Category Archives: Inspirational stories

Attitude and Health. The Power Of Positive Thinking


“Strength does not come from physical capacity. It comes from an indomitable will.” – Mahatma Gandhi

 

Introduction by Bob Aronson

 

Dawn Anita Plumlee is family. I am proud to say she is not only a member of my personal family, but also my larger extended one, the Organ Donation family. She and her sister, Dr. Priscilla Diffic-Couch are frequent contributors here.

 

Dawn Anita has never had an organ transplant and likely won’t need one, nor has anyone in her immediate family, but she is as committed to our cause as any one of us who has either given or received a life-saving organ.

 

Dawn Anita and her husband Jerry have met adversity up close and personal, slapped it in the face, shoved it aside and forged ahead. They are two of the most positive people I know and share our passion for saving lives.

 

In a song, Kenny Rogers advised us to, “Know when to hold em, and Know when to fold em…” Dawn Anita knows and she ain’t likely to “Fold em” any time soon. 

 

This inspirational story is true. Dawn Anita Credits her many successes to attitude and the power of positive thinking. This is her account of just one of those journeys. 

 

crazy people

The Power Of Positive Thinking

By Dawn Anita Plumlee

 

Lying in my hospital bed staring into the darkness while listening to the gloomy sounds that ring out in a hospital in the middle of the night…. buzzers beeping, patients calling for help and the sound of nurses’ footsteps scurrying down the hall, I was trying hard to wash the negative thoughts from my mind. I glanced over at my dear devoted husband Jerry sound asleep in the hospital chair beside my bed. His body was twisted, cramcowboy asleep in chairped and confined. He looked very uncomfortable. I smiled when I saw that he hadn’t bothered to take off his cowboy boots. One toe was pointing to the ceiling and the other was pointing towards the wall. Soft, intermittent snoring sounds filled the air. Warm thoughts flooded my mind knowing he would go to the ends of the earth and back for me. I knew he was worried, and it was difficult for me to comprehend that I was here waiting for a blood transfusion. I closed my eyes and my thoughts drifted back in time to the events that had taken place over the past few months.

 

It was 2013. I turned 71 on my birthday, but in my heart I felt more like I was 51. Life had treated me good those 71 years, Dawn anitaI had a wonderful husband of 55 years, two beautiful children, seven terrific grandchildren, and three precious great-grandchildren. My health was excellent. I had never had any major illness and was not taking any kind of medication. I was retired and enjoyed the time I spent working on our small ranch, riding horses, taking care of cattle, and helping with the everyday chores that occur on a ranch. I was still active in music, writing songs, recording and singing and was preparing to enter the Miss Senior Oklahoma Pageant for the second time.

 

I thought of all the hours Jerry and I had spent over the last few years clearing timber behind our house. The work was hard, dusty and dirty, and it seemed to be a never-ending chore, picking up stumps, trimming trees, and burning brush piles, driving the tractor disking and harrowing preparing the ground for planting grass. It was exhausting work and my energy level seemed to drain quickly, sometimes struggling to even catch my breath but never admitting to myself that anything was wrong.

 

My husband and I were taking our early morning walk when I suddenly stopped and exclaimed to him, “I can’t seem to walk and talk at the same time without running out of breath.” I thought to myself, “Boy, I have really let myself get out of shape,” so I began walking faster and longer. My stamina and ability to walk and talk without running out of breath did not seem to be improving.

 

Not wanting to admit anything could be wrong with my health, I dismissed the fact that I had suddenly dropped ten pounds, I experienced nausea nearly every day, my urine was a dark color, abp croppednd I was constantly fatigued. My blood pressure regularly registered extremely low, and I knew something with my body wasn’t 100%, but I would not allow myself to be overly concerned. After all I was tough. I was a great believer in the power of positive thinking, so I was optimistic and believed strongly that I would be able to overcome any problems that I was having.

 

I had chosen to perform an Elvis medley for my talent in the Miss Senior Oklahoma Pageant. The songs were upbeat, and it was my nature to put everything into each of my performances moving energetically on stage. During rehearsals I noticed I could not move as I normally did without becoming winded. I would have to bend over and breathe deeply in order to continue. The night of my actual performance, I gave it my all, but when I watched my performance on video, I was very disappointed. I knew I was subconsciously protecting myself during my performance in order to make it through the medley.

 

Dialing the phone, I felt weak and a wave of nausea hit me. Our daughter “Punkin” answered the phone and said anxiously, “What is it Mom?” I didn’t want to worry her. This was a very special occasion. Her daughter Rachel (our granddaughter) was getting married and the reception dinner was this evening. Fighting to hold back tears, I said, “Punkin, I’m not feeling very good, and I am so sorry, but Dad and I cannot make it to Rachel’s reception dinner, but we will definitely be at her wedding tomorrow.” Concerned, Punkin said, “Mom, are you okay?” Bravely, I replied, “Oh, I’m sure I’ll be fine by tomorrow. Tell Rachel we’re sorry, and we’ll see her at the wedding.”

 

My dad died at the age of 80 with congestive heart failure. Since I was experiencing shortness of breath, I was fearful that I might be having heart trouble, and I knew I had to find a primary care doctor. The first thing the doctor did was routinely complete blood work. They drew my blood on Tuesday. On Wedbloodworknesday I received a call from the doctor’s office saying they needed to draw some more blood. I went in on Thursday morning and gave some additional blood not really thinking much about it.

 

Late that afternoon I was helping my husband Jerry unload a truckload of sod to put on the lawn. Each time I grabbed a roll of sod and placed it on the lawn, I would have to bend over and catch my breath a minute before continuing. Pulling some sod off the truck, I noticed the farrier had arrived to shoe our horses. Jerry told me to go help him, and he would finish putting the sod on the lawn. Relieved, I happily went out to catch the horses for the farrier. I was surprised when I saw Jerry walking out to the barn motioning for me to come to him. He said, “Dawn Anita, the doctor’s office called five times and left word for you to call right away.” Knowing it was past 5:00, I said, “They’ll be closed now, I’ll call in the morning,” to which Jerry replied, “No, go call them now.”

