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


heart full of love

Introduction

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

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

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

 

The Beginning. An Earthquake Swallows You Whole

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Disease Progresses

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Recovery. The Days After

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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bobBob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes. Then, when registered, tell your family about your decision so there is no confusion when the time comes.

 

Clinical Depression. You Can Defeat Your Demons!


By Bob Aronson

loneliness cartoonDepression, what is it? Why can’t you just snap out of it? Many people including family and friends who have not experienced depression have great difficulty understanding it much like people who are not addicts can’t understand addiction. In both cases we often hear advice like, “Snap out of it, you’ve got things pretty good. There’s no reason to be depressed.” Or, “You made the choice to start drinking or using drugs so choose to stop.” Oh, if it were that simple.

Here’s a cold slap in the face to bring us into reality. Depression is a mental illness, like the common cold is a physical illness. There has long been a stigma associated with mental illness held over from the days of Insane Asylums and “Crazy” people. That stigma is rapidly disappearing because so many people suffer from depression which is often a chemical imbalance that is quite treatable. Your mental health is every bit as important as your physical health and one can affect the other.

Here are some shocking statistics from the National Institutes of Mental Health (NIMH).

Major Depressive Disorder

  • Major Depressive Disorder is the leading cause of disability in the U.S. for ages 15-44.3
  • Major depressive disorder affects approximately 14.8 million American adults, or about 6.7 percent of the U.S. population age 18 and older in a given year.1, 2
  • While major depressive disorder can develop at any age, the median age at onset is 32.5
  • Major depressive disorder is more prevalent in women than in men

Major or clinical depression is an awful feeling. It is a gnawing at the pit of your stomach, in your gut that makes you feel hopeless, helpless and alone. It is as though someone locked up your ability to reason, your sense of humor and your will to live in a windowless, dark, solitary confinement jail cell from which there is no escape. It is a constant feeling of impending doom combined with a profound sadness and even fear. It can steal your energy, memory, concentration, sex drive, interest in activities you used to love and…it can even destroy your will to live. Depression may not be as common as the common cold but it is much more common than ever before. Nearly 20 percent of Americans suffer from it at one time or another.

Logic says that you should be able to “Will” yourself out of this mood, but will power alone cannot give you tStop being sadhe boost you need to get your life’s engine started again. Mental illness is not unlike physical illness. You cannot use will power to eliminate depression any more than you could use it to stop cancer. No one wants to be depressed, no one,. Think about it. If will power would work as an anti-depressant there would be no depression because again, no one wants to feel like what I described.

Let’s get to the medical description and symptoms as offered by the Mayo Clinic. http://www.mayoclinic.org/diseases-conditions/depression/expert-answers/clinical-depression/faq-20057770

“To be diagnosed with clinical depression, you must have five or more of the following symptoms over a two-week period, most of the day, nearly every day. At least one of the symptoms must be either a depressed mood or a loss of interest or pleasure. Signs and symptoms may include:
• Depressed mood, such as feeling sad, empty or tearful (in children and teens, depressed mood can appear as constant irritability)
• Significantly reduced interest or feeling no pleasure in all or most activities
• Significant weight loss when not dieting, weight gain, or decrease or increase in appetite (in children, failure to gain weight as expected)
• Insomnia or increased desire to sleep
• Either restlessness or slowed behavior that can be observed by others
• Fatigue or loss of energy
• Feelings of worthlessness, or excessive or inappropriate guilt
• Trouble making decisions, or trouble thinking or concentrating
• Recurrent thoughts of death or suicide, or a suicide attempt
Your symptoms must be severe enough to cause noticeable problems in relationships with others or in day-to-day activities, such as work, school or social activities. Symptoms may be based on your own feelings or on the observations of someone else.
Clinical depression can affect people of any age, including children. However, clinical depression symptoms, even if severe, usually improve with psychological counseling, antidepressant medications or a combination of the two.”

The National Institutes of Health (NIH) has this to say about depression.

What causes depression?

Several factors, or a combination of factors, may contribute to depression.
• Genes—people with a family history of depression may be more likely to develop it than those whose families do not have the illness.
• Brain chemistry—people with depression have different brain chemistry than those without the illness.
• Stress—loss of a loved one, a difficult relationship, or any stressful situation may trigger depression.
Depression affects different people in different ways.
• Women experience depression more often than men. Biological, life cycle, and hormonal factors that are unique to women may be linked to women’s higher depression rate. Women with depression typically have symptoms of sadness, worthlessness, and guilt.
• Men with depression are more likely to be very tired, irritable, and sometimes even angry. They may lose interest in work or activities they once enjoyed, and have sleep problems.
• Older adults with depression may have less obvious symptoms, or they may be less likely to admit to feelings of sadness or grief. They also are more likely to have medical conditions like heart disease or stroke, which may cause or contribute to depression. Certain medications also can have side effects that contribute to depression.
• Children with depression may pretend to be sick, refuse to go to school, cling to a parent, or worry that a parent may die. Older children or teens may get into trouble at school and be irritable. Because these signs can also be part of normal mood swings associated with certain childhood stages, it may be difficult to accurately diagnose a young person with depression.

get out of bedOk we’ve defined the malady and we know how clinicians determine if patients have it so the next logical question is, “What can you do about it.” Well, the answer is simple, but it will take a major commitment on your part to make the answer work for you, we can start by identifying some hazards, potholes on the road to good mental health.

Depression: Ten Traps to Avoid

Dr. Stephen Ilardi, author of “The Depression Cure,” has identified several things that can make depression worse. First, know this. Depression is a serious medical condition and should be treated by a doctor or licensed therapist. Having said that, here”s what Dr. Ilardi suggests.

Trap 1: Being a Couch Potato

When you’re feeling down, it’s tempting to hole up in your bed or on the couch. Yet exercise – Even moderate activityclinical depression image like brisk walking – has been shown to be at least as effective against depression as antidepressant medication. It works by boosting the activity of the “feel-good” neurochemicals dopamine and serotonin.
For an “antidepressant dose” of exercise, try at least 40 minutes of brisk walking or other aerobic activity three times a week.

Trap 2: Not Eating “Brain Food”

Omega-3 fats are key building blocks of brain tissue. But the body can’t make omega-3s; they have to come from our diets. Unfortunately, most Americans don’t consume nearly enough Omega-3s, and a deficiency leaves the brain vulnerable to depression. Omega-3s are found in wild game, cold-water fish and other seafood, but the most convenient source is a fish oil supplement. Ask your doctor about taking a daily dose of 1,000 mg of EPA, the most anti-inflammatory form of omega-3.

Trap 3: Avoiding Sunlight

Sunlight exposure is a natural mood booster. It triggers the brain’s production of serotonin, decreasing anxiety and giving a sense of well-being. Sunlight also helps reset the body clock each day, keeping sleep and other biological rhythms in sync.

During the short, cold, cloudy days of winter, an artificial light box can substitute effectively for missing sunlight. In fact, 30 minutes in front of a bright light box each day can help drive away the winter blues.

Trap 4: Not Getting Enough Vitamin D

Most people know vitamin D is needed to build strong bones. But it’s also essential for brain health. Unfortunately, more than 80 percent of Americans are vitamin D deficient. From March through October, midday sunlight exposure stimulates vitamin D production in the skin – experts advise five to 15 minutes of daily exposure (without sunscreen). For the rest of the year, ask your doctor about taking a vitamin D supplement.

Trap 5: Having Poor Sleep Habits

sleepChronic sleep deprivation is a major trigger of clinical depression, and many Americans fail to get the recommended seven to eight hours a night. How can you get better sleep?

Use the bed only for sleep and sex – not for watching TV, reading, or using a laptop. Turn in for bed and get up at the same time each day. Avoid caffeine and other stimulants after midday. Finally, turn off all overhead lights

Trap 6: Avoiding Friends and Family

When life becomes stressful, people often cut themselves off from others. That’s exactly the wrong thing to do, as research has shown that contact with supportive friends and family members can dramatically cut the risk of depression. Proximity to those who care about us actually changes our brain chemistry, slamming the brakes on the brain’s runaway stress circuits.

Trap 7: Mulling Things Over

When we’re depressed or anxious, we’re prone to dwelling at length on negative thoughts – rehashing themes of rejection, loss, failure, and threat, often for hours on end. Such rumination on negative thoughts is a major trigger for depression – and taking steps to avoid rumination has proven to be highly effective against depression.

How can you avoid rumination? Redirect attention away from your thoughts and toward interaction with others, or shift your focus to an absorbing activity. Alternatively, spend 10 minutes writing down the troubling thoughts, as a prelude to walking away from them.

Trap 8: Running with the Wrong Crowd

Scientists have discovered that moods are highly contagious: we “catch” them from the people around us, the result of specialized mirror neurons in the brain. If you’re feeling blue, spending time with upbeat, optimistic people might help you “light up” your brain’s positive emotion circuits.

Trap 9: Eating Sugar and Simple Carbs

Researchers now know that a depressed brain is an inflamed brain. And what we eat largely determines simple carbsour level of inflammation. Sugar and simple carbs are highly inflammatory: they’re best consumed sparingly, if at all.

