When I stand before God at the end of my life, I hope I have given away my talents, my love and my organs and can say, “God I used everything you gave me to benefit others. Anonymous
By Bob Aronson
The time had come. Claire Connelly was finally going to meet the man who had her son Paul’s heart. She would travel from southern to northern California by train to meet him. This trip was more than just an opportunity to meet the man, it was the culmination of a three-year long search. Claire was determined to let nothing get in the way of this meeting. She was so afraid that she might oversleep and miss her train, she drove to the Amtrak station the evening before and slept in her van in the parking lot. Meeting her son’s’ heart recipient had become Claire’s sole purpose in life, so when she boarded that train last Monday morning her heart was in her throat.
The recipient’s name is Ken, he cherishes his privacy and we agreed to identify him only by that name. He is retired and lives with his wife in a northern California city. Claire was not only invited to meet Ken and his wife, but also to stay in their home for a few days so they could get to know each other
Before we go any further, let me take a moment to remind you who Claire Connelly is. I wrote about her in a blog on October 21, 2016. To meet her, even by phone is to love her. She is kind, upbeat, considerate and passionate about life and living. Claire is your favorite aunt — you know, the one who is funny, always has a gift for you and really listens to what you have to say. She’s one of those people who brings energy and love of life into any conversation. When you talk; with Claire you can’t help but feel good.
Claire has suffered unimaginable pain in her life. She had three children, two boys and a girl. Now, only the daughter remains. Her son Pete died of cancer at the age of 46 in 2008, and 49-year-old Paul’s life was taken by a stroke in 2013. Losing two sons within five years is tragic enough, but Claire’s pain was compounded because they died on the same date — October 13. “What are the odds,” she asks. “What are the odds that you would lose two sons within five years of one another and on the same date on the calendar?”
When she was called to the hospital in 2013 Paul was on life support. His driver’s license indicated that he was an organ donor, so when asked if she wanted to donate his organs, Claire Agreed immediately. She does not know who got his other organs, but she’s satisfied to know that Ken got his heart.
I could feebly try to describe her feelings about meeting Ken, but that would be wrong. Her own words provide drama and emotion that I could not begin to write. When she got on the train on December 12, she carried with her some gifts for her son’s heart recipient along with a stethoscope so she could listen to his heart. As soon as she boarded, she sent me a text, “On the train. On way to meet Ken,” she said. Her writing describes the stream of random thoughts that somehow merged like two sets of railroad tracks. Claire kept a journal as the train sped north. If you close your eyes you can almost hear the clacking of the wheels on the track and the whistle being blown as intersections are crossed.
The words that follow are Claire’s from her journal. When you read them you will have the rare privilege of being able to listen in on a mom’s thoughts as she anticipates hearing her son’s beating heart for the first time in three years.
“Getting to meet Ken is the very best Christmas present I could have ever received, but let me make one thing very clear, this is not my story or Ken’s. My son Paul is the hero here. Long ago he made the decision to become an organ donor. All I did was to ensure that his wishes were fulfilled.
Ken and I have been speaking by phone since August 12 and now I’m actually on the train going to meet him and his wife. He is alive today because my wonderful son Paul made the
courageous decision to become an organ donor.
Ken has expressed his gratitude many times, but more than that he lives his gratitude. This kind gentleman will not drink alcohol or coffee because he has “too much respect” for Paul’s heart! Oh lord, my soul can finally rest knowing that Paul’s heart has found the best possible safe harbor. To know that I gave birth to the heart that is beating within this man’s chest and that he is sharing my own DNA as he sits across from me or goes about his day is something I can barely get my head around!
Recently I found a photo of a Paul when he was just four years old. He was holding his
fishing pole, Oh how he loved fishing and wouldn’t you know it, Ken loves fishing, too! I had that picture framed to give to Ken because that sport is his passion and I wanted him to know he had the heart of a fisherman. Strange but there were some other links I discovered, too. For example, they both drove the same model of pickup truck and both smoked the same type of Cigarillos.
Because of our telephone, text and email contact, I now have a bond with this remarkable man that is as close as any other I have and it warms my heart to know that he is in this world. What might appear to some as a quick four-day trip would be to miss the point. I’ve been on this journey for three long years, a journey that would reunite me with the essence of Paul. The anticipation of leaving the melancholy life i have known for the past three years and approaching a new fulfilling relationship with my new “son” kept me on the verge of tears until our initial embrace.”
When the train arrived and squeaked and squealed to a slow stop. Claire got up from her seat and headed for the door. Ken and Jan were there waiting for her. The meeting was almost wordless, yet spoke reams. Again, Claire’s words.
“Immediately when I got off the train there were lots of long hugs. It seems as though none of us wanted to let go, but eventually, we got in the car, had a lovely dinner and talked and hugged again till late in the evening.
The following day, we spent in our jammies, just hanging out at the house, everyone comfortable with each other. That’s when I brought out the mementos. A coffee mug that said, “I had a change of heart,” Paul’s fishing picture, Paul’s key ring, a special pencil that was engraved with Paul’s name and some other things that I either made or purchased. Ken loved all of them, he even has a collection of keys.
Still in our jammies, we continued to talk as we set up and decorated the Christmas tree. We
had so much fun doing it, it was so meaningful we committed to making it a tradition and doing it every year.
Finally, I hollered into the living room, “Ken, bring that heart in here, I want to listen to it.” I had my stethoscope in my hand.
He stood in front of me and with the earpieces in, I touched the chest piece to where I thought his heart was but heard nothing. I kept trying but couldn’t seem to find it and
It was then that Ken took my hand and the stethoscope chest piece and placed it on his heart. Then — then I heard the soft, steady, rhythm, “Thump thump – thump
I was listening to my son’s heart again. My eyes filled with tears and I got a lump in my throat, I couldn’t stop listening. Paul’s heart was keeping this lovely man alive. I thought to myself, I can now rest. The long wait is over and I no longer have to wonder. I am at long last at peace with the world. I finally heard Paul’s heart. A part of my son was alive and well.
Ken told me that just before the transplant, the Surgeon asked him if he wanted to see the heart. When he looked, it started to beat and the doctor said, “This heart wants to live,” and the procedure was started. Ken said he was told that his transplant only took seven hours, a much shorter time than usual. He was also told it was the smoothest, least complicated transplant the Doctor had done.”
Hearts are amazing organs. A man’s heart, for example, beats 70 times a minute. A woman’s heart is a little faster. The thumping sound you hear is really the sound of the four valves opening and closing in a process that pumps a million barrels of blood in an average lifetime. To do so it will beat 2.5 billion times. To put it in perspective, If you were to turn on your kitchen faucet all the way and let it run for 45 years, that would be equivalent to the amount of blood a heart pumps in a lifetime. That’s pretty amazing.
All good things must end it is said, and so it was for this visit. After four days together Ken and Jan took Claire to the train station for the ride home. It was bittersweet. Bitter because she didn’t’ really want to leave, but sweet because she had so many wonderful memories to carry with her and sustain her. Claire finally had some kind of closure. Again, her words.
“When we got to the train, Ken boarded with me to make sure I was comfortable. He seemed very concerned about me and did everything he could to make sure I would have a pleasant trip back home. I sat there for a few minutes and then felt I just had to see him one more time, so I got up and went to the door and, and there he was, waving and saying, “Bye mom, bye.”