 

Dialing the number, I thought to myself, “I wonder what they could possibly want?” As I had predicted, their office was closed, so I left a message. In less than thirty seconds the phone rang. It was the nurse from the doctor’s office. A little too urgently she said, “Mrs. Plumlee, you need to get to the emergency room emergencyright away.” Confused, I asked, “What’s the problem?” to which she replied, “You have severe anemia and we have alerted ER that you are on your way.” I thought to myself, “Anemia, that doesn’t sound that urgent.” I asked, “Can’t this wait until tomorrow? Am I going to die tonight or what?” Jerry grabbed the phone and said, “Quit arguing with her, we’re going to the hospital right now.”

 

The waiting room at the ER was full when we arrived. Thinking I was in for a long wait, I walked to the front desk and gave them my name. The receptionist jumped up, motioned me through the door, quickly looked at my ID and medical cards and sent me back to a room. In less than five minutes, the doctor was there. Jokingly, I said, “Hey, Doc, my insurance must really pay good for you to get here so quick.” I realize now I was using humor to hide my fear of what was happening.

 

The doctor informed me that my hemoglobin count (HGB) was 5doc tells anita.4, which was less than half of what it should be. That was a little alarming, but I didn’t realize just how serious it was. The doctor then asked “Mrs. Plumlee have you been bleeding anywhere?” and I responded, “Not that I’m aware of.” I guess he didn’t believe me, because he proceeded to perform a couple of rather unpleasant tests. A portable x-ray machine was wheeled into the room for x-rays of my chest, and the hospital ran several tests on my blood. The doctor ruled out cancer and indicated further testing would need to be done. I heard him say to the nurse “This might turn into a difficult case,” and he then told me he had ordered three units of blood. I was doing my best to be positive, but fear started creeping up my spine and my heart started beating faster; it felt like I couldn’t breathe.

 

And that’s how I ended up in the hospital waiting for a blood transfusion. My sister Priscilla called several times to see if they had given me the transfusion yet. I thought how nice it was of her to be so worried about me. I have to admit, I was more than a little worried myself, but if I had known what she knew, I would have been frantic. Most people with HGB as low as mine are not up and walking around. The organs begin to shut down, you’re a likely candidate for a heart attack, and it is not unusual for someone to lapse into a coma. Around 7:00 the next morning, the nurses changed shifts, and a new nurse came into my room. With a surprised look she said, “Oh, you’re awake.” I replied, “Oh yes, I’ve been awake most of the night,” not realizing that she had checked my stats before coming into my room, and she fully expected me to be in a coma.

 

Apparently the blood bank was having difficulty finding a match due to the antibodies in my blood. After 12 hours, I finallyunites of blood received three units. They tested it again after the transfusions, and my HGB had risen 4.2 points…thank goodness! My doctor came by before I was released, gave me some Prednisone and handed me a prescription. She told me that by tomorrow I should be feeling much better. She said she had referred my case to an oncologist/hematologist at the Cancer Center, and they would be calling me in a few days to set an appointment.

 

The next morning, I kept thinking, “The doctor said I should feel better today, but I have this strange sensation running through my veins.” I told Jerry I needed to lie down for a while. When I awoke, I heard voices in the kitchen and realized Jerry was talking to our son, Jerry Don. When I walked into the kitchen, tears were running down Jerry’s cheeks, and with a heavy voice, he said, “I thought I lost you because you always wake up when the phone rings, but you didn’t wake up, so I called Jerry Don.” I threw my arms around his neck and said, “I’m not going anywhere. I can beat this; I have lots of other things I need to do before I go anywhere.” He held me in his arms for a long time and softly whispered, “I love you more than you’ll ever know.”

 

cancer centerWalking into the Cancer Center, I glanced around at the people in the waiting room. There was one older gentleman sitting crumpled over in a wheel chair, a lady with no hair sitting on a couch, breathing through an oxygen tube, and a frail looking older couple sitting quietly holding hands. I thought to myself, “I don’t belong here; these people are really sick.” The nurse drew my blood and sent me to another room to see the doctor. After that visit, I was at the reception desk making another appointment when the doctor suddenly appeared holding a slip of paper.

 

With a wide smile, he said, “Here are your results.” My HGB reading was 11.4, and I thought “Hallelujah!” I started jumping up and down clapping my hands with joy. Ever so gently the doctor reached out took my hand and hugged my neck.

 

My diagnosis was hemolytic anemia, and the hematologist was trying hard to determine what was causing the anemia. Over the next several months, he ran what I thought must have been every blood test that existed which included HIV and Hepatitis C and B. Every test was negative. He performed a bone marrow test, which also came back negative. Every time I went in for yet another test, I would experience small panic attacks. “What if my HGB has gone down; why can’t they find out what’s wrong?”

 

Since the blood tests revealed nothing that indicated the source of my anemia, my doctor ordered a CT scan of my chest. Picking up the results of the test to take to the pulmonologist, the words on the report jumped out at me, “Multiple findings in the chest mac lunghighly suspicious for atypical infection mainly mycobacterium avium complex (Mac Lung Disease) which can have an identical appearance as tuberculosis.” Deep inside I knew. I had Mac Lung Disease.

 

The pulmonologist did a bronchoscopy and washed my lungs out with saline. It would take several weeks for the cultures to grow before I would know the test results. The nurse called each time a test result was received, and so far they were all negative. When she called to say the doctor needed to see me, she didn’t have to tell me the results, I knew.

 

Sitting on the examination table waiting for the pulmonologist, I was trying my best to remain calm. The doctor’s voice seemed to be far off in the distance as he told me I had Mac Lung Disease. I felt like I was outside of myself listening to him, all the while thinking, “This can’t be happening to me.” He told me I needed to start taking 3 antibiotics a day for a period of 18 months; the mantibioticsedication could affect my liver and kidneys, and two of them could cause color blindness and blurred vision. In a state of confusion, I asked, “How did I get this?”

 

He replied, “You can get it from the ground, the water and the air,” and then it dawned on me…. all the hours I had spent picking up stumps, trimming trees, driving the tractor with no cab, being constantly exposed to all that dirt and dust. I had compromised my immune system and now I have this disease (MAC lung disease is not spread by person to person contact and is not considered to be contagious. It is a fairly rare disease with fewer than one person in 10,000 becoming sick from it).

 

I was not prepared to commit to taking the antibiotics. In a state of shock, I went home and started frantically searching the Internet for natural remedies. I tried quite a few of them over a period of several months. None of them worked. My hemoglobin dropped drastically again, and I went back to see the pulmonologist. With tears rolling down my cheeks, I could barely utter the words, “I’m afraid to take the antibiotics. Is there anything else I can do?” I could see the compassion in his eyes when he said, “I think I need to make you an appointment with an infectious disease doctor for a second opinion.”

