blood it could not pump out. When you are getting very little blood to your brain and elsewhere you slow down considerably.
The day after Dr. Hosenpud presented my case to the transplant committee he called and told me that I was going to be listed by UNOS (United Network For Organ Sharing). UNOS is the central organization that coordinates all U.S. transplants. While I was very happy with the news that I would finally be on a list (remember it was 12 years since that original diagnosis) I did not think I would have much of a chance of getting a heart after all I was now 68 years old. I was sure there were much sicker and younger people who had every right to get an available heart before me. I expected to die, sitting on our reclining loveseat in front of the TV.
Then came the biggest surprise of my life. 13 days after being listed Dr. Hosenpud called and said, “I may have a heart for you.” He told me to come to the hospital right away and that by the time I got there they would likely know better if he really did have a heart for me. Geographically Jacksonville is the largest city in America. It’s population of over a million is spread far and wide so it took some time to drive all the way across the city to get to Mayo. I remember thinking that when I got there and announced that I was called to come in for a heart transplant, pandemonium would break out just like on TV but when I walked to the reception desk and excitedly told the woman I had been called to come in because I was going to get a transplant, she ;looked at her computer screen, smiled and said, “I see that, have a seat Mr. Aronson and we’ll call your name when the Dr. can see you.” Boy did the air come out of that emergency balloon. I really wanted it to be chaos just like on TV.
I got to see the doctor just a few minutes later, around 1 PM when he told me that indeed there was a heart for me and that they would do the surgery that day. I was sent to a room, changed into one of those fashionable hospital gowns and began the wait. It was a long one. It was not till very late in the day that I was taken to an operating room and given something to “relax” me. The next thing I knew I woke up in a different room and Robin was there holding my hand and saying, “Everything went well, you have a new heart and it’s working perfectly. Your donor was a 30 year old man from South Carolina but that’s all we know.” I immediately went back to sleep.
My recovery from the transplant surgery was tough very tough, t took two years. There was no problem with the transplant but several other health problems emerged like pneumonia, then a diagnosis of Chronic Oppressive Pulmonary Disease (COPD), torn rotator cutts and deep depression all of that kept me pretty inactive for a long time but between Robin my caregiver and the team at Mayo I finally came around to where I am today. Now it is 2011 and I feel better than I have for ten or fifteen years. Retired, I spend most of my time helping Robin with her business, promoting organ donation and related issues and loving my new woodworking hobby. I am a really active guy at age 72.
So — for those of you who think, “I’m too old,” or “There are so many people more deserving than me,” or “There are so few organs I’ll never get one,” I am the example that all of those hurdles can be overcome. Do not ever give up hope, never, ever!
Thanks for reading my story.
view our brand new video “Thank You From the Bottom of my Donor’s heart” on You
Tube at http://www.youtube.com/watch?v=ifyRsh4qKF4 This video was produced to promote organ donation so it is free and no permission is needed for it’s use.
Also…there is more information on this blog site about other donation/transplantation issues. We would love to have you join our
Facebook grou[, Organ Transplant Initiative The more members we get the greater our clout with decision makers.
Please comment in the space provided or email your thoughts to me at firstname.lastname@example.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.