Sunday, February 10, 2013

The doctor who killed me

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. 

Oh, I'm still alive, although barely. The normal prognosis for pulmonary fibrosis is three to five years. I'm in early year three. It is rare for someone with pulmonary fibrosis to survive for more than five years. The months since I was diagnosed have been a living hell. Breathing becomes more difficult with each passing day. 

Pulmonary fibrosis is progressive and fatal. It kills more people annually than breast cancer. There is as yet no treatment for it.

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.

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-five―seldom score high enough to get a transplant. 
How did I get pulmonary fibrosis?

In July 2010, an electrophysiologist, Dr. Stephen Prater,  in a Piedmont Heart Center 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 as he should have that amiodarone can be a deadly poison. 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. And patients should be forewarned of the side effects of the drug.

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 then 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―occurring around the fingernails is one of the symptoms of pulmonary disease. 

The cardiologist who saw me that day, Dr. Stuart Katz, who has since retired, didn’t connect the obvious symptoms of amiodarone poisoning with the symptoms I was displaying, although he knew I was taking amiodarone and specifically asked if the cyanosis could be due to that. 
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 of 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 Dr. Prater's 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 Dr. Prater had discussed my case and agreed that what I had was pulmonary fibrosis brought on by amiodarone toxicity.
I began seeing another Atlanta electrophysiologist after I had been diagnosed with pulmonary fibrosis. He said he would never have prescribed amiodarone in my case - and if he had, I would have received both extensive verbal warningas from him, and many pages of printed information about the dangeras lof the drug as well.

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.

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 completely done yet, but I’m working on it).

Noel L. Griese
Atlanta, Ga.

Another case of physician abuse

Following is an email I recently received from a follower. 



I will withhold my name for obvious reasons. I am a 56 y/o retired Coast Guard aviator (rescue swimmer, Dropmaster, Loadmaster and flight mechanic) living in Washington state and part time in remote Southeast Alaska. I write today because I tripped over your blog (thankfully) last eve when I returned from 3 days in a hospital in Puget Sound, where I was cardioverted twice in 12 hours for AFIB.  

A bit of history: We think my AFIB started 5 yrs ago when I was pulling a noxious weed called Scotch Broom from our property. The juices in the plants had turned my hands green, as I was not wearing gloves. Scotch broom has a very very powerful alkaloid that interferes with electrical signals to the heart muscle. I have yet to meet a doctor that knew this and have yet to meet one that cared when I told them. A few days later I came down with spatial disorientation, nausea, rapid and uneven heartbeat. It was eventually noticed by an anesthesiologist that recognized it as AFIB before she put me under for shoulder surgery.

Unfortunately, I picked the wrong cardiologist here on the Olympic Peninsula, and he put me on Coumadin and forgot about me for 5-6 months while my heart was remodeling and growing fibrosis. I finally wised up and started reading up on the effects of long term AFIB with tachy (34-220 bpm), switched doctors, found a electrophys that did a TEE on me and immediately cardioverted me to normal S/R. Unfortunately, damage was already done from remodeling, and recurrence is common if AFIB is not treated like the emergency that it is. There are still a lot of ill-informed practitioners out there that repeat the old saw that AFIB is not life threatening.

Since then, I have had perfect sinus rhythm except for what seems to be an annual “dumb stunt” like getting dehydrated, unknowingly taking ephedrine (cold capsule), etc. that puts me back into tachy AFIB. Don’t drink, smoke, or drug, so am pretty careful about setting it off. 

2 weeks ago I went into AFIB after accidentally hitting a galvanized bolt head with my cutting torch, causing me to get a snootful of toxic smoke. 15 minutes later I was in AFIB. I tried to get the E/P to also test me for toxic metals, because a cardioversion would be pointless if I was still toxic, as I would surely revert to AFIB. Sure enough, three days later I was back in AFIB. 