Now I’m home again with so many wonderful memories and with so many pictures to remind me of my journey and of my new son. I will go back, we will meet again. I don’t know where or when, but it will happen.”
When Claire spoke of meeting Ken and Jan again, I could almost hear that wonderful song playing in the background.
We’ll meet again
Don’t know where
Don’t know when
But I know
We’ll meet again
Some sunny day
Keep smilin’ through
Just like you
‘Til the blue skies drive
The dark clouds
Bob Aronson is a 2007 heart transplant recipient and the founder of this blog which contains nearly 300 posts on donation/transplantation and associated issues. If you need a support group, please join Facebook’s Organ Transplant Initiative. And if you are not yet an organ donor, sign up now, it takes almost none of your time and you can do it from where you are sitting. Log on to http://www.donatelife.net and make the commitment now. Then, tell your family your decision so there is no confusion when the time comes.
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.
“One can never pay in gratitude: one can only pay ‘in kind’ somewhere else in life.”
Anne Morrow Lindberg
A note from Bob Aronson
This post falls under the category of “Inspirational stories” in my blog index. We’ve had several such stories but none outshines this one. It is truly remarkable.
“Officer Down” are two words no one ever wants to hear and we hope and pray they never have to be said again. Too many fine young men and women have died in the line of duty. This is the story of one of them and how despite his death a part of him lives on.
David Moore of the Indianapolis, Indiana Metropolitan Police Department was an “officer down” in that particular call. He was a bright, energetic, well-liked and committed policeman who was taken from us in his prime.
Lance Lewis was struggling for every breath he took when Officer Moore was gunned down. Lewis was suffering from a genetic lung disease that was destroying his lungs. He never knew what it was like to take a normal breath, to run with other kids and take part in activities that called for exerting himself. It just wasn’t possible. He is seen in the picture to the right some two and a half years before Officer Moore’s untimely death. Lewis was extremely thin and struggling to make it through every day.
By now you’ve guessed that Lance Lewis was the recipient of David Moore’s lungs but if you stop reading here you will be doing both men and yourself a disservice. You simply must read, re-read and digest this incredible story.
Everyone who gets a transplant has been through an epic journey and experiences all the extremes human emotions can allow. And…no transplant patient travels the road alone. It is usually a family affair, sometimes it’s a community affair but great numbers of people are ultimately involved in every transplant.
You don’t hear about donors quite as often as you hear about recipients for two reasons 1) most donors are deceased and 2) many donor families prefer to remain anonymous. When recipients and donors or donor families do get together, which is not common, the story becomes doubly important. The recipient gets a new life and the donor family most often has an uplifting experience and develops a strong relationship with the recipient of their gift of life. Donor families often suffer great grief and then great joy simultaneously. Grief from having lost a loved one and joy from knowing they saved at least one life and further joy often when they meet the recipient(s).
This blog is about two wonderful families and a sad but wonderful outcome. It is a story that should be told again and again and again. This is long for a blog, just like my last post, but I believe our readers want some meat on the bones of the stories I tell and this one has plenty of that.
Officer Moore was a true hero whose memory will live for a very long time. Lance Lewis is also a hero because of the way he honors the gift of life from his donor. Lance does everything he can to not only take good care of his new lungs but to keep this story alive in hopes that by telling and re-telling it he can encourage others to become donors as well. These two men didn’t know each other but their lives intersected in a very meaningful way.
At the end of this post you’ll find an update from Lance Lewis and several pictures that relate to experience with his donor family along with his individual accomplishments.
A true organ donation story as
reported in the Indianapolis Monthly magazine.
by Evan West
Two years ago, policeman David Moore was gunned down in the line of duty. A family lost their only son. But his lungs have given another man a remarkable second chance.
Editor’s Note, June 21, 2012: Thomas Hardy was sentenced to life in prison without parole in April. Eric Jenkins was indicted today on three counts of possessing a firearm as a convicted felon. Authorities allege that he sold the semi-automatic handgun noted in this story to Hardy in 2011.
When you’re on the list, you pick up the phone—middle of the night, in the bathroom, driving. Lance Lewis knew the statistics: on average, every day in the United States, 18 people on the list die waiting. When the phone rings, you answer.
Lance was on the couch when the call came. The computers had identified him as a potential match. He and his wife, Cathy, lived on the south side, and they would need to get to Methodist Hospital, in downtown Indianapolis, as soon as possible. “We think we have a pair of lungs for you,” the caller said.
The date was January 26, 2011. The last time a call had come, almost exactly a year earlier, Lance wasn’t ready. Making it through a lung transplant was difficult enough, even for a relatively healthy patient, and Lance had been recovering from a bout of pneumonia and had a fever. Several calls went back and forth between him and the hospital, touch and go, until doctors decided to move on to the next name on the list. He and Cathy cried. Then they regrouped. “That wasn’t the call,” she told him. “Those weren’t your lungs.”
The two had grown used to waiting. When Lance first went on the list, in 2003, about 30 other would-be recipients stood ahead of him. After two years, his name had moved up to number 10. When the Indiana Organ Procurement Organization, or IOPO, changed the rules so that the sickest patients would get lungs first, Lance dropped back to number 36. He and Cathy agreed it was only fair. His doctor suggested they pull his name off until things got worse. “When you get sicker,” he said, “come back and see us, and we’ll get you right back on.”
Now Lance had difficulty carrying a gallon of milk from the car and up the three steps to his front porch. He had used an oxygen tank off and on for the past two-and-a-half years—and for the last year, he had been hooked to the thing constantly. So when this pair of lungs became available, Lance’s name was near the top of the list. A blood test confirmed his match with the donor, and that night, at about 10:30, technicians wheeled Lance into an operating room. His adult children, two of whom lived hours away, arrived just in time to tell their father they loved him. They didn’t know if they would have the chance to tell him again.
In the waiting room, Cathy watched two televisions flash updates about a young policeman shot during a traffic stop a few days earlier, who was at another hospital just blocks away. It has been a turbulent few days for the Moore family and fellow IMPD officers, as David Moore has fought for his life … Now they’re forced to face the worst, as his battle has been lost … It seemed like everywhere she looked, Cathy saw a television with another report about that policeman and his parents. She felt like crying for them. And it seemed like everyone around her was talking about it. Strangers kept asking her why she was there. “My husband is having a lung transplant,” she told them.
David Moore grew up in a police family. His father, Spencer, served in Vietnam with the Air Force’s security police. In 1968, he joined the Indianapolis Police Department where he would climb the administrative ranks to the level of lieutenant.
After joining the department, Spencer founded Explorer Post 435, part of an outreach initiative for teenagers interested in law enforcement. In 1974, a 17-year-old high school senior named Jo Ann Cord—Jo, as her friends called her—walked into a meeting in a church on the south side. She had wanted to become a police officer since reading The Super Cops, an action-packed book about real-life New York policemen. The first day he met Jo—self-confident, outspoken, pretty—Spencer, then 30, says he knew he was going to marry her, even though she thought the older policeman was, in his words, “an unmitigated, arrogant asshole.” But past the wisecracking exterior, she saw a man who was fun, and caring.
Spencer asked Jo’s father for permission to “court” her. Jo wasn’t pleased. “I thought courting meant getting married, and I thought we were just dating,” says Jo. “I got all upset in front of my dad. Courting? What’s courting? Spencer was like, ‘Oh, good Lord,’ because it showed the 12 years of age difference.”
