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From the Bottom of My Donor’s Heart. My 20 Year Transplant Journey


heart full of love

Introduction

Overall my transplant has been a very positive experience, but that does not suggest that there weren’t some difficulties and challenges along the way. There were several and they were discouraging, but we kept forging ahead because the alternative was much worse. Now some 20 years post diagnosis. I am alive, I am enjoying life and I am the most grateful recipient on earth. Despite all the setbacks, the bad moments, the complications, I would not hesitate to make the same decision all over again. Thank you Mayo, donor family, my wife and family and the many friends I had and have collected since I got a new heart.

This is an accurate although abbreviated record of my journey. Yours may be totally different and likely will be. I have posted it because of a good many requests to do so. I hope it is helpful to someone. I also hope you will notice that I found some of the experience to be downright funny and I included them because seeing the humor in life’s challenges is important to your recovery. Don’t ever lose your sense of humor; in fact you should aggressively look for it in every situation. It will make your life so much easier to live.

Bob Aronson, heart recipient August 21, 2007 Mayo Clinic, Jacksonville, Florida.

 

The Beginning. An Earthquake Swallows You Whole

Getting an organ transplant is an experience that few ever have. From the time you first learn that you need one, until a good while after you have one, the ride is not unlike the wildest, highest, steepest, fastest, scariest roller earthquakecoaster ride you can imagine. It is like standing in the street when an earthquake hits and the fissure in the pavement runs right between your feet. You get the same feeling you did in that recurring nightmare where no matter how fast you run, your legs feel like rubber and you keep falling, but each time you do it is harder to get up and that something that is chasing you is getting closer. You know you are going to die.

Emotions can range from terror, to giddiness, to depression, anxiety, guilt, anger and every other imaginable high, low or even fantasy. An organ transplant will introduce you to feelings you did not know you had and to realities you did not know existed. Most importantly it will allow you to see your own humanity; your strengths, weaknesses vulnerabilities, fears and inadequacies. In other words, you will get to know a side of yourself that you didn’t know existed.

All of us know that someday we will cease to exist, but no one likes talking if something happensabout it. Insurance companies like to say, “If something happens to you,” and we all know they don’t mean winning the lottery or getting your very own magic Genii who will pop out of a jar and grant you anything you want. “If something happens to you” means not if, but when you die. It means dead, lifeless, no heartbeat, no breathing, no pulse – DEAD!

When you are told that an organ is failing, you are being told that the last option available to keep you alive is a transplant. You are dying. That is information with which it is hard to come to grips, and those of us who have had transplants have all heard that message loud and clear, it is inevitable. It is a sad fact, but everyone on the transplant list is dying.

I’m sure the death message is never delivered in the same manner twice because the circumstances that lead up to it are all different. The very first recognition that something is wrong is usually met with disbelief. “It’s probably nothing, maybe a false positive, it can’t be organ failure.”

In my case it was in mid-1995 when I left the office late one night after a long day. I’m an asthmatic and I had struggled for air all day. I could hardly wait it for it to end but I had a client until 9 PM. When she left, I waited until the elevator doors closed, turned out the lights, locked the door and took an elevator down six floors to the parking ramp. I had arrived at the office late in the day because of meeting and had to park at the very back of the ramp, a good block from the elevator. Most of the cars were gone now and there wasn’t a living, breathing soul to be seen. I could see my car in the distance, but it may as well have been in the next county. My breathing was so labored I doubted I could make it that far, but I had to try.

I am one of those guys who makes a decision and never looks back, so I forged ahead. I was going to make it to my car no matter what. I thought that if I walked slowly I man down in dark rampwouldn’t use as much air so that’s what I did, but breathing was getting more and more difficult and my rescue inhaler seemed to have no effect. I chalked it up to a defective device and pushed on while carrying a full briefcase. I leaned on cars, support columns and sign posts, but stopped often and fell twice when my legs gave way under me.

By the time I got to my car my suit pants were torn from falling, my hands were scraped and bloodied from using them to break my falls and I was soaking wet from perspiration. With great effort I made it into the car, turned on the AC and just sat there hoping the rest would restore my ability to breathe. It didn’t. I called home to alert my wife that I was in distress and would pick her up on the way to a nearby community hospital ER. She said I should go to a bigger hospital, but I knew the bigger facility would be crowded and the wait would be a long one so we went to the small one.  She was right and i was wrong. here’s what happened.

It was a small hospital in Hastings,Minnesota and there were no patients waiting in the ER lobby emergency entrancewhen I stumbled to the desk and gasped, “I’m having an asthma attack and need a shot of epinephrine,” and collapsed on a chair next to the nurse.

