My husband, Ken, the love of my life, died November 28, 2008 after 2 years and 4 months of struggling with Pulmonary Fibrosis due to Amiodarone. He and I had celebrated 23 years of marriage just one month prior to his death. Let me tell you his story.
Ken had a heart attack in 1998 that left him with scarring on the bottom or ventricle of his heart that made it necessary to have an implanted device – ICD – to control the VTACH. The ICD device would deliver a shock to his heart if it “got out of rhythm”. This device never fired (delivered a life saving electrical shock) until the summer of 2005. Since it was a solitary event the docs just watched Ken and kept track of the ICD device. Apparently the battery level was low enough to need replacement – replacement of entire device since you can’t change out battery. A new device was implanted in 2005.
In 2006 Ken’s ICD device was firing quite often and his VTach rhythm problem was now becoming an issue. Ken and I both questioned the docs about alternative therapies – ablation therapy, ICD device with a pacer, but both his Cardiologist and Electrophysiologist (doc who takes care of ICD device) said Amiodarone was the only way to control Ken’s VTach. They would not consider anything else even though we asked them to. Kens cardiologist said he hated to tell us but there were some side affects from Amiodarone. He said lung issue was a big one and it was irreversible. We didn’t exactly understand what it meant, but doc also revealed he had two other patients with lung issues from Amiodarone therapy.
Ken was terrified of taking the medication because he had emphysemia and all the docs knew this. Since Ken’s diagnosis of emphysemia in 1990 it never was an issue for him. He never took medication for it nor ever was on oxygen because of it. I’ll restate – all his docs knew he had emphysemia. Ken and I talked a lot about Amiodarone and the possibility of lung toxicity. Ken decided he wouldn’t take it – we didn’t even fill the prescription. At August 2006 appointment with Electrophysiologist the doc was really angry with Ken because he wasn’t taking Amiodarone. Docs comment was – and I will never forget his words – “the benefits were worth the side effects”. So Ken, very reluctantly, started to take Amiodarone. That was mid-August. He was hospitalized for shortness of breath and put on oxygen full time by October 1, 2006. The damage was done in 2 months. The docs still did not take him off Amiodarone until I – after watching my husband wasting away and continuing to have extreme shortness of breath – faxed all of his Docs in December 2006 demanding – yes demanding – that they do something, consider other therapies – but do something for his worsening health.
At the end of January 2007 the docs took Ken off Amiodarone and put him on BetaPace and changed out his ICD device for one that had a pacer. The pacer would deliver little electrical charges to keep his heart “in rhythm”. Finally the right treatment. But too late to save him.
For the next 6 months Ken was put on a high dose of steroids to help “overcome” the effects of Amiodarone therapy. The steroids seemed to be working and we were both encouraged at his returning health. He was able to walk, even did some light repair type work at our motorcycle business. What we didn’t know is that he could not stay on high dose steroids over the long haul and as they weaned him down to a low dose, his shortness of breath and health issues returned. We also didn’t know about the long half life of Amiodarone and that it continued to do it’s damage for many months after he stopped taking it. The steroids gave him a false sense of “health”. What we didn’t know is that Ken’s body was adjusting to low oxygen levels.
During 2008 every appointment with pulmonary doc was an exercise in futility. Lots of double talk and no help. I would overhear the Pulmonary doc saying “he has Amio lung” to other doc in practice when he was outside exam room. The doc had Ken perform “tests” to determine his oxygen level and Ken used to laugh saying I won’t be able to do it. I can’t breathe! But Doc would have him do it anyway – including pulmonary function tests that can only be described as torture for someone who has pulmonary fibrosis. It was awful! Nothing changed, the testing was awful and still no treatment or diagnosis. Sure we had appointments, they’d check meds, run tests, but Ken was getting worse and not one of his docs paid attention nor did anything to help. I believe they knew and just were keeping us “appeased”. The Pulmonary doc finally paid attention in November 2008 when we requested Ken’s records for a second opinion doc. We even got a phone call after hours from his cell phone. Suddenly he was paying attention.
In November 2008 our daughter was so upset by Ken’s deterioration that she made an appointment for a second opinion with a Doctor she knew and respected. I wish we had gone to him years before. Ken was hospitalized immediately by this doc because Ken’s oxygen level was 65% – on oxygen! This doc said to him you are in a life threatening situation. Ken looked at him and said but doc I work every day and I came here from my business. The doc said, yes, your body was adjusting to low oxygen levels, but it was life threatening – lungs and heart and brain cannot continue at those levels. Anything under 90% is bad, but at 65% he was in trouble. Ken was hospitalized on November 20, 2008 and despite the heroic efforts of the second opinion doc and other specialists brought in to treat him, he died Friday, November 28, 2008 – in front of my very eyes. Just closed his eyes after struggling for so long to breathe – and died. Not a calm, peaceful death, but one spent struggling to take a breath, on 15 liters of oxygen with a nasal canula and a mask. Ken was 66 years, 11 months and one week. He died one week before his 67th birthday. I know that if Ken had not taken Amiodarone, he would still be alive. Amiodarone killed him. I am without the love of my life and face the rest of my life without Ken because of careless disregard for the safety of patients.
Ken was a deeply loved husband, father, grandfather and friend. His sense of humor was wonderful and contagious and he had so many unique sayings! He was a very special man and his death has left us, a grieving family, asking why?