 

The infectious disease doctor could not believe I had Mac Lung Disease. I had no symptoms associated with the disease, and he informed me that hemolytic anemia was not common with Mac Lung Disease. He stated he had HIV patients whose hemoglobin was not as low as mine. He thought they must have made a mistake on the reading, and he made the comment; “There is no way you could have been walking around with a reading that low. That would be like driving 100 miles in a car with no gas in the tank.” I told him my doctor and the hospital ran the test twice, and they both came up with the same results. He made the comment, “If I didn’t have your test results in front of me, I would not believe you have the disease.” For that reason, we decided to wait and see if I displayed any symptoms before starting the medication.

 

Once again, my hemoglobin plunged to an unsafe level. I spent many slow hemoglobinleepless nights worrying about what I should do. If I didn’t take the antibiotics I could die, but if I did take them, I could be deathly ill for months from the effects of the medication or even lose my eyesight, and I would have no quality of life at all. Neither my hematologist nor my infectious disease doctor could definitely say that my anemia was caused from Mac Lung Disease, and they could not assure me that the antibiotics would cure my anemia.

 

I turned to my loved ones hoping they could help me make a decision. They were all concerned and wanted to help, but in the end, I knew it must be my decision. I thought about the terrible side effects of the antibiotics and the scary results reported by folks who had taken the antibiotics. Needless to say, I was apprehensive about how the medication would affect me. Finally, it came to me. Start thinking positive. After all, hope and positive thinking are the strongest medicines of all. I told myself I would not be one of the people who experienced any of the side effects, and I started taking the antibiotics. The infectious disease doctor prescribed two antibiotics to be taken twice daily for a period of two years. I have been taking them for 16 months. Within four months, my hemoglobin vastly improved without having to take Prednisone. I can’t know for sure what the future holds, whether my anemia will return when I stop the antibiotics, but I try to live my life to the fullest and fill every day with joy and laughter.

 

As I write this, I realize that my near death experience in no way compares to those of you who are struggling every day to overcome a serious illness such as cancer or heart disease or those of you who are on the transplant list waiting for a life-saving organ that can prolong your life. I bow my head to all of you brave people and recognize that the human spirit is strong and hope springs eternal. My thoughts and prayers go out to each of you, and if the words in my story brighten your day in some small way or inspire you to keep fighting and not give up hope, then I will have accomplished my mission in writing this story.

 

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Editor’s note from Bob Aronson. Dawn Anita is my Wife Robin’s cousin. I have known her for about 15 years and she is an amazing woman. Not only is she one of America’s great country singers, her nearly boundless energy has benefited many. She has freely donated her time and talent to many worthwhile causes and is a longtime member of Organ Transplant Initiative and a frequent contributor to Bob’s Newheart Blogs.

 

All of us in the donation/transplantation community have benefited from her compassion and generosity. In 2013 she wrote, produced, directed and paid all costs for her Nashville, Tennessee recording of “The Gift Of Life.” She then donated the song to our Facebook group Organ Transplant Initiative to use as we see fit to promote organ donation. You can see the video here:

 

http://www.youtube.com/watch?v=eYFFJoHJwHs&feature=youtu.be

 

Dawn Anita’s story is inspirational because of her spirit. She just refuses to lose faith and to give in to adversity. As a performer she is the consummate professional. When she hits that very first note, Dawn Anita has captured the audience. I am proud to call her “Cousin” and friend. Thank you Dawn Anita and Jerry, you are wonderful examples of the American Spirit and of my favorite sentiment — “Never Give up.”

 

 

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From a Medical Nightmare to a New Life –The Curt Green Story


curt greenIntroduction by Bob Aronson

Story by Curt Green

 inspirational quoteIntroduction

This is the first in a series of blogs about people with the Helen Keller, Jesse Owens spirit.  Let me explain.  Some people inspire us to soar to great heights because they did.  Some people see adversity as a speed bump and confidently roll over it.  Some people are “unsinkable” and bounce back no matter what.  This is the first in a series of blogs about ordinary people who do just that.

I was inspired to write these blogs by two of my personal heroes, Helen Keller and Jesse Owens.  If you are not familiar with these names here are some very brief bios.

Helen Keller

helen kellerHelen would not be bound by conditions. She became deaf and blind before she turned two as the result of scarlet fever.  She learned to read (in several languages) and even speak, eventually graduating with honors from Radcliffe College in 1904. It is remarkable that she accomplished any of this in an age when few women attended college and the disabled were often hidden and spoken of only in hushed tones.

 Keller’s many other achievements are impressive by any standard:

hellen Keller with President Eisenhower she authored 13 books, wrote countless articles, and devoted her life to social reform. She lectured on behalf of disabled people everywhere. She also helped start several foundations that continue to improve the lives of the deaf and blind around the world.  She is remembered for a great many pieces of wisdom but this is my personal favorite:

“Although the world is full of suffering, it is full also of the overcoming of it. My optimism, then, does not rest on the absence of evil, but on a glad belief in the preponderance of good and a willing effort always to cooperate with the good, that it may prevail.” – Helen Keller

Jesse Owens

Jesse owens runningJesse was an athlete, a black athlete and a very special one. His performance on a spring afternoon in 1936 was beyond unbelievable.  In 45 minutes, he established three world records and tied another, but what made the accomplishment special, extra special is that he did it in Nazi Germany before a regime of white supremacists.    

Jesse Owen’s story transcended athletics. Berlin, on the verge of World War II, was Jesse Owensbristling with Nazism, red-and-black swastikas were flying everywhere while Adolf Hitler was busy haranguing about the “unbeatable master race” of blond, blue eyed Aryans. 

When Owens finished competing, the African-American son of a sharecropper and the grandson of slaves had single-handedly crushed Hitler’s myth of Aryan supremacy.  On the sacred soil of the Nazi Fatherland he humiliated the so-called master race by winning four, count ‘em, four gold medals.  Hitler, left the stadium. 

I never met Helen Keller but I had the distinct pleasure and honor of meeting and interviewing Jesse Owens when I was a young radio announcer in 1961.  I got his autograph for my brother who treasures it to this day.  Owens lived by a very simple motto, “One chance is all you need!”

Our Keller/Owens courage series will focus on people, just ordinary people who have managed to survive and win under amazingly adverse circumstances

Curt Green.