She took my vitals, listened to my chest, looked at my eyes and fingernails, poked around my ankles and said, “This is no asthma attack.” Somehow she alerted a crash team which appeared in microseconds. They brought with them a gurney upon which they cekgarefully placed me and removed my tie, shirt and t-shirt while wheeling me into an ER exam cubicle. Then, someone else came along and stuck some leads on my chest, sides, legs and arms and wired me to a machine. Another person started an IV. A portable X-ray machine materialized, someone gave me a nitroglycerine pill to place under my tongue but still no shot of epinephrine and I was getting angry. I knew what to do. “Why didn’t they know? I wondered”

A doctor appeared, examined me and ignored my repeated requests for epinephrine. Finally he said, “Mr. Aronson this is not an asthma attack, even though you think it is. It’s your heart.” He left the room to have a conversation in the hall with a couple of other people and then returned to say, “Mr. Aronson, we have determined that your condition could best be handled by a racing ambulancehospital that has cardiologists on duty and specializes in situations just like this. We are sending you there by ambulance so you will get the best and most immediate care possible,” and they wheeled me out to my ride.

Too much was happening too fast. I was totally confused. “This is asthma, for heaven’s sake,” I thought. I just couldn’t wrap my mind around this heart stuff. I was 56 years old and thought I was in very good health. I didn’t drink or smoke and was in fairly good physical condition. united hospitalI just couldn’t figure out why they thought it was my heart when I knew it was asthma. The ride to United Hospital in St. Paul, Minnesota took about 20 minutes, and I was rushed into their heart unit. More wires, more machines, more activity, blood drawn, questions asked and injections given.

Another technician appeared with an echocardiogram machine. He placed more leads on my body, some cold gel and began moving a wand around the left side of my chest. In the meantime my breathing was improving.

I could see my heart on the echo monitor and hear the “gulp, swish, swish, gechogramulp” of the machine. All the while the medical team was explaining every detail of what they were doing and I heard none of it. “It’s an asthma attack,” I kept thinking. And then I lost consciousness.

I awakened the next morning in a hospital room with my family surrounding me. Everyone was solemn and one of my daughters was crying. A man walked in, he looked like he just stepped off the cover of Gentleman’s Quarterly. “I’m Dr. Thomas Johnson, a cardiologist,” he said. “It appears as though you have a very serious heart condition called Cardiomyopathy. We are going to run some further tests, but you may need a heart transplant.”

I thought, “Boy, this guy doesn’t mince words – a heart transplant? I vaguely remembered being on the air and reporting on the story when Dr. Christian Barnaard performed the first ever in 1967 in a South African hospital. I remember thinking, “Wow, what a development. It will help a whole lot of people someday,” never considering for a moment that I might be one of them. The diagnosis was official now, I had Idiopathic, Dilated Cardiomyopathy. That means I had heart failure from no apparent cause.

It all came together at that moment. The great truth that I had continually denied and avoided was now perfectly clear. The feeling was like that you experience when a monstrous thunder clap or earthquake rattles your bones. It was like lightning bolts flashed out of the clouds, thunder rumbled louder than I could bear and the realization that asthma had nothing to do with my condition that shook my foundation. I was in serious trouble. I felt a mixture of shock, anger, terror, doubt and disbelief. That was my introduction to a process that would take 12 more years before I got a new heart.

The Disease Progresses

A measure of the health of your heart is its ejection fraction (EF). It is how ejection fraction 2much blood is pumped out of the heart with each beat. On average we pump out about 60-70 percent. My EF was 25. When it gets too low that means that the heart has to grow larger to hold the retained blood, but it’s a gradual process. For a long while I felt OK. I went about my work and with the help of medication performed as I always had. I was a communication consultant helping business executives with presentations, testimony, personal communication and media interviews, and was always upbeat and energetic. Often I was hired as a keynote speaker at conventions. I never stood behind a lectern, but rather walked around the stage, invading people’s space and getting them involved. Slowly that became harder to do.

In 1996, a year later, I started to feel a little fatigue and while still energetic I had lost a step or two, but it was barely noticeable. That same year Avis, my wife of 33 years was diagnosed with lung cancer. She fought hard and for a while it looked like she had it beat but in 1998 she succumbed to that horrible disease and I went through the motions of living. My fear of the slow disability that would be overtaking me was exacerbated by the grief I felt over losing Avis. Being alone after 35 years of marriage is almost unbearable. She was special and losing her left a very large void in my heart and my life.

