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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.”

 

 

Hepatitis C, Peter and Ashley. A Love Story.


For the past week or so I’ve been writing about Hepatitis C, mostly in clinical terms.  Today we begin to tell the human side of the story, the side that shows how devastating this disease can be and how it can bring out the very best in people.  It is the story of a Boston couple — each has the disease.  One far more seriously than the other.

Peter and Ashley Curran are my friends as a result of Facebook and Organ Transplant Initiative .  They are two of the dearest people I know not only because of how much they love each other but also because they are friends to all who are suffering from Hepatitis C, their caregivers and to everyone else in the donation/transplantation community.  These are two genuine, kind and loving people who face incredible adversity on a daily basis and never ask for anything.

The story you are about to read was written by Ashley at my request about her beloved Peter.  She writes only of Peter’s disease but doesn’t even begin to touch on the many other hardships they have faced nor those they are facing on a daily basis.  Ashley and Peter don’t have much,  but they have each other and by God in my book that makes them the richest people on earth.

If ever there was a story of love and compassion and of giving yes, giving (Ash and Peter give till it hurts) it is the Curran story.  Please, if you pray, say one or two for Peter and Ashley.  God gets distracted once in a while with all that’s going on in the world so let’s give him a nudge and remind him that Peter and Ashley could use a little of his grace.  It is people like Ashley and Peter who will get left behind as our national safety net gets ragged, torn and frayed.

More people in the United States now die from hepatitis C each year than from AIDS, according to a new report from the Centers for Disease Control and Prevention. More than 3.2 million Americans are currently infected with hepatitis C and the really bad news is that most people who have it don’t’ know it.

Let’s start with a definition.

According to the Mayo Clinic Hepatitis C is an infection caused by a virus that attacks the liver and leads to inflammation. Most people infected with the hepatitis C virus (HCV) have no symptoms. In fact, most people don’t know they have the hepatitis C infection until liver damage shows up, decades later, during routine medical tests.

Hepatitis C, Peter and Ashley.  A Love Story.

Written by Ashley Tenczar Curran

“You are going to need a transplant, your liver function is at about 10 percent”. I heard the words over the phone as my husband Peter and I were having our morning coffee. He had gestured for me to come over to the phone to listen in, and the words will never be extinguished from my mind.  I did not know then, in my shock and disbelief, that a shadow had fallen.

Peter and I met in 2000, a year that I was finally leaving my devastating drug addiction behind, and starting over. I had moved into a rooming house in South Boston, where Peter had been a tenant for about 7 years.  I wasn’t looking for love, especially in THIS wrong place. An overcrowded, “6 adults sharing the same bathroom” illegal “sober house” as it was advertised had enticed me because it was in good old “Southie”.

As I moved in, and was trying to carry my computer with one hand, doing a disastrous job of it, I heard a voice say “need some help?”  I realize how stupid this sounds, but I married Peter that instant.  He was 20 years older than me, and not my type at all. Laid back, calm, patient, and not overly talkative. I am the opposite.  He helped me plug in my computer, and left. I had been hit by some type of Divine thunderbolt, and I had not felt that feeling in a very long time.   We were facing insurmountable odds. He was just getting clean, tired of being “sick and tired”, and I was fresh out of a treatment program.
By all reasoning, we should have spent one week together and never seen each other again.

We should have died when we relapsed one time, several months after we met, to “try it one more time”, as if we had not destroyed out lives enough.  All I remember is waking up with a needle in my arm, and seeing Peter on the floor , with a needle in his arm.  We talked the next day, and loved each other enough to realize that we would lose each other if we used even one more time.  We finally, after some 15 years pursuing recovery, were unselfish enough to lay it down, and never return.

But the past always comes into the present, it is inevitable. I had been diagnosed with Hepatitis C, like most people I know, young and old, who have ever used a needle while doing drugs.  It is an epidemic of unimaginable proportions.
My virus was “undetectable” and remains that way to this day, 12+ years later.  Peter did not fare so well.

When we first started dating, I was amazed to listen to stories from other addicts, both active and in recovery, telling me that Peter is the kindest and most patient person they have ever met. I say this NOT for the purpose of this story, but my husband has some kind of way about him that instantly puts people at ease.  When my best friend Michelle overdosed in the room above ours, we tried to bring her back, and I wanted to kill the man who had given her the dope. Everyone who was there wanted to hang this man.   Everyone except Peter. He got the man some soda, gave him a cigarette, and sat him down to ask him what exactly had happened.

I remember the guy saying “Why are you being so nice to me?”

