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. Stephen Prater, in a 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. And 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. Stuart Katz, 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. Prater'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.
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. Prater 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 warningas from him, and many pages of printed information about the dangeras lof 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
Atlanta, Ga.