I stumbled on in a continually weakening condition until 2000 when I met and married my current wife Robin. I told her about my condition and the fact that there were not enough donor organs for the number of patients who needed them, but she was undaunted and married me anyway. As it turned out she always had more faith than I did that I would get a heart and be just fine, but I was now about five years post diagnosis and my EF had dipped to 20 and I lost another step or two. As I walked the stage in my presentations I started to become more breathless so I contracted my movement circle. It was about this same time when I fainted while driving into a parking place. That development caused my physicians to implant a defibrillator in my chest to guard me against sudden cardiac arrest.

At 9 years my EF was between 15 and 20 and it had become very difficult to be as active as I had been so I made sure that I had a bar stool when I spoke that would be placed about center stage between the lectern and the edge. I could still leave the lectern and give the image of energy but I could kind of lean on that stool. Obviously the heart failure was getting worse, but not bad enough to put me on a transplant list.

Finally at 11 years with an EF of 10 to 15 I quit doing keynote speeches and only accepted small group coaching sessions where I stood on occasion but mostly sat on a stool at the front of the room, and then one day, I couldn’t muster the energy to get through a session unless I sat in a chair.

It was time. We decided to retire and move from Minneapolis, Minnesota to Jacksonville, Florida for two reasons. One being that it was my wife’s Mayo jaxhometown and her family was there and the second was that one of three Mayo Clinics was located there. I learned they had a phenomenal record of success in getting organs and in the survival rates of transplant recipients.

I made the necessary appointments at Mayo and went through a battery of tests for several days. Finally I was told that my case would be presented to the hospital transplant committee for approval to be placed in the national transplant list. Sure enough I was approved and listed and promptly forgot about it. Everything I had read suggested that people on the list waited a long time and that many never got an organ. I was of the belief that at age 68 I was probably too old and not sick enough. After all I was up and around and not even hospitalized.

By now my EF was down to 10 and my heart was getting seriously enlarged. I was on my second implanted defibrillator and had trouble walking from the den to the bathroom without stopping to rest. Then one morning the phone rang, I answered and confirmed my identity and my transplant cardiologist from Mayo said, “I may have a heart for you.”

I could not believe my ears. I had only been listed 13 days earlier.

“Pack a bag and come to the hospital,” Dr. Hosenpud said, “and we’ll get things underway.” In my mind “pack a bag” meant, “Get your butt over here right away, break the speed limit, we’re all waiting for you, hurry, hurry, hurry.”

I told Robin about the call and we rushed out of the house to make the 45 minute cross town drive to Mayo. It only took 30 minutes. For me the world at this point was moving at near the speed of light. My always composed and realistic wife Robin had no delusions. She expected Mayo to be as reserved and professional as they always were. My mind was simply not that organized. I perceived us screeching to a stop at the hospital where a team of the world’s greatest physicians, nurses and technicians would be in medical staff waitingthe lobby waiting for us. My mind’s eye saw us running into the hospital surrounded by people in surgical garb and lab coats who were all barking orders while the hospital PA system was calling for more doctors, nurses and technicians. I fully expected the PA system to be saying, “He’s here; the guy who is getting a new heart is here.” I envisioned being thrown on a gurney, stripped of my clothing and rolled at high speed to an operating room where the finest doctors on the planet were assembled next to an ice-covered beating heart in a stainless steel pan.

Tben caseyhe Doctors looked like Ben Casey Dr. Zorba and Patricia Neal (all  stars of the past).The scenario in my mind called for absolute pandemonium. I was patricia nealthat excited so they must be, too. I needed pandemonium — to have it meant this event was the show of shows, the biggest medical story of the century.

I got anything but. I walked in, stood in a very orderly line and when I was waved forward said to the receptionist, “I’m Bob Aronson and I’ve just been called by Dr. Hosenpud to come in for a heart transplant. “Ok,” I mayo receptionICUthought. “Cue the marching band and a frenzied atmosphere.” But nothing of the sort happened.

She looked up at me and smiled, looked down at her computer screen and said, “Someone will be out to get you shortly, Mr. Aronson, please have a seat.” There were scores of people in the waiting room and not a single one looked up when I entered. They all sat in perfect silence waiting their turn and ignoring my big event. For all I knew every one of them was here for a transplant as well.

“Have a seat?” I thought. “Don’t they know why I’ m here, who I am? For God’s sake there’s a heart on ice in there beating away, waiting for me and she wants me to sit?” I had considered this day often and each time I did there was pandemonium. I wanted pandemonium, I deserved pandemonium, I needed pandemonium, I craved it, but alas it never happened.