The following March, Spencer bought a pair of rings, then waited until Jo graduated, in May, to propose. “I told Spencer, ‘If you don’t want your wife to be a policeman, don’t marry me,’” she says. “That would have been a deal breaker.”
They married in the fall, and a daughter, Carol, came four years later. They had their second child, David, in 1981. When David was 4, Jo decided to join the department. In preparation for the entrance exams, she carried study materials around their southside tri-level to look them over while she did housework. One morning, she heard David crying in his room. “If you’re going to become a police man,” he asked her, his little face streaked red, “then who will be my mommy?”
Young David spent a lot of time around the department. Jo worked on Mounted Patrol, and he would feed and groom the animals in the horse barn. He also visited headquarters, where his father worked. “I was in administration, so I had offices instead of squad cars,” says Spencer. “People got to know him. David was just a nice kid, pleasant and respectful. He was always around police. Our friends were police. By the time David was into his formative years, that’s all he knew.” He talked about being a police officer when he grew up, just like his mom and dad.
David was a big, strong boy (he would grow to be over 6-feet tall and a muscled 200 pounds), but he was also kind, and children around the neighborhood looked to him to settle disputes. He and Carol, his older sister, were close. The two of them were home alone one day, and David, roughhousing, punched a hole in the wall. Carol carefully patched and painted it to hide the evidence. Their parents never knew about the damage until years later, when Carol, as an adult, finally copped to the cover-up.
From the time they were married, Spencer encouraged Jo to be an equal partner. He wanted her to know how to fix stuff around the house. Independent by nature, Jo relished such tasks, and Spencer would sometimes return from conventions to find that she had remodeled an entire room. Spencer had never wanted a “grocery-shelf” wife. More important, he says, “I knew that if something happened to me, she would be left alone.” The two bought funeral plots, so that if one of them was killed in the line of duty, the other wouldn’t have to decide in mourning where to hold the burial. “With him being a police officer, and with my years of service,” Jo says, “the idea of not coming home is kind of in the back of your mind.”
When David was 6, his parents brought him to a memorial service held for Officer Matt Faber, shot after entering an eastside home. When David was 11, he attended a service for Officer Teresa Hawkins, killed in a crash while driving her patrol car. The elaborate ritual, the regalia, the bowed heads, the tributes—all the trappings of the police funeral seemed to move him deeply. He looked off to the distance through the window of his mother’s squad car as the two rode along in the procession.
Cathy Lewis used to tell Lance that he moved “like a turtle,” because it took him a long time to do anything. They would go shopping, and he would still be climbing out of the car after she had already walked into the store. The two married in 1977, just six months after they met. (On their first date, he had moved to kiss her good night. “If you’re not looking for a real relationship, then you’d better run,” she told him, “because I could see myself falling for you.” He called her the next day.) Lance had never been particularly active; his mother told Cathy that, even as a boy, he frequently struggled with bronchitis. They had always assumed he had asthma. But over time Lance seemed to be getting worse. He would lose his breath and need to rest after simple tasks.
In 2000, when Lance was 43, he went to the doctor for chest X-rays. The doctor looked at the X-rays and recommended he see a pulmonologist. Then, the pulmonologist looked at the X-rays. “Lance,” he said, “you have the lungs of an 80-year-old man.” The images showed lung deterioration consistent with emphysema. But unlike the emphysema of, say, long-term smokers, which damages the lungs from the top, the deterioration in Lance’s lungs seemed to be spreading from the bottom. “I can tell you exactly what the problem is,” he said. “But we’ll have to do a blood test to confirm it.” A lab in California proved what the pulmonologist had surmised: Lance had alpha-1 antitrypsin deficiency, an inherited genetic disorder that allows the body’s immune system to attack healthy tissue in the lungs. Since birth, Lance’s white blood cells had been slowly devouring his ability to breathe.
Although Lance’s condition appeared in his lungs, the disease actually originates in the liver, which is supposed to produce an enzyme that prevents the lung damage. But no doctor would agree to replace a liver that was, as in Lance’s case, otherwise perfectly healthy. Eventually, Lance’s lungs would stop functioning completely—but no one could say for sure when that would be. Five years? Ten?
Lance would need a lung transplant to save his life. But he faced a difficult decision. If he did nothing, mortality would overcome him in a gradual, measured advance. On the other hand, lung transplantation carried tremendous risks. Recipients died on the operating table. They died when their bodies rejected the donor organs. They died of infection. The average five-year survival rate was a flat 50 percent. Lance had to weigh an impossible dilemma: When should he trade the certainty of a gasping, drawn-out demise for a surgery that gave him a 50/50 shot at a longer life—but also a 50/50 chance of dying even sooner than the disease would kill him?
Lance’s son, Jason, told Lance that he would “rather have a sick dad for 10 years than a healthy dad for five.” But three years after the diagnosis, Lance and Cathy decided to let doctors put his name on the transplant list.
Then they waited.
In 1996, David Moore enrolled at Franklin Central High School. Sometimes David got into fights. As a freshman, he had a man’s body and a deep voice, and when other children were bullied, they seemed to look to David for help. One day in the hall, a student dropped some books, and as others jeered and kicked, David stooped to help gather them up. When another boy persisted in kicking at the books, David shoved him away. A teacher contacted David’s parents and told them the altercation typified David’s troubles. “He is quite the protector,” the teacher said.
Before the school year was over, David’s parents moved him to Roncalli, a Catholic high school. Not long after starting there, he told his mother that a classmate had dropped some books on the floor, and David had braced himself for another fight—until everyone else bent to pick up the books. “He knew he had found a home,” says Jo.
“This big, burly guy just kind of walked in the middle of freshman year,” says Zack Conover, a close friend of David’s. “Everyone was gawking at him, because he had a full-grown beard, and he was real quiet. He intimidated a lot of people.” When David warmed up, though, Conover discovered that he was “a B.S.er.” He had a “shit-eating” grin (as David’s dad called it) that signaled his intentions for mischief. Conover, who played football with David, says he liked to sneak into the locker room and move around teammates’ photos and other personal items.
David became a star defensive end and co-captain on the Roncalli team that went undefeated and won a state championship in 1999. David excelled in the classroom as well, and he was drawn to the physical challenge and discipline of military training; as graduation approached, he fielded scholarship offers from The Citadel and the United States Coast Guard Academy. He opted for a Marine Officer NROTC scholarship at Purdue, in 2000, and once there, he left the same strong mark he had in high school. On one occasion, Spencer and Jo visited the school’s administrative offices, and the reaction they got made them think they had been mistaken for celebrities. “The place went crazy,” says Spencer. “You’re David Moore’s parents? Hey everybody, David Moore’s parents are here!”
For David, a military career beckoned. He introduced his father to an old Marine master gunnery sergeant who worked with him at Purdue, and Spencer recalls the man telling David, “You are one of the few people I’ve met at your age that I’d follow anywhere—even into the gates of Hell.” When it became apparent that an old knee injury would keep David out of the Corps, a colonel pleaded with superiors to keep him.
But fate, it seemed, had other plans. In 2004, David, then 22, returned home to join the Indianapolis Police Department’s 102nd class of recruits.
