Some Things Are Almost Unbelievable - Atrial Fibrillati...

Atrial Fibrillation Support

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Some Things Are Almost Unbelievable

EngMac profile image
17 Replies

After 3.5 years I finally got an appointment with an new electrophysiologist. I had a stress echocardiogram and EKG before the meeting. He had read my file and asked what was my status since the entries in the file. I summarized my situation and showed him some EKG charts that I had taken when I was in what I thought was A-fib. He said the stress echo taken a week ago was fine without any changes since the one taken 3.5 years ago. The EKG was fine as well with no new issues. He said that I did not have A-fib but I had extra heart beats which were nothing to be concerned about. This came as a shock to my wife and I. I asked why the doctors and paramedics in the ER and my family doctor would not have told me this when I showed them the charts and when I was having extra heart beats when in the ER. He said they likely would not recognize that the EKG charts did not show A-fib. I guess since I thought the charts did, and said this, that is the diagnosis that I got. He also told me I was originally admitted because I was suspected to have had a heart attack. Maybe this is the reason the 6 heart doctors who saw me when I was in the hospital in 2013 always said I was there for something other than A-fib, but changed their tune when I said I was there because I had A-fib. Why the original electrophysiologist and intern assumed I had A-fib and gave me A-fib drugs seems to be malpractice. I have read that if A-fib drugs are given to patients who do not have it, then the drugs will cause it. I am glad I stopped taking all the drugs a month after being given them.

So for 3.5 years I have been worrying about A-fib and spending endless hours researching it and trying to stop extra beats that are not harmful. And bothering lots of people with my story. I have also spent a lot of money on vitamins and chiropractors. The unfortunate thing is I have no real recourse for what has been done. Not being able to get an appointment with another electrophysiologist did not help either. And the follow-up in November 2013 with the first electrophysiologist who mis-diagnosed me did not help. This whole mess is almost unbelievable. This is one bad example of what can happen in the Canadian health care system.

And now my travel insurance is probably negatively impacted even though I have not had any of the mis-diagnosis by so called competent doctors.

I am very happy I do not have A-fib at this time. The doctor said he would schedule an echo a year from now and he would meet with me to review my health status at that time. He said, if I wished, he would be my heart doctor. I said yes I hoped that he would be.

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EngMac
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17 Replies
meadfoot profile image
meadfoot

Wow, excellent outcome but really bad form that you have been misdiagnosed. All sounds very distressing. Be well and enjoy a af free life,

rosyG profile image
rosyG

that's good news for you- perhaps don't offer a diagnosis in future??!!

I've just read this through twice and as you say it's quite unbelievable that this has happened. You've been put through such a lot of worry. Is this typical of the Canadian health system ?

( We will miss your posts !)

Sandra

Was it the original ECG that didn't show AF according to new doc? Only ask as maybe you were in AF when diagnosed?

EngMac profile image
EngMac

I am not totally aware at what the doctor looked. We don't get to see our files. I can only assume he saw nothing that indicated AF. I was so shocked by his diagnosis that I forgot to ask all the details. I suspect the echo also told him that I did not have AF as there would likely be some impact on the heart if I had. He looked at the charts. I suspect if he did not have other reasons to think I did not have AF, he would have been more suspect about the charts since they are not official EKG charts taken by a medical facility.

The Canadian health care system does have many issues most of which are not publicly known. Some things are done really well. I have a sister-in-law who delivers babies. The stories she has to tell would curl your hair and she says they are not "one of's". In the last year, my daughter has broken a leg and her back; and in both instances the care was really quite bad. She said to diagnose a broken leg for a human in a rural community takes a week. My nephew had the same experience. Both walked on the broken bones for a week before they were told the bone was broken. At least my daughter asked to have hers put in a boot just in case. She now looks at all her X-rays. For a dog everything is done in an hour. She is a Vet so she knows how health care should be done. For dogs and cats, it is much better than for humans, at least in the clinic in which she works.

Health care is a real challenge and I think the patient needs to be more knowledgeable, more suspect and needs to ask a lot more questions. May be even getting a second opinion may be prudent.

cuore profile image
cuore in reply to EngMac

Actually, EngMac, we can ask for our hospital records. I did that when I broke my ankle and tore three ligaments resulting in a plate and 9 screws. I have nothing but praise for the speed in which I was operated on as well as the skill of the orthopaedic surgeon that operated on me. I have regained fantastic mobility. I am sorry to hear that patients living in rural communities are not given the same service. Do lean on our politicians to change the system for rural communities. I intend to cause some uproar about AF procedures.

Our lifelab tests are online for us. I intend to get my past EKG's and my one echocardiogram, hopefully via my GP. Like you, I am extensively researching, but the information in this blog is priceless and invaluable.

traveler65 profile image
traveler65 in reply to EngMac

@EngMac You are not legally allowed to see your test results and the whole record including the doctors' notes. REALLY??!!!!! That's aggregious!!!! In the usa it is a legal right of every patient to see their entire medical record. Youcan sue a doctor or hospital if they refuse to provide this info. This prevents you from researching the issue on your own and looking for alternative and integrative treatments and/or other doctors. That is really crazy. Here is a ploace to get information. Youhave to pay for a temporary subscription either for a day , a week, or a month but it is very useful. