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People Who Say they Can’t Quit Smoking Are Gutless Liars!


By Bob Aronson…former smoker

smoking cartoon

if that headline doesn’t get your attention I don’t know what will.

“I can’t quit smoking,” is BS.  You can quit, but you are a pansy, no guts.  You can spread that “Can’t quit” manure elsewhere.  It doesn’t work here because it’s a big lie.

Do I have your attention?

This post is aimed at smokers, whether you are just starting the habit or have smoked for a while and are thinking about quitting.  I am writing this to alert you to smoking related issues not to draw attention to myself or my condition.  I seek no sympathy nor attention.

Yes, this is a posting that encourages you to ignore the temptation to start smoking and/or to quit smoking if you already have the habit. In the interest of full disclosure let me tell you why you should read this. You should do so because I offer hope and straight talk.  No one could possibly have had a greater addiction to cigarettes than I did.  And…I know about addiction, too.  Not only did I quit smoking (1991) I also quit drinking (1982) after years as a practicing alcoholic.   I have not had a drink since.

Let me get right to the point.  Even though I quit smoking almost 25 years ago it is killing me.  When I die I would imagine that my addiction to cigarettes will be the chief cause of my demise because I have emphysema and asthma, Chronic Obstructive Lung Disease (COPD).  Had I not quit smoking when I did I would have been dead long ago.  Recently my pulmonologist told me that If I had continued to smoke,  I would have needed a lung transplant long ago.  For those of you who don’t know me I had a heart transplant in 2007 and smoking may have been a contributor to the heart failure that caused me to need that life-saving surgery.

I know how hard it is to quit smoking and I refuse to accept, “I’ve tried many times and cannot quit.”  That, my friend, is pure unadulterated BS.  You are only fooling yourself with that nonsense.  The fact of the matter is you don’t have the guts to quit.  You can’t handle a little discomfort so you light up another smoke and say, “I can’t quit.”  And again I say, “BS.”  Tough talk?  Damned right it is.  If you think the discomfort of quitting smoking is hard to handle try the discomfort a of lung cancer as an option, or maybe emphysema.

I smoked up to 4 packs a day for 37 years and I quit.  Was it easy?  Of course not!  It hurt, it was painful, I was an SOB to live with, but damnit I quit.  I used every gimmick out there to help me break the habit and finally was rescued by nicotine gum.  I probably quit smoking 3 or 4 dozen times maybe more.  You see, you don’t quit once, fail and say, “I tried, I can’t quit,” because you haven’t tried.  The way to quit smoking is to keep quitting until you quit. You never give up, you quit every day, several times a day until finally you have quit for good.

I always kept my smokes and a lighter in my shirt pocket.  Almost every day when I left home for work I would automatically reach for a cigarette and the lighter so I could get my hit of nicotine.  Finally, I got to the point where every time I reached into that pocket for the cigarettes and lighter I would pull both out and throw them out the window of the car.  I did that every day for weeks.  Later in the day I’d find myself buying another pack and a lighter and the next day I would toss them out the window. “The hell with littering,” I would say, “My life’s at stake here.”

After about a year of all this nonsense I finally had my last cigarette in January of 1991.  You see, I had just watched my father die of emphysema.  At least something good came of his death.  I was able to quit.  I was addicted to nicotine gum for two years after that and lemon drops for another year but I quit, by God, I quit.

You know why it’s so hard?  It is because you are an addict, just like any drunk or junkie.  When you hear someone say, “A cigarette tastes so good after a meal,” that’s just more BS.  The reason it feels good is because it’s been a while since your last cigarette and you are going into withdrawal.  As soon as you light up you stop the withdrawal and feel better.  It is no different than getting a hit of heroin or a good slug of booze.

From the time I was 15 years old in 1954 until 1991 (37 years) when I was 52 years old I was a smoker, a heavy smoker.  Some days when I went to work I would throw 4 packs of cigarettes in my briefcase and finish them before I retired for the night..  That’s 80 cigarettes.

There are approximately 600 ingredients in cigarettes. When burned, they create more than 7,000 chemicals. At least 69 of these chemicals are known to cause cancer, and many are poisonous as well.  Here are just a few of the chemicals in tobacco smoke, and other places they are found:

  • Acetone –nail polish remover
  • Acetic Acid –  ingredient in hair dye
  • Ammonia –household cleaner
  • Arsenic – rat poison
  • Butane – lighter fluid
  • Cadmium –battery acid
  • Carbon Monoxide car exhaust fumes
  • Formaldehyde – embalming fluid

A final note on this subject.  In 1998 I lost my wife of 35 years to lung cancer. She, too was a smoker and she died a horrible death, no one should have to suffer the way she did and the way thousands of others do every day.  Smoking is a terrible, disgusting and deadly habit.  I don’t care who you are, you have a responsibility to yourself and to those who love you to quit smoking.  You must.  After a while the urges disappear and you can live a normal life again.  You might even find that you’ll take great pride in being able to say, “I used to smoke, but I don’t anymore.”

-0-

New heart, new life, new man

Feeling better than ever at age 73

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 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.

Bob’s NewHeart — The Impossible Dream


heart transplant cartoon

“Some men see things as they are and say why.  

I dream things that never were and say, why not”

George Bernard Shaw

This is post number 200 in the Bob’s Newheart Series of blogs on organ donation/transplantation and related issues

On February 17, 2014 I will turn 75.  It is an incredible feat for someone who abused his body as badly as I did.  By my count I have been dead three times. Once from sudden cardiac arrest, once during surgery in a hospital and I suppose once when they took my heart out to give me a new one (maybe that one doesn’t count).  I have to believe that I am only alive today because I was given a mission to do everything in my power to help others who face critical and/or life threatening illnesses.  The social media offer me that opportunity and I have gladly accepted it.

Before I launch into my story I think it is important to point out two factors that may have contributed to my condition but cannot be directly or medically linked to it. First, for 37 years from 1954 until 1991 I was a heavy smoker.  Some days I went through as many as four packs of cigarettes.  There are 20 in a package.  I quit smoking in 1991 because of the onset of Chronic Obstructive Pulmonary Disease (COPD)  and after watching my father die of the same disease in January of that year.  It took many tries, perhaps dozens but finally with the help of nicotine gum I kicked the habit.