In contrast, colorful fruits and veggies are chockablock with natural antioxidants. Eating them can protect the body’s omega-3s, providing yet another nice antidepressant boost.

Trap 10: Failing to Get Help

Depression can be a life-threatening illness, and it’s not one you should try to “tough out” or battle on your own. People experiencing depression can benefit from the guidance of a trained behavior therapist to help them put into action depression-fighting strategies like exercise, sunlight exposure, omega-3 supplementation, anti-ruminative activity, enhanced social connection, and healthy sleep habits.

So you think you’ve avoided all the traps, but you are still depressed, now what? According to the National Alliance on Mental Illness (NAMI) here are the options. (http://www.nami.org/Content/NavigationMenu/Mental_Illnesses/Depression/Depression_Treatment,_Services_and_Supports.htm)

Treating Major Depression

pillsAlthough depression can be a devastating illness, it often responds to treatment. The key is to get a specific evaluation and a treatment plan. Today, there are a variety of treatment options available for depression. There are three well-established types of treatment: medications, psychotherapy and electroconvulsive therapy (ECT). A new treatment called transcranial magnetic stimulation (rTMS), has recently been cleared by the FDA for individuals who have not done well on one trial of an antidepressant. For some people who have a seasonal component to their depression, light therapy may be useful. In addition, many people like to manage their illness through alternative therapies or holistic approaches, such as acupuncture, meditation, and nutrition. These treatments may be used alone or in combination. However, depression does not always respond to medication. Treatment resistant depression (TRD) may require a more extensive treatment regimen involving a combination of therapies.

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Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 mmagic kindom in backgroundember Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Prescribing Abilify — Are Physicians Careful Enough?


By Bob Aronson

final cartoonThis blog is a wake-up call for those who take anti-depressants.  It is an attempt by Bob’s Newheart to draw attention to the drugs, the prescription process and some of the side effects they present.  We will focus in particular on the Bristol Meyers Squibb antipsychotic, Abilify.

This post does not pretend to offer a scientific evaluation of the drug.  We have neither the expertise nor the facilities to accomplish that.  Through research, though, we can offer readers some selected information upon which they can make their own judgments.  Specifically we looked into what the drug is intended to do, what it does, what unintended consequences have resulted and, of course, the profitability of the medication.

I was drawn to this subject because I have taken Abilify and suffered serious side effects.  I will detail them and offer other examples both scientific and personal later in this post.

Abilify is becoming a very commonly prescribed anti-depressant.  While there are many possible side effects this warning from the U.S. Food and Drug Administration (FDA) stands out.

FDA WARNINGS: INCREASED MORTALITY IN ELDERLY

PATIENTS WITH DEMENTIA-RELATED PSYCHOSIS and

SUICIDALITY AND ANTIDEPRESSANT DRUGS

See full prescribing information for complete boxed warning.

Elderly patients with dementia-related psychosis treated with

Antipsychotic drugs are at an increased risk of death. ABILIFY is

not approved for the treatment of patients with dementia-related

psychosis. (5.1)

Children, adolescents, and young adults taking antidepressants for

Major Depressive Disorder (MDD) and other psychiatric disorders

are at increased risk of suicidal thinking and behavior. (5.2)

Not only does Abilify cause concern for elderly patients, it should be a cause of concern for all patients for many reasons including one that affected me, Tardive Dyskinesia.  Remember that term…we’ll be returning to it, but first I want to re-visit the subject of depression and what it is.

Many awaiting organ transplants and recipients as well suffer from serious bouts of depression.  They often will attribute their sunken feelings with being told that they have an end-stage disease.

Strangely, many patients who have received the “gift of life” also feel depressed and some even become suicidal.  Many believe they are depressed due to guilt.  Guilt caused by the belief that they received organs ahead of patients who were sicker and more deserving.

To the lay person the explanations given by pre and post-transplant patients make sense but medical science and research has told us for a very long time that the moods they describe may be the result of chemical imbalances.  Well, that may not be true.  Here’s what the Harvard Medical school has to say about depression and what it is.

cartoon...depression“Research suggests that depression doesn’t spring from simply having too much or too little of certain brain chemicals. Rather, depression has many possible causes, including faulty mood regulation by the brain, genetic vulnerability, stressful life events, medications, and medical problems. It’s believed that several of these forces interact to bring on depression.

To be sure, chemicals are involved in this process, but it is not a simple matter of one chemical being too low and another too high. Rather, many chemicals are involved, working both inside and outside nerve cells. There are millions, even billions, of chemical reactions that make up the dynamic system that is responsible for your mood, perceptions, and how you experience life.

With this level of complexity, you can see how two people might have similar symptoms of depression, but the problem on the inside, and therefore what treatments will work best, may be entirely different.” You can read all the details of the Harvard explanation here http://www.health.harvard.edu/newsweek/what-causes-depression.htm

If you read between the lines of the Harvard explanation you can quickly come to the conclusion that physicians who treat depression are involved in educated guesswork as they try to find the right drugs to relieve depression symptoms.

I have been treated for depression for years and whether the treatment was offered by my family physician or by a licensed, board certified Psychiatrist the approach is the same.  They ask some key questions about lifestyle, what’s bothering you, how you feel and why and then say, “We’ll try a few things to see what works.  Let’s get you started on (drug).  It takes from 2 to 5 weeks for an effect to be felt but call me in a couple of weeks to let me know how you are doing.”

Obviously physicians have more knowledge about things medical than we do but when it comes to depression it can be a big guessing game.  There are scores of drugs that can be used depending on your symptoms but don’t be surprised if the most highly skilled psychiatrist armed with the best questions has difficulty deciding what’s best for you.  Even the famed Mayo Clinic says,

“Antidepressants are a popular treatment choice for those with moderate or severe depression. Although antidepressants may not cure depression, they can reduce your symptoms. The first antidepressant you try may work fine. But if it doesn’t relieve your symptoms, or it causes side effects that bother you, you may need to try another.

But don’t give up. A number of antidepressants are available, and chances are you’ll be able to find one that works well for you.”

So when you begin taking an anti- depressant you should not expect immediate positive results because you may get no relief at all — or worse yet, you could suffer some very negative side effects.

There are several different types of anti-depressants and they, like all drugs, bring with them side effects of which can be quite serious.  The problem is that because no two people have the same physical and mental make-up it is impossible to predict who will react negatively to a medication, who will react positively and who will have no reaction at all.  You can find more information about the types of drugs and their side effects here.  http://www.helpguide.org/mental/types_of_antidepressants.htm.

And that leads us to our reason for writing this blog.  Abilify and drugs like it can help a person feel wonderful abilifyor make you absolutely miserable and cause permanent damage…  I took Abilify and had a horrible reaction to it as did others I know.

Before I go on I feel compelled to point out that my case and other individual cases do not constitute medical evidence.  Individual cases are classified as anecdotal and while they may sound convincing are not considered medical proof so I will do my best to combine anecdotal and real medical evidence.

You should know, too, what anti-psychotic drugs like Abilify are and what they do.

According to Medicine Net dot com:

http://www.medicinenet.com/script/main/art.asp?articlekey=26299 The first antipsychotic medications were introduced in the 1950s. Antipsychotic medications have helped many patients with psychosis lead a more normal and fulfilling life by alleviating such symptoms as hallucinations, both visual and auditory, and paranoid thoughts. However, the early antipsychotic medications often have unpleasant side effects, such as muscle stiffness, tremor, and abnormal movements, leading researchers to continue their search for better drugs.

“The 1990s saw the development of several new drugs for schizophrenia, called “atypical antipsychotics.” Because they have fewer side effects than the older drugs, today they are often used as a first-line treatment. The first atypical antipsychotic, clozapine (Clozaril), was introduced in the United States in 1990. In clinical trials, this medication was found to be more effective than conventional or “typical” antipsychotic medications in individuals with treatment-resistant schizophrenia (schizophrenia that has not responded to other drugs), and the risk of tardive dyskinesia (a movement disorder) was lower. However, because of the potential side effect of a serious blood disorder–agranulocytosis (loss of the white blood cells that fight infection)-patients who are on clozapine must have a blood test every 1 or 2 weeks. The inconvenience and cost of blood tests and the medication itself have made maintenance on clozapine difficult for many people. Clozapine, however, continues to be the drug of choice for treatment-resistant schizophrenia patients.

Several other atypical antipsychotics have been developed since clozapine was introduced, they are risperidone (Risperdal), aripiprazole (Abilify),  olanzapine (Zyprexa), quetiapine (Seroquel), and ziprasidone (Geodon). Each has a unique side effect profile, but in general, these medications are better tolerated than the earlier drugs. Click on the links above to each drug for more information about side effects.

All these medications have their place in the treatment of schizophrenia, and doctors will choose among them. They will consider the person’s symptoms, age, weight, and personal and family medication history”.

Now let’s get back to those side effects I alluded to earlier in this post.

Patients who take Abilify and some other prescription drugs can develop Tardive Dyskinesia which presents as involuntary, repetitive tic-like movements primarily in the facial muscles or (less commonly) the limbs, fingers and toes. The hips and torso may also be affected. 