Ocurt greenur first story is about Curt Green.  I met Curt as the result of a long and thoughtful comment he made about one of my Bob’s Newheart blogs.  His words  were insightful, compelling and inspirational.  Those same terms describe his story, one that truly is in the Keller/Owens spirit .

  

Whenever I find myself overwhelmed, depressed or in need of a motivational kick in the pants, I think about Curt’s incredible journey, his undying faith and his commitment to “Paying it forward.”

 Curt Green is a very special man and I am honored to call him a friend.  Thank you Curt for  taking the time to write your story.  It will serve to inspire others for a very long time.   

The Sandwich

In September of 2005 at age 44 I was working for Schwans as a route manager (The Schwan Food Company is a multi-billion dollar privately owned company with 15,000 employees.  They sell frozen foods from home delivery trucks, in grocery store freezers, by mail, and to the food service industry). My work days where long and it was usually after 11 P.M. when I got home feeling both tired and hungry.   On this particular evening I didn’t feel like cooking so before I went to bed I p b and j sandwichhad a plain old peanut butter and jelly sandwich.  While that may sound pretty bland and harmless it turned out to be anything, but. To say it didn’t’ sit well would be putting it mildly.  It wasn’t long after I ate it that something in that sandwich triggered a gall bladder attack.  Despite experiencing significant discomfort I managed to find my way to the Emergency Room in a Fairmont, Minnesota hospital.

On arrival they took X-rays and decided I needed care they could not provide so they wheeled me into an ambulance and sent me to the famed Mayo Clinic in Rochester, Minnesota.  The highway the ambulance used to get me to Rochester was not in good Mayo clinic Rochester, Minnesota gonda bldngcondition so the 120 mile ride which took about two hours was rough and uncomfortable. Finally, though, at 5 AM the next morning I was admitted to Mayo’s St. Mary’s hospital.

The Problem

The Mayo doctors wasted no time and after some tests to determine the severity of my condition and to locate the gall stones, they did an ERCP (Endoscopic retrograde cholangiopancreatography). ERCP is an x-ray exam of the bile ducts that is aided by a video endoscope which allows the physician to view the inside of the stomach and duodenum, and inject dyes that can be seen on x-rays.   The lighted probe that goes down your throat has a tiny claw at the end that allows them to open the passageway and let any gall stones pass.

Complications

It all seemed to go well but there was a complication.  The surgeons didn’t know until later that my intestine was punctured during the procedure and that’s where my long journey began — instead of a normal recovery from a routine surgery my condition worsened.  I spiked a fever and kept getting sicker, so sick that my kidneys shut down.  That’s when they had to take drastic measures to save my life.  What started as a simple gall stone attack had now turned into a life threatening situation.  I can only thank God I was at Mayo where they are well equipped to handle such an emergency.  It was going to be 207 days before I was released from the hospital.  That simple peanut butter and jelly sandwich changed my life and almost ended it.

In order to keep me comfortable yet treat me effectively and remove the infection physicians put me in a drug induced Patient in ICucoma which lasted 21 days into October.  While comatose they opened my abdominal cavity and washed out handfuls of dead, blackened fat. This procedure helps to ensure the removal of the infections, something they had to do seven times over the course of the month.  Naturally I remember none of it.  As part of my recovery the Mayo Doctors then placed me in a special bed that would rock me gently back and forth so that no fluids would settle in my body, but even with that extraordinary step my hands and head swelled to almost twice their normal size.

When I finally awakened I had over 12 tubes coming out of my stomach which were not only for drainage but also for feeding and other healing purposes.  In the middle of my stomach there was a very large 9 inch diameter hernia.  For three months I was unable to drink anything and could not eat for six months.

Studies indicate that being immobilized for long periods has a very negative effect.  It is estimated that we can lose 10 to 20 percent of our muscle strength per week in bed so upon awakening from the coma I found that the combination of immobilization and the surgery left me so weak walking was almost impossible. Because of all the drainage and feeding tubes, I was forced to lie on my back for the first 2 months. Three times a week, they would wheel me down to the dialysis unit to undergo the cleansing process.  It was their hope that my kidneys would be able to bounce back from the trauma, but as time went on and despite the best efforts of the Mayo team, the possibility of this happening decreased. We still had a long, long way to go before I would walk out of the hospital and return to anything that even remotely resembled a normal life.

Probably the scariest time for me was in early March of 06, I had a blood clot pass through my lungs and I could not catch my breath. Not being able to breathe is very frightening, I was gasping for air while the medical team worked feverishly to get it under control.  It took a couple of hours, but finally they were able to transfer me to an Intensive Care Unit (ICU).  At the same time I had a skin graft done for my hernia that developed during the two weeks following the initial surgery.

.
Yale, South Dakota jpegI was in the hospital for 207 days or 7 months when I was finally discharged on April 23, 2006. Weak, and unable to care for myself I went to Yale, South Dakota to live with my parents and try to recover. They estimate that for every day you are in the hospital, it takes 3 days to recover.

.I had a long road ahead, my kidneys were still not functioning properly and never would. I started dialysis in Huron, S.D and made 3 trips a week to the dialysis unit there on Tuesday, Thursday, and Saturday.

Dialysis

Dialysis is a procedure of cleaning the blood and taking out excess fluids since the kidney cannot produce urine. dialysisOnce connected to the machine it takes about four and a half hours for the cleansing process to be completed.  The procedure leaves you drained of energy so for all practical purposes it results in a lost day.

If you are on dialysis your liquid intake is very limited and almost impossible to follow. It is recommended that you consume less than 50 ounces between treatments. I had great difficulty with that limitation so they would have to remove 10 to 12 pounds of fluid with each treatment and that’s a problem because too much liquid represents a danger to the heart.

I was also limited in what I could eat since the kidney works at balancing potassium and phosphorous in the body. Too much potassium could cause a heart attack, therefore, it was recommended that I not eat potatoes, tomato products, or any dairy products.

From May of 2006 to October of 2007, I went to Avera McKennan hospital in Sioux Falls, South Dakota ten times because the vein in my arm kept narrowing and the blood could not return to it causing extreme swelling.  With the exception of being admitted to the hospital just once all of the trips involved outpatient surgery to correct the swelling.  Finally they put in a stent which solved the problem.