I am also a recovering alcoholic.  I was a very heavy drinker for many years.  I won’t go into detail here but finally on July 17 of 1982 I checked myself into treatment at an in-patient center in St. Paul, Minnesota.  I have not had a drink since. While there is no direct medical evidence to tie my tobacco and alcohol use to my heart condition I have no doubt that they were great contributors.  You cannot consume all the chemicals contained in cigarette smoke and the hundreds of gallons of alcohol I drank and not cause damage.  I am quite frankly amazed that I lived long enough to get a heart transplant.

It took 12 years from the time I was diagnosed with Cardiomyopathy (heart failure) until I was listed for and got a heart transplant. When I started the Facebook group Organ Transplant Initiative in 2007 I wrote this mission statement:

The mission of Organ Transplant Initiative is to work to ensure than anyone who needs an organ/tissue transplant can get one. 

Some say that’s an impossible dream.  I refuse to accept that.

Bob Aronson

My Story

St. Paul, Minnesota — it is 5 PM on a Friday in mid-July 1995.  I was having a very difficult time breathing all day but chalked it up to my life long battle with asthma.  I removed my albuterol rescue inhaler from my shirt pocket and took two puffs inhaling deeply and holding my breath for a few seconds to give the drug time to work.  It didn’t. I tried again, it still didn’t work so I thought that either the medicine was old or the inhaler just wasn’t working properly.  My breathing was not only labored it was sometimes audible.

IGIF shot bob by TV was the founder; owner and CEO of the Aronson Partnership, Inc. a highly specialized communication consulting firm that helped executives communicate their messages in crises, media interviews, testimony and presentations.  It was going to be a long day because my last coaching session of the day would begin at 6 PM and end around 9. My staff left at 5 so I would be there alone with my client. Being a consultant doesn’t require a lot of physical activity so I thought I could make it through the evening and then use my nebulizer when I got home.  A nebulizer provides for a longer more effective dose of albuterol, the asthma fighting drug.

At 6 o’clock my client arrived.  She was a well-known professional spokesperson jojo cartoon flyerfor a syndicated home improvement TV show and had hired me to help refine her on camera skills.  My studio was equipped like a TV studio with lights, cameras, microphones TV monitors — everything necessary to simulate the real thing. As we worked I stayed seated, unusual for me because I am usually an energetic person who moves around the room to keep my client engaged.  I knew, though, that if I got up the session would be over because my breathing was becoming more labored.  I struggled through three hours and finally my client left pleased with the session. parking ramp 3

Normally I would straighten up the studio before I left.  Not this night.  I turned out the lights, grabbed my briefcase, locked the door and took the elevator down six floors to the parking ramp. I had a breakfast meeting with a client that day and arrived at the office late.  The ramp was almost full so I had to park at the far end which was at least a block from the door of the building.

When I exited the elevator and entered the ramp I was in a very bad way.  I was struggling for every breath and my legs felt like rubber. Repeatedly I tried to use the inhaler but to no avail.  It gave me no relief…very unusual.  Stumbling my way to the car through the deserted ramp I was stopping about every ten feet to lean on a post, another car, anything that would support my weight for just a few seconds.  Had anyone else been in that ramp that would have sworn I was drunk. I was so starved for oxygen that my vision was getting blurred.  I could see the outline of my car perhaps 50 yards away but it might as well have been on the moon.  I was beginning to believe I could not make it there and panic began to set in.  Panic made my breathing even more labored. Half way through the ramp my legs buckled under me, I dropped the man on all fours 2briefcase and fell to my hands and knees. I remember thinking that I had not had an asthma attack this severe since I was a child.  I looked around — there was no one in the ramp and very few cars.

On all fours gasping for air I somehow managed to collect myself, pick up my bag and stand on wobbly legs.  Leaning on cars helped but there were few of them in the ramp, I kind of lurched from car to post to car. I don’t know how I did it, but I made it to the end of the ramp and my car — falling twice more on the way there.  The knees on my suit pants were a mess, one was torn and my hands were dirty, gritty and bloody from breaking my fall palms down on the concrete floor, somehow I had cut myself and I didn’t care..  My glasses were streaked with perspiration and more opaque than transparent. And…I was cold, bone chilling cold. Perspiration had soaked my clothing and chilled me even though it was a summer night.

I opened the door, sat, started the engine and despite being cold turned on the air condition thinking the cold air in my face might help.  Soaked with sweat, grimy and a  little bloody from three falls in the ramp I was still struggling to breathe so I loosened my necktie and just sat there trying to calm my nerves and catch my breath.  Because I was no longer exerting myself my breathing slowed a tiny bit but enough for me to believe I could make it.  The cold air from the AC unit felt good on my face and I sucked in as much as I could but it wasn’t nearly enough.  My heart was beating so fast it felt like it was trying to pound its way through my ribs to find freedom outside of my chest.

That’s when I remembered I had just purchased my first cellphone (they were pretty clunky by today’s standards and did nothing but make calls,)  I took it fromcell phone from last century my inside coat pocked but instead of dialing 911 I called home. When my wife answered I breathlessly told her I was having a serious asthma attack that I would pick her up and she could drive me to an ER.  In retrospect a dumb plan, but I really thought it was asthma.  Not once did I even consider that it could be something else so I knew I could make it.

That’s when I made my second stupid decision.  In my oxygen starved brain I determined that going to a nearby major medical center would be a wrong move because their ER was always very busy and the wait would be a long one.   Emergency roomInstead, I asked my wife to drive me to a small rural hospital in Hastings, She objected saying I’d be better off at United in St. Paul but I countered with the fact that the Hastings ER would not be jammed like a bigger hospital. I was right. There was not a single patient there when we arrived.  She was right, too, Hastings was the wrong place for me.

By the time we got to the Hastings ER I was turning blue and almost unable to breathe yet somehow summoned up the strength to walk in and make it to the admitting desk where I struggled to tell the nurse on duty, “I’m having a very bad asthma attack, my inhaler is not working.” I think I fell into the chair next to her. The nurse quickly took my vitals, listened to my heart and said, “I don’t think it is asthma,” and called for a crash cart.  There was a scramble as I was placed on a gurney, rushed to a room, wired, had an IV placed in my arm and was given a tablet of nitroglycerin to hold under my tongue. ECG leads were taped to my chest, someone shot something into the IV, and a Doctor appeared, giving orders.  I was nearly unconscious and confused not knowing what was happening I just kept thinking, “What’s wrong with these people, all they have to do is give me a shot of adrenalin and I’ll be fine.”  The nitro made me sick to my stomach but my breathing was easing. United hospital st. paul

Then the Doctor spoke up, “Mr. Aronson, it’s not asthma, it is your heart and we can’t handle you here.   We’re sending you by ambulance to United Hospital in St. Paul (United was a major heart center and the hospital I chose not to go to in the first place). By now I was stabilized and almost breathing normally but the ambulance wasted no time and made the 20 or so miles from Hastings to St. Paul, Minnesota in about fifteen minutes with the aid of the siren and flashing lights.  I told the attendants I felt fine and they should just take me home but they were having none of it and brought me straight to the hospital where we were met by a medical team that rushed me to cardiac intensive care.    That’s when the excitement, the drugs and exhaustion caught up with me and I lost consciousness.

When I awakened I was surrounded by people who wereecho 2 setting up some equipment.  “We are going to do an echogram, Mr. Aronson, and that will tell us how well your heart is functioning so please lie on your left side.”  I did and the operator of the machine got on my right side, reached over with what looked like one of those mortar things that pharmacists use and placed it on my chest.  It had some kind of cold wet clear goo on it and as he moved it over my chest I could hear my heart on the monitor going “squish boom boom, squish boom boom.”  echo screen 2The monitor was in front of me so I could see what the operator saw. The difference was that he knew what he was seeing, it meant nothing to me.  Again, though, exhaustion set in.  Each of my eyelids felt as though they weighed twenty pounds.  I could not stay awake and drifted off only to awaken to the sound of the echo machine being wheeled out of the room about twenty minutes later.  As the operators were leaving I thought I caught a glimpse of my wife and some family members but again fell into a very deep sleep.

It was morning when I began my return to the conscious world and for a while I was confused, I didn’t know where I was until I heard the voice of my daughter Hank.  “Hi daddy, we are all here with you.”  For just a minute I didn’t know where “here” was or why they were all there.  Then I heard the beeping of a monitor, saw the IV drip, felt the oxygen tubes in my nose and saw the nurse reading my blood pressure.  I got the idea that the situation was not a good one.  Families don’t gather first thing in the morning in a hospital room unless you are in dire straits.

I looked around and saw my wife, two daughters and their husbands, my son and his wife and several medical people.  My usually jovial family looked very somber. “All of this, I thought, for asthma?” forgetting about the echogram and what the doctor in Hastings had said just a few hours earlier.  Just then a very distinguished gentleman walked in.  Dressed like a model from Gentleman’s Quarterly, he was relatively young but had white hair and spoke softly but firmly. “Mr. Aronson,” he said. “My name is Dr. Thomas Johnson and I’m a cardiologist.  You have a very serious heart problem.  It’s called cardiomyopathy which means your heart muscle is failing and you may need a heart transplant.”

“Boy,” I thought, “that’s laying it on the line.”  I felt as though I had just had a nuclear weapon detonated in my gut.  But strong men don’t show weakness in front of their family.  I noticed that my youngest daughter was crying and everyone else was silent.  “Ok, I said, if that’s what it takes let’s do it.”  I had a passing acquaintance with organ transplants but really had no idea how complex the process was or how difficult it was to get a heart, plus I had to put on a brave face for my family.

While my mind was racing Dr. Johnson began to explain my condition.  His style was firm but calming and compassionate.  He explained that while they would do further testing he was certain that I suffered from cardiomyopathy which is a very fancy term for heart failure.  He pointed out that I would likely be able to get out of the hospital in a few days and go back to work but that my energy level would not be the same. He also said that while I would likely not need a heart transplant right away it was inevitable that I would need one at some point.  He said he had scheduled a stress test for later that afternoon.  I thought the whole situation was a stress test and that this must be a bad dream. Someone brought in a tray of something that resembled food but I wasn’t hungry just very, very tired and I drifted off again after telling my family to go home and come back later. It was obvious then that I was in no immediate danger at least not anymore. cardiac stress test

“Mr. Aronson,” the voice said, “Mr. Aronson, it’s time for your stress test.”  Again feeling dazed and almost hung over I awakened and was helped up so I could sit on the side of the bed.  I was given a fresh gown and robe to put on and helped into a wheelchair.  A friendly and talkative male nurse pushed me through a series of hallways to the stress test room.  It was tiny.  There was room only for a treadmill a table with a lot of electronic gear on it and a chair.  Dr. Johnson was already there and I was wired again with several of those sticky leads that rip the hair off your body when they remove them. I had no idea what a stress test was other than getting on a treadmill.  I found out quickly enough that it involved walking on the treadmill as the operator slowly increased the speed and the grade.  Dr. Johnson was there carefully watching me and the monitor.  The speed and grade changed every couple of minutes and by the time I reached 8 minutes I could go no longer, my legs were rubber, my lungs were about to explode and my heart felt like it was going to hammer its way out of my body and then out of the room. I did not know that one could get so thoroughly exhausted in 8 minutes.

The stress test was just one of a series of tests, labs and other evaluations that confirmed the initial diagnosis of dilated cardiomyopathy, cause unknown.  My heart was growing larger because it was not pumping enough blood out.  Dr. Johnson explained that my Ejection Fraction (EF) was between 20 and 25.  Here’s what that means.  Normally the heart pumps out about 60% of the blood it contains.  That’s the EF. My heart was only pumping out 25% so in order to contain the excess blood the heart had to grow but there’s a limit to the growth and to how long your other organs can survive when they are not getting enough blood. In a few days I was released from the hospital with a boatload of medication and strict diet orders. Sodium intake was limited to 1800 milligrams a day, liquid consumption was capped, I was told to lose weight (at 6’4” I weighed about 240 lbs. and have a large frame so I didn’t appear to be overweight) and exercise, lots of exercise.