I have tried to model my behavior after my husband’s, being honest almost to a fault, and at the same time I am angry that I am not the one who is sick, that he , the patient and loving one has to be the one to go through the horrors of 22 medications several times a day, 3 years so far on the transplant list, (UNOS), and very little family support  (They were attentive and supportive at first, but now that the drama has settled, and they know it could be many more years before Peter gets his Gift of Life, they have gone on with their lives, and do not even invite him to family events anymore)
Peter does not get angry.

This is how I know that God will give him a transplant. This is not wishful thinking, because if you knew Peter, truly knew him, then you would know this also. He has a higher purpose, and God is not done with him yet.  He met a nurse, albeit a “disgraced” one, (me), who is 20 years younger than him, and who loved him from the first time she clamped eyes on him. He is my “Brad Pitt”, even in his weakened state.  I find I love him more , the sicker he gets.  The fight he puts up, the appointments, 4 in the past 2 weeks, and the humility he shows, the polite character he prides himself on, causing doctors and nurses to say over and over again “I wish I had 100 of HIM!”

Hepatitis C is overlooked. That is a FACT. So many young people are being diagnosed right as I type this, and the organ transplant lists, particularly the liver, are getting longer and longer. People are dying from a disease that is completely preventable, and that has a vaccination available!  Soon we will find that our young people are gravely ill, (we can see it now), and that scares me.  Peter said if he had a choice, he would give his liver transplant to a young person, as he has lived his life.

A lot of people think that “junkies” don’t deserve transplants, because “they did it to themselves!”

Well, to that I say “so cancer patients who chain smoked for years don’t deserve chemo and radiation, and costly experimental procedures because THEY “did it” to themselves?  So many diseases ARE the result of something “we have done wrong”.

The real shame is the stigma that society attaches to drug addicts. One person told me “taking pills is ONE thing, but putting HEROIN in your ARM with an IV? That is ridiculous!”   More people die from a combination of narcotic pills and another type of pill, typically a “benzo” like Valium than do from a heroin overdose (I.E. Oxycontin).

I don’t know what the future holds for my husband, or, for that matter, for me. But every day I remind him that God loves him, and I love him. We tell each other every day. Though we did that before he got sick, it resonates even louder now, because I could, in reality, be counting down the days that I get to hear his voice, and see his chest rise and fall, knowing he IS breathing, as I do so often.

Please consider being an organ donor.  There are so many people suffering like this, and putting their best foot forward to patiently wait for their turn. My husband, I believe, is the most patient “patient” that Beth Israel Hospital has ever had.

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After three years on the waiting list, Peter and Ashley are considering looking for a living liver donor.  If you have an interest in helping this couple you may contact them directly on Facebook or leave a message here and I’ll make sure then get it.  Please everyone, if you pray,say one for Peter and Ashley.

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

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

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

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

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

Yes, Brain Death Means You Are Really Dead!


Are brain dead patients really dead?  That’s the question many people are asking because of stories circulated by irresponsible journalists, TV shows and movies who seek sensational plots and people who just refuse to acknowledge the facts.

The simple answer to this question is, “Absolutely.  If you’ve been declared brain dead by a qualified team of experts in a hospital setting then you are dead.  The New York Organ Donor Network put it best, “There are more tests to establish death done on potential organ donors than there are on people who are not donors.”

There have been several stories circulated about how “Brain Dead” people have recovered and gone on to live normal lives. I have spent the last month looking into these stories and have determined that while one or two are unexplainable primarily because families won’t release medical information all the rest were simply not true.

I have interviewed two world famous neurologists who have written extensively about brain death and who were part of the process that developed the rules for making that determination. The protocols for determining brain death are more rigorous than for proclaiming death under normal circumstances. Every single neurologist, physician or other medical expert I’ve talked with has said the same thing, “No one recovers from brain death!” New protocols were established in 2010 to make the testing even more rigorous and they require the physician who is declaring brain death to fill out a check list to be sure every step has been completed. Again, this process is more rigorous than what is used to declare death under normal conditions.

Here’s the checklist that must be followed in order to declare brain death:
Cause of Brain Death:
________________________________________________________________
Date of Exam: ____________________________
Time of Exam: ____________________________
A. Absence of Confounding Factors: RESULTS
1. Systolic blood pressure > 90 mmHg ______________________
2. Core temperature > 36˚C ______________________
3. Negative for drug intoxication or poisoning _______________________
4. Toxicology results ______________________
5. Negative for neuromuscular blocking agents ______________________
B. Cranial Nerve Reflexes and Responses:
1. No spontaneous muscular movements ______________________
2. Pupils lightfixed
_______________________
3. Absent corneal reflexes ______________________
4. Unresponsiveness to intensely painful ______________________
stimuli, e.g. supraorbital pressure
5. Absent response to upper and lower ______________________
airway stimulations, e.g. pharyngeal and
endotracheal suctioning
6. Absent ocular response to head turning ______________________
(no eye movement)
7. Absent ocular response to irrigation of the ears ______________________
with 100 mls. of ice water (no eye movement)
8. Apnea PaCo2>60 mmHg ______________________
a. PaCo2 at end of apnea test
b. PaO2 at end of apnea test
C. Medical Record Documentation of the above Examination
D. Comments
__________________________________________________________________________
__________________________________________________________________________
__________________________________________________________________________
__________________________________________________________________________
________________________________
Certification of Death
Having considered the above findings, we hereby certify the death of:
_____________________________________________________________________________
Physician Signature Printed Name Date/Time