Symptoms of tardive dyskinesia can develop and persist long after use of the medication causing the disorder has been discontinued. Tardive dyskinesia can appear similar to other types of disorders, most notably Tourette’s syndrome and can become a permanent medical condition.  

While taking Abilify I developed Tardive Dyskinesia and fortunately quit taking it in time to prevent the affliction from becoming permanent.  The above description does not do justice to it.  When it affected me it was accompanied by confusion, agitation and uncontrollable and very visible tremors around my lower jaw to the point where my teeth could be heard hitting each other despite major efforts on my part to prevent the occurrence.  Furthermore the drug caused tremors in my hands and hips which disappeared once I quit taking the medication.  I felt as though I was disassembling.

Not all patients are affected by dyskinesia.  Some have experienced other side effects.  One friend who we will call “Bill” wrote the following.

I started off on the lowest dose, 2 mg but I felt as though I was going to crawl out of my skin so I cut the dose in half on my own.

While I did not have the movement issues consistent with Tardive dyskinesia.  I did experience a terrible feeling of anxiety and depression unlike any I had experienced in the past.  I can describe the feeling in no other way than to say I felt like my mind was coming unglued.

My physician explained that he thought the dose was too low so we increased it again to 2mg which is a very lose dose but — things got much worse.   I could no longer handle the effects on my mind and body and stopped taking it.  The effects went away the next day.

Perhaps Abilify works for some but for me it was disastrous. Good thing I have a medical background and sense enough to stop taking it. Too often the docs give you something like this and say see me in 2 months, or longer.”

It is important to note here that the drug label clearly says that no one should just stop taking Abilify.  To discontinue use one should taper off slowly under a physician’s watchful eye.  Unfortunately as with Bill, he was unable to see a physician and the effects were so bad he felt compelled to take action himself.

Two stories do not constitute medical evidence but a CNN report says,

“The growing use of a popular drug in the long-term treatment of bipolar disorder is based largely on a single, flawed clinical trial that may be steering doctors and patients away from drugs with a more established track record.”

The CNN expert who studied the studies that got Abilify FDA approval said, “

“The medical research does not appear to justify the widespread use of Abilify for maintenance therapy,” says psychiatrist Alexander C. Tsai, M.D., one of the lead authors of the review and a visiting researcher at Harvard University.” We failed to find sufficient data to support its use.” http://www.cnn.com/2011/HEALTH/05/03/abilify.use.questions/

Bristol Meyers Squibb is the American manufacturer of the drug.  They spend a lot of money on advertising and it pays off.  Abilify was the second-biggest selling drug in their portfolio In 2011 when the antipsychotic generated nearly $2.8 billion in sales, or roughly 13 percent of net sales second only to the $7.1 Billion generated by Plavix.

According to Pharmalot http://www.pharmalive.com/feds-subpoena-bristol-myers-over-abilify-marketing

In September 2007, Bristol-Myers Squibb agreed to settle charges of giving kickbacks to docs and overcharging the government. Among the infractions alleged by the federal and state governments was off-label promotion of its Abilify antipsychotic, and the drugmaker subsequently paid $515 million and signed a five-year corporate integrity agreement.

At the time of the settlement, Bristol-Myers was charged with directing its sales force to call on child psychiatrists and other pediatric specialists, and reps then urged physicians and other health care providers to prescribe Abilify for children. The drug maker also was charged with creating a specialized long=term care sales force that called almost exclusively on nursing homes, where dementia-related psychosis is far more prevalent than schizophrenia or bipolar disorder (back story and the CIA).

The bottom line is this.  Abilify can help.  The problem is that medical science cannot say with certainty who it will help, what conditions it will alleviate and most importantly when and if the side effects will show up.  All they can say is Abilify MIGHT help some patients.

If your physician prescribes Abilify for you it is imperative that you have access to him/her while you are taking it so that if you are negatively affected you can be directed on how best to quit taking it without causing further damage.

One has to wonder about the impact of prescription drug advertising.  It is obviously done to get patients to put pressure on physicians to prescribe drugs that cannot be bought over the counter.  One also has to wonder about the practice of providing physicians with samples to pass out to patients and finally — one has to wonder what’s in it for the physician who prescribes the meds.  Lots of questions — not too many answers.

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scooter half size for wordpressBob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.

Mental Illness Myths Exploded — Music Therapy Can Help


“Music is a moral law. It gives soul to the universe, wings to the mind, flight to the imagination, and charm and gaiety to life and to everything.”

Plato

Mental Illness is as real as cancer — you can’t “think” your way out of it.

By Bob Aronson

Get over it!  emotional baggageIt’s all in your head,” was and is a common utterance by those who don’t understand that just because it is in your head doesn’t make it less real.  Will power cannot dislodge demons of the mind any more effectively than it can stop cancer.   Both are real, both are serious and treatment for both is available and necessary.

The difference between the two is that while we accept illnesses of the body as real illnesses we, as a society, have not yet fully accepted mental illness as a disease and until we do greater societal problems will ensue.

Both pre and post transplant patients suffer from depression.  Some suffer from other mental illnesses as well.  Just because we need or have had an organ or tissue transplants doesn’t mean we aren’t subject to all the ills that befall everyone else.  In reality we may be more susceptible because we have come face to face with death.  Many of us live with it for years.  You can’t get on the transplant list unless you have an end stage disease. That’s fancy doctor talk for, “You are dying.”

This blog is about one approach to helping people with emotional or other problems involving the brain…music.  Before we get into solutions, though, it is important to understand the problem.pencil optimism

The U.S. Centers for Disease Control (CDC) says that although mental health and mental illness are related, they represent different psychological states.

Mental health isa state of well-being in which the individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to his or her community.”1 It is estimated that only about 17% of U.S adults are considered to be in a state of optimal mental health.2 There is emerging evidence that positive mental health is associated with improved outcomes.

Mental illness is defined as “collectively all diagnosable mental disorders” or “health conditions that are characterized by alterations in thinking, mood, or behavior (or some combination thereof) associated with distress and/or impaired functioning.”2 Depression is the most common type of mental illness, affecting more than 26% of the U.S. adult population.3 It has been estimated that by the year 2020, depression will be the second leading cause of disabimental illness montagelity throughout the world, trailing only ischemic heart disease.4

Evidence has shown that mental disorders, especially depressive disorders, are strongly related to the occurrence, successful treatment, and course of many chronic diseases including diabetes, cancer, cardiovascular disease, asthma, and obesity5 and many risk behaviors for chronic disease; such as, physical inactivity, smoking, excessive drinking, and insufficient sleep.

Unfortunately public acceptance of mental illness treatment has been slow in coming despite the fact that many effective treatments have existed for a long time.  Often people who are affected don’t seek help because of the embarrassment of being labeled “mentally ill”

Mental Health America (MHA) is trying to dispel the myths surrounding mental illness.  The five most common are: (http://www.mentalhealthamerica.net/go/workplacewellness/5myths )

busting the myths

Myth #1: Mental illness is the same as mental retardation.

The Facts: Mental illness and mental retardation are entirely different disorders. Mental retardation is primarily characterized by limitations in intellectual functioning, while intellectual functioning varies among persons with persistent mental illness just as it does across the general population.

Myth #2: Recovery from mental illness is impossible.

The Facts: While these illnesses are persistent, research has shown that with treatment, the majority of people with mental illnesses achieve genuine improvement in their symptoms over time and lead stable, productive lives. As the treatment of mental illness has advanced, the focus of treatment has shifted from simply minimizing symptoms to true recovery-that is, the reintegration into mainstream society, including (and perhaps most importantly) the world of work.

Myth #3: Mentally ill and mentally restored employees (that is, those in whom mental illness is effectively treated) tend to be second-rate workers.

The Facts: Far from being inferior workers, individuals with mental illnesses may in fact be superior in many ways to their co-workers without mental illness. Employers who have hired these individuals report that their attendance and punctuality exceed the norm, and that their motivation, work quality, and job tenure is as good as — or better than — that of other employees. Research has shown that there is no difference between the productivity of workers with and without mental illness.

Myth #4: People with psychotic disabilities cannot tolerate stress on the job.

The Facts: The response to job-related stress, and precisely which factors will be perceived as stressful, vary among individuals with psychiatric disabilities just as they do among people without such disabilities. For all workers — with or without psychiatric disabilities — productivity is optimized when there is a close match between the employee’s needs and his or her working conditions.

Myth #5: Mentally ill and mentally restored individuals are unpredictable, potentially violent, and dangerous.

The Facts: This myth is reinforced by media portrayals of people with mental illnesses as frequently and randomly violent. However, a research literature review conducted at Cornell University found absolutely no evidence to support such portrayals. The fact is that the vast majority of individuals with psychiatric disabilities are neither dangerous nor violent.

we don't want you

So, Given that we understand the myths and can deal with them let’s look at one form of therapy that can be and has been very effective in some cases.