Officer David Moore was driving a patrol car down Michigan Street in the near-westside neighborhood of Haughville, at close to midnight, when he heard bursts of gunfire. It sounded like they were coming from the side street he had just passed. Another officer patrolling the area, Adam Chappell, passed him coming from the opposite direction on Michigan just moments after the shots rang out. The two were on street-level enforcement detail, or SLED, a unit focused on crime “hot spots” around the city. David picked up the radio. “Chap, did you hear that?” he barked.
“It sounded like what I imagined Fallujah sounded like,” says Chappell. “It was a gun battle.” The two officers made quick U-turns and steered down Goodlet Avenue toward a parked van. They heard more gunfire and saw the outline of figures scrambling away into the shadows. As David drove on toward the van, Chappell, following behind, turned down an alley and then jumped out of his cruiser to chase the fleeing assailants. Then he heard more gunshots. BAM. Pause. BAM BAM BAM BAM. They had come from the street, right where he had last seen David pulling up on the parked van.
“It sounded like what I imagined Fallujah sounded like,” says Chappell. “It was a gun battle.”
Suddenly, quiet. Chappell called out. Dave, you okay? No answer. David! He jumped back into the car and sped around to the front of the house, fearing the worst.
“It sounded like what I imagined Fallujah sounded like,” says Chappell. “It was a gun battle.”
As he pulled up to the van, he saw David. He was standing there, gun drawn, with five men lying on the ground before him. Four were facedown on the pavement, surrendered. The fifth was fatally injured. A Bersa .380 semi-automatic handgun—a cheap, easily concealable pistol the man had fired at David from a few yards away—still lay by his side. For the incident, which occurred in 2008, the department would award David the Medal of Valor.
“We all work with these officers—they’re just kind of there, soup and sandwich,” says Chappell. “You think, ‘Man, if something ever happens, I hope he’s not my backup.’ But David was a go-to guy. I knew that if I was involved in something serious, David was going to come running.” Officer Jeremy Gates used to patrol with David in the North District, and he says he could barely get David to slow down long enough to grab a gas-station sandwich for dinner. He had a preternatural ability to spot suspicious activity. Without notice, he would stop the cruiser, jump out, and take off on foot toward a suspect. “Aside from the receding hairline,” says Gates, “he was the poster boy for what a police officer is supposed to look like. His uniform was always squared away, boots shined—the whole nine.”
David was also a good guy who knew how to have a good time. Single (and something of a ladies’ man), he took Christmas-day shifts for officers with families. And he was a “slim jim” master. Gates remembers parking his car downtown to testify in court, then returning to find it wasn’t where he’d left it. “I thought, ‘Holy shit, my car’s gone,’” says Gates. “I thought I was going to have to be that guy who reports his police car stolen.”
But if David’s horseplay endeared him to colleagues, he took a thoughtful approach to his duty as an officer. After a few years in the department, a former employer’s daughter, interested in law enforcement, asked for guidance, and the two exchanged emails. “Think about this,” he wrote. “I had a house on my beat. A lady was raising a boy and a girl. The boy was 10 and the girl was 8. They literally had to pay for lunch and dinner. The mom was so broke she couldn’t afford the food, so if the kids wanted to eat they had to pay her!!! The boy was out stealing and selling things. Do you know any of your friends who have had to do that? … That is how this job will change you. It changes your black and white outlook to a grayness.”
Danger—the danger that led to the police funerals he attended as a child, the danger that made his parents buy burial plots, the danger that placed him in a kill-or-be-killed shoot-out—wasn’t something David talked about. The job wasn’t about catching bad guys; it was about making people’s lives safer. But he wasn’t naive.
“We can’t help everyone, and if you try you will be beat down emotionally,” he wrote. “There will always be bad people.”
On January 22, 2011, at around 5 a.m., a 60-year-old ex-con named Thomas Hardy pulled into the Mallard Cove apartment complex, off of North Shadeland Avenue. According to witness statements, he walked into an apartment to smoke crack cocaine. At some point, he and a man in the apartment named Eric “Boo” Jenkins struck a deal: Hardy would trade a crack rock for Boo’s Bersa .380 semi-automatic handgun. Hardy wanted to settle a beef with another man he claimed had cheated him out of $100.
On January 23, at around 5:30 a.m., David left the IMPD’s North District headquarters, on East 30th Street, to start his patrol. It was his second morning on the day shift. He had requested the new assignment because he preferred the schedule to the overnight hours of the middle shift—done by 2 p.m., with the rest of the day to do what he wanted. He had called his mom after that first day. “I think I’m going to like this shift,” he said.
At close to 9 a.m., David was driving down East 34th Street when he followed a gold-colored Camry onto North Temple Avenue, into a modest working-class neighborhood. David flipped on the flashing lights, and the Camry came to a stop; no one knows why the car caught his attention. “The hardest thing I face is a traffic stop,” David once wrote to his young email friend. “Regardless of how rough an area is there are always good people who live there. Honest hard-working people. I make a lot of good arrests off of the simplest traffic stops you can imagine.” David pulled up behind the car and ran the plates, then got out of his cruiser and walked up to the driver’s-side window.
A few blocks away, officer Matthew Mielke was pulling out of the parking lot of North District headquarters when he heard gunshots. Then a voice came over the radio. Officer down in the 3400 block of North Temple. Mielke rushed to the scene. Moore’s police cruiser was parked at an angle to the curb. The lights were still flashing. In front of the car, on the snow-covered street, lay the rumpled figure of a uniformed police officer. Mielke called in the medics, then ran over and kneeled down beside the officer. It was David Moore. He was lying on his side, not moving. His pulse was fading. Another officer arrived, and the two of them gingerly rolled David over onto his back. That’s when they saw that he had been shot in the head and neck area. His gun was still in its holster.
When medics arrived, David was still alive. But just barely. They cut off the front of his bullet-resistant vest, loaded him into the ambulance, and, led by a police escort, rushed him downtown to Wishard Hospital. Another officer helped remove and secure David’s gun. One of the medics handed the officer a .38-caliber slug that had fallen out of David’s clothing.
Back on Temple Street, investigators swarmed over the scene to try to figure out what had happened. The plate number of the Camry was still up on the monitor of the laptop computer in David’s cruiser. It turned out the car had been reported stolen about a month earlier. A crime-scene specialist found seven spent .38-caliber shell casings and one .38-caliber slug on the ground near where David had fallen. Police interviewed neighbors on the block, and a blind man who lived nearby told them he had heard four gunshots, a pause, then three more. Another neighbor had looked out the window of her house to see an officer lying in the street and a gold-colored car speeding away.
About an hour later, the manager of a southside Dollar General store called the police to report that a man had just carried several bags of Cheetos to the counter, then pulled a handgun on the clerk and swiped $101 from the register. The clerk said he was wearing tan slacks, dress shoes, and a black leather jacket with a fur-lined hood. He had left a bag of Cheetos on the counter.
Although it’s not clear why, police soon turned their attention to a man named Thomas Hardy. They found an address, just a few blocks from the Dollar General robbery. There, Hardy’s niece told investigators that he had called her that morning from a number that turned out to be a downtown pay phone in Circle Centre mall. Detectives checked the mall’s surveillance tapes and saw a man who matched the description of the robber. They later found the Camry parked in the garage of the JW Marriott hotel a few blocks away. Surveillance videos showed that the same man who had robbed the dollar store and used the mall pay phone had left the car there at around 10:15 a.m. Later that afternoon, a crime-lab examiner found fingerprints on the Cheetos bag left behind at the dollar-store robbery. They were a match with Thomas Hardy.
