Monday, January 16, 2012

I'm diagnosed with pulmonary fibrosis due to amiodarone toxicity

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. 

Pulmonary fibrosis is progressive, and there is as yet no treatment for curing it. Normal prognosis is death in two to four years. Often death comes faster, especially when the fibrosis is caused by amiodarone poisoning. It is rare for someone with pulmonary fibrosis to survive for five years or more. 

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.

There are several medicines that hold promise for slowing the progression of the fibrosis. One is an over-the-counter antioxidant called L-Cysteine Hcl. I'm taking six hundred mg. of that three times a day. There's also a clinical trial just launched for a drug already in use in Europe called pirfenidone (being marketed in Europe as Ebriet). Atlanta is one of the centers for the clinical trial, and I'm in the process of enrolling.

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-three―seldom score high enough to get a transplant. But there are exceptions. One of the men in my pulmonary fibrosis support group at Piedmont Hospital is in his early 70s and just got a double transplant. I'm in the process of being evaluated and scored by Emory University Hospitals in Atlanta, the local lung transplant center.

How did I get pulmonary fibrosis?

In July 2010, an electrophysiologist in a 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 that amiodarone is a deadly poison for seventeen percent of the population. 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.

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 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―occurs around the fingernails. 

The cardiologist who saw me that day didn’t connect the obvious symptoms of amiodarone poisoning with the symptoms I was displaying, although he knew I was taking amiodarone. 
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 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 his 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 the electrophysiologist had discussed my case and agreed that what I had was pulmonary fibrosis brought on by amiodarone toxicity.

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. I may discuss a few of them in future postings on this blog. I don’t know how many postings there will be, because I don’t know how often I will write a post, or more importantly, how much time I have left to write them.

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 done yet, but I’m working on it).

Hopefully, in future posts, I can provide information of both a pragmatic and spiritual nature that will be helpful to others facing the same predicament as me.

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