While mental illness was not an issue, a serious brain injury was in the case of former congresswoman Gabby Gifford  Gabby Giffodwho was seriously wounded when shot in the head in an attempted assassination.   Her therapists have used music to help her learn to walk and speak again, as well as give her an emotional boost along her stunningly difficult path.  If you want to learn more about the Gifford story click on this link from ABC TV news.

http://tinyurl.com/n3cuapy

The power of music

Music can help rewire the brain after a traumatic injury, stroke or accident. In all of us, Our own playlist of personal favorites can help to:colorful notes on staff

  • Trigger memories. Think of jingles that remind you of a company’s name, or that song that always takes you back to your senior year of high school.
  • Promote learning. Next time you have a phone number or list of terms to remember, try putting it to music. Elicit emotions. The movie industry has long known how to use background music to heighten terrifying, tragic or exhilarating moments.
  • Provide motivation. Chores can become an entirely different experience when set to an energetic beat. Improve coordination. If you hear music while you’re walking, you can’t help but to walk to the beat. That’s a biological process called “entraining,” in which a rhythm and melody pull us into synchrony with them.
  • Reduce stress and pain. Calming music can entrain you to breathe deeply and the memories music elicits can remind you of happier, more peaceful times and places.Source: Concetta Tomaino, executive director of the Institute for Music and Neurologic Function at the Beth Abraham Family of Health Services in New York.

Music holds a unique role in human life. Its rhythms help organize movements — almost no one can resist a good beat. Music brings up memories. And music, it seems, can help retrain the speech centers of the brain.

I could go on here and offer quote after quote about what music therapy is and does but the best way to for readers to know how it works is to listen to what patients have to say.  The American Music Therapy Association (AMTA) http://www.musictherapy.org/ has a section on its web site where patients relate their experience with music therapy.  Here are just a few, you can read more by going to the AMTA site.

Parent testimonial, written by Tamera Norris

Music has the power to enrich the mind of a child with autism. Many people with autism have limited verbal expression. They live a life of involuntary silence.road to recovery “After silence, that which comes nearest to expressing the inexpressible is music.” (Aldous Huxley) That is the reason why “music (became) the shorthand of (William’s) emotions.” (Leo Tolstoy) It gave him opportunities for speech, emotional contact and mental focus.

From the age of four through his current age of 16, William has taken a music bath once or twice a week at The Music Settlement. As Oliver Wendell Holmes once said, “…a music bath… is to the soul what the water bath is to the body.” Music has flown out, immersing restless feelings, calming William, minimizing his hesitation. Then it ebbed and he met the eyes of the therapist. With the guidance of Ronna Kaplan and other music therapists, William has developed, encouraged to tune his fine and gross motor skills. The therapy program made use of live and recorded music, pre-planned dialogues for the clients and sound effects. While learning to play instruments, William also learned life skills. “Music (became the soundtrack of (his) life.” (Dick Clark)

Being born with autism makes it difficult to interact with others or communicate verbally. It causes the affected person to be unaware of reacting in ways that others do not commonly react in society. Music therapy provided William a non-threatening environment in which to build relationships with peers, express himself verbally and nonverbally and learn to participate in socially acceptable ways. This was achieved through group therapy, as well as individualized sessions. Both forms were ideal for William, because individual lessons allowed him to learn at his own pace. These lessons were tailored to meet his needs. They helped him to learn to read music, follow a rhythm, and to respect the need to display the proper behavior in the proper situation. Small group therapy required him to learn to take turns and to be a focused member of a team. He had to use proper questions and verbal responses. He had to learn to be both leader and supportive member. This even carried over to life outside of The Music Settlement, as William auditioned for and earned a position on a regular team of drummers for his school. He was able to perform at the House of Blues in front of a large, noisy audience, with no problem. This was not something that he would have been able to withstand before his experiences in music therapy.

We are very pleased and thankful for the progress that William has made over the years and we foresee him continuing to flourish with additional music therapy. The combination of an excellent music therapy curriculum and an enthusiastic, care-giving staff, has enabled William not to just, “…go where a path might lead, but instead to go where there is no path and leave (his) trail.”  (Ralph Waldo Emerson)

I am closing with a short poem, expressing my feelings about The Music Settlement and its staff. It is simply entitled, Thank You.

Thank You

Music therapy teaches
Social skills.
It’s about communication.
It’s about what William’s taught,
In nurturing situations.
He’s learned patience
And tolerance,
Growing in many ways.
His social skills developed,
Made him what he is today.
So, thank you for your guidance,
As only music can touch.
Thank you for reaching our William,
Because it means so much.

A physician/patient  talks about his recovery.

R.B.Fratianne, MD.  Prof. of Surgery, CWRU Dir. Emeritus, Burn Center Metrohealth Med. Center.  I was deeply honored by the gracious invitation to attend this year’s annual meeting of The AMTA and receive the Advocate of the Year Award. At the meeting, I was impressed by the level of enthusiasm and dedication to excellence shown by the highly trained professionals I met. They radiated pride in their work coupled with an intense sense of fellowship which made me feel welcome and respected – even though I was a rookie. For this I am very grateful.

I learned the value of music therapy first-hand when I had a brain tumor diagnosed several years ago. Fortunately it was not a cancer, piano keyboardbut my recovery from major cranial surgery was slow and difficult. I was given physical/occupational and speech therapy. The music therapist working with me on the burn unit knew I played piano by ear and she suggested I work out on the piano as part of my therapy. At first everything seemed strange and “nothing” worked. Molly wouldn’t let me quit. I wanted to – it was frustrating! Slowly I began the feel at home at the keyboard and all my other therapies started to become more effective. I could “think” better.

Music therapy forced my brain to respond to the complex patterns of pitch, tempo and melody, and forced me to integrate motor function with the psycho-acoustic properties of what I was trying to express. I promptly regained my surgical skills at my pre-operative level and returned to practice on the burn unit. This response is known as neuro-plasticity; the unique ability of the brain to bypass injured areas and to re-teach the damaged brain how to regain more normal function.

I believe music therapists play an important, but often overlooked, role in helping patients cope with the effects of illness, pain, loneliness and fearful apprehension about the future of their health. Unfortunately all too often, music therapy is not reimbursed by insurance companies and many hospitals, therefore, do not use this modality of patient care. Other traditional forms of therapy, i.e. physical/occupational/speech etc., have demonstrated they are a cost effective addition to patient recovery. Insurance companies are therefore willing to compensate hospitals for these services and they generate income for the medical facility.

Music therapy professionals MUST produce evidence that their services provide a cost effective addition to other forms of care. THAT MEANS GOOD SCIENTIFIC RESEARCH must be carried out to demonstrate what we all believe. It is not enough to show a reduction in pain and anxiety with music therapy. Research must show a reduction in length of stay or improved patient outcomes for patients such as those sustaining head trauma/post traumatic stress disorder etc. Only then will insurance companies agree to reimburse hospitals/nursing homes for music therapy services; and more medical facilities will be able to incorporate music therapy as a standard of care. Then patients will receive the services we all know will benefit them. May God Speed your efforts on behalf of the patients you serve.

 

The Knot at the End of the Rope

Submitted by Florence Cohen

 end of the rope

My father lived life with strength and determination.  As complications associated with diabetes diminished his physical capabilities, his indomitable will to combat the disease fervently hammered away.  A WW II Navy Seal, Joe Altman lived by a simple rule; when you get to the end of your rope, tie a knot and hang on.

When dementia struck hard and violently broke through Dad’s spirit, music therapist Alessandro Ricciarelli entered his life.  Armed with six strings attached to a wooden guitar, Alessandro surpassed the capabilities of the most sophisticated medical technology.

Each time Alessandro walked through the door, an invisible wall formed around them, creating a comfortable space in which a trusting bond of friendship would quickly form.  Alessandro brought with him happiness, encouragement, added a sense of meaning and purpose to Dad’s life, and, in doing so, resuscitated his spirit.  In a most gentle way, Alessandro treated Joe with the utmost dignity and respect.

Alessandro’s dedication was not limited to actual hospital visits; he took personal time to learn songs that were relevant to Dad and made recordings of their sessions together to be enjoyed at any given time.  Alessandro appreciated the power of positive thoughts, and with his kind words, a smile, compassion, and a true desire to make Dad happy, he encouraged Dad’s participation, leaving us with cherished memories of my father having one last chance to express himself through music, smiling and enjoying life.

In a very real sense, Alessandro was that knot at the end of the rope on to which Dad grabbed.  I am forever grateful to the Music Therapy Program at NYU Medical Center, more specifically, to Mr. Alessandro Ricciarelli.

Obviously music therapy works..at least in some cases with some people but then not all therapy works all the time in all cases.

I will be posting other blogs on the subject of mental illness and the therapies available to those afflicted.  Just know there is help available.  It may take some time to find it and it may turn out to be a combination of therapy or therapies and/or medication.  There is help but you have to find it. It is up to you to seek it out because it is very unlikely a miracle will knock on your door and say, “May I come in?  I’m the cure for all that ails you.”  If that does happen, don’t let them in.  It won’t be real.

Bob informal 3Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. JAgain, write to me and ask for “Life Pass It On.”  I will email it to you immediately.  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  also send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and I will send the show and book ASAP.

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  (OTI).  The more members we get the greater our clout with decision makers.