As detectives tracked Hardy’s movements on the morning of the shooting, a federal law-enforcement agency contacted police to let them know they had received a tip from an informant named Penny Torrence. At close to 5:30 that evening, a team of IMPD officers surrounded Torrence’s near-westside home, looking for Hardy. They ordered Hardy to come out. When police took Hardy and Torrence into custody, she told them to go into the house and look inside a green bag. When they returned with a warrant, they found a Bersa .380 semi-automatic handgun.
Torrence told detectives that Hardy had showed up at her house at around 9:30 that morning. He had asked for money. She didn’t have any. So he told her he was going to go get some. When he returned, he had cash, and he said it had come from the dollar store. He told Torrence he needed to ditch the car because police were looking for it.
She asked Hardy what he had done. He said a cop had pulled him over that morning and walked up to his car. He said he had a gun he had picked up at Boo’s place. Hardy was on parole, and if the cop found the gun, he would go back to prison. So, he said, he put a round in the chamber and switched off the safety. Then, he told her, “One thing led to another.”
David had been shot six times—twice in the face. Two bullets hit him in the leg; another struck his ammunition pouch. It appeared that his bullet-resistant vest had stopped at least one shot from penetrating his torso—the round was still lodged in the vest when David was found.
David’s parents stood sentry at the hospital and held news conferences to address the public’s concerns over David’s condition. Worried IMPD officers hung around the hospital lobby at all hours of the day and night. Across the city, people who knew David, and many more who didn’t, prayed for his survival. Close to 300 showed up for a vigil at a church near where he was shot.
On Tuesday, January 25, a hospital MRI indicated that David would not regain consciousness. That evening, IMPD chief Paul Ciesielski convened a news conference to announce that David’s parents had decided to take him off life support. He would be the first officer in the newly organized department to be killed in the line of duty. IOPO staffers rushed to identify potential organ recipients. In David’s room, nurses moved him over on his bed, so Jo could lie next to him during his last hours.
Officer David Moore was pronounced dead at Wishard Hospital at 6:18 a.m. on Wednesday, January 26, 2011. Because he had been in such peak physical condition, and because the bullet-resistant vest had protected his chest and abdomen, doctors were able to recover his lungs, heart, liver, and both kidneys. Although his fatal head wounds had left his eyes intact, IOPO staffers feared that recovering any tissue from the neck up might interfere with the autopsy. At the last minute, the coroner’s office gave the okay to remove and transplant both corneas as well.
That afternoon, Lance Lewis received his phone call, and late that night he went into surgery. The procedure would last nearly nine hours. Before going to the hospital, Lance had followed the young policeman’s shooting, and he had a hunch that he was getting the officer’s lungs. It was one of many thoughts that ran through his mind as he lay on his side waiting for the anesthesia to take hold.
Some of the family members who waited out Lance’s surgery at the hospital shared his speculation about the donor, and they chatted about it to help pass the time. “I told my daughter, Angie, ‘I wish everybody would stop talking about the officer, because we don’t know whose lungs these are,’” says Cathy. “But she said, ‘I don’t care. I’m going to believe they’re the officer’s lungs.’ To her, it just made sense.”
“I told my daughter, Angie, ‘I wish everybody would stop talking about the officer, because we don’t know whose lungs these are,” says Cathy.
Cathy got phone calls throughout the early morning from a transplant coordinator. “They just put him on his side,” he told Cathy. Then, “They’re getting ready to take out the right lung—he’s doing great.” Then, “The right lung is out, and the new one is in. We’re getting ready to flip him over.” Calls every hour, until the last call, well after daybreak. “Everything went well,” the coordinator said. “He got a really good set of lungs.”
When Lance awoke, his belief that the donor must have been the policeman remained. IOPO keeps all organ donor and recipient information strictly confidential, but Lance knew that, someday, he needed to meet the family that lost a son in giving him new life.
Months after David’s death, Jo Moore composed seven handwritten letters. She didn’t know who would read them, only that they had received David’s organs. She wanted the people who carried around parts of him to know what kind of man he had been, how much he had meant to her.
IOPO delivered the letters, and Lance got one of them a few days later. “I am so glad you received David’s lungs,” she wrote. “I admire your strength and courage to be an organ recipient. We pray that you live your life and enjoy what the future brings.”
Lance began to handwrite a reply, until he realized that the tremors in his extremities, caused by medication he took to prevent his body from rejecting David’s lungs, made the words illegible. So he typed. “Words cannot express how blessed I am to have been entrusted with David’s lungs,” he wrote. “I will cherish, protect, and use them to their fullest. Your family’s gift of love has given me a new life for which I will always be grateful.” He told her he hoped they would meet one day.
As Jo and Spencer Moore began the process of coming to terms with their loss, authorities moved swiftly to impose justice on the man accused of pulling the trigger. On January 27, a day after David Moore was removed from life support, Marion County prosecutors charged Hardy with murder, robbery, and unlawful possession of a firearm by a serious violent felon. A few weeks later, they filed a request for the death sentence.
Hardy has a long rap sheet, mostly property crimes and drug offenses, accumulated over several decades. Hardy’s niece, who helped investigators locate him before his arrest, told The Indianapolis Star that the crime he now stands accused of “is not in my uncle’s character.” In a written statement, his attorneys, Ray Casanova and Monica Foster, wrote that “Thomas Hardy, like all Americans accused of crime, is presumed innocent,” and, they continued, “there are many aspects of what happened that are not at all what they seem at first blush.”
At press time, Hardy’s trial was scheduled for October 1, 2012, and it is far too early in the proceedings to predict an outcome. But it probably won’t be a cut-and-dried case. In ballistic tests, the pistol that Thomas Hardy allegedly used to shoot David Moore “slam-fired”—a malfunction that causes a gun to discharge a round without the trigger being pulled. Denise Robinson, a deputy prosecuting attorney, says the matter is “still under investigation.” Depending on how that investigation plays out, the malfunction could leave the defense room to argue that Hardy hadn’t intended to fire the gun as many times as it went off—or at all. But even Hardy’s lawyers, it seems, are saddened by David Moore’s fate. “There is one thing with which we will not disagree with the prosecutor,” they wrote. “Officer David Moore was a good police officer and an extraordinary human being whose life was taken from us far too soon.”
Sadly, none of this might have happened, if not for a simple administrative error. Hardy was arrested in 2010 on felony theft charges, while he was still on parole for an earlier theft conviction. Had Thomas Hardy’s parole officer performed a routine arrest check, as policy dictated, she likely would have requested that the parole board send him back to prison. Instead, on December 21, 2010—about a month before David Moore was shot—Thomas Hardy walked out of jail.
It’s a crisp, fall afternoon, and Lance and Cathy Lewis have come to visit Spencer and Jo Moore at their northside home. It is just around the block from where David used to live—his sister, Carol, moved into his house after he died, and his parents later bought a place nearby. Since their first meeting in May, the Lewises and Moores have continued to get together. It feels right to them, somehow. They share stories about their grandchildren. They tell jokes and make fun of one another. And they marvel at how much they have in common.
