Please Note: Noel Griese, a publisher and college instructor, knew he was going to die of amiodarone poisoning and wrote about it. He died January 2014.
Sunday, February 10, 2013
The Doctor Who Killed Me
On August 11, 2011, I was given what amounts to a death sentence. I was told I had been diagnosed with pulmonary fibrosis induced by amiodarone toxicity.
Oh, I’m still alive, although barely. The normal prognosis for pulmonary fibrosis is three to five years. I’m in early year three. It is rare for someone with pulmonary fibrosis to survive for more than five years. The months since I was diagnosed have been a living hell. Breathing becomes more difficult with each passing day.
Pulmonary fibrosis is progressive and fatal. It kills more people annually than breast cancer. There is as yet no treatment for it.
Pulmonary fibrosis is a scarring of the tissue in the lungs. As pulmonary tissue hardens, it becomes increasingly difficult for the alveoli of the lungs to re-oxygenate blood supply. The victim eventually dies of oxygen deprivation.
The only remedy for a fibrotic lung is a lung transplant. For that, transplant centers use a one hundred-point scoring system to determine who gets transplants. People over sixty-five―that includes me, at seventy-five―seldom score high enough to get a transplant.
How did I get pulmonary fibrosis?
In July 2010, an electrophysiologist, Dr. P., in the Piedmont Heart Center group practice in Atlanta, prescribed 200 mg. daily of amiodarone for me. The purpose was to control non-life-threatening premature ventricular contractions of my heart.
The electrophysiologist did not warn me as he should have that amiodarone can be a deadly poison. He did not follow U.S. Food and Drug Administration guidelines in prescribing the medication―the FDA says it’s to be used only in life-threatening situations, and then only as a treatment of last resort. Also, patients should be forewarned of the side effects of the drug.
Already by November 2010, family members were noticing the shortness of breath that had overtaken me so gradually that I didn’t recognize it.
By December 2010, when I had an annual physical with a cardiologist then at the same practice as the electrophysiologist, I complained of shortness of breath and cyanosis around my fingernails, both symptoms of amiodarone poisoning. In amiodarone poisoning, cyanosis―a blue coloration indicating oxygen deprivation in the blood―occurring around the fingernails is one of the symptoms of pulmonary disease.
The cardiologist who saw me that day, Dr. K., who has since retired, didn’t connect the obvious symptoms of amiodarone poisoning with the symptoms I was displaying, although he knew I was taking amiodarone and specifically asked if the cyanosis could be due to that.
The cardiologist took two chest x-rays as part of my physical, and the radiologist who read them noted the beginnings of interstitial lung disease―but no warning came to me of what the radiologist saw.
By January 2011, I was becoming increasingly aware of my declining lung capacity and of difficulty breathing. My wife Kathie and I began to talk to nurses who lived in our neighborhood, asking if they had any ideas of what could be causing my breathing difficulties. We still hadn’t figured out that I was suffering from amiodarone poisoning. But the nurses did. Three of them―including Dr. P’s own assistant―ganged up on the electrophysiologist in early February 2011 and told him they thought I had amiodarone poisoning. He told his assistant to call me to tell me to stop taking the amiodarone―without any explanation of why.
When I had a follow-up appointment in the spring of 2011 with the cardiologist, and told him that the electrophysiologist had discontinued the amiodarone in February, the cardiologist went back to the radiologist’s description of my December chest x-rays and finally saw the warning about the developing interstitial lung disease―another term for idiopathic pulmonary fibrosis.
I was soon thereafter given an echocardiogram that ruled out congestive heart disease as the cause of my symptoms. The technician who administered that test told me my heart was as good as an astronaut’s. Chronic obstructive pulmonary disease (COPD) was also ruled out.
On August 11, 2011, the pulmonologist I was seeing told me that he and Dr. P. had discussed my case and agreed that what I had was pulmonary fibrosis brought on by amiodarone toxicity.
I began seeing another Atlanta electrophysiologist after I had been diagnosed with pulmonary fibrosis. He said he would never have prescribed amiodarone in my case – and if he had, I would have received both extensive verbal warnings from him, and many pages of printed information about the dangers of the drug as well.
So there you are. Based on the longevity of males in my family, I should be expecting another ten years of healthy, enjoyable life. But that is not likely now.
I certainly won’t be the first person to die of amiodarone poisoning. There are many cases on record.
Most of us don’t know when death will come. As a result, we fail to do many things that need to be done to protect those we love and leave behind. I’ve been giving a lot of thought to the things that need to be done―to the physical things like writing a will (that’s done), and to the spiritual things like preparing the spirit for the crossing over (not completely done yet, but I’m working on it).
Noel L. Griese