I took it all very seriously and followed the diet and all the other restrictions and suggestions very carefully.  I dropped about 40 lbs. and with daily exercise got in the best condition of my life.  Each morning I would get up and do 75 stomach crunches, 100 pushups, walk the treadmill for a half hour, do about 40 curls with 20 lb. weights in each hand and then go to work. Actually I felt better than I had felt in a long time but I tired easily.  By 10 AM I would get sleepy but I’m a Type A personality and push myself so I kept up the same pace I had always been on. I was a consultant and traveled a great deal. At least once or twice a week I was running through airports to catch a plane or make a connection somewhere and for a while I did pretty well but I could feel myself slowing down.  I saw Dr. Johnson regularly and he kept adjusting my meds and re-testing me but it was not yet time to be listed for a heart transplant, I was not sick enough to qualify.

Then in 1996 we got the news that my wife, Avis, had lung cancer.  They found it in her legs which meant it had metastasized or had already spread from her lungs to other parts of her body.  The news was a devastating blow for the entire family and I simply forgot about my condition as I took her to the series of chemo and then radiation appointments.  The side effects were sheer hell and even expensive drugs like Zofran for nausea didn’t always work.  The treatments took place over several months and took a heavy toll on her.  Cancer is ugly but so are the treatments. 

Slowly, though, the combination of therapies started to have a positive effect.  Her hair grew back, the pain was gone and there was no sign of the cancer.  We all thought that maybe she had beaten it.

We were feeling good about Ave’s progress and I was still following all the instructions that had been given to me but my health was deteriorating, I could feel it.   My ejection fraction was about 20 and I was tired all the time.

Ave did quite well for about a year and then in October of 1998 she started complaining of pain again and tests made real our worst fears.  The cancer was back but far worse than it had been originally and there was no longer any treatment that would offer hope.  The disease had invaded not only her lungs but also her colon, legs and brain.  She entered United Hospital in St. Paul in Mid-October never to return home.  She passed away with her family around her on November 28 of 1998.

After the funeral I took time off to try to figure out my life.  35 years of marriage does not prepare you for living alone.  It was awful.  Staying home only made things worse.  My way of dealing with the loss was work.  I spent more time than ever at the office and on the road.  I traveled even more than I had in the past.

Finally, exhausted, I decided I quirinale interiorneeded a rest away from phones, clients, employees and everyone else.  In May of 1999 I  booked a flight to Rome, Italy to see my friends Ron and Carla Marinelli.  They arranged for me to stay at the lovely old Hotel Quiranale on the via Nacionale.  The rest, the food, the surroundings did wonders for my mental health. Each morning I would arise, go to the breakfast restaurant and quirnale breakfasthave a cappuccino, some biscotti, melon and a little bit of prosciutto (Italian ham and definitely not on my heart diet).  After a couple of days the waiter didn’t ‘even ask me what I wanted, he saw me come in said, “Buon Giorno” and brought what I just described.

The visit with Ron and Carla was magnificent.  Ron was the man who hired me for my first job as a radio announcer in 1960 in Hibbing, Minnesota.  He later married Carla, an Italian national, and moved to Rome where he taught English as a second language to Italian military officers. One day Ron and Carla decided we should take a trip.  It was a lovely surprise, too.  They sassoferrato, Italywould take me to Sassoferrato to the North East of Rome in the mountains of the province of Ancona about half way to the Adriatic Sea.

The trip was significant because Sassoferrato is the town in which my grandmother and grandfather on my mother’s side were born and from which the emigrated in the early 20th century.  I won’t go into detail but to stand near the sulfur mine where my grandfather worked and to walk the roads where my grandmother delivered the mail stirred my emotions in a special way.  But all of this is another story for another time.

I left Italy feeling good and arrived in the U.S.  ready for work and threw myself into it like never before almost forgetting that I had a very serious heart disease. It was about then that I met Robin Diffie.  She lived in Jacksonville, Florida a city I visited often because the Mayo Clinic there was one of my clients.  We hit it off immediately and in August of 2000 were married in my home in Eagan, Minnesota, a St. Paul suburb.

It had now been five years since my diagnosis and while my ejection fraction had not changed I was noticeably tired more often. byerlysAbout a year later I was driving to visit a client that had an office in a shopping center across town and got hungry so I stopped at a supermarket and got a deli sandwich that came close to my dietary requirements.  I sat in the car and ate it then, with seat belt off drove around the corner to my client’s office.

As I entered the parking lot I slowed to about 5 or 6 miles an hour to pull into a business center parking lotparking place when suddenly everything turned the brightest white I’ve ever seen…cars in the lot next to me danced in the light and I felt really good but sleepy.  I know not how much later it was that I awakened but I was slumped over the steering wheel and the car was up against a tree.  I awoke with a terrible headache and my balance and speech were not quite right.  Somehow I made my way into the client’s office and told them I had fainted.  The client was a medical company and they told me to stay seated and called Robin who came to get me and took me to the hospital.

At the emergency room a cardiologist examined me and said, “You need to have a defibrillator implanted, it appears as though you may have suffered sudden cardiac arrest and running into that tree may have jarred you enough to save you, it was a good thing you weren’t wearing your seat belt.

I said, “Ok doc let me check my calendar and I’ll see when we can schedule the defibrillator.”

He chuckled, “No,” he said, “We need to do that right now, you could have another attack any time and the defibrillator could save your life.” defib icdNeedless to say, we were in surgery within the hour and the Medtronic Implantable Cardioverter Defibrillator (ICD) was implanted.  It was a little smaller than a hockey puck and was just to the right of my left shoulder.  You could hardly tell there was anything there.  The bad news was that my heart condition was changing and not for the better.  This new development was not good.  And..if in fact I did have cardiac arrest when I hit that tree I was extremely fortunate because only about 5 percent of cardiac arrest victims survive.  It is unpredictable and there is really no way to diagnose it.  About 350,000 people die every year due to sudden cardiac arrest.  Those who survive usually do so because of a defibrillator.  Either the implanted variety or the kind you find hanging on walls in public buildings.