Went to a different hospital, different heart doc, and he too was uninterested in finding the causative for the AFIB, he just wanted to sell ablation and drugs. Before cardioverting me, he had them dose me up with AMIODARONE and start a drip. After two ‘HITS”, he successfully cardioverted me. They sent me home the next day (yesterday) with a scrip for AMIODARONE 200x2 per day. Absolutely NO warnings or instructions regarding this drug. Interestingly, they spent over an hour warning me about the warfarin side effects and dangers but refused to discuss AMI when asked. I knew at the time AMI was bad, but had not been near a puter so I could research it. 

What I cannot seem to find is info on how soon damage is done with this poison, and at what dose. No one at the hospital knew or cared, or they were told to clam up. Who knows. You will never hear doctors or nurses badmouth any drug. They actually claimed that Predaxa and Xeralto were being given a bad rap!

So the question begs, who do you trust? As soon as you quiz a doctor about the stuff they claim it is safe or they advise you to seek help elsewhere. I have tried to find someone with the knowledge or guts to admit this is a slippery slope and advise me of a safer drug to keep me in S/R without trying to sell ablation, which has a success rate of MAYBE 40%. The ablation doc I saw claimed 80% which in itself should be enough to scare off anyone that does their homework. 

These doctors stick together like mafioso and I will soon run out of doctors that will accept my insurance that will talk to me. They will all want to know why you left the doc before them....

In closing, I am eternally sorry for the injustice done to you. I would see him in prison if it were possible. These guys think they are God and cover each other’s backsides, and the FDA is a whore to the big drug companies. If anyone does not believe it, they can easily find proof that the big pharm lobbyists were walking through the halls of Congress handing out cash payments to the politicians we all vote for. As an aside, AMI was not approved by the FDA initially, so docs were buying it from Europe and Canada and using it. Then the manufacture of AMI told the FDA they would cut off the flow of AMI to the USA if the FDA did not approve it. 

AMIODARONE is still one of the only drugs to get the blessing of the FDA without clinical trials. I doubt AMI is even approved for long term use for prevention of recurrence of AFIB, but I cannot find it yet.

You are in our prayers and you can be sure I will pass the word and that your life and work to inform people will not be in vain.

God bless,

sign me:

Another AFIB patient stuck in the middle....

USCG ret

Saturday, February 9, 2013

A case of physician negligence?

Following is an email I received recently. My comments are in blue. Identity of the person who wrote to me is confidential.

Noel Griese
Dear Mr. Griese:

I am fifty eight years old. I've had bouts of Atrial Fibrillation and had been taking Flecainide for years. In July of 2012 I had a cryoablation procedure with the intent of curing my Afib problem. I had more Afibs after the procedure, at which time I was prescribed amiodarone. Amio is prescribed widely for afib.  Its my understandong that amiodarone is the "holy grail" for heart arrhythmia problems. When I had my first Afib my cardiologist treated me as if I were the president. Now I'm a pariah. I've read that some cardiologits wil no longer see a patient that wants to stop amiodarone.

Due to amiodarone I now experience an unusual medicine/metal smell which I can only describe as torture. Check with your doctor, but I suspect the smell is due to the iodine in the amio. I had similar problems with my breath when I was on amio I have to bury my face in a pillow at night to alleviate the smell. Just watching television is agonizing. My cardiologist said "in the decades I've been prescribing Amiodarone, I've never heard of this problem".  He told me to stop taking aspirn. That didn't work. It took my pharmacist to read the amiodarone insert and discover it can cause an unusual taste or smell. My cardiologist told me to stop taking it. I didnt know Amiodarone stays in your system for months. It stays for up to two years - although the aftereffects can last for the rest of your life.

I've had hearing problems, and my sight is not as good as it was. My ex wife pawned that off on getting older. I believe its due to amiodarone. I've not heard of amio affecting hearing, but it can definitely affect eyesight.

I'm very sorry to read of your problems due to amioderone. Thank you.  This smell is driving me crazy. I don't know if this will affect my lungs or not, or don't know how long the smell will last. I'm also afraid of the possibility my Afibs will return. Are you aware of a non toxic Afib drug that works? Sorry, I don't - but your doctor may. Please write or call me anytime.  Thank you And thank you for sharing.