In March of 2007 I saw Dr. Fred Harris in Sioux Falls who did a masterful job of fixing the hernia in my stomach. Although the surgery was a success, infection kept me in the hospital for two weeks. I also had a new dialysis catheter put in, a fistula (the Medline Encyclopedia defines fistula as an abnormal connection between an organ, vessel, or intestine and another structure). In my case the fistula was combining a vein and an artery in my arm to allow the dialysis needle to enter and function properly.  Without the fistula the vein would collapse.

Kidney Transplant

During this time it was a matter of recovery and being evaluated for a kidney transplant so I could be placed on the national transplant list. I had decided to have the transplant done in Sioux Falls where I lived only because it was close.  While I was excited about getting on the list I was not optimistic about getting an organ.  The fact is, I really had little hope of getting a kidney because my blood type, which is O, is quite common and that means kidneys of that type are in greatest demand. The doctors told me that it would be at least a 5 year wait.  When I asked what the average life span of someone on dialysis, they said 5 years. So, I just resigned myself to thinking that dialysis would be a part of my life until I die.

Kidney transplantThen in 2008 a miracle happened.  A friend of the family came forward in January and offered to donate a kidney. This is so much better than a kidney from a deceased patient because they last much longer.

My donor Joey Bich (pronounced Bish) wanted to have it done at Mayo In Rochester so that’s where I went for my evaluation in June.  Finally I knew beyond a doubt that the transplant would be a reality, it was really going to happen.  Dialysis was going to end and I had a shot at a normal life again.  And…I was very happy with the decision to go to Mayo because of their experience.  They average a transplant every day.   Joey and I were approved and the transplant date of July 25, 2008 was set.

Remnants of that black cloud that followed me around for moths after the PB and J sandwich still appeared, though.  It seems as though when it comes to things medical issues, complications are a fact of life for me.  While the transplant was successful, it was not without a hitch.  What is normally a two-hour surgical procedure that some surgeons are now calling “Routine surgery” was for me an 11 hour ordeal because there was so much scar tissue on the right side of my abdomen.  As a result they had to put the kidney on the left side. My doctor told me in confidence later that he was about ready to give up, obviously he didn’t, but it still wasn’t’ over.  A day later they had to open me up again because there was a leak in one of my bowels. They fixed it but my recovery was delayed by about a month. I left the hospital on August 11 and had to stay in a motel till September 10 for checkups. Then I was free to go home.

Good news…It looks like the bad news stopped.  Since being discharged for the final time my future has been wide open and bright.  Now I can drink as much as I want and eat what I like without fear or worry. I can travel for longer than a day and am free now to live like a normal human again, just as I did before that fateful PB and J sandwich.  I have a life again and all because someone was brave, kind and generous enough to give up one of his kidneys.  Thank you Joey…thank you.

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Curt was featured in a news report that you can watch on YouTube.  It is called “Three year detour” and there is the link. http://www.youtube.com/watch?v=ZAVFh2vcG2Y

If you would like Curt to speak to your group, you can contact him here. curtgreenspeaks@yahoo.com

About Curt Green. 

He describes his life this way:

“Right now, I live in Sioux City, Iowa and work a couple of part-time jobs. My hobby is being a baseball fan but my main focus is doing anything I can to promote organ donation. I speak at high schools maybe 5 to 10 times a year, visit my local dialysis unit to bring hope to those still hooked to a machine, and am involved with a new non-profit group called Doug’s Donors who mission is to assist those on dialysis in getting on a transplant list.

I have 3 daughters and 2 sons with a daughter in North Carolina, my oldest son in Minnesota, my next son and youngest daughter in Sioux City with me and my other daughter studying to be a Vet Tech in Rochester, MN

Curt Green is a very honest and straightforward man.  When I asked him about his faith and how prayer helped him in his recovery he said, “One thing I learned is that when I was sick and hurting, I could not focus enough to pray. That is when I learned the importance of people praying for me.  I really so believe this is the cause of my recovery. Now when in church, I take it very seriously when prayers for others are requested.”

My faith plays a big part in my life as it guides and directs me on how I live. Not perfectly but progressively. There is a verse in the Bible that I feel describes my life today. It is Joel 2:25. “I will repay you for the years the locusts have eaten…” These were God’s words to the Jews through the prophet Joel. God had punished them for their disobedience and yet, in the midst of it, he offers his grace. God has been showing me his grace all along but now I can see it. He has restored unto me the years the locusts have eaten and continues to do so.

One verse that I have on my white board is Romans 12:12 “ Be joyful in hope, patient in affliction, faithful in prayer.”  Also, my sister put this saying on the board, “Everything will be alright in the end, and if it is not alright, it’s not the end.”  That really spoke to me and I still tear up when I read it.”

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My new hat April 10 2014Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Bob’s NewHeart — The Impossible Dream


heart transplant cartoon

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

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

George Bernard Shaw

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

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

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

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

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

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

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

Bob Aronson

My Story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Speaking.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Water,” I feebly said.

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

“Please,” I’m so thirsty.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Bob Aronson

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

To dream … the impossible dream …

To fight … the unbeatable foe …

To bear … with unbearable sorrow …

To run … where the brave dare not go …

To right … the unrightable wrong …

To love … pure and chaste from afar …

To try … when your arms are too weary …

To reach … the unreachable star …

This is my quest, to follow that star …

No matter how hopeless, no matter how far …

To fight for the right, without question or pause …

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

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

Thanksgiving in October. An Inspirational Organ Donation Story


pacemaker-cartoon.1.cartoon31_8775 By

Bob Aronson

With Chuck Price

We all know that life ends.  Most of us pretty much ignore that reality.  Thinking about one’s demise is not pleasant and many think that death is in the distant future anyway so why even consider it.  I have long believed that one of the reasons organ donation rates are so low (only 40 percent of Americans are registered donors) is that to be a donor one has to address one’s own death and people don’t like doing that.  It seems, too, that the younger you are the more invincible you feel

People on the national organ transplant list, though, are forced to think about death regardless of age because they have been told they are dying. You can’t get on the list unless it has been determined that only an organ transplant can save your life.

chuck prior to surgery 244-year-old Chuck Price was one of those people.  A mere six months ago he was very near death. Desperate to live and fighting with every fiber of his being he knew his chances of spending much more time with his wife and sons was diminishing rapidly. Price’ lungs were shutting down due to a disease you probably never heard of, Alpha 1 Anti Trypsin Deficiency. Only a double lung transplant could save his life and they are rare. This genetic (inherited) condition is passed from parents to their children.  Alpha-1 may result in serious lung disease in adults and/or liver disease at any age and Chuck Price was unable to escape it.  He has no memory of ever breathing like a normal person. He can only remember a constant struggle for air that has been both debilitating and discouraging.

