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Ken Miller

Ken Miller

Ken Miller

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 its 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?

6 Responses

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  1. red4748 says

    Attention: To All People who have had Love Ones to Die or Be Injured with Amiodarone you Need to Contact Lawyer Justin Williams immediately!!
    Justin L. Williams
    719 S. Shoreline, Suite 200
    Corpus Christi TX 78401
    (361)885-0184 office
    (361)548-8370 cell
    (361)575-0551 Victoria

  2. StopAmiodarone says

    Mike, I remember my father being unsteady on his feet and he ended up with amiodarone toxicity. I would strongly suggest that you contact another doctor and end your usage of amiodarone. Please do both things today…don't wait!

  3. Mike says

    I've been on 200mg amiodarone since 1996,
    About 4 years ago my feet got numb and i would wobble when i walked, my Doctor led me to think that it might be diabetes, he never acknowledged that it might be amiodarone , about this time my legs started to pain me so muchthat I had to rest every 50 meters,
    About 1 Month ago I noticed my feet getting extremely numb within an hour of taking my tablet dosage now reduced 100mg amiodarone
    Please can anyone help, I'm currently taking 6mg Warfarin a Day for my metallic heart valve.
    I am concerned to know what to do my Doctor just shrugs his shoulders!!!
    Many Thanks,

  4. Justin L. Williams says

    Jan, I know how much you must miss your husband. My wife saved my life from pancreatic cancr with god's help and I could not bare to live the rest of my life without her. You simply do not deserve the loss. I am truly sorry. Justin L. Williams

  5. mkakin says

    Dear Jan,

    I am so sad and so angry to read your story of how Ken died. His first instincts were right, and then to be talked into taking it anyway because the "benefits outweigh the risks." My father was in his 80s and always said he was ready to go when it was "his time." Well, it wasn't his time til Amiodarone made it so, but still I find some peace in knowing he didn't fear death and that he lived a reasonably long and healthy life til the last 4 weeks. But your husband was only 66, far too young to die. Disregard is exactly the right word–disregard for risk, disregard for patient input, disregard for suffering….and that is just the doctors. The drug companies' disregard for anything but the profit motive is ever greater.

    Let's find strength in action. Thank you for sharing your story.


Continuing the Discussion

  1. Amiodarone oxygen | Marybuyshouses linked to this post on September 25, 2012

    […] Amiodarone Pulmonary Toxicity | amiodarone toxicityJan 28, 2011 … So Ken, very reluctantly, started to take Amiodarone. That was mid-August. He was hospitalized for shortness of breath and put on oxygen full … […]

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