By 2003, eight years after my diagnosis I was on a drug called Amiodarone which is used to correct abnormal heart rhythms. The medication is prescribed only for people with serious heart problems. It is a powerful and effective drug but also one with many side effects some of which are potentially fatal.  One of the side effects and the one that most affected me was weight gain because Amiodarone can have a very negative affect on the Thyroid gland.  For me the result was ballooning up to nearly 250 pounds despite my making every conceivable effort to stop it.   For the first time in my life I was buying pants with a 40 inch waste and had developed a belly that hung over my belt.  I took to wearing suspenders to keep my pants up.   I didn’t like the way I looked and I couldn’t do a thing about it.

It was summer and I had just showered and shaved and was getting dressed for work when I felt as though a mule or a horse had kicked me in the chest.  The impact sent me to my knees in the bathroom and at first I didn’t know what happened. Slowly it occurred to me that my defibrillator had just gone off.  That means the rhythm of my heart was also off so I called 911 and explained what happened.  The voice on the other end said, “So what would you like us to do?”

I responded, “I don’t know, I thought you could tell me what to do.”

She said, “Often patients do nothing and sometimes we take them to the hospital.  Would you like an ambulance?”

“I guess,” I said.  Not really sure what to do but still unsteady on my feet as a result of the shock. The ambulance was there in a flash and I walked out the front door of our town home.

Tambulanche attendants made me lie down on the gurney and carted me into the back of the big Red and White vehicle where they wired me with the electrocardiogram and started an I V.  I heard the paramedic on the radio saying something about atrial fibrillation and they turned on the lights and siren.  Déjà vu all over again as we raced for United Hospital in St. Paul.

Robin had been out when I was shocked by the ICD but I called her immediately and she met us at United. More tests and finally the same Doc that placed the ICD in my chest came in to say that I needed a new and different one.  Mine had two leads and they wanted to put one in that had three leads but that meant the procedure was a little trickier because one lead had to go behind my heart.  He said they would do the procedure the next day but that he was going to Greece on a vacation and one of his highly skilled colleagues would do it.

They wheeled me away in the morning for a routine procedure that almost killed me.  In order to place the ICD and connect it they have to stop your heart for a while and then start it again.  Well, they had trouble with the third lead; they couldn’t get it in no matter what they tried so they gave up on it and decided to try again on another day.  Now they had to restart my heart — again and again they tried the paddles but it wasn’t until 6th or 7th attempt that the damaged organ began to beat.  Now there was a new concern because a long time had elapsed and there was fear of brain damage.

Robin tells me that when I awakened I was babbling.  What I was saying made no sense and I stayed that way for a while.  The hospital sent a neurologist in to see if I had suffered brain damage in the aborted attempt to place the third lead of the ICD.  By the time he got there I was doing a little better so the questioning began.  Who are you?  Where were you born? What month is it?  Robin said she thought I was doing pretty well.  Then the Doctor asked who the President of the United States was and I said, “George W. Bush the SOB.”  I don’t remember saying that but Robin said she knew then I was OK. That episode, though, was not the end of the saga.

The third lead still needed to be connected and I couldn’t leave the hospital until it was.  They said I could rest for a day or two and the would try again.  They did in the following week and this time with a different doctor but the same result.  They could not attach the third lead and again had trouble reviving me. I told the medical team that there would be no more attempts until my Dr. returned from his vacation and no one argued the point.  Finally when he returned he was amazed to find me still in the hospital.  It had been almost three weeks.  The next day we went back to surgery and this time at the hands of the master it worked flawlessly and I was released.

All of this had taken a toll. I was still working as a consultant but had to change my style.  When I trained or coached people for various communication situations or when I made a presentation on communication I was animated, energetic, walked around a lot, invaded people’s space and did a good job of getting and keeping people’s attention.  I could no longer do that.  Moving about left me exhausted. For a while I tried to walk around, sit a little and then walk around again but I finally had to give in and do my presentations sitting and I always explained to my audience why I was sitting.

mayo rochesterFor about 25 years the Mayo Clinic in Rochester, Minnesota had been my client, at least once a week I traveled from the twin cities to Rochester to work with Mayo physicians or executives and when I did I’d stay at a Hotel about a block from the studio they had set up for me.  I found that I could no longer walk the block without stopping several times to rest and I knew the end of my career was near.  That’s when Robin and I decided to move back to her hometown of Jacksonville because there was a Mayo Clinic there also and they had an excellent record of getting organs. Reluctantly I told my long-time client Mayo that I had to retire, that I could no longer take the physical strain of doing the work and I recommended another consultant.

Then came the task of selling our Eagan, Minnesota town home.  It was 2006 just the beginning of the real estate market bubble burst.  We purchased a home in Jacksonville thinking our very nice town home would sell quickly. It didn’t.  It took ten months to sell it after we had dropped the price several times.  Needless to say we took a bath on that sale.

The next step was to go through the transplant evaluation process at mayo jacksonvilleMayo in Jacksonville..  There was a battery of tests over a period of several days but the outcome was never in doubt. By now my ejection fraction was around 10 I could not walk from our family room to the bathroom which is about 25 feet without stopping to rest.  It was clear to me and to my docs that I was in end stage cardiomyopathy.  I was dying and there was nothing that could be done short of a heart transplant. “Ain’t gonna happen,” I told myself. “I am 68 years old and not hospitalized, there’s no way I get a heart.  Certainly if there is one available it will go to a much younger and sicker person.”  I had pretty much given up hope.  The Mayo clinic hadn’t and neither had Robin. Dr. Hosenpud, my transplant cardiologist at Mayo took my case before the transplant committee and I was approved for listing.  I gave it no further thought.  Although I was convinced that I would not get a heart I said nothing to Robin or my family.  I’ve always prided myself on being very logical and the logic said I would not get a heart.  Well, Mr. Spock, the logic was wrong.

It was thirteen days after being listed when the phone rang.  Here’s the play by play. Tuesday August 21, 2007 noon.  My home phone rings, “Hello.” “May I speak with Robert Aronson please?”