There will always be naysayers and people who “know of people who recovered” but I am satisfied after considerable research that when brain death is declared it is final.

Brain death is never declared by anyone with any connection to organ recovery and transplantation. The transplant team is not even aware of the patient until after brain death has been declared. The physician who declares brain death is independent of the recovery and transplantation team. Physicians who attend to patients on a regular basis are sworn to and legally committed to do everything possible to save your life. They are not part of the transplant team either and in many cases the hospitals where people are declared brain dead don’t even have transplant teams because they are not transplant centers.

To add to theevidence I have offered is this information from Stacey Gelowitz  Renal Transplant Coordinator at Alberta Health Services Edmonton, Canada Area Hospital & Health Care.  While she is in Canada the American and Canadian processes for declaring brain death are virtually identical.  Here’s what she wrote:

“At our center, we define neurological death by two criteria: irreversible loss of the capability for consciousness AND irreversible loss of all brainstem functions (including breathing). The protocol we follow for adult NDD is as follows:
Done twice by 2 physicians independently, who are not associated with transplantation
(1) Deep unresponsive coma with known cause
(2) Absence of confounding factors (eg. alcohol, tricyclic antidepressants)
(3) Temp > 34 degrees C
(4) No brainstem reflexes
a. No motor responses except spinal reflexes
b. No cough
c. No gag
d. No corneal responses bilaterally
e. No vestibulo-ocular responses bilaterally
f. No oculocephalic reflex (Doll’s eyes test; contraindicated in spinal injury)
g. No pupillary response to light bilaterally (pupils 6mm)
h. Apnea test, pH < 7.28 and PaCO2 > 20mmHg above pre-apnea test level
(5) If pt doesn’t meet all above criteria, do ancillary tests to show absence of intracranial blood flow:
a. Radionuclide cerebral blood flow study
b. Cerebral angiography
It can be hard for families to comprehend that their loved one is dead because the heart continues to beat spontaneously and the person is supported by machines so they look asleep. Important to note is that…
* No brain function remains (in contrast to coma/vegetative state).

* Heart continues to beat because of mechanical support stabilizing body, e.g. ventilators. Remember: Sinus rhythm is controlled by cells within the heart (SA/AV nodes), so as long as the heart is being perfused adequately (getting O2 via blood), it is happy to continue beating. Medulla oblongata in brain controls rate and strength of beat, but not basic rhythm).

* Blood still flowing to body organs (heart, lungs, liver, kidneys, pancreas) allowing transplantation if donor family consents, the organs are functioning adequately, and the potential donor has no serious health concerns

It is VERY IMPORTANT that the donor does not have any factors that confound the diagnosis of brain death. I think it is in these circumstances that brain death is (very rarely) wrongly diagnosed. A great website that you can refer to that touches on these ideas: http://www.braindeath.org/clinical.htm. It goes through different confounding factors and why physiologically in their presence brain death cannot be declared.

I have not seen any reports where pts recover from ‘brain death’ and it was not due to one of these confounding factors. We have gotten much better as a medical community at recognizing the suppressive effects of this list and know now not to declare brain death in the their presence. I think where patients extremely rarely slip through that can lead to wrong diagnosis of brain death is in the following two circumstances: (1) pts are on an unknown substance that is not tested for on toxicology panels and suppresses brain stem reflexes. Or, (2) a pt receives a drug in hospital (eg sedative to stop seizures or allow intubation) and the pt metabolizes the drug extremely slowly. The latter example (slow drug metabolism) is more applicable to children/babies rather than adults, but can happen in both (here is a case study from our center describing just that: http://www.ncbi.nlm.nih.gov/pubmed/19818943). As a result, the time in which brain death is declared was extended.

People need to understand that these instances are incredibly rare. If there is any doubt that one of these confounding factors is contributing to a wrong diagnosis of brain death, another tox screen or temp etc can be done to rule out such factors. Take a look at the cases people are presenting on reversible brain death. I would bet that all fall under what is discussed above. That said, some people will still stick to their guns and not believe you no matter how much info is provided, and that’s okay too”

If anyone needs more information that I have provided here I suggest you contact a neurologist at your nearest transplant center and ask him or her.  If you still doubt the process then perhaps you should not be a donor.