The Moores raised their family just a short distance from the southside home where the Lewises raised theirs. When Lance was David’s age, he was also a law-enforcement officer, with the Marion County Sheriff’s Department. When Jo was in the hospital delivering David, Cathy was in the very same hospital, delivering her son Aaron. There is a lot to talk about.
They gather for lunch in the Moores’ kitchen and talk about Lance’s recovery. “He’s doing so well, it’s like having a new husband,” Cathy says. “He looks different. His color is different. I smile every day, just looking at him.” Her joy, she admits, is tempered by a kind of survivor’s guilt that her family’s blessing arose from another family’s heartbreak.
Lance says that before the transplant, he always felt that people were giving him disapproving looks, like when they’d see Cathy loading heavy groceries into the car, while he stood by watching. “I couldn’t help but think, all those people standing around were wondering, ‘Why in the world is he making her unload that car while he’s standing there like a lazy bum?’” he says.
Cathy once told Spencer that it used to be easy to find Lance when she needed him, because he was always on the couch. “Now she has to go to the front door, the back door, down the street, the park—because he’s out mowing the lawn, riding his bike, up on the roof,” Spencer says. “Now, she can’t keep up.” He jokes that when Lance is driving behind a car that runs a stop sign, he has a strange urge to pull it over.
Jo brags about how Lance recently finished a 12-mile bike ride. Sometimes when she looks at Lance, she beams, and her eyes well up. She likes to call the heart-shaped scars around Lance’s shoulder blades, from the incisions where doctors opened his body cavity, his “angel wings.”
After lunch, Spencer and Jo take Lance and Cathy on a walk through the neighborhood to show them a stone memorial to David that neighbors have placed in a front yard. They point out the house of two women, raising a son, who liked David coming over to spend time with their boy because he was a good male role model. Over there is the home of an older woman who called David frequently to tell him about goings-on in the neighborhood; having him nearby made her feel safe. Along the way, flags and other tributes to David dot house after house, yard after yard. He had only lived in the neighborhood for a few years, and somehow he seems to have known everyone.
On the way home, Spencer falls back to walk beside Lance.
“I’m 12 years older than Jo,” he says. “I always figured David would be there to take care of his mother when I am gone. When you have a son, you imagine what he’s going to accomplish. I saw David being in a high leadership position in the department some day. Now that he’s gone, it leaves a hole.”
Lance doesn’t say anything for a moment. His eyes redden a little, and he takes a deep breath—something he had not been able to do for a very long time.
For information about the Officer David S. Moore Foundation, visit www.davidsmoorefoundation.org.
Donations can be mailed to:
Officer David S. Moore Foundation
PO Box 39284
Indianapolis, IN 46239
An update from Lance Lewis
November 27, 2013
The three years since my double lung transplant have been amazing. For me at least, the transplant did not allow me to return to my old life…I never had this life. This is something completely new.
Cycling in Indiana, Kentucky and Montana, stair climbs in Indianapolis (35 stories) and Chicago (103 stories), walking along the Las Vegas strip in 117 degree weather, and zip lining over the Gallatin River in Montana. None of these things would have even been considered, let alone possible, without my transplant.
Although the relationship we have with my donor family is our only experience and seems normal to us, we are keenly aware that it is anything but normal. Many recipients attempt to contact their donor family with no response. I have been blessed with a donor family who encourages contact, and who have opened their hearts and lives to us without limitation. As a result, a whole new world of friends and relationships has blossomed.
We have had the opportunity to encourage other transplant patients through our local transplant support group and to speak to individuals and groups about the importance of organ donation. As a volunteer for the Indiana Organ Procurement Organization, I have spoken to such diverse groups as hospital executive committees, and third shift emergency room nurses. At one meeting, I was able to speak to some of the nurses who had cared for my donor in the ICU. They had no idea who I was until the end of my talk, and it was a very powerful moment.
No one knows where this journey will ultimately lead, but I am thrilled to be on the trip and have no regrets about the decision to pursue a transplant.
Here’s a disturbing number 60% . 60% of Americans are NOT organ donors. That means that only four out of every ten people is a donor and that’s why thousands of Americans die every year. And…more and more will die because the gap between available organs and those who need them grows daily. This isn’t happening because Americans don’t care. Polls show we overwhelmingly support donation. It is happening because we don’t see the urgency and don’t get around to signing up and the result is 20,000 perfectly transplantable organs are buried every year. Don’t take your organs to the grave when so many gravely ill people need them.
There are millions of other Lance Lewis’ in America. They may need other organs but they are all suffering and are all facing death. 20 people will died today because of the organ shortage. 20 more will die the next day…and the next day too. Save a life or maybe save many lives by becoming an organ/tissue donor right now. Up to 60 people can benefit from each donor so don’t hesitate a moment longer. Go to http://www.donate.life.net right now and sign up. It takes just seconds. Then, be sure to tell your family your wishes so there is no confusion when the time comes.
Give the gift of life. There is no nobler action you can take.
Bob Aronson is a 2007 heart transplant recipient who founded both Bob’s Newheart and Facebook’s Organ Transplant Initiative (OTI). The Newheart blog has 200 others posts that cover a wide range of subjects that may be of help to you or someone you love. We also invite you to visit and join OTI a group of well over 3,000 members who share experiences, help each other and provide invaluable information to make daily living a little bit easier.
My name is Bob Aronson. I went to work every day wearing a suit. I had been a popular radio and TV personality in another market, Press Secretary to a Minnesota Governor and was now the first Anchor for Morning Edition on the Minnesota Public Radio Network headquartered in Minnesota’s twin cities. I was a major market radio host and newsman and that’s no small feat. For all intents and purposes I was a respected member of society. I had one small problem; I was also an uncontrollable drunk. Following is but one day in the life of an alcoholic.
I’m telling this story because alcoholism and addiction is one of the greatest destroyers of human organs. My long term addiction to alcohol and cigarettes (I quit smoking in 1991) quite likely contributed to my need for the heart transplant I received in August of 2007.
Addiction is horrible, it is a terrible existence and the addict is powerless to stop it without help. The craving for the drug, whatever it is, is stronger than any force you will ever encounter. It overpowers reason, common sense, logic and even the love of family. It destroys your moral code, your sense of ethics and even your hygiene. You begin to live your life for the drug. It is your best friend.
Those of you without an addiction will have trouble understanding this and I’ve heard many of you say, “Just use some will power!” O God if it were that easy. I remember an addiction counselor telling a group once, “Using will power to conquer addiction will get the same result as trying to use will power to control diarrhea.” She was so right.
Following is but one slice of a long life of alcoholism. It is the day, 30 years ago, that I stopped drinking. This not the worst story I could tell, those aren’t even fit to print, but rather this is the most significant because it marked the beginning of my sobriety.
I should point out, too, that once a drunk always a drunk its just that some of us drunks are sober.
On July 17 of 1982 I awakened early in the morning with a splitting headache and nausea. I stumbled through the bedroom covered in my own vomit to make it to the bathroom. Kneeling on the floor before the toilet I retched over and over again but there was nothing left in my stomach. Its contents were on and around my bed and my t-shirt and underwear.
When the retching stopped I stripped and stepped into a cold shower that felt like a million icy pinpricks. I thought I smelled sauerkraut in the house but none was cooking, the odor was me. I stunk. I scrubbed my body as hard as I could but not having eaten in several days my strength was at a minimum and taking a shower was wearing me out. You see, I wasn’t just suffering plain old flu, mine was a special flu that I brought on myself…it came out of a bottle marked Vodka 80 proof. This was the granddaddy of all hangovers.
