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 coaster 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 about 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 wouldn’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 when 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 carefully 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 hospital 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. I 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, gulp” 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 much 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 hometown 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 the 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.
The 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 that 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 thought. “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. 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.
“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 incredible, 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. When 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.
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 shows 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 tent 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!
Bob 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 firstname.lastname@example.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love. 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.
“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.
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.
I 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 for 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.
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 briefcase 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 from 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. Instead, 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.
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 were 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.” The 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.
“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 needed 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 have 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 would 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. About 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 parking 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.” Needless 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.
The 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.
For 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 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?”
“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. Me 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.
While all this was happening Robin and her sister April were sitting in the surgical waiting room. It 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.
“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.
I 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 back 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.
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.