A very nice woman came out in about fifteen minutes and quietly said, “Come with me, Mr. Aronson,” and we slowly, quietly walked behind the reception desk into the surgical area, where I got on a gurney under my own power, put on a gown and was surrounded by very pleasant, highly professional staff who proceeded to quietly and efficiently “prep” me for the surgery.

Finally they wheeled me to a surgical suite where the strains of Beethoven could be heard on the speaker system as the anesthesiologist told me what his role was and about the anesthesia I would be getting. Then, he said he would give me something to “relax” me. It sure did.

I awakened in recovery the next day to the sound of Robin saying, “You have a new heart and you’re doing well.”

Recovery. The Days After

When I awakened again, I didn’t know where I was. I felt like I was duct taped to the bed. My head hurt. I was nauseous and confused. I vaguely remember several doctors entering the room.cardiac icu They asked about pain levels and said they were going to remove my dressings. One of them leaned over me crossed his arms so his right hand was on my right shoulder and his left on my left shoulder, Then there was the sound made by industrial strength Velcro makes when being torn apart rapidly–“Riiiiiiip” and he said, “You Ok?” I don’t remember my response because I lost consciousness again.

My next awakening was in Cardiac Intensive care. I think I was alone in my own cubicle. There was a nurse there and I was so thirsty my mouth felt like hot sandpaper. I asked for water. The nurse said, “You can have ice chips once an hour and she handed me a glass of them.

They lasted as long as they would had you poured them on a downtown Miami sidewalk at noon in the middle of August and I was still thirsty. cup of iceMore,” I said.

“No,” she said, “Not for another hour.”

I begged and pleaded to no avail. So I focused on the wall clock. “57 minutes to go.” It was the longest 57 minutes of my life, but right on schedule she was there with the small glass of ice chips. I was still parched and the chips gave only momentary relief, so I begged again, but failed to penetrate her compassion shield. I think I called her “an ice Nazi.” She didn’t laugh, but it didn’t sway her either. I don’t know how long that went on, but she never relented and I will always remember being the thirstiest I have ever been.

I do not recall how long I was in ICU, but I do remember being moved to my own private room. When I entered the hospital I was suffering from horrible heartburn and I was still bothered by it after surgery so I asked them to place me in the recliner chair in the room. They did and I settled in for the duration. They never cured the heartburn so I never got in bed. I’m probably one of the few transplant patients who spent all my time in the hospital room, some 9 days, without ever getting into bed. The housekeeping staff seemed to like that. One less bed to change.

My Mayo Transplant was done in St. Luke’s Hospital in Jacksonville, Florida while the Mayo hospital was being constructed. St. Luke’s was nice, with an Rasputenincredible, wonderful staff, but it was old. In my room there were two chairs, one was the recliner in which I sat. I think it was built in 1915 in Tsarist Russia for use on the enemies of the “Mad Monk” Grigori Rasputin. You had to be a contortionist to adjust the recline angle of the chair and no one who has had their chest cavity carved open has that ability.

That chair was bad enough, but the other one was clearly meant as an alternative to water boarding. It was a straight backed heavy oak, ladder-back chair. It was designed to make people confess, not to be comfortable and it was what Robin had to sit on, day after day. I don’t know what happened to it since then, but I would bet it is indestructible, probably won’t even burn.

During my stay there, I was constantly wheeled to different tests including heart biopsies, more echograms, X-ray’s and other imaging, pulmonary exams and treatments and meds adjustments. I was weak, still had heartburn, was not eating very much and generally didn’t feel real good, but finally was sent home with instructions on how to recover there.

Post-transplant depression is quite common for a host of reasons, one in particular is guilt. It is not unusual for a transplant recipient to feel terrible because “someone had to die, in order that I could live.” That statement supposes that the organ recipient bears some responsibility for the death of the donor. When you consider it, the thought is unreal and illogical. While I understand that sentiment I respectfully disagree. Here’s my take on the issue. No one HAD to die and when they did, it was not so you could live. That person’s life had ended. They died sadly, because it was their time to go. Prior to that he or she voluntarily signed up to be an organ donor. Then, for whatever reason they died. When they did UNOS (The United Network for Organ Sharing) began a search to look for a match for the organs of the deceased person. You are a number on their list; they don’t have your name.