En Espanol

Bob Aronson de Newheart de Bob es un centro receptor de trasplante 2007, el fundador de la Iniciativa de Facebook cerca de 3.000 miembros de trasplantes de órganos y el autor de la mayoría de estos blogs de donación / trasplante.

Usted puede dejar un comentario en el espacio proporcionado o por correo electrónico a sus pensamientos a mí en bob@baronson.org. Y – por favor difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si se convence a una persona para ser un donante de órganos y tejidos puede salvar o positivamente afectará a más de 60 vidas. Algunas de esas vidas puede haber gente que conoces y amas.

Por favor, vea nuestro video musical “Dawn Anita The Gift of Life” en YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

Si quieres correr la voz personal sobre la donación de órganos, tenemos otra presentación de PowerPoint para su uso gratuito y sin permiso. JAgain, escribir a mí y pedir “Life Pass It On.” Voy a enviar por correo electrónico a usted inmediatamente Esto no es un espectáculo independiente,. Necesita un presentador, pero es producido profesionalmente y objetivamente sonido Si usted decide utilizar el archivo. demuestro que también le enviará una copia gratuita de mi libro electrónico, “Cómo obtener un Standing” O “que le ayudará con habilidades de presentación. Sólo escribo bob@baronson.org y enviaré el programa y el libro lo antes posible.

Además … hay más información sobre este sitio de blogs de otros temas de donación / trasplante. Además, nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos (OTI). Cuantos más miembros que tienen la mayor influencia en nuestra toma de decisiones.

Post Transplant Depression. You Don’t Have To Feel That Way!


depression cartoon

By Bob Aronson

The very first thing you should know is that depression is common after an organ transplant – very common and no one is immune.  You should also know that there is help available.  You don’t have to feel that way!   I know because I suffer from it.  As of this writing I am six years post transplant and my depression is under control because I found help but it still rears its ugly head from time to time.

For two years following my 2007 heart transplant I wallowed in emotional pain, I felt useless, worthless, without value, guilty and empty.  I looked at myself as one might look at a car you’ve owned for many years.  It was useful and desirable once but now it is old and things keep going wrong and need fixing.   To keep it running just costs too much and sad as it is we are probably better off without it.  It is costing more than it is worth.   That’s pretty much how I felt about myself.

Depression, I think, is compounded by the patient’s inner battle between the armies of logical thought and those of emotion.  Your logical mind asks, “How can you be depressed when you just got a new heart that saved your life?”   But, your emotions say, “I don’t know but I feel awful and sometimes I wish I was dead.”  That is a horrible battle to have to fight alone…but you don’t have to, there’s help and you can win.

For a quarter of a century 228642_8263187420_1503_nI had been a communications consultant with a stable of highly respected internationally known clients many of which were based in Minnesota where I lived.  I needed a heart transplant and discovered that I stood a better chance of getting one if I moved to Jacksonville, Florida.  I learned that the Mayo Clinic there had an excellent record of obtaining and transplanting organs and data indicated I stood a better chance of getting a heart there than in Minnesota.  Furthermore, Jacksonville was my wife Robin’s home town and her son, parents and extended family lived there.  It made sense to move…but it also meant giving up a lion’s share of my business.

To shorten a long story we moved to Jacksonville and I got my new heart after only a 13 day wait but recovery took longer than expected.  There were complications…many of them. I got pneumonia, suffered two torn rotator cuffs which resulted in an extended period of excruciating pain and I became very, very depressed.  I could hardly function day to day never mind think of working again.  But, because I could not work I felt guilty and my depression got worse.

I sat in a dark corner of our family room every day watching the TV’s flickering light change the shadows in the room.  The set was on but rarely was I involved in what was playing…my mind was somewhere else.  I felt totally and utterly useless and guilty that I had taken an organ but couldn’t do anything to show that I was worthy of it. I felt that way for two years.  Each day I went through the motions of living, trying to be useful, trying to help my wife with her fledgling business but feeling totally inadequate and unnecessary.

You’ve seen the Roadrunner TV cartoon I’m sure where the poor coyote just can’t win against his fleet footed foe.  wiley hanging from a limbOften the canine victim is seen hanging by one hand from a branch on the side of a mountain…then the branch gives way and he falls the 5,000 feet  to the ground below which flattens him.  I felt like Wylie, like I was hanging from that branch waiting to fall and sometimes I wished the branch would break.

Two things kept me from giving up,  Robin’s constant encouragement and this blog along with my Facebook Group Organ Transplant Initiative (OTI).  Both were started two months after my transplant at the urging of my friends at Mayo.  These social media activities weren’t meant to be anti depressants but they turned out to be just that.   Thank God for both of them.

Then, one day, it occurred to me that maybe, just maybe I could get help and for the first time I mentioned depression as a problem to my Mayo Clinic transplant coordinator.  With virtually no delay I was seen by a physician who determined that anti depressants might help.  There were several false starts before we found one that worked but we did

At about the same time Robin asked me if I could make some wood fixtures for her art show booth; shelving, pedestals and other display items.  I soon found I loved woodwork and a new hobby was born, one that ensured my not returning to that dark corner in which I used to reside.

As I did the research for this blog I found a good deal of information about depression,  most of it clinical in nature and not real helpful.  From personal experience I know that fighting depression isn’t easy.  I know that it can last a long time, it can take even more time to find the right solution and sometime the solutions have a short life and the depression returns which forces you to find another solution.   It is a never ending battle but oh so worth it.

In a document titled “Issues for Today’s transplant Patients….A guide” published by the National Kidney Foundation (NKF) http://www.kidney.org/transplantation/transAction/pdf/UnderstandingDepression.pdf   there is an excellent section on post transplant depression, “Understanding Depression” I won’t re-print all of it but here’s some of it.

NKF LOGL

Depression is extremely common in the United States, and it can have a unique impact on transplant recipients. Practically every transplant recipient has likely felt—or fought off—depression at some time or another.

 Living with a new organ has daily challenges. These include medical bills and getting used to a new body. Some transplant recipients may also feel they are burdening their loved ones with constant doctors’ visits and a general need for extra help. All of this comes on top of the trials and tribulations that arise for everyone, transplant recipient or not.

It’s normal to have a range of feelings after a transplant.  We at the NKF believe that depression is one of the biggest issues people face, and something a lot of health care workers ignore.  Research shows that, in any given year, almost 10 percent of theU.S. population is depressed. That’s 19 million adults, with and without transplants.  And in people with chronic illness, the incidence of depression is much higher . Some research suggests that up to 25 percent of people with illnesses become depressed at some point in their lives. So, if you are a transplant recipient and you feel depressed, you are definitely not alone. 

Depression is different. It’s not just a bad mood, which is something everybody feels. Being depressed means that people feel at least five symptoms of depression for two weeks or longer. A bad mood should only last a couple of days. Depression is also more intense than a bad mood, even how the body feels.

 Nine symptoms of depression:

  1. Feeling depressed for most of the day, almost every day
  2. Lack of enjoyment of activities you once enjoyed, such as going to work or visiting friends.
  3. Weight changes (gaining or losing).
  4. Sleep problems (too much or too little).
  5. Feeling restless.
  6. Lacking energy, feeling easily fatigued.
  7. Feeling worthless or guilty.
  8. Trouble concentrating.
  9. Frequent thoughts of suicide.

 Remember that people have to have at least five of these nine symptoms for at least two weeks before doctors will diagnose depression. This is to make sure that people who have bad days here and there are not misdiagnosed.

The stress of having a transplant can trigger depression.  Having a transplant is a life-altering experience. The range of emotions people feel as a result of the procedure can definitely trigger depression in those who are susceptible to it.   It can be incredibly difficult for people to accept that one of the organs they were born with no longer works. For many, organ failure can feel like a profound loss. Some really grieve over it, which is totally under-standable. Unfortunately, this grief can also lead to depression.

 Having a transplant can create another loss, by changing recipients’ lives in an irreversible way. They may grieve that they can no longer lead the same life as before, now having to rely on doctors and medications to stay well. That can be hard to accept.

 Some recipients may also find it hard to accept that they are more dependent on their families. They may feel like their illness disrupts their families’ lives, and they are dependent on them emotionally and sometimes financially.

For recipients who are used to being the sole providers for their families, that can be really tough.  Financially, many transplant recipients also worry about their futures and how to afford the medicines they’ll need for the rest of their lives.  People with kidney transplants often worry about their health insurance,   knowing that they lose Medicare after three years.   

 Ok, all of that explanation makes a lot of sense but if you are depressed what can you do about it?  There’s much that can be done and you can start by talking to your transplant coordinator.  You can be sure they’ll have some resources for you to investigate or they can arrange for you for appointments.

While treatments abound there are two that are most common.  They are talk therapy and medication.  The most common type of therapy cognitive behavior therapy,  or CBT.  A highly skilled therapist can help you correct the negative thought patterns behind your depression. For instance, if people are constantly feeling hopeless, or that there’s no point in living, There is also a behavioral aspect to cognitive behavior therapy.  It focuses on how helping you avoid behaviors that cause or invite depression…behaviors like staying in bed all day or avoiding activities that had been enjoyable.  This kind of therapy can be done in a one on one or group setting, whichever makes you more comfortable and is most effective.

