A-Fib Patient Story #12

Toxic Effects of Amiodarone—What Could Have Prevented this Death?

by Karen Muccino, 2004

My father, a retired Obstetrician, woke up on January 1 2004, his 69th Birthday, with a temperature of 100 degrees, general malaise, and sore throat.  Typical symptoms of the cold that was going around at the Holidays.  He stayed in bed and missed his Birthday Party. He felt a little better on the 2nd. On January 3, our nightmare began as a family; my Dad was short of breath and thought that he might have pneumonia. My mom, his wife of 47 years, took him to the urgent care clinic. He had a Chest X-ray and was immediately admitted to the Hospital, with an initial diagnosis of bilateral pneumonia. On January 4, he was transferred to ICU (Intensive Care Unit). He did not respond to antibiotics within 24-48 hours, and his Cardiologist and Pulmonologist put their heads together and feared that he was suffering from Amiodarone Pulmonary Toxicity. He had a lung biopsy shortly thereafter that confirmed their diagnosis.
My Dad had been on Amiodarone 200mg once a day for 10 months, post ablation for chronic atrial fibrillation. He had no previous lung disease or open-heart surgery.

He complained of a dry cough for 2-3 months. His primary care doctor thought it was ENT (Ear Nose Throat) related, and referred him to the ENT. The ENT thought it was GI (Gastrointestinal) related and sent him to GI. He never made it to that appointment, as he was in ICU.

My Father had a normal CT scan of the lungs in the middle of Oct. 2003… Just 8 weeks later, fatal lung damage from Amiodarone.
His condition continued to get worse.  He was put on a ventilator on January 18, 2004, which he was unable to tolerate.

He had to be put on a drug to paralyze him, in order to tolerate being on the ventilator.  His lungs were so severely damaged that they had to force as much oxygen to his lungs as possible, which no one could tolerate without being paralyzed. We had heard that it was like sticking your head out of a moving vehicle traveling 65 miles/hour and trying to breath out of a straw. Could you imagine what my father must have felt?  5 Children and a wife of 47 years, watched over him for 49 days, as his condition deteriorated, and never improved.

The half-life of this drug is so dangerous.  Once toxicity was diagnosed, it didn’t matter that the drug was stopped as it continued to do damage. Steroids did not improve his condition at all.

It appears that most literature I have read, states concerns with doses over 300mg/day.  Well, here is a case where a patient was only on 200mg/day for 10 months, and ended up with Fatal Pulmonary Toxicity.  In addition, they underplay the need for close monitoring of the lung status of patients on Amiodarone.  They absolutely need to come up with a new protocol, monitoring lung function much more frequently than every 3−6months. A chest x-ray, had it been done even 8 weeks prior to this event, would not have clued anyone into the fact that he was developing Pulmonary Toxicity. He had a CT scan, which was Normal.

My father passed away, after 7 weeks in ICU, on February 20, 2004.

Please, do whatever you can to put stronger warnings out, and push the drug companies to “red label” prescriptions, “If a cough or flu symptoms develop, contact your Physician Immediately!  These can be signs of Pulmonary Toxicity, which can be Fatal, if left untreated.”

I feel that many patients are dying of “pneumonia.” because once they wake up unable to breathe, which happens suddenly, they go to the Hospital and are so unstable that a lung biopsy cannot be performed.  Therefore, I feel that the Doctors are missing that it is really the Amiodarone.

In addition, I think patients should be required to sign a consent form, notifying them of the warnings.

Further, more needs to be done in the Medical Community to educate Primary Care Physicians of the severe effects of some drugs.

Red warning labels should be put on the Patients Medical Chart.
We experienced first hand, the very slight symptoms of Amiodarone Pulmonary Toxicity.

My Dad’s symptoms went unnoticed by him, a Physician, as they were so minor. He thought he had developed allergies, or that our air was too dry, and thus the dry cough.  He had no other symptoms that would have caused any alarm. Just 2 days prior to be hospitalized he enjoyed a wine tasting gondola cruise through the marina in Long Beach with his entire family. He was running around, getting in out of the boat just fine, no Shortness of Breath.  I lived with him, and he presented NO symptoms of concern. He was filled with energy and life, just 2 days before being hospitalized.

My Dad was a very strong man. He had undergone many procedures and surgeries throughout his life. He was strong and got through it all, BUT not Amiodarone.

His death certificate read, “Accidental death due to Amiodarone Induced Pulmonary Toxicity.” My Daddy died from an “accident”. Whose accident?

That is why this drug is such a concern. Thank you for the opportunity to write my story.

Karen Muccino
karenmuccino (at) yahoo.com

Editor’s comment: Could this tragic death have been prevented? If you are taking amiodarone, you should be monitored and tested frequently and scrupulously for damage to your organ systems (your doctor may already be doing this). You should keep copies of any tests. What’s important is not so much whether you are within a “normal” range, but whether your measurements are going up and how fast.

Note: it’s important that baseline values for organ systems should be documented before you start taking amiodarone.

Contact your doctor immediately if, after taking amiodarone, you experience any new symptoms such as: coughing, wheezing, shortness of breath, visual changes, skin rash, pain, tingling or weakness in the arms or legs, fever, rapid heart beat, fatigue, lethargy, unusual weight gain, swelling, hair loss, cold or heat intolerance, lightheadedness or fainting.

See the FAQs questions on amiodarone.

Be advised that a newer drug dronedarone (brand name Multaq) is now on the market and may be a good substitute for amiodarone. Dronedarone may not be quite as effective as amiodarone, but is much safer.

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