No one HAD to die so you could get a transplant, but someone did die and you were chosen to get the organ. It’s not as though your donor was called in to the central office and told, “Hey George, today is your turn, We need your heart, kidneys and pancreas. We’ll be putting you down at 3 PM so say your goodbyes.” It just doesn’t work that way. George, for whatever reason, lost his life that day and because he was a generous, compassionate person he had arranged for someone to get his organs upon his passing. Someone, anyone. It is a gift to whoever needs it most. Your donor made that decision, no one else. Be grateful, yes, but guilt has no place in the equation. you are not responsible for your donor’s death.

I seemed to be doing better at home until I awakened one morning with a terrible heaviness in my chest. Breathing was difficult and I was coughing. A call to my transplant coordinator resulted in being instructed to go to the Emergency Room right away. It wasn’t long after I arrived and was examined that I was informed that I had pneumonia and the pulmonologist said he was very worried about my lungs. After nine more days in the hospital and some heavy duty therapy I began to recover and was released. deprressionWhen I got home I retreated to the den in my favorite recliner, turned on the TV and sunk into terrible depression, a condition that didn’t end soon or easily.

 

Like all transplant patients I was not allowed to drive for a while so at least twice a week Robin had to drive me to Mayo for checkups and treatments. I went because I had to. There was no joy in any of it including the cardiac rehab program, which was well-run, but well beyond my ability to enjoy. This was my lowest point ever. I have since learned that post-transplant depression is very common and yes, I was treated for it, but it is the kind of illness that doesn’t respond immediately to treatment, so I stayed in that state for several months while we experimented with anti-depressants.

At the same time, I was stricken with incredible shoulder, neck, arm and wrist pain. I knew I had the beginnings of osteoarthritis, but I didn’t know it could be this painful. Additionally, I was told that when they perform a heart transplant your arms are placed over your head at a strange angle so the surgeon has complete access to the chest cavity. It is not unusual, I’m told, for some patients to suffer shoulder pain as a result. I was one of those patients. For weeks I suffered from pain so horrible I could not sleep or eat and while the Mayo docs made every effort to help, it took time to find the appropriate method of addressing it. They finally did, but that episode had me descend into even greater depths of depression.

Slowly, very slowly I regained my appetite, my mood brightened and the pain lifted, but it was almost a two year ordeal in which I went from 225 pounds to 150, a 75 pound loss due to having no interest in food and a stomach that wouldn’t keep much down. I think I lived on puddings, gelatins and soft fruits. The only thing that kept me going was a newfound interest called Social Media.

Robin was my salvation in all of this. She not only took care of me at home, but made sure I made all my medical  appointments, had the right meds and ran two businesses out of our home at the same time. She is steady as a rock, never panics and is always up-beat and encouraging. Being a caregiver is very hard work. She did it and to some degree still does it without complaint. I am a most fortunate man. I love her with a special intensity and am blessed that she feels the same about me. She is a fantastic woman.

facebook wordpress
In November of 2007, two months after my transplant I got a call from Lee Aase the social media guru for Mayo Clinic in Rochester, Minnesota. I knew Lee professionally and was flattered when he called to ask if I’d be interested in starting a Facebook group and a blog. I said, “Huh,” and “huh.” I had no idea what either were. Lee is a patient man and took the time to give me a crash course and that’s when today’s over 4,200 member Facebook group Organ transplant Initiative was founded along with Bob’s Newheart blogs. Lee came up with the Newheart name which I still think is mighty clever.

The miracle of the social media for me is that it gave me some new responsibilities, which I desperately needed. My nature is such that if I take on a task I don’t know how to give it anything but my very best. OTI and the Newheart blogs gave me a new reason to get up in the morning. Each day I had something new to do, blogs to write, topics to introduce on Facebook and something to keep my mind off of my miseries. Lee’s call may have saved my sanity.

The Facebook group grew rapidly and the members were incredibly supportive of one another and of me. Since I started blogging I have posted over 260 columns on topics around transplantation/donation and related issues, which is just about any medical story. While some of them were provided by guest bloggers I researched and wrote about 90 percent of them.

Robin is an artist and we sell her colorful anodized aluminum and polymer clay jewelry at art fairs around the east and Midwest and we travel to those sRobin and dogshows with our two dogs in our RV to the tune of about 20,000 miles a year. We love the life, enjoy what we do and have no plans to quit anytime soon.

Her art business required furnishings for her trobin's boothent and because I have always liked doing woodwork I began to build a shop and make shelving, pedestals, picture frames, tables and wooden jewelry boxes. I’m no expert woodworker, but it is a hobby I really enjoy and intend to keep doing it as long as I can. I am busier today than I was when I was working, but now I answer to no one but I and work only on things that give me great satisfaction.

I am convinced that the road to good health and happiness is made easier if you can stay busy doing things you love doing.

Readers – the only advice I can give you is this. Never give up, never. Be confident of a bright future because if you think otherwise you may be paving your own road to hell. Find something you really like doing, enjoy your new life, love your friends and loved ones with every ounce of your soul and as Spock said, “Live long and prosper.” You’re worth it and you deserve it!

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bobBob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.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.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes. Then, when registered, tell your family about your decision so there is no confusion when the time comes.

 

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“His” Heart, My Life, My Story


I wrote this account of my life since receiving a heart transplant in hopes that others will benefit from my experiences.  Most of you who will have transplants will have a far easier time of it than I did.  You must remember that I was 68 years old when I had mine and that alone can make a huge difference in recovery time and other factors as well.  If any of you have any questions after reading this please contact me personally at bob@baronson.org.

Being a transplant recipient is an amazing experience.  I simply cannot describe what the feeling is like knowing that one of the parts you were born has been discarded and replaced with one belonging to someone else who in all likelihood died…except for the organ that is keeping you alive.

I don’t know who my donor was.  I only know he was about 30 years old when he died and he was from South Carolina.  I have written to my donor family but not heard from them so I assume they prefer to remain anonymous and I understand and accept that.

Everyone who has ever had a transplant has had a unique experience that nothing else in life can match.  Each day I am struck by the awareness that the heart I was born with, that kept me alive for 68 years no longer beats within my chest.  It died.  I didn’t.  Wow!

Often when I lie in bed I feel the rhythmic thumping that kept someone else alive for 30 years is now doing the same for me.  “His” heart is my life.  “His” heart pumps my blood, in my body to my brain and allows me to think, to live, love and enjoy life. “His” heart, not mine.

My donor has given me a lot but his greatest gift is allowing me the extra time to be with my wonderful wife Robin.

In 1995 after collapsing in a parking ramp am rushed to a hospital, I was diagnosed with dilated idiopathic cardiomyopathy and was told that someday I might need a heart transplant.  As the owner of a communications consulting business I was very active and travelled a great deal both domestically and internationally, but slowly my health began to deteriorate.  Always the optimist I adjusted and slowed down a little but not so anyone would really notice.

Then in 1996 my wife was diagnosed with lung cancer and I ignored my condition while we dealt with hers which included many chemotherapy and radiation sessions.  After a long and courageous battle with that terrible disease she succumbed in November of 1998.  We had been married for 35 years.  It was a devastating time and at age 59 I felt lost, alone and without hope as I began to feel the effects of my own condition.

About a year later I met Robin Diffie and as we got to know each other I felt my life just might come back together after all, but my version of the sword of Damocles, cardiomyopathy, continued its swing through my life as my heart function continued to fall with a resultant decrease in my ability to function.

In 2000 Robin and I were married in Eagan, Minnesota but by then the condition which would later require a heart transplant was becoming debilitating, when I travelled I began to ask for wheelchair service in airports and Robin began traveling with me to make sure I got one and to act as my “pusher.”

Cardiomyopathy kind of sneaks up on you and kicks your butt softly at first but then harder and harder.  The effect of the disease is measured by ones “Ejection Fraction” (EF).  A normal heart will pump out about 60% of the blood it contains every time it beats.  As the disease progresses the EF keeps going down and the heart enlarges in order to store the blood that doesn’t’ get ejected.  My heart was getting very large and by 2006 my EF was around 10% and decreasing.  Clearly I was dying and too sick to work.  Sometimes I could barely walk a few feet without having to stop to rest.  My heart was just barely pumping enough blood to keep me alive.  Reluctantly I made the decision to retire.

It was then that we decided to move to Jacksonville, Florida and we did so for two reasons.  1) Moving there offered the greatest likelihood of getting a heart.  My research indicated that the Mayo Clinic in Jacksonville had a wonderful record in organ procurement and transplantation.  2) It was an easy decision because Jacksonville is Robin’s home town and her entire family is there.  I still question Robin’s sanity in marrying a dying man but no matter I am grateful for whatever bug struck her and caused the instability.

After undergoing the battery of tests that are required to qualify for a transplant, I was finally approved and placed on the national list on August 8th of 2007.  I had resigned myself to either a very long wait or, I thought, no heart at all because of my age.  It had already been twelve very long years since I was diagnosed with a fatal heart disease.  I thought that at age 68 it was unlikely that I would get a heart and if I did it wouldn’t be anytime soon — but I got lucky.