Another form of therapy is medication.  Sometimes both therapies are applied simultaneously but experts in depression can advise you best on when that is appropriate.

In my case it was medication that worked.  But it took time, there were months of trial and error.  It usually takes four to six weeks for an anti depression medication to work.  Sometimes it did but only for a short while and on other occasions there was no effect at all and we’d have to start all over again.  Different people react differently to the same medication.  What may work for your neighbor may not work for you at all but withy patience and the aid of a professional it is likely you will find the right one.

A word of caution: AVOID ST. JOHN’S WORT

st. John's wort

A lot of people use herbal medicines to treat a variety of conditions. One very popular herbal medicine is St. John’s Wort which has achieved some popularity in treating depression.  Transplant patients should avoid using it because medical evidence clearly indicates that St. John’s Wort interferes with other drugs like Cyclosporin, which people take to prevent transplant rejection.  There is documented evidence that some transplant recipients have lost their organs after taking St. John’s Wort.

Still another way to address depression is activity, a hobby, a business, a project.  The combination of medication and activity is what got me out of depression and keeps me there.  I rarely sit still and when I do it’s because I’m exhausted from all the activity.   I will be writing more about activities but woodwork, music, art, nature studies or astronomy can be of immense help in chasing away your demons.  There’s one for you…you just have to find it.

One way of beating depression is…not to get it.  Not long ago CBS TV news did an interesting story on the subject called, “Depression: Ten Traps to Avoid”  You can watch it on this link…or read it below.

http://www.cbsnews.com/2300-204_162-10004447.html

Clinical depression is a devastating illness, and profound sadness is just the beginning. Depression can rob people of their energy, memory, concentration, sex drive, interest in usual activities – and in severe cases, even the will to live. Seventy million Americans will be afflicted at some point.

Dr. Stephen Ilardi, author of “The Depression Cure,” has identified several things that can make depression worse.

Depression is a serious medical condition and should be treated by a doctor or licensed therapist.

Trap 1: Being a Couch Potato

couch potato

When you’re feeling down, it’s tempting to hole up in your bed or on the couch. Yet exercise –

Even moderate activity like brisk walking – has been shown to be at least as effective against depression as antidepressant medication. It works by boosting the activity of the “feel-good” neurochemicals dopamine and serotonin.

For an “antidepressant dose” of exercise, try at least 40 minutes of brisk walking or other aerobic activity three times a week.

Trap 2: Not Eating “Brain Food”

junk food

Omega-3 fats are key building blocks of brain tissue. But the body can’t make omega-3s; they have to come from our diets. Unfortunately, most Americans don’t consume nearly enough Omega-3s, and a deficiency leaves the brain vulnerable to depression. Omega-3s are found in wild game, cold-water fish and other seafood, but the most convenient source is a fish oil supplement. Ask your doctor about taking a daily dose of 1,000 mg of EPA, the most anti-inflammatory form of omega-3.

Trap 3: Avoiding Sunlight

alone in the dark

Sunlight exposure is a natural mood booster. It triggers the brain’s production of serotonin, decreasing anxiety and giving a sense of well-being. Sunlight also helps reset the body clock each day, keeping sleep and other biological rhythms in sync.

During the short, cold, cloudy days of winter, an artificial light box can substitute effectively for missing sunlight. In fact, 30 minutes in front of a bright light box each day can help drive away the winter blues.

Trap 4: Not Getting Enough Vitamin D

vitamin D from the sun

Most people know vitamin D is needed to build strong bones. But it’s also essential for brain health. Unfortunately, more than 80 percent of Americans are vitamin D deficient. From March through October, midday sunlight exposure stimulates vitamin D production in the skin – experts advise five to 15 minutes of daily exposure (without sunscreen). For the rest of the year, ask your doctor about taking a vitamin D supplement.

Trap 5: Having Poor Sleep Habits

bad sleep habit

Chronic sleep deprivation is a major trigger of clinical depression, and many Americans fail to get the recommended seven to eight hours a night. How can you get better sleep?

Use the bed only for sleep and sex – not for watching TV, reading, or using a laptop. Turn in for bed and get up at the same time each day. Avoid caffeine and other stimulants after midday. Finally, turn off all overhead lights

Trap 6: Avoiding Friends and Family

depressed person

When life becomes stressful, people often cut themselves off from others. That’s exactly the wrong thing to do, as research has shown that contact with supportive friends and family members can dramatically cut the risk of depression. Proximity to those who care about us actually changes our brain chemistry, slamming the brakes on the brain’s runaway stress circuits.

Trap 7: Mulling Things Over

mulling

When we’re depressed or anxious, we’re prone to dwelling at length on negative thoughts – rehashing themes of rejection, loss, failure, and threat, often for hours on end. Such rumination on negative thoughts is a major trigger for depression – and taking steps to avoid rumination has proven to be highly effective against depression.

How can you avoid rumination? Redirect attention away from your thoughts and toward interaction with others, or shift your focus to an absorbing activity. Alternatively, spend 10 minutes writing down the troubling thoughts, as a prelude to walking away from them.

Trap 8: Running with the Wrong Crowd

bad person

Scientists have discovered that moods are highly contagious: we “catch” them from the people around us, the result of specialized mirror neurons in the brain. If you’re feeling blue, spending time with upbeat, optimistic people might help you “light up” your brain’s positive emotion circuits.

Trap 9: Eating Sugar and Simple Carbs

sugar donuts

Researchers now know that a depressed brain is an inflamed brain. And what we eat largely determines our level of inflammation. Sugar and simple carbs are highly inflammatory: they’re best consumed sparingly, if at all.

In contrast, colorful fruits and veggies are chockablock with natural antioxidants. fruit and veggie plateEating them can protect the body’s omega-3s, providing yet another nice antidepressant boost.

Trap 10: Failing to Get Help

hopelessness

Depression can be a life-threatening illness, and it’s not one you should try to “tough out” or battle on your own. People experiencing depression can benefit from the guidance of a trained behavior therapist to help them put into action depression-fighting strategies like exercise, sunlight exposure, omega-3 supplementation, anti-ruminative activity, enhanced social connection, and healthy sleep habits.

We hope this blog has helped.  If you feel depressed or even if you are not sure talk to your transplant coordinator or any mental health professional. There is help. You don’t have to feel the way you do.

                                                                    

Bob informal 3

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. JAgain, write to me and ask for “Life Pass It On.”  I will email it to you immediately.  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  also send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and I will send the show and book ASAP.

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  (OTI).  The more members we get the greater our clout with decision makers.

En Espanol

Bob Aronson de Newheart de Bob es un centro receptor de trasplante 2007, el fundador de la Iniciativa de Facebook cerca de 3.000 miembros de trasplantes de órganos y el autor de la mayoría de estos blogs de donación / trasplante.

Usted puede dejar un comentario en el espacio proporcionado o por correo electrónico a sus pensamientos a mí en bob@baronson.org. Y – por favor difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si se convence a una persona para ser un donante de órganos y tejidos puede salvar o positivamente afectará a más de 60 vidas. Algunas de esas vidas puede haber gente que conoces y amas.

Por favor, vea nuestro video musical “Dawn Anita The Gift of Life” en YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

Si quieres correr la voz personal sobre la donación de órganos, tenemos otra presentación de PowerPoint para su uso gratuito y sin permiso. JAgain, escribir a mí y pedir “Life Pass It On.” Voy a enviar por correo electrónico a usted inmediatamente Esto no es un espectáculo independiente,. Necesita un presentador, pero es producido profesionalmente y objetivamente sonido Si usted decide utilizar el archivo. demuestro que también le enviará una copia gratuita de mi libro electrónico, Cómo obtener un Standing” O “que le ayudará con habilidades de presentación. Sólo escribo bob@baronson.org y enviaré el programa y el libro lo antes posible.

Además … hay más información sobre este sitio de blogs de otros temas de donación / trasplante. Además, nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos (OTI). Cuantos más miembros que tienen la mayor influencia en nuestra toma de decisiones.

The Purrrfect Anti-Depressants — Furry Friends


puppy loves earsNothing can bring a warm fuzzy feeling to ones heart more quickly than to be awakened from a nap by a wet puppy nose nuzzling your ear or the purring of a feline friend as it glides whisper quiet and ghostly smooth to its favorite spot next to you. girl withcat Animals are amazing creatures, especially those with which we choose to live, to share our lives, cares, experiences, sorrows and victories.

Whatever your preference, whether Alaskan Husky or a calico cat a goat there is something very special about these creatures.  I often will look into the eyes of one of our two dogs and ask, “Who’s in there?  Who are you and why are you so intent on making me happy?”

You see I really believe that someone is in there.  That someone may not be in the form of people we know with human intelligence but rather a soul, a presence a certain goodness that keeps on giving and giving and giving.  However you might describe the inner presence of your favorite animal it is the essence of devotion and friendship and ultimately — love.