“Speaking.”

“This is Dr. Hosenpud from the Mayo Clinic in Jacksonville.  We may have a heart for you.”

Silence, confusion, “Did you say you may have a heart for me?”

“Yes,” pack a bag with some essentials and come to the clinic in the next couple of hours, I’ll see you then.” Click.

I hollered for Robin who was in the next room.  “I struggled to hold back tears when I said, “Dr. Hosenpud called, and they may have a heart for me.” I have always taken pride in being able to be cool under fire.  I don’t panic, I logically work things out.  Not today.  I think I packed a tennis shoe a sandal a toothbrush a comb and some mouthwash….nothing that made any sense.

I thought I was supposed to rush to the hospital even though Dr. Hosenpud did not say I should.  So we raced to the car and made record time. I had visions of pandemonium when I got there.  I thought I would say, “I’m here for a heart transplant” and all hell would break loose.  I thought there would be people running around, bringing out a gurney for me…tearing my shirt off and rushing me into surgery…Hah! None of that happened.

Here’s reality. mayo receptionMe at reception desk in hospital, “Hi I’m Bob Aronson and Dr. Hosenpud just called to tell me there might be a heart for me and I’m here for a transplant……”  I fired words out like a machine gun my eyes darting here and there and everywhere, my voice shaking.
Receptionist.  “Your name again?” I told her. Click, click, click (computer keys)

“Ok here you are Mr. Aronson.  Have a seat and someone will be out to get you in a little while.”

We sat.  There was no pandemonium.  There was no movement of any kind.  No one seemed to care that the all-important Bob Aronson was here for a heart transplant We waited for maybe a half hour when finally I was called to go back to a room to answer some questions, change into a hospital gown and begin the preparation process.  I was still amazed that no one was excited about what was happening, they were all so calm and just went about doing their jobs.  I wanted pandemonium, I deserved pandemonium, the situation called for pandemonium…but it never happened.  I guess I’ve seen too many movies.

Robin accompanied me to what I called the “Staging” area, that’s where everyone buzzes around you each with a special job, all of them pleasant and very formal.  Mayo has it so ingrained in their system to refer to people by their title (Mr.) I quit trying to get them to call me Bob for fear they might choke.

With the IV line in and working we talked for a while with the people in the room and finally someone said, “It’s time.”  A syringe appeared out of thin air and the needle was inserted into my IV, “Just a little something to relax you,” the voice said and I was in la la land in a split second.

I was tied tightly and they were coming to interrogate me again.  They thought they were being quiet but I could hear them coming, “No, no please not anymore, please don’t cut me up for parts anymore,” I begged as they tugged at my arm.

“Mr. Aronson, are you awake, we are doctors and we are here to remove your dressing,” was what I heard when I awakened from my dream where I was being held captive while my organs were removed. In my haze I vaguely remember some doctors coming to intensive care and ripping off the dressing that covered my chest.  It sounded to me like they had torn a 50 foot sheet of canvas in half.  I felt nothing but I’ll never forget that sound then.

“Are you in any pain Mr. Aronson if so give me a number between 0 and 10…ten being the worst.”  I must have picked the right number because I was out again. robin

While all this was happening Robin and her sister April were sitting in the surgical waiting room.  april diffie guittar croppedIt was August 21st which is also April’s birthday and instead of spending it celebrating she chose to sit with Robin praying for my recovery.  Robin and April are people who gain great satisfaction from giving and in helping others.  These sisters, like their parents are generous and considerate to a fault. T

The next time I awoke I was more alert and Robin was holding my hand and saying, “It’s OK, you are fine and you have a new heart.

I felt a great sense of relief, like a huge weight had been lifted from my shoulders and I was thirsty, so incredibly thirsty.  I asked for water and a nurse brought me ice chips. I sucked on those for a while and then fell asleep again.  I don’t know what time it was when I once again blinked myself into being awake but Robin was gone and it was just me, a bunch of beeping, flashing machines and a nurse.

“Water,” I feebly said.

“Not yet,” she said with what sounded like attitude. I was so dry my lips were stuck together, my tongue felt a foot thick, my throat was parched and I was almost without a voice because of the tube that had been down my throat.

“Please,” I’m so thirsty.

glass of ice chipsI’m sorry sir you can only have ice chips once an hour.”

“It’s time for once” I said may I please have the ice chips now?”

“In ten minutes,” she said.  At that moment that nurse became the “Ice Nazi.”  I remember watching the clock waiting for the next hour so I could get more ice chips but despite my impassioned pleas, appeals to fairness and kindness and outright sycophantic flattery she never budged a second.  I got my ice chips exactly on the hour not a split second sooner or later and….I lived.

Once released from the hospital I entered cardiac rehab where I met a strange mixture of people.  I quickly found that while all of us had transplants in common some were more committed than others.  One man whom I shall never understand just refused to comply.  He wouldn’t follow the diet or the exercise regimen.  He was very nice but just wouldn’t comply despite being alternately cajoled and chewed out by both physicians and nurses.  I don’t know what happened to him but his survival chances weren’t good. Conversely there were some there who so desperately wanted to live they would have doubled their effort if asked.  I was one of the very oldest people in the rehab program at the time and decided that the older you get the more you realize the value of life and the harder you are willing to work to stay alive.

Lee AaseI hadn’t been out of rehab for but a few weeks when a friend and former Mayo Client Lee Aase called me.  Lee is the social media guru for the Mayo Clinic (the whole system).  He is a 6’5” blond Scandinavian with a winning smile and attitude.  Lee could gain the confidence of almost anyone in a matter of seconds based on personality alone. And…he is one of the brightest communications professionals I know.

Because of my age my recovery from the heart transplant was slow. My body just didn’t want to regain its strength but I could still think and I could still type and the internet kept me connected to the goings-on in the world.  When Lee called me at the end of October 2007 to suggest I get involved in the social media on behalf of organ donation I had no idea what he was talking about.  When he mentioned Facebook and WordPress I had not heard of either of them.  I was somewhat familiar with blogs but had never written one and had read only a few. What rang my bell was when Lee said I could use these forums to promote organ donation.  I knew I wanted to try to pay back the gift of life that was given to me by a stranger but I had no idea how I would do it.  Lee just opened that door.  He took a great deal of time on several occasions on the phone to “Train” me in the use of social media.  He helped me set up the Facebook group and my WordPress blog and it was Lee Aase who came up with the name, “Bob’s Newheart.”  And so it was on November 3rd 2007 that Organ Transplant Initiative and Bob’s Newheart were born.