Only 13 days after being listed I got the call from Mayo Clinic Transplant Cardiologist Dr. Jeffrey Hosenpud that he “might” have a heart for me.  He did.  I got one and August 21st 2007 goes down in history as my “other” birthday.

My recovery from the transplant was difficult to say the least.  It took four years before I finally felt good again.  I quit smoking in 1991 but the 37 year habit had already taken its toll, I had Chronic Obstructive Pulmonary Disease (COPD).  That’s a disease of the lungs that can best be described as feeling as though you are breathing through a straw…try that some time.  COPD is bad enough but when you get pneumonia on top of it you have another life threatening situation.  Well, I got pneumonia shortly after my surgery and was hospitalized again but the recovery was very slow and touch and go before I slowly regained my strength.  I now know that another bout with pneumonia could kill me so I try to be pretty careful about what I expose myself to.

I no sooner recovered from the pneumonia virus than I was stricken with indescribable absolutely excruciating pain….pain so severe that sometimes I would just sit and cry. Part of the pain, I’m told, was the result of the way I was positioned during my surgery.  Apparently your left arm is in a strange position in order to allow the surgeon unobstructed access to the chest cavity, but a transplant takes a long time and it seems that my arm needed different medical attention than was delivered.

The pain in my left arm right down to my wrist and fingers was awful but then just when I thought it couldn’t get worse, it did.  The pain spread to both shoulders, my neck and lower back for and went on for months.  Torn rotator cuffs were part of the reason but much of the pain came from unknown causes, perhaps it was the way I was sleeping or  maybe the lack of proper exercise and maybe because of an old auto accident.  We’ll never know the exact cause but it was finally resolved with a combination of physical therapy and Oxycontin the potent, addictive pain killer, and addictive it was.

I’ve been a recovering alcoholic since 1982.  I understand addiction and I understood quite well that I had become dependent on the narcotic.  I no longer really needed it for the pain for which it was prescribed, I needed it for the pain caused by the withdrawal you experience between “hits.”  When you are taking pain killers there’s a simple question you must ask yourself every time you reach for a pill.  “Am I taking this because I need it for pain or am I taking it because I want it?”  If you are truthful with yourself and the answer is the latter, you have a problem.  I had a problem.  By addict standards I wasn’t taking much Oxycontin, only about 30-40 milligrams a day, but it was enough for me to know I needed the drug, needed it not to get high…I needed it to feel normal.  That’s what happens to every drunk and junkie…they ultimately drink, shoot or take pills just to try to feel normal.  Often the first high you have, is the last one.

Having been through chemical dependency treatment in 1982 I knew what I had to do but I also knew I couldn’t do it cold turkey.  I found a highly reputable pain clinic that specialized in addiction and started going there.  They immediately took me off of Oxycontin and put me on Suboxone another addictive drug but one that is used to slowly help people through the painful withdrawal that comes with quitting.  It took several months but it worked and I was Oxycontin free but, sorry, the story doesn’t end there.

You’d think that after having survived cardiomyopathy, getting a heart transplant, beating terrible pain and withdrawing from an addictive drug I would finally feel better.  Unfortunately the light at the end of my tunnel was an oncoming train that hit me hard and almost had me down for the count because for no explainable reason I fell into a deep, dark depression that lasted for a couple of years.

Each day I would awaken, head to my favorite recliner in a corner of the den and sit there in the dark drinking coffee and watching TV.  I was nearly a zombie.  Some days I wouldn’t even shower and I didn’t want to see or talk to anyone.  That was my life day after day, week after week for a couple of years.   Depression is one of those diseases where you don’t know how bad off you are until you are no longer bad off.  The only thing that gave me any hope each day was maintaining my presence on the Facebook group I started, Organ Transplant Initiative and my blog on WordPress, Bob’s Newheart.  While I knew I needed professional help I was so depressed I didn’t’ care if I got it so I kept putting it off.  Finally with Robin’s gentle prodding I went back to Mayo and began treatment but you don’t beat depression overnight or even in a few months.  Sometimes it takes a considerable amount of trial and error before the right treatment is found.  That came right around my four year post surgery mark but not until i had lost 75 pounds from lack of appetite.  i was left weak but finally energized and optimistic again.

Through all of that Robin, the lunatic who married a dying man, was steady as a rock. She had her hands full running two businesses and our home plus being my caregiver.  I’ll never know how she did it and kept her wits about her but she never flinched.  She is the most amazing, compassionate and competent human being I have ever encountered.  She is an unflappable optimist who doesn’t have a selfish bone in her body.  I don’t know why I was so blessed to find this woman but  as the man said, “Somebody up there likes me.”