There’s a lot more to this story but I’m going to stop here for just a few moments and tell you the Chuck Price story in an upside down fashion because that’s the way I learned about this inspirational, incredible and compassionate man.

It all began for me after Chuck got a double lung transplant and thenOTI logo about three weeks ago became a member of my 3,000 member Facebook group, Organ Transplant Initiative (OTI).  One of his first posts caught the attention of a lot of other members.  It came from the heart and it was powerful and moving.  His message was aimed at everyone and no one but it had special meaning for transplant patients, recipients and donors.  Here’s what Chuck wrote on his I-phone, then posted on OTI as he reflected on being able to breathe and live again.

Cuck Price prior to surgery“About 20 weeks ago I was sitting at UVA (University of Virgina) with 12-14% lung function, trying to keep a smile for the sake of my family, but believing that it was another dry run.

20 weeks + 15 minutes ago the flurry around me accelerated to a fervor that turned me to tears, as I feared I would die and never see my wife and kids again

20 weeks + 45 minutes ago I was rushed to a shower, signing reams of paperwork, getting IV and ports installed and told we were “live”, and I cried harder, my wife and I thought and prayed for the angel who was giving me a shot, and for their family.

I tried to picture my boys and burn them into my memory, as I feared it may be my last thought…I signed the last document, a confirmation, to donate my own organs should the worse come to bear.

20 weeks + 90 minutes ago, I was wheeled away adjusting my view tosurgical suite see my wife  for as long as the hall, would allow. I was wheeled into a room, filled with what seemed like futuristic machines and devices, and being attached to such.

My last words to no one and to everyone, “I’ve got 2 boys who don’t know how to be men yet people, and God let someone here be a Cowboy fan.”

20 weeks + 2 hours ago someone injected me with something that calmed me and made me very warm, a mask was placed over my face and I pictured my boys…the light faded to black…

just out of surgery 320 WEEKS LATER, I’m a different man, my lung function is above 100 % in all categories, I’m prepping for my first 5k, I’ve returned to work, started a donate life/alpha 1 awareness foundation…and I’m here to teach my boys to be proper men.

20 WEEKS LATER, thank you God, Thank You my Donor angel, for everything I’m able to experience. Thank you for the good and even the bad days, thank you for the recovery, thank you for the strength when I lack it. Just thank you.”

Then articulating his feelings further he added these heartfelt words as advice to other transplant recipients:

“When you get the call (saying there’s an organ available for you), put it in God’s hands and never waste the chance to thank your donor and donors everywhere. Be humble because no matter what pain you went through to get there, you deserve this no more than others waiting.  You are very lucky to receive such an inexpressible gift. When you heal give back…you’re not an inspiration, you’re not special, you’re not a chosen saint, you’re the recipient of a life-saving organ from another human being.  It is the most precious, special gift anyone of us could imagine….and… YOU OWE!

From myself and all like myself…THANK YOU!”

When I read the post I knew I had to have “The rest of the story,” as newsman Paul Harvey used to say.  I needed to know what brought him to the point where he tapped out that inspiring note on his I-phone so I contacted Chuck and found that he is taking full advantage of his new life.

His youthful exuberance is exciting and contagious.  He sounds like a man who has a thousand things to do but only ten minutes to complete them.  Ideas flow from him like oil from a new gusher and all of it, all of it is based on gratitude aimed at his unknown donor.

I will relate more about Chuck’s plans his feelings and his gratitude but I think it is important to add some perspective here before we do.  First, if you are not an organ donor and want to be just click on this link http://www.donatelife.net and you can register right now.  It only takes seconds.

There are about 120,000 people on the U.S. organ transplant list and only about 28,000 transplants are done each year.  At any given time there are about 1,500 people on the Lung transplant waiting list.  The wait time for lungs is from four to five months.  Unfortunately only one in 5 donors has lungs suitable for transplant. That means that a lot of people die waiting.

For those unfamiliar with the organ transplant process, you can only be added to the waiting list if an organ transplant center committee certifies you as being in the end stage of a disease and that there is nothing more conventional medicine can do to save or prolong your life. In other words you have been told that you are dying.  That news is not only depressing it is irritating and frustrating.  In Chuck Price’ case it was doubly frustrating because he is a “can-do” kind of guy and with Alpha 1 there was nothing he could do — but wait.

As his time on the list lengthened, Chuck believed he might be one of the unlucky ones for whom there was no life-saving organ.  The thought that he would leave behind his lovely wife Lisa and his two sons, 13-year-old Chase and 20-year-old Skyler tore his heart out.  At 44 Chuck had hoped to have a long life ahead of him but now, struggling for air with each breath his time was dwindling to days, maybe hours — and he knew it.

Not being able to breathe is terrifying.  I have Chronic Obstructive Pulmonary Disease (COPD) and while nowhere near as serious as what Chuck experienced I know what it is like to struggle for every breath.  Any amount of exertion can cause breathing to become even more labored and with that difficulty often comes panic…which makes it even worse.  Add difficult breathing to knowing that you are dying and you can imagine Chuck’s state of mind.

If you want to get a hint as to what Chuck and those like him experience with a disease like Alpha 1 take a standard drinking straw between your lips, block your nose and breathe through the straw.  drimped drinking strawNow crimp the straw…and try to breathe.  That’s what Chuck felt like 24 hours a day for almost all of his 44 years.

As a heart transplant recipient I and others with new organs can identify with the emotional roller coaster ride Chuck was on.  Knowing you are dying and that chances of getting a transplant are very slim leaves you with a burning sensation in your chest and gut not unlike acid reflux only there is no quick Pepto Bismol or Zantac relief for it.  The burning never goes away and just when you think it has reached its zenith it gets worse.

The sinking feeling burns through your heart and into your soul leaving you with a smoldering desperation that cannot be defined or explained.  There simply are no words to describe the emotional agony.   It is not so much the fear of dying, although that’s certainly part of it but rather a deep concern for the well-being of loved ones once you are gone.  You desperately want to show a brave face but your insides are mush and you want to scream at the top of your lungs that this just isn’t fair.  When you hug your wife or kids you don’t want to let go.  You almost feel as though dying is an abdication of responsibility to your family and you are wracked with guilt and remorse and even anger…sometimes rage.