Freshly showered and shaved I descended the staircase to the first floor of our home to find it empty. A terse note on the kitchen table told me my wife had gone to see some friends. “So what” I thought. “I’d rather be alone anyway.”
Descending yet another set of stairs I found my way to the basement where behind the paneled walls I had built a secret compartment that housed my best friend, a quart bottle of 80 proof cheap vodka. You see, when you are a drunk you drink for effect not for taste so why waste money when after a couple of swallows you can’t taste anything anyway.
I removed the bottle from its cobwebbed hiding place, cracked the seal, removed the cap and put the opening to my lips. As the clear liquid burned its way down my throat, I felt rescued. The effect was almost immediate, I felt good again and didn’t give a damn about anyone but me. Another couple of quick slugs and I was even better but by the time I got to the top of the basement stairs the alcohol hit me harder than ever before. Because I hadn’t eaten in days and was not getting rest my resistance was down and I was drunk immediately.
In my addled brain I thought, “Another drink will fix this,” so I made my way back to the basement, recovered the bottle and literally crawled up the stairs into the kitchen where I fell into a kitchen chair uncapped the bottle and took another long slug. In the few brief moments I had been awake I had already consumed a half quart of vodka.
My mind was mush but somehow I remembered the night before, when we were to entertain my boss and his wife for dinner. My wife had never met them so she was a little anxious. I told her not to worry and busied myself with preparing our outdoor barbecue dinner. Our garage was detached from the house so while I was out messing with the grill, I made a few trips into the garage for a rendezvous with another hidden bottle. About 45 minutes before our guests were to arrive I had quite a buzz going but found a way to sneak another long swallow after which I told my wife I was going to lie down until the company came.
Flashback now to my opening sentence because that’s the next thing I remember after lying down. I went upstairs and passed out. My poor wife was left to entertain people she had never met and, I was told later, made up the excuse that I had gotten very sick and had to go to bed. She entertained them for the evening while I slept the sleep only a drunk can know.
As I sat at the kitchen table, the realization of what must have happened made me realize how low I had sunk and I polished off the quart of vodka to somehow assuage my guilt. Here I was with my head the table, drunk again, remorseful and needing another drink but my stash was gone. I had no more and knew I could not drive — hell, I could hardly walk.
Reluctantly I picked up the phone and dialed my brother. I told him I needed help because I thought I was an alcoholic. He drove me to a treatment center and that’s when my life began anew.
I need to pause here for a moment to offer thanks to some people who gave me a much needed break Bill Kling, founder and President of Minnesota Public Radio, Sally Pope Kling his wife, Rick Lewis, who then was the VP of News at MPR and John Merli, the News Director.. They not only allowed me time to recover but to come back to MPR and continue to work. Thanks Bill, Sally, Rick and John. And…of course my brother Terry who took me to treatment. All of you will always be in my thoughts and prayers.
Within a year I started my own communications consulting business which I am still practicing.
If you are an addict, think you might be or know someone who needs help here are some resources.
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 email@example.com. 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 firstname.lastname@example.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.
I am an average American male, human being. I’m not a genius not gifted just a man of normal intelligence who likes to think and read and research and write about about what I’ve found. Some things really stump me, though. I’m terrible at math, I love physics but don’t have a clue about how any of it works, and even after spending a good many years as a professional broadcaster I still don’t completely understand how the sound and picture got from me to your radio or TV. What mystifies me most, though, is the thought process of people who call themselves ethicists. The word is even hard to say, you kind of feel as though you have developed a lisp.
Just so we are all on the same page here, it is important to define our terms. First the Dictionary.com definition of ethics http://dictionary.reference.com/browse/ethics
[eth-iks] Show IPA
1. ( used with a singular or plural verb ) a system of moral principles: the ethics of a culture.
2. (the rules of conduct recognized in respect to a particular class of human actions or a particular group, culture, etc.: medical ethics; Christian ethics.
3. moral principles, as of an individual: His ethics forbade betrayal of a confidence.
4.( usually used with a singular verb ) that branch of philosophy dealing with values relating to human conduct, with respect to the rightness and wrongness of certain actions and to the goodness and badness of the motives and ends of such actions.
Art Caplan of the University of Pennsylvania, the man who questioned whether the Vice President was too old to get a transplant, is a “Bioethicist.” The same Dictionary gives this definition.
[bahy-oh-eth-iks] Show IPA
noun ( used with a singular verb )
a field of study concerned with the ethics and philosophical implications of certain biological and medical procedures, technologies, and treatments, as organ transplants, genetic engineering, and care of the terminally ill.
Having established who and what we are talking about let us return to the continuing saga of the Cheney heart transplant. The ethicists are rallying behind their colleague Art Caplan. One said, “The ethical issues are not that he (VP Cheney) got a transplant, but who didn’t?”
What an absurd argument! That could be said about anyone who got a transplant. if a 40 year old got a new liver, do we ask, “Who didn’t get the liver he just received?” I may not know much about ethics but I do have a clue about logic and somehow logic has been lost in the arguments forwarded by these learned people. I wonder how well any of them would do on “Are you smarter than a 5th grader.” Probably not real well being as that takes knowledge not philosophizing.
At the risk of sounding like a reactionary I have to say that some of these ethicists are the ones who got us in this donation shortage in the first place. For years the ethicists have been telling us that the only ethical way to obtain organs is through the “Altruistic” system which is what we have now — people voluntarily becoming donors. This method has been in effect since 1984. The problem is that it doesn’t provide anywhere near enough donors to satisfy the need, therefore from 6000 to 7000 people die each year while waiting for organs.
The ethicists have met many times to consider alternatives to altruistic donation and each time after a great deal of philosophizing, consternation and speculation have found that the alternatives are, you’ve got it, “unethical.”
Now I’m no rocket scientist and don’t have a PHD or a fancy title like “Bioethicist” but I do have common sense. It seems to me that if you are really concerned about ethics you would have to expand your thinking to a bigger picture. These ethicists appear to have quit thinking about the problem when they reached their myopic conclusion. They conveniently ignore the fact that people are still dying and will continue to die because they refuse to allow change. Doesn’t that deserve some of their “ethical” brainpower, philosophizing and speculation, too? It is amazing to me how strangely silent these “holier than thou” ethicists are about not questioning the ethics of allowing people to die.
There may be an explanation for their actions though and that explanation was found way back in 1931,long before transplants were considered possible. You see, even then the medical community was having problems with ethicists who considered themselves to be “Experts.” http://tinyurl.com/7c8fnho
Harold J. Laski writing in the London’s Fabian Society, manuscript in February of 1931, presented a challenge to the expertise of an “expert” in decision-making with the following:
“But it is one thing to urge the need for expert consultation at every stage in making policy; it is another thing, and a very different thing, to insist that the expert’s judgment must be final. For special knowledge and the highly trained mind produce their own limitations which, in the realm of statesmanship, are of decisive importance.
Expertise, it may be argued, sacrifices the insight of common sense to intensity of experience. It breeds an inability to accept new views from the very depth of its preoccupation with its own conclusions. It too often fails to see round its subject. It sees its results out of perspective by making them the centre of relevance to which all other results must be related. Too often, also, it lacks humility; and these breeds in its possessors a failure in proportion which makes them fail to see the obvious which is before their very noses.