It has often been said that when you are down, feeling low and depressed that you should talk about it.  Good advice, but sometimes people aren’t the right listeners.  They will often interrupt, offer advice, get distracted or sometimes even tell you to, “Get over it.”  Your dog or cat will never do any of those things. They will patiently listen as long as you want to talk while looking at you with understanding and compassionate eyes…eyes that make you believe there is someone in there.

This blog is unlike any I’ve ever written.  Mostly I write about medical issues related to organ donation and transplantation.  Rarely do I write about the psychological support we all need whether or not we are transplant patients, recipients, donors, donor families or caregivers.  So today I enter that realm, the realm of animals and how they help us live, give us comfort and pleasure and make our worlds so much better.

For several months following my 2007 heart transplant I suffered from depression.  I know not why I only know that much of my recovery from the affliction was due to our dogs, Reilly and Ziggy, aA soft coated Wheaten and a mini Schnauzer respectively.  As I reflected on that time I thought that perhaps your recovery from whatever it is you are recovering from might be enhanced by some animals.

Reilly and Ziggy.  The Aronson Pups

Reilly and Ziggy posing for camera

“We are just too cute to resist and we’re not even trying yet.”

Today’s post is images and the feelings they generate within you.    I hope these pictures, captions and this blog bring you at least a few moments of joy and warmth and good memories.   Please share it with anyone you choose.  No permission needed.

28

“Don’t ask…just help me down….please?”

 

14

I found it, I love it, it’s mine. What is it?


19

“Cute gets treats…be cuter”

2

I’m a dog. This is what I do best.

87

I’m Ziggy, man’s best friend. Who are you?

84

Darn people are always under foot!

61

“Oh boy…I think he’s going to get all mushy on me”.

92

“What do you mean you can’t walk…I need to be walked”

64

“Oh my goodness, that person looks just like me”

sad dog cropped

“Of course I did it but do you really think you can be mad at me?”

86

“We are cats. There is nothing more divine than to be a cat”

“They put a suit on me because I look like Albert who?”

76

“The are so rich they got a dog to walk us.”

36

“I dunno…I woke up and there they were”

Reilly boosts Charmin sales

“No really, it was like this when I walked in?

82

“Weird…they hit ’em with a stick and then chase ’em and hit ’em again. They they get angry throw the balls and clubs and go home, They say it’s a fun game. I think Tug O’war is fun.”

cat pushes dog

“This gig better pay well because it looks stupid”

85

“As soon as they take this picture I’m chasing you out of the house again!?

ziggy half in half out of basket “I am not getting out….I’m slowly backing in”

73

“They call us dumb animals and then they invent a drinking fountain that hits everything but your mouth”

63

“Wow, 101 Dalmations on big screen TV…Wow!

67

They are so funny…they clean our litter box but think they are in charge…ha ha ha ha”

 

We hope these few pictures helped make your day a little brighter.  Let us know what you think and if you really liked this we may do it again sometime.

Bob’s Newheart encourages readers to comment on each of our blogs and to add resources that they find in their own searches. 

 

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our new music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

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

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

En Espanol

Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en bob@baronson.org. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.

Por favor, consulte nuestro nuevo video musical “Dawn Anita The Gift of Life” en https://www.youtube.com/watch?v=eYFFJoHJwHs YouTube. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a bob@baronson.org y por lo general usted recibirá una copia del mismo día.

Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.

Post-Transplant Depression — What It Is and What To Do.


This is a compilation of information from various sources.  It does not constitute medical advice.  Please consult your physician about your condition and base your treatment decision on his or her advice, not on what you read here.

Post-transplant depression is real.  There are no statistics of which I am aware that indicate the percentage of organ recipients that suffer from the malady but there are enough reports of the problem to suggest it is no small number.

The extent to which your emotional health is affected by a transplant depends on a complex interplay of your health status and personality, genetic factors, social support, financial situation, and other concerns.

For most people, emotions about their experience change and evolve over time. Typically, feelings of sadness or anxiety are transient. For some, however, these feelings may persist and interfere with daily life.

According to the Mayo Clinic Depression is more than just a bout of the blues.  It isn’t a weakness, nor is it something that you can simply “snap out” of. Depression is a chronic illness that usually requires long-term treatment, like diabetes or high blood pressure. http://www.mayoclinic.com/health/depression/DS00175

Depression is a complex disease and sometimes it is difficult if not impossible to find a reason for the problem.  One that I hear most often is guilt.  Some recipients feel guilt because, they say, someone had to die in order for them to live. Others feel guilt because they are doing well while other transplant recipients may not be so fortunate.  Those feelings sometimes proves to be a very heavy burden for many transplant recipients but it may be only one potential cause of their feelings. There are some other factors that may contribute to post transplant depression as well:

  • Anger or depression, because they don’t feel better as soon as they expected.
  • Frustration, because of chronic or lingering fatigue that keeps them from things they want to do or accomplish.
  • Mood changes caused by the drugs that must be taken following a transplant.
  • Dissatisfaction with old plans and goals. Identifying new priorities and making lifestyle changes may feel good, but can also be stressful.
  • Fear that the old illness might return and affect the new organ

Symptoms of depression include:

  • Persistent sad, anxious, or “empty” feelings
  • Feelings of hopelessness or pessimism
  • Feelings of guilt, worthlessness, or helplessness
  • Irritability, restlessness
  • Loss of interest in activities or hobbies once pleasurable, including sex
  • Fatigue and decreased energy
  • Difficulty concentrating, remembering details, and making decisions
  • Insomnia, early-morning wakefulness, or excessive sleeping
  • Overeating, or appetite loss
  • Thoughts of suicide, suicide attempts
  • Aches or pains, headaches, cramps, or digestive problems that do not ease even with treatment.

Despite the feelings of gloom and doom, though, there is reason to be optimistic because most people with depression will eventually  feel better with medication, psychological counseling or other treatment.

Still another reason for post-transplant depression is Post Traumatic Stress Disorder (PTSD).  Post-traumatic stress disorder is a type of anxiety disorder. It can occur after you’ve seen or experienced a traumatic event that involved the threat of injury or death.  Obviously getting an organ transplant falls into that definition. http://health.nytimes.com/health/guides/disease/post-traumatic-stress-disorder/overview.html

Symptoms of PTSD fall into three main categories:

1. “Reliving” the event, which upsets day-to-day activity

  • Flashback episodes, where you re-live the event so it seems to be happening again and again
  • Repeated traumatic memories of the event
  • Frequent nightmares of the event
  • Strong, uncomfortable reactions to reminders of the situation

2. Avoidance

  • Emotional “numbing,” or feeling as though you don’t care about anything
  • Feeling detached
  • Being unable to remember important aspects of the trauma
  • Lack of interest in normal activities
  • Hiding your moods
  • Avoiding places, people, thoughts or things that remind you of the trauma
  • Feeling as though you have no future

3. Arousal

  • Difficulty concentrating
  • Startling easily
  • An exaggerated response to things that startle you
  • Feeling more aware of negative things
  • Irritability and angry outbursts
  • Difficulty falling or staying asleep

If you have severe depression, a doctor, loved one or guardian may need to guide your care until you’re well enough to participate in decision making. You may need a hospital stay, or you may need to participate in an outpatient treatment program until your symptoms improve. http://www.mayoclinic.com/health/depression/DS00175/DSECTION=treatments-and-drugs

Here’s a closer look at your depression treatment options.

Medications
A number of antidepressant medications are available to treat depression. There are several different types of antidepressants. Antidepressants are generally categorized by how they affect the naturally occurring chemicals in your brain to change your mood. You can view the entire section on medications by following the above link to the Mayo clinic.

Types of antidepressants include:

  • Selective serotonin reuptake inhibitors (SSRIs). These medications are safer and generally cause fewer bothersome side effects than do other types of antidepressants. SSRIs include fluoxetine (Prozac), paroxetine (Paxil), sertraline (Zoloft), citalopram (Celexa) and escitalopram (Lexapro). The most common side effects include decreased sexual desire and delayed orgasm.
  • Serotonin and norepinephrine reuptake inhibitors (SNRIs). These medications include duloxetine (Cymbalta), venlafaxine (Effexor XR) and desvenlafaxine (Pristiq). Side effects are similar to those caused by SSRIs.
  • Norepinephrine and dopamine reuptake inhibitors (NDRIs). Bupropion (Wellbutrin) falls into this category. It’s one of the few antidepressants that doesn’t cause sexual side effects.
  • Atypical antidepressants. These medications are called atypical because they don’t fit neatly into another antidepressant category. They include trazodone (Oleptro) and mirtazapine (Remeron). Both of these antidepressants are sedating and are usually taken in the evening. In some cases, one of these medications is added to other antidepressants to help with sleep. The newest medication in this class of drugs is vilazodone (Viibryd).
  • Tricyclic antidepressants. These antidepressants have been used for years and are generally as effective as newer medications. But because they tend to have more numerous and more-severe side effects, a tricyclic antidepressant generally isn’t prescribed unless you’ve tried an SSRI first without an improvement in your depression.
  • Monoamine oxidase inhibitors (MAOIs). MAOIs — such as tranylcypromine (Parnate) and phenelzine (Nardil) — are usually prescribed as a last resort, when other medications haven’t worked. That’s because MAOIs can have serious harmful side effects. They require a strict diet because of dangerous (or even deadly) interactions with foods, such as certain cheeses, pickles and wines, and some medications including decongestants. Selegiline (Emsam) is a newer MAOI that you stick on your skin as a patch rather than swallowing. It may cause fewer side effects than other MAOIs.
  • Other medication strategies. Your doctor may suggest other medications to treat your depression. These may include stimulants, mood-stabilizing medications, anti-anxiety medications or antipsychotic medications. In some cases, your doctor may recommend combining two or more antidepressants or other medications for better effect. This strategy is known as augmentation.