 Bob Aronson is a 2007 heart transplant recipient, the founder of Facebook’s 1700 member Organ Transplant Initiative and the writer of most of these donation/transplantation blogs on Bob’s Newheart.

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

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

If you want to spread the word personally about organ donation, we have a PowerPoint slide show for your use free and for use without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound.

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

Journalistic Terrorism


I am a heart transplant recipient and a registered organ donor.  Today my new heart aches for the over 113,000 people on the national transplant list and their families because an irresponsible writer just told them their lives are unimportant and that they should go home and die.  I know what it’s like to be on that list.  I know firsthand the terror associated with the fact that because less than half of all Americans are organ donors some patients will die waiting.  In 2010 over 6,000 died and now the shortage of donor organs is even greater with the likelihood that the fatality list will go even higher. With the publication of a “don’t become an organ donor” column in the Wall Street Journal, the author and the paper have displayed a heartlessness I thought could not exist.  I would rather not believe that anyone would seek financial reward at the cost of human life but that’s what author Dick Terisi and Wall Street Journal owner and publisher Rupert Murdoch have done.  It is what it is – Journalistic Terrorism.

The irresponsibility of Terisi and Murdoch is going to cause a lot of people to die.  The story in question claims that physicians allow and even facilitate the death of patients in order to retrieve their organs for transplantation.  Not only is that charge wrong, it is reckless and life threatening.  The teams of people in hospitals that care for patients, however ill, are not connected nor do they report to the very specialized transplant teams in the same organization.  And – not all hospitals even have transplant capabilities.  There are 5, 754 accredited hospitals in the United States but only 242 of them are transplant centers.  Terisi makes it sound as though all hospitals are transplant centers with surgeons hovering over patients, scalpel in hand ready to retrieve organs.  That picture is not only distorted it is the product of the overactive imagination found in most fiction writers.  The problem is Terisi passes himself off as a knowledgeable reporter of actual events.  Let me be very blunt.  He knows better but lying about the process sells more books and that’s his bottom line.

His major point is that Physicians are cavalier in their approach to proclaiming brain death so that they can hurry the process of recovering organs for transplant.  Fact:  the procedure for determining death prior to recovery of organs is rigorous, thorough and as exact as medical science can make it.  My previous blog on the subject “Death by Journalism” explains the process for declaring brain death in great detail.   This story is a dramatic example of what I call “Junk” science.  He uses anecdotal evidence and off the cuff remarks of a single physician to make his point and calls it evidence.

Some readers are going to believe this nonsense and refuse to become organ donors.  Others, who are donors, may decide to reverse their decision.  In either case people will die as a result because the critical shortage of organs for transplant will become even more critical.  Terisi and Rupert Murdoch’s Wall Street Journal must be held accountable for this reckless endangerment of human life.  This time there is a cost for having a “Free” press and the cost will likely be the deaths of a good many people…just so an author can sell some books and a publisher can sell a few more newspapers. Shame on them!

If you want the facts about organ donation/transplantation and associated issues here are some links.

* Fact sheet.  Myths about organ donation (this link directly addresses the subject of care of dying patients)  http://tinyurl.com/7xngpet

* 25 facts about donation/transplantation National Kidney Foundation http://tinyurl.com/8o6uq2

* How the transplant system workshttp://tinyurl.com/7rccn3u

* UNOS facts about Transplantation in the U.S.  http://tinyurl.com/7bkmaft

* Transplant Recipients International Organization (TRIO) General information http://www.trioweb.org/

You can also read more about a wide variety of donation/transplantation issues on my blog Bob’s Newheart on WordPress www.bobsnewheart.wordpress.com

Bottom line.  We can’t stop people like Terisi and Murdoch from publishing lies and distortions but we can mitigate their effect by speaking up and letting the truth be known that organ donation threatens no one and saves thousands of lives.

Every organ donor can either save or enhance the lives of up to 60 people.  That’s a fact!  Tell the story and tell it often.  I’m here to write this piece because of an unselfish organ donor.  I will not let his action or his character be defiled because of the greed of a writer and publisher – I hope you will join me in honoring all donors and their families by spreading the word that organ donation saves lives.

Lodge your protest at Wall Street Journal Contact:
Online: onlinejournal@wsj.com
1-800-JOURNAL (1-800-568-7625)
Outside the U.S.:1-609-514-0870
Monday – Friday: 7am to 10pm ET
Saturday: 8am to 3pm ET

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

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

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

 

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