Not only did Chuck have a family to which he felt obligated but he was the owner and President of American Weld Worx, an industrial service contractor that serves mining and heavy industrial manufacturing businesses.  So on top of his family concerns were those of his business, his employees and customers.  Chuck was carrying an immense emotional load.

As of six months ago all of that changed because of a generous anonymous stranger.  Chuck Price got his new lungs then.  He still worries about his business and his family, but now that he can breathe he can act on his concerns and fix them.  He is no longer helpless and that makes him very happy indeed.

Price has lots of goals and apparently the energy he’ll need to make them real.  One of his plans has him forming a foundation that will help transplant patients and he talks about it with an excitement that causes excitement.

“I named our foundation Chuckies Second Wind because I can breathe again but I should have named it Chuckies First wind because I have absolutely no memory of ever breathing like this.  I would like to say I breathe like a normal person, but that wouldn’t be true, our Lord and my Donor Angel saw fit to take me from a lung function of 12-14% to well above 100% in all measurable categories.  My Pulmonologist says my lung function is that of a 22-year-old competitive swimmer.  I can’t help but be giddy with happiness, and give daily thanks for the “second wind” I’ve been given.  None of this was possible without the selfless gift, given by my Donor Angel.”

Price’s plans for the foundation are simple.

“My overall goal is to help others receive the same gift that I received regardless of financial standing, I hope the Affordable Care Act (Obamacare) makes that dream come true but that remains to be seen.  Short term  I hope to stimulate people to become donors and reduce the gap between supply and demand. 

Additionally I plan to set up two scholarships.  “The Donor Angel scholarship will be the original and when I discover the name of my donor we will have a second one named after him or her.  I know I’m sounding like an over-achiever here but I think Robert Browning best captured my philosophy, “Ah, but a man’s reach should exceed his grasp, Or what’s a heaven for?”

One might read what I have written and what Chuck Price said and ask, “Is this real, is he really that grateful?”  The answer is, “Yes He is that grateful.”  I asked him what if felt like to take that first breath with new lungs.  Word for word, here’s his response.  Again, Chuck Price’ own words:

“I was on a ventilator and frightened because I had never been on one before.  Waking up to find out one in your mouth and lungs and that you can’t speak is scary.  I had to communicate with family by handwritten notes. 

About 40 minutes after awakening they told me I was over breathing and the vent would have to come out.  That scared me, too.  I just knew I was going to die when it was removed and I wrote a note to my wife and my dad begging them to prevent the procedure. Of course the doctors knew best and it was withdrawn – and I didn’t die and then—-I took my first breath, the first real breath in my entire life.  Wow!  I streamed tears, I can’t remember ever taking a breath like that so I took another and filled my new lungs to the hilt.  Nothing in life had ever felt that good.  I could find no words so I just grasped my wife’s hand and cried. 

An hour after those absolutely delicious breaths they also removed the oxygen and the saturation meter they put on your finger showed it was 98-99 % which amazed everyone — the docs included.  I was in a chair and walking very soon after.”

You’ve heard the commercials on TV that pitch some amazing deal and then add, “But wait, there’s more!”  Well, there’s more to the Chuck Price story.  Not only is he rebuilding his company, establishing a foundation and setting up two scholarships he plans on running a 5K. And, remember this.  It’s only about six months since his double lung transplant.  Price talked about the 5K race.

foot race“The 5k is called the Apple Trample 5k, it’s a yearly event in a much larger event, The Apple Harvest Festival held in Martinsburg WV.  We will not only be competing but will have a booth during the race signing up as many Organ donors as humanly possible.  We will also be raising awareness for both organ awareness and Alpha 1 Anti Trypsin Deficiency.”

Thee you have it, the Chuck Price story.  If his enthusiasm doesn’t affect you then it is quite likely you are a Vulcan, you know, the pointy eared people who are totally devoid of emotion as represented by Spock on Star Trek.

God bless and keep you Chuck.  You’ve got your work cut out for you and with your attitude we know you will accomplish everything you set out to do and more.  If not, Robert Browning will be very disappointed.

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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 email me bob@baronson.org and ask for a copy of “Life, Pass it on.“  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. 

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

I’m Not Brave, I Have Cancer


On the surface this blog may appear to have little or nothing to do with organ transplants but it is very relevant.  Over one hundred thousand people in the U.S. are waiting for organs, all of them wondering what tomorrow holds  and even — if there will be a tomorrow.  I was in that position and I know the feeling. 

 

I first published this post on my world wide issues blog  http://blogsbybob.wordpress.com , It so moved me and has received such an incredible response that I thought it was important to share it here as well.  What you are about to read was written by cancer patient Marcie Williams.   While Marcie is not waiting for a transplant I know we can all learn from her experience.  She wrote what follows in the hope that others will benefit.  If you want to know more about Marcie or contact her go to:

http://www.facebook.com/reqs.php#/group.php?gid=52102741772

 

I am not brave. I have cancer.
By Marcie Williams

One day you’re teaching, the next day you have cancer. Do you tell your supervisor or students? You’re the director of an ESL program and your employee gets cancer. What should you say? What if your colleague is diagnosed with cancer? What do you do? The aim of this article is to answer these questions and others.

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I am a cancer veteran. Veteran you say? Yes veteran. I’m not a fan of the word survivor because it doesn’t sufficiently describe the battle to beat cancer. Plus, I think survivor is stigmatizing in that it makes me forever known as the girl with cancer. I am more than that so I prefer veteran. In October 2005, I was a 30 year old ESL instructor. I lived in New York City and had a cool loft that, like most New Yorkers, I shared with five people to pay the rent. Then I discovered a lump. After hoping it would disappear, I went to the doctor. I had a mammogram, a biopsy, a core biopsy, and finally in January 2006 a mastectomy. This was followed by chemotherapy, radiation, and physical therapy for lymphedema. In May of 2007, I moved to Columbus.

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What I learned while going through my cancer battle was that if you are a cancer patient, support groups are plentiful and cover most aspects of your treatment. On the other hand, these groups do not provide support for my colleagues and coworkers. Many of them had no idea what to say to me and I also learned that many administrators were also unsure what to do or say once they learned of my illness. It occurred to me that I could help by offering suggestions.