That takes us to today…five plus years later and I feel wonderful but most importantly I get to spend time with Robin.  If a physician could have written a prescription for love, happiness and contentment it would simply have said, “Robin.”  It is only because of my donor that I am getting to spend time with this wonderful, gracious, smart, talented, funny and super woman.  The heart of a stranger has allowed us to really get to know each other.  There is no greater gift my donor could have given me and yes, that’s selfish but in this case I think selfish is OK.

Like many recipients my life has changed in other ways as well.  Because of a transplant I’m a different person.  I hope I’m a better person.  I know I appreciate life a great deal more than I ever did before, but it is not only my life I appreciate, it is everyone’s life.  When you experience death or near death, “life” takes on a whole new meaning.  My reaction to being a transplant recipient is that I owe my donor big time.  While I can’t do anything for him directly I can honor his memory by doing everything in my power to help others live.  That’s why I am such an outspoken donation/transplantation activist.

While science generally rejects the notion, some recipients feel they have taken on some of the characteristics of their donor.  I can’t say what my donor’s characteristics were because I didn’t know him but my life has changed as a result of having his heart.  He may well be the influence behind some of the changes I have experienced which include:

  • I am much less selfish than I was before and spend as much time as I can trying to help others.
  • I am much less concerned with material things than I used to be.  “Appearances” aren’t important anymore.  I don’t have to have a new car, wear the best clothes or get recognition.  I simply don’t care about those things.
  • I am far more passionate about causes I believe in like fairness, equality and justice.  I particularly feel a need to help the economically disadvantaged, the disabled, the sick, the elderly and, of course — children who suffer so many indignities of which they should not even be aware, never mind being forced to experience them.
  • I am more of a peacemaker.  In the past I was a warrior, a bulldozer who when advocating for a cause would show my commitment by rolling over those who disagreed and sometimes belittling them in the process.  Now I believe in finding common ground and forming friendships despite serious disagreements.
  • I am much less self-centered than I used to be.  I have come to accept who I am and as a result can concentrate on the needs of others.
  • I have always enjoyed learning but it has almost become an obsession since my transplant.  My thirst for knowledge about a wide variety of things knows no bounds.  I can’t get enough information about the wonders around us like the sun and the stars and the miracles, medical and otherwise that we experience every day.
  • Working with my hands has always been enjoyable for me but since my transplant I have become addicted to woodwork.  I’m not the Michelangelo of woodworking, hell I’m not even a Barney Fife but I am determined to get better at it.  Unfortunately it is my friends and family who must suffer receiving my woodworking “gifts” and then acting as though they like them.

Being a transplant recipient is an amazing experience.  It is one of which I am always aware and I mean always that I have someone else’ heart.  There is no time in my waking hours that I am not aware that I am alive because a generous stranger give me his heart.  I owe him and his family more than I could ever repay no matter what efforts I make for the rest of my life.

If you, the reader, are an organ donor, let me thank you on behalf of the unknown lives you may save as a result of your selfless action.  If you are not an organ donor, please consider it carefully.  You can save or enhance the lives of up to 60 people just by signing up and you can do that so easily.  Just go to www.donatelife.net and follow the directions.  Then, tell your family what you’ve done so there is no chance that anyone will object when the time comes to fulfill your commitment.

Earlier in this story I mentioned my Facebook Group and Blog. Let me take just a moment to explain how they came to be.  Just a couple of months after my transplant I got a call from Mayo asking if I’d be interested in starting a Facebook Organ donation group and in writing a blog.  I knew what neither were but decided I needed something to do during my recuperation and said, “Yes.”  With Mayo’s help I got started immediately.

That was the beginning or Facebook’s Organ Transplant Initiative group (OTI) and Bob’s Newheart blog on WordPress www.bobsnewheart.wordpress.com .  OTI now has almost 2,500 members and I’ve posted 140 blogs on donation/transplantation issues that have been read by over 100,000 people in at least 20 countries.  I believe that I was given my new heart to do this and it has become my new passion.

None of this would be possible without all you wonderful people who helped to make OTI a success and who read my “Stuff” on WordPress.  By offering your kind words, thoughts and deeds you are doing a great service to those who suffer while waiting for organs and those who are recovering from receiving them, never mind the caregivers and others who are so critical to the donation/transplantation process.  Words cannot express my fondness for all of you and my gratitude for your involvement.  All I can say is, thank you from the bottom of my donor’s heart.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

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