It was also on or near that date that I began to suffer extreme pain for reasons unknown.  Some of it may have been the result of the position the surgeons placed my left arm so they would have better access to my heart.  Whatever the cause the pain was extreme and it was spreading and debilitating. Both shoulders were affected as was my neck and lower back.  Sometimes the pain was so great I sat in my recliner and cried.  Even powerful painkillers only dulled it..it never went away.  Specialists gave me injections in both shoulders which helped.  Later it was determined I had torn rotator cuffs in both shoulders but not how I got them.  The pain seemed endless and in fact lasted for over a year.  Oxycodone helped but did not kill the pain completely. In the meantime I would get up early in the morning and take a pain pill so I could tend to the Facebook group and the blog.  It was only early in the morning that I could produce anything that made sense.

As the day went on the pain grew and I was unable to think never mind write anything worthwhile.  I could not drive because of the pain and often because of the pain pills I would forget to set up my meds for the week. The narcotics, I believe, also caused me to forget to eat so not only was I not following the suggested diet I wasn’t following any diet Robin had her hands full.  She had two businesses that she started and was running out of our house and she had me to take care of.  She drove me to medical appointments, took care of my needs at home, reminded me to set up meds and renew prescriptions and made sure I ate, even though I didn’t want to.

The biggest challenge for both of us was that I was becoming increasingly more depressed.  Because of the pain I slept in my recliner in the family room at the depreessionback of the house.  The comfortable leather chair was in a corner of the room that was naturally dark – a great place to be depressed.  When I awakened each morning I would leave the lights off …sometimes I would shower, often not.  I didn’t care about anything.  I would sit for hours with the TV on but never look at it.  It created flickering shadows in the room but no light.  Usually I had the volume turned down so it was just white noise.  I was crabby, uncommunicative, looked like a homeless, deranged old man and didn’t care and yet I continued with Facebook and WordPress for at least an hour each morning.  It was the only thing I felt I had an obligation to do each day.

One day, though, something clicked, I think it was guilt. Somewhere in the dark reaches of my mind I knew I was being unfair to Robin and I loved her too much to put our relationship at further risk so I called Mayo and asked for psychiatric help.  It was almost two years after my transplant before we found the right combination of medications and then one day even though the sun didn’t come up (it was hidden by clouds)…it did.  I felt something stir — a twinge of optimism of ambition a feeling that life might be worth living after all –.and each succeeding day got a little bit better. The pain diminished, I began sleeping in bed again and best of all began looking toward the future and participating in family life. The anti-depressants I was taking changed my mood completely.  I started doing the grocery shopping, some light housework and best of all Robin had asked me to make some fixtures for her art show booth and I was doing woodwork…one of my great loves.

As time when on my assignments in the woodworking shop became more interesting and challenging.  Whenever Robin needed a shelf, a display case, an ear ring display frame or box or lazy susan I would make it and I found it most enjoyable.  Then we decided to try Jewelry boxes and I found a new artistic niche for myself.  Soon I found myself busier than I ever imagined I would or even could be.  I was up and around and using both my head and my hands to be productive and in the process was helping Robin.  After all she had done for me it was the least I could to help her and it felt good to do it.

So here we are at 2013 and this is my 200th blog. I’ve written and posted on subjects ranging from anorexia to Xenotransplantation.  Our blogs have become internationally famous and respected.  Bobs Newheart is a leading source for transplant and donor information in the world.  We are now averaging nearly 4,000 readers a month. Organ Transplant Initiative (OTI) recently got its 3000th member and we grow larger every day … no small achievement when there are scores of transplant groups on the internet.  Size is important if we are to be an effective advocacy group.  Decision makers listen when large groups of people speak up.  The bigger we get, the more the people who make life and death decisions will listen.

I am not a particularly religious person but I am positive that my life was saved so I could help to save or at least comfort those who languish on the transplant list.  I have committed to my unknown donor and to all who join OTI and read my blogs that I will do whatever I can to get more organ donors, promote and support further scientific and technological research into alternatives to organ donation and to provide information that people need to make good sound medical decisions.  I will not quit until this new heart I have stops beating and then I’m hoping others will pick up what I started and make it even better.

That’s my story.  It isn’t much different I’m sure from thousands of other transplant recipients who underwent some tough times but overcame them.  We all have a thousand thank you notes to send primarily to our donors and donor families but also to medical team that retrieved then implanted a new heart or other organ, the nurses and doctors who took care of us In the hospital, for continuing care and of course our caregivers…what on earth would we ever do without them?

In my case my thanks go to my unknown donor and his family, my wonderful loving wife Robin, my  kids and Robin’s, our grandchildren and great grandchildren my brother and sister and cousins, the Diffie family, Mayo Doctors Hosenpud, Yip and Patel and  coordinator Stephanie Orum and all my Facebook and WordPress friends.

The mission of Organ Transplant Initiative is to work to ensure than anyone who needs an organ/tissue transplant can get one.  Some say that’s an impossible dream.  I say nothing is impossible.

Bob Aronson

The song Impossible Dream from Man of LaMancha seems fitting in many ways but more than anything else it speaks directly to the OTI Mission.

To dream … the impossible dream …

To fight … the unbeatable foe …

To bear … with unbearable sorrow …

To run … where the brave dare not go …

To right … the unrightable wrong …

To love … pure and chaste from afar …

To try … when your arms are too weary …

To reach … the unreachable star …

This is my quest, to follow that star …

No matter how hopeless, no matter how far …

To fight for the right, without question or pause …

To be willing to march into Hell, for a Heavenly cause …

This blog is dedicated to my unknown donor and to all those who are awaiting transplants all over the world.

“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.