Finding the right medication
everyone’s different, so finding the right medication or medications for you will likely take some trial and error. This requires patience, as some medications need eight weeks or longer to take full effect and for side effects to ease as your body adjusts. If you have bothersome side effects, don’t stop taking an antidepressant without talking to your doctor first.

Antidepressants and pregnancy
If you’re pregnant or breast-feeding, some antidepressants may pose an increased health risk to your unborn child or nursing child. Talk to your doctor if you become pregnant or are planning on becoming pregnant.

Antidepressants and increased suicide risk
Although most antidepressants are generally safe, be careful when taking them. The Food and Drug Administration (FDA) now requires that all antidepressant medications carry black box warnings. These are the strictest warnings that the FDA can issue for prescription medications.

The antidepressant warnings note that in some cases, children, adolescents and young adults under 25 may have an increase in suicidal thoughts or behavior when taking antidepressants, especially in the first few weeks after starting an antidepressant or when the dose is changed. Because of this risk, people in these age groups must be closely monitored by loved ones, caregivers and health care providers while taking antidepressants. If you — or someone you know — have suicidal thoughts when taking an antidepressant, immediately contact your doctor or get emergency help.

Psychotherapy
Psychological counseling is another key depression treatment. Psychotherapy is a general term for a way of treating depression by talking about your condition and related issues with a mental health provider.

Through these talk sessions, you learn about the causes of depression so that you can better understand it. You also learn how to identify and make changes in unhealthy behavior or thoughts, explore relationships and experiences, find better ways to cope and solve problems, and set realistic goals for your life.

Hospitalization and residential treatment programs
In some people, depression is so severe that a hospital stay is needed. Inpatient hospitalization may be necessary if you aren’t able to care for yourself properly or when you’re in immediate danger of harming yourself or someone else. Getting psychiatric treatment at a hospital can help keep you calm and safe until your mood improves.

In this blog we have attempted to give you an overview of depression and its causes along with known effective treatment options.  Please remember, this is only a blog, it is not medical advice and we strongly suggest that you take no action based on what you read here.  See a qualified physician, ask a lot of questions and then make a decision.

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

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

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

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

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

“His” Heart, My Life, My Story


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

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

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

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

UNOS CEO: Study Could Redefine “Medically Suitable” Donors


On August 11, I sent a letter to Walter Graham, CEO of the United Network for Organ Sharing (UNOS) asking what UNOS was doing or was going to do to increase the supply of organs. My letter noted that the number of transplants performed each year has plateaued at about 28,000 while the number of people on the list continues to grow.  Today there are 114,899 people waiting and so far this year there have been 11,469 transplants from 5,677 donors.   As you can see, the gap continues to widen.  With only four months left this year we may fall far short of the 28,000 number.

Below you will first find my letter to Mr. Graham, followed by his response.  You can decide if he responded to my concerns and most importantly, your concerns about how our national donation/transplantation system is managed.

August 11,2012

Walter Graham

Chief Executive Officer

United Network For Organ Sharing

Richmond, Virginia

Dear Mr. Graham:

You might remember me as a Minneapolis, Minnesota based communications consultant that worked with UNOS in the 90’s.  During that period I was diagnosed with dilated cardiomyopathy and subsequently had a heart transplant at the Mayo clinic in Jacksonville, Florida in August of 2007.

I am writing not as a former consultant but rather as a very grateful heart transplant recipient, founder of Facebook’s nearly 2500 member Organ Transplant Initiative (OTI), author of over 120 blogs on donation/transplantation issues (www.bobsnewheart.wordpress.com)  where we have 100,000 readers and writer/producer of three videos on organ donation. I am a very active advocate for organ donation and have been for many years.

I’ll get right to the point.  I have a growing concern about the Inability of the altruistic system to meet the demands for organ transplants and UNOS’ reluctance to make or even recommend significant changes to the system.

I am quite aware of all the ethical and other arguments forwarded by UNOS for rejecting changes that would include presumed consent and donor incentives/compensation among others.  I am puzzled as to how UNOS can find these suggestions unethical or unworkable but has made no statement about the ethics of allowing people to die due to the failure of the altruistic system to generate enough transplantable organs.  How can it be ethical to allow an inadequate system to prevail?

Having been on that list I have first-hand experience with the depression that accompanies it, knowing that the government contractor that is funded with my tax dollars is doing little beyond promoting altruism to significantly increase the number of available organs.  It is discouraging and depressing for those on the list to continually hear that every option other than altruism is either unethical or unworkable.

I am hoping that you can offer some hope that I can pass on to members and other interested parties that the gap not only is closing but will close and soon.  Please offer some explanation other than renewed efforts at increasing altruism of just what UNOS is doing and will do to help those who are languishing on an ever growing list of people who need transplants.  Please prove me wrong.  I would be most grateful to see clear, compelling evidence that the altruistic system can work and is working.

It is almost 30 years since the National Organ Transplant Act (NOTA) was implemented..  I think that is plenty of time to determine if a system works.  Unless you can prove otherwise, It seems clear that with 114,000 people listed and only about 28,000 transplants done every year despite intense and noble efforts at increasing donation rates, altruism alone cannot meet the demand – ever.  .

Please respond as soon as possible.  I plan to publish my letter to you and your response side by side.

Thank you for your consideration and time

Bob Aronson

Return letter from Walter Graham

Received on August 22, 2012

Dear Bob:

Thank you for your letter, and yes, we remember your valuable contributions to us as a consultant in the 1990s.  We are glad you continue to do well with your transplant and engage the public in this vital cause.

Your concern regarding the shortage between available donors and the needs of waiting candidates is widely shared.  Our ultimate goal and fondest hope is to be able to provide transplants for all candidates in need, to prevent deaths and needless suffering while waiting.

As you may recall from your work with us, the primary mandate of UNOS as operator of the national Organ Procurement and Transplantation Network (OPTN) is to allocate organs from deceased donors equitably among transplant candidates.  Other significant roles, as specified in federal law and regulation, including maintaining a clinical database on all donors, candidates and recipients; monitoring compliance with OPTN policies; and investigating donation- or transplant-related issues that may pose a risk to the health and safety of transplant patients, living donors or the public.

Promoting organ donation is interwoven among all of our responsibilities, and transplantation depends entirely on the public’s willingness to donate.  That said, managing the organ donation system is not a fundamental mandate that federal law or regulation has assigned to us.  Our essential responsibility is to make sure that available organs are used in the most responsible and effective way possible.

State and federal law governs the process of donation in the United States.  Any change to the current voluntary nature of donation, whether that would involve preferred consent, financial incentives, preferred status or other means, would involve a public initiative to amend the law.  UNOS, as a corporation, has declared its support of careful study of potential incentives, financial or non-financial, that would encourage donation while respecting individuals’ freedom of choice.  Such study may involve legislative efforts to suspend the law to allow examination of the results.  As a federal contractor for the OPTN, UNOS cannot develop policies not supported by the law or expend limited resources lobbying for legislative changes beyond the OPTN’s mandate.

One of the fundamental questions UNOS is seeking to answer has to do with the potential number of persons who could qualify for deceased organ recovery.  Our Center for Transplant System Excellence is conducting a Deceased Donor Potential Study. This study will identify the total number of medical cases in which persons could be deceased organ donors regardless of issues of consent. The results of this study will provide a better understanding of what is possible. The merits of whether a system based on altruism is the best approach could then be understood in the context of what is possible. It may well be that the number of medically suitable cases as currently defined is not adequate in any circumstance.

Many people are convinced that the delicate nature of donation may be adversely affected by negative connotations or perceptions generated by controversy over debates about changes to the underlying legal system such as presumed consent. That being the case, it is prudent to pursue the DDP Study to learn what the potential might be before considering whether to advocate for a fundamental change.

Among key strategic goals for the OPTN are increasing the number of transplants performed and optimizing post-transplant survival.  Even with the current supply of donated organs, we can increase utilization of organs and enhance survival by better matching available organs with candidates who are the best long-term match.  In promoting organ donation, we actively support efforts such as those of Donate Life America, which has recently announced more than 100 million Americans have formally registered their wish to donate organs and tissues and has set an ambitious goal of 20 million new donor commitments this year.

We all agree a higher rate of donation is essential to save lives and relieve suffering of men, women and children anxiously awaiting an organ transplant.  UNOS and the OPTN are dedicated to helping save and enhance lives through organ allocation.  Whether society may be ready to adopt a new model for the process of organ donation is an important discussion that would involve society as a whole and active support of state and national lawmakers.

Walter Graham

CEO

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

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

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

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

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

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