It has, also, a certain caste-spirit about it, so that experts tend to neglect all evidence which does not come from those who belong to their own ranks. Above all, perhaps, and this most urgently where human problems are concerned, the expert fails to see that every judgment he makes, not purely factual to nature, brings with it a scheme of values which has no special validity about it. He tends to confuse the importance of his facts with the importance of what he proposes to do about them.”
I have no idea who Mr. or Dr. Laski was but his profound insight into the psyche of ethicists is a perfect reflection of my thoughts only articulated far more effectively.
I suppose there’s a role for ethicists to play in our society but at this point in my life (73 years worth) I don’t need a so-called ethicist to explain the difference between right and wrong to me. I’ve not studied the great philosophers to the extent they have but living as long as I have and having had a heart transplant has pretty much instilled in me a set of values that I think are pretty solid. That’s probably true about most people. We don’t need much help in making moral decisions. Do we want information? Sure. Will we accept advice? Sometimes. Do we need to have ethicists make decisions for us? Never! Unfortunately they do and It has cost thousands of lives.
Bob Aronson, a 2007 heart transplant recipient is the founder of Facebook’s 1700 member Organ Transplant Initiative and the writer of 110 blogs on donation/transplantation issues on Bob’s Newheart on WordPress.
You may comment in the space provided or email your thoughts to me at email@example.com. 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 a PowerPoint slide show for your use free and for use 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.
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.
I am writing this at two o’clock in the morning on Monday September 20, 2010 because I want to report it while everything is fresh in my addled mind.
Facebook can be a wonderful tool to interact with the rest of the world, but don’t depend on them to be of any help if you ever have a problem with the service. Yes, they have a so-called “Help Center” http://www.facebook.com/help/ that looks impressive until you try to use it. There is no way you can actually talk to anyone. I have come to believe that Facebook is nothing more than a giant supercomputer like “Hal” in the movie 2001 A Space Odyssey. There are no people there, just Hal and he does not communicate with mere mortals. I’ll bet shareholders can talk to him but not us measly members.
You see, I am a heart transplant recipient and the administrator of ORDER Transplantation Initiative http://www.facebook.com/group.php?gid=15612565382 a Facebook site dedicated to helping organ donors, caregivers, those who need transplants and patients who have had them. In three years we’ve attracted over 2,300 members. Many of these people are in life and death situations, desperately waiting for life saving organ transplants that may never come. This is no breezy, lightweight page, it deals with issues and people who depend on the information we offer to make important life decisions.
For 3 years the site was named Organ Transplant Patients, Families and Friends but because we have expanded our horizons so greatly in that time I decided a name change that properly defined our group was in order so I performed the very simple Facebook function of changing the name and notifying all the members of the action.
The message I sent to members was that we had changed the name to ORDER Transplantation Initiative, along with an explanation of the meaning of the acronym ORDER. Everyone got the message. Then….Facebook or Hal sent out another message, this one announcing that I had changed the name of the group from what it was (Organ Transplant Patients, Families and Friends) back to Organ Transplant Patients, Families and Friends. Obviously the message made no sense. But the worst was yet to come. Facebook didn’t just send one bogus message to all members it continued to send the same message over and over again, hour after hour after hour. Some members got as many as 100 or more of the same message and many become very angry.
I did my best to tell everyone that the spamming was not the fault of our group but that it was Facebook that was to blame. I think my clarification got lost in the Facebook maelstrom of emails because members began to drop out of the group despite my repeated efforts to calm and reassure them.
In the meantime, just to be sure it was a Facebook caused problem I ran four sweeps of my computer with malware and virus destroying software. The sweeps found nothing. Then I checked Facebook and found that over the months scores of group administrators had complained of the same thing happening and got no, nada, niente response from Facebook. Some administrators said they lost most of the members they had worked so hard to get. Now it was very clear that Facebook was at fault and I again reported the fact to my members but to no avail, they continued to leave the group. That’s when I went back to the Facebook “Help Center” and found that you cannot reach a person there, there is no “Contact Us” icon. All you can do is choose from a list of problems, probably written by Hal, and if yours isn’t there you are out of luck.
Finally, after many internet searches and digging into the Facebook ‘Help Center” site, I found a well-hidden link that allowed you to report a “bug.” I reported it four times. Once I got a return form-letter email, thanking me for bringing it to their attention, the other times I received nothing. It is now 36 hours later and I’ve still heard nothing and we are now down some 700 members.
After about 18 hours of this nonsense I decided that the only way to stop the never-ending stream of email that was going to members was to shut down the site. That meant we’d lose all the information we had accumulated and ALL of our members,. But I determined that shutting it down and attempting to get members to re-join was a better tactic than continuing to irritate them and run the risk of losing them forever. Before doing that, however, I made one more effort to keep it open. We posted a notice on the site, telling members how to turn off the notification process on their member page so they could stop getting the Hal generated emails. The jury is still out on whether that’s working. I will write a follow-up to this blog.
How to Stop the Bogus emails. For those of you still getting the bogus emails here’s how to stop them. Go to your Facebook page, click on “Account” in the upper right hand blue bar, click on “Application Settings,” scroll down to “Groups” then click on “Edit Settings,” when it opens click on “Other Permissions, ” scroll down to “Changes the Name of One of Your Groups” and remove the check mark. that will do it.
In the meantime, a friend who is the administrator of another Organ donation/transplantation Facebook site, Rex Maus of Transplant Community Outreach , http://www.facebook.com/group.php?gid=222020559306#! was trying to help me by telling his and my members that it was a Facebook problem and we were working on it. As a result, his group started losing members and then because of his vigorous efforts on my behalf, Facebook (Hal actually because there are no people there) banned him yes, banned him, from the service. They let an angry woman write “F— You” on my group’s wall but banned Rex because he was trying to help.
Rex’s group and mine are life saving groups. People depend on and look to us for answers on how to help their dying loved ones get organs for transplantation, how to take care of them, how to register to be organ donors, new advances in medicine, science and technology and information on research into new ways to help the over 110,000 people in the U.S. who are awaiting transplants. Many of them will die waiting. For Facebook to ignore our problem is criminal.
By way of this blog we are asking readers to contact Facebook at their Corporate Headquarters, 1601 S. California Ave. Palo Alto, CA 94304 (650)543-4800, express your outrage over this situation and urge them to offer a link to reach real people who can help solve real problems. Pick up the phone ASAP and let them know that their concentration on profitability over all other issues is offensive, wrong and may even be responsible for the further suffering of our members. I, for one, am mad as hell and I’m not going to take it anymore!
I hope you have found this post to be helpful, perhaps enlightening but no matter what we would like to get your thoughts on this most important issue. Please comment in the space provided or email your thoughts to me at firstname.lastname@example.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be a donor you may save or positively affect over 50 lives. Some of those lives may be people you know and love.
Visit and join my Facebook site, ORGAN Transplantation Initiative (OTI) at http://www.facebook.com/group.php?gid=152655364765710 the more members we get the greater our potential impact on decision makers who influence all organ transplant issues. Also, check out my blog https://bobsnewheart.wordpress.com and my Facebook home page http://www.facebook.com/home.php.