A Day in the Life of a Cystic Fibrosis Patient


Bob Aronson, the Author of most of these posts, does not  have CF.  He suffers from Chronic Obstructive Pulmonary Disease (COPD), a distant cousin of CF but related in the sense that he can identify with the struggle to breathe.  He is also a 2007 heart transplant recipient)

A few days ago I posted a blog on Cystic Fibrosis that has attracted a great deal of attention but my blog didn’t do justice to the heroic efforts these patients make every day just so that they can function.  Imagine if you can, getting up every day experiencing great difficulty breathing and then being required to exercise in order to clear your lungs…exercise that requires beating on your chest to loosen the mucus that restricts their ability to function.  Some people must physically beat on their own chests while others, if they can afford it, get a machine to do it for them, sometimes for up to an hour.

I found this account on the internet and rather than re-write it and lift excerpts I choose to publish the entire account unedited.    Your comments are welcome.

My Version of Normal

Lauren Beyenhof, Yahoo! Contributor Network

 http://tinyurl.com/946gllo

Diagnosed with cystic fibrosis at birth, I was not expected to celebrate my tenth birthday. Today, thanks to the hard work of many doctors and researchers, new drug therapies and the support of a wonderful family, I am living and breathing in my late twenties. A day in my life is somewhat routine with room for adjustments as needed.

The first thing I do every morning upon waking is cough. I cough because the thick, sticky mucus so characteristic of cystic fibrosis, has lodged itself in my airways during the night. Some mornings it only takes five minutes to clear my lungs of sputum. Cystic fibrosis patients like me have affectionately dubbed these secretions “lung oysters.”

My first round of coughing complete, I move on to a more dramatic approach to airway clearance. I stumble downstairs to the refrigerator where I keep one of my most effective medications. Pulmozyme, or DNase, is a mucolytic developed by Genetech. When inhaled as a mist via nebulizer, it works in my lungs to cut apart the bacteria that thrive there. Pulmozyme is just one of the inhaled medications I need to open up my airways to their fullest. A bronchodilator in the form of a metered dose inhaler (MDI) goes a long way to help with that. Later in the day, I may need that bronchodilator again if I feel my chest becoming tight.

The highlight of my morning routine is my high-frequency chest wall oscillation (HFCWO) vest. It looks like a life vest. On the front of the vest are two hoses that attach to an air compressor. As the vest fills with air and begins to vibrate, the controls on the compressor allow me to set the frequency, pressure and length of time for the vibration therapy. I wear the vest for a minimum of 20 minutes on days when I feel well and up to an hour when I’m struggling with chest congestion.

After the vest, it’s finally time for breakfast. I am a pancreatic insufficient CF patient, which means that my pancreas doesn’t secrete the enzymes I need to absorb the energy and nutrients from my food. To compensate for that I take enzyme supplements. My breakfast is usually on the order of 900 calories or more and typically includes some fruit, milk and some sort of complex carbohydrates like muffins or cereal.

Breakfast time is hardly complete without vitamin and mineral supplements to replace those I cannot absorb from food. Calcium, magnesium and a multivitamin of the fat-soluble vitamins A, B, D, E and K are swallowed together to save time. I learned long ago how to swallow multiple pills at a time.

Once I’ve taken my vitamins, I get ready for my day. My form of cystic fibrosis has progressed to the point that I have moderate loss of lung function. This keeps me from working a 40-hour week like I used to when I was younger. Three days a week, I go in to work where I enjoy a part-time schedule as an environmental scientist. My employer is very understanding of my needs for managing CF and has given me a reasonably flexible schedule. Some days I’m even able to work from home.

At lunch time I eat another calorie-laden meal, complete with enzymes. I try to eat almost the same thing every day, because I view food as fuel. Sandwiches (yes, plural on a single day), yogurt, pretzels, juice and a soda are my main fare. My lunch break is another chance for me to do some airway clearance and take my MDI to keep my airways open. I keep a small, hand-held nebulizer/compressor in my desk drawer along with a small stash of medications just in case.

After work I come home, take a quick cat-nap on the couch and prepare dinner. Dinner time is where I really shine! I love to cook and my husband loves it when I have a meal ready to go when he walks through the door. I prepare two plates every night. One for me, which has a double helping of almost everything and one for him, a lighter version of the evening’s food selection. When it comes to food at our house, grocery shopping can be difficult since I need high-calorie foods, and my husband, who watches his weight in a manner completely different from mine, likes low-fat or non-fat items.

The dinner dishes having been cleared, my husband and I relax and enjoy the evening together. Usually we watch a bit of television or watch a Netflix movie together. By the time 8:30 p.m. rolls around it’s time for me to once again begin a series of airway clearance and nebulizer medications. I put on the vibrating vest and set it to a pressure that allows me to move relative freely. During this time I lift hand weights and do a lot of stretching to build muscles. Since muscle weighs more than fat, it is important that I have enough of both to give my body the energy it needs not only to sustain me throughout the day’s activities, but to help fight off any flare-ups of lung infections.

Half an hour later, my treatments are complete and I spend a half hour playing with my pet rabbit. Initially we were concerned that an indoor animal would be a problem for my allergies. Our worries turned out to be unfounded. The rabbit only sheds a few times a year, and as long as I keep his cage and litter box neat, there’s no odor. Having a pet is a great source of therapy for me, especially when I’m home sick.

I try to get to bed at the same time every night. Cystic fibrosis patients are encouraged to get at least 10 hours of sleep. I usually manage to get between 8 and 9 hours. After such a full day of taking care of myself, doing my share around the house and making sure my husband is happy, a good night’s sleep is not only much needed, it’s much welcomed.

Aside from all the medications and airway clearance treatments, a day in my life as a cystic fibrosis patient really isn’t that different from anyone else’s day. I just have to be more careful about how I budget my time and my energy so that I can be as normal as possible and enjoy the highest quality of life this world has to offer.

Suggested resources

Cystic Fibrosis is a terrible disease and while progress is being made in treating it, lifespans for its victims are still relatively short. If you’d like to help fund research or offer assistance in other ways contact the Cystic Fibrosis Foundation http://www.cff.org/GetInvolved/ManyWaysToGive/MakeADonation/

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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