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The suggestions I have written below can be divided into three sections – for everyone, for cancer patients and for supervisors. These suggestions are based on my own experiences, the experiences of other cancer veterans, and what I have read in various cancer books and blogs. It is my hope that the article below will help you if you are either fighting the cancer battle or helping someone fight it.

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For Everyone
If your friend or coworker has cancer, don’t ignore it. This is one of the biggest blunders you can make. Also, it does not matter if you think chemotherapy is toxic poison, try not to disagree with or criticize her treatment plan or give her suggestions for alternative medicines. It puts her in a defensive position. This is a time when she needs support not a time when she needs to justify her actions.

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People also tried to compare their illnesses with my cancer. I realize they were trying to relate to me and doing the best they could, but having pneumonia does not equal having cancer. People also tried to relate and help me by giving unsolicited advice and information. I had women come up, tell me they too had cancer and then go into the horrors of chemo, surgery etc. Some information was so scary I actually started to cry. Other times I just stared in shock. If you have information to share, it is my advice to tell the patient you have information that, when they are ready, you will share.

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I think people are at a loss of what to say when they learn you have cancer. They say what they think is best. People want to be supportive and helpful but some things just sound wrong. For example, when people told me to be positive or be strong, it added a lot of pressure to be constantly cheerful. People would say ‘you’re very brave” and I always thought “no, not really”. Brave is a firefighter who rescues a child from a burning building. I am just doing what I have to so I don’t die.

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Things you can do –
Ask questions, then listen
Give cards, gifts, visits
Tell us you have experiences with cancer – ask us if we are ready to hear what you know, then tell us
Do favors. Don’t ask, just do it.
Follow our lead – if we want to talk, then listen
Be there – ask us to lunch or dinner
Be normal – if we are out of the office, keep us in the loop and yes, by that I do mean gossip

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Say things like:
I’m here
You look great
I’m sending you prayers, karma, awesome thoughts
How are you today?
You are amazing
That is terrible

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Things NOT to say
If you need anything, call me.
Don’t put us in a position to ask, just help

God won’t give you more than you can handle
This always made me think ‘so if I were weak, I wouldn’t have gotten cancer?’

My aunt/friend/sister died of that or my friend beat it and then had a recurrence
Please DO NOT tell me cancer stories with a bad ending

Is it treatable?  This always disturbed me because I just didn’t know. It was almost as if I should say ‘we have to wait and see if I die or not before I know if it’s treatable’

My whole family had it so I will get it too
Maybe but you don’t have it right now and you may not get it. This is not about you

That’s the most curable kind of cancer
This diminishes what the patient is going through

At least it isn’t brain cancer
Again, don’t diminish what the patient has

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For Patients
As a patient there are many work related issues to consider. Telling people you have cancer is a personal decision but I advocate telling both colleagues and students. Some of the reasons I told my colleagues were to prevent negative feelings, get help and promote understanding. I was afraid I would miss work or need extra help to perform my work duties and if they didn’t know the real reason, they would become resentful.

I told, and still tell, students I had cancer. I do this to help them. I learned that reactions to cancer vary in different countries and the reactions to ‘female’ cancers can be quite negative. For example, in Middle Eastern countries, cancer is shameful, too embarrassing, taboo and frightening to mention. Sometimes women aren’t allowed mammograms or other treatments because they would be administered by male doctors. In the UAE, cancer is the biggest killer of women because stigma prevents early detection. Many countries do not promote regular mammograms. If I can change these perceptions, encourage mammograms, or help any student. I will tell my story.

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If you choose to tell people, you should consider some of the following. Do you do it face to face or appoint someone to tell people for you? I had my sister tell my friends. After telling a few, and finding myself comforting them, I couldn’t do it anymore. You should also keep in mind that many people are squeamish, so consider how much detail you give. Gender plays a huge role in how you tell people as well. For me, it is uncomfortable to tell men and my male students I had breast cancer. It is also uncomfortable for them. If they ask what kind of cancer I had, I might look down, point, or depending on my mood, I tell.

If you decide to tell people, keep in mind their reactions. People mean well but oftentimes are wildly inappropriate. Keep that in mind and try to remain calm. I also try to alleviate their discomfort.

After you are diagnosed, it is important to keep some other work-related items in mind. Try to plan your doctor’s appointments at convenient times. This is not only for yourself, but for your supervisors as well. It is also important to communicate your schedule with your supervisors. If you have to miss work for an appointment, I recommend keeping a log. Some companies allow you to make up the time instead of taking vacation or sick days and it is important to record your absences.

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For Supervisors
Supervisors also have a key role in cancer patients’ work. Things that you as a supervisor can do include planning for every contingency. Patient’s reactions to cancer treatments are unpredictable so it is essential for supervisors to have a back-up plan. This requires flexibility and skillful budget handling. It is also important to communicate with your employee. The more information you have about the employee’s appointments, the more you can plan. If you need to know something, ask your employee. It takes the burden off the employee to remember and explain everything at a time when she is thinking about her own mortality. Oftentimes, supervisors try to reduce the patient’s workload. On the one hand, this is a lovely gesture, but on the other hand it runs the risk of scaring the patient. They might think you are doing this to slowly fire them, or it could make them feel useless. So don’t assume the person cannot do the job; ask them directly.

To conclude, I hope this has provided a bit of insight into the mindset of a cancer patient and given you some suggestions for what to say or do as a patient, supervisor or colleague. Before I finish, I’d like to share the best piece of advice I received while going through chemotherapy. A co-worker – also a cancer veteran – told me that while I was ill, it was my time. It was ok to think about myself; to be a little selfish or, for that matter, a lot selfish. This was a hugely liberating piece of advice and I think everyone can learn from it. If you are ill, it is your time. If your employee or coworker has cancer – it is her time. She needs everyone’s time, support, and understanding to beat the disease. Good luck to everyone.

 

I’m sure transplant patients can find paralells between Marcie’s experience and theirs.  Her tips, hints and suggestions are very germane and should be taken to heart by all who read this. 

 

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the need for more organ donors.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may have saved or affected over 50 lives.

 

Editors note:  Unfortunately Marcie passed away a few months after writing this message but not before she travelled remote parts of the world and continued to boost the spirits of all upon which she came in contact.  Marcie may be gone but her courage and upbeat spirit will live on and serve as a great motivator for the rest of us.  May she rest in peace and offer her warmth and smile from above.

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Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com.   Also…visit and join my Facebook site, Organ Transplant Patients, Friends and You at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php 

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