Unfortunately, my story starts with the passing of my Mother on August 17th, 2006. She never enjoyed good health having been in a diabetic coma at age 26 and suffering a stroke at age 44. She died of congestive heart failure while having a stent inserted. My father was devastated by her death and so when he started to lose weight I didn’t really suspect anything. He told me he was on a heart med since June and that he had to stay out of the sun and that he couldn’t have grapefruit juice. Time passed and he traveled to the East Coast in October. He froze there…he just couldn’t get warm and it turns out this is a symptom also. The hostess of where he was staying called me and said “Your Dad is sick…there’s something really wrong.” When he came home he went to the doctor and received antibiotics. He still couldn’t shake what we thought was this cold and in fact he was getting worse. I went to the doctor with him and essentially he never came home. The date was Nov. 20, 2006
In the emergency room they thought he had pneumonia and after 2 rounds of antibiotics they still didn’t see the results they wanted. They were still looking for the culprit. They questioned me extensively about his travel. They surmised that it was TB and put him in isolation the second day of his hospital stay. I arrived to check on him that evening to find him gasping for air and not monitored from the nurses desk. I was furious and let them know it. The next day he was in ICU. It was in the following days that they realized that Amiodarone could be “a factor”. I looked the drug up and confronted the doctor with my findings. She asked me what book I was looking at…I told her. It was called “The Pill Book” and I was embarrassed by its simplistic title. She replied “that’s a title I’ll never own.” I went back to the library and looked at Physician’s Desk Reference. It described Amiodarone has having all the toxic symptoms that my Dad was displaying. Outraged, I wrote a letter outlining my frustrations (one of them being a hospital bed that fit him…he was tall). That landed me a meeting with the head of the department and nursing staff.
My Dad was intubated in that first week in the hospital. Communication was cut and he was in his own world trying to cope with what treatments were prescribed. For those of you who have been through this level of care, maybe you’ll understand it when I say that there was almost a level of violence to it. That’s one of the things that motivates me to get Amiodarone restricted is how much suffering he had to go through. It was just torturous. As a society we would be outraged if we did this to hardened criminals. I feel so bad that he had to die in this fashion. He just didn’t deserve to be treated like this.
Towards the end of January, the doctors approached us and said that there was nothing more that could be done. At this point he was faced with kidney failure and had a stage 4 bed sore. We all had to wear gloves and gowns to enter the room. On January 25th the plan was set that the next day we would take him off the ventilator while administering morphine. My Dad was a very sharp guy right to the end and I’ll never forget him winking at me that day.
He knew what was coming and it was OK with him. That’s the last “communication” I had with my Dad.
I did have an autopsy done and it sites Amiodarone as the cause of death.
While my Dad did have insurance, I thought I might be faced with at least some medical bills. I never saw one bill.
What I think his case illustrates is that fact that he didn’t know that pulmonary fibrosis was a side effect. Not only was he totally unaware but the doctors also didn’t see this at first either. Why didn’t the GP doctor and Emergency docs put together the fact that he was taking this drug and having these symptoms? Are they ‘googling’ this stuff just like the rest of us?!! If so, you’ll find that not every internet listing for this drug describes what harm it really can do. Why is that? How can we change that? Also, why are patients given drugs they don’t fully understand the risks of? I think that needs to change.
In summary, let me say that my Dad was a great guy. He served his country in Germany, he worked incredibly hard in his business, took care of my mother, and together they raised a family of three. It is just a tragedy that he met his end because he was prescribed a toxic drug and he was unaware of the risks.
I just don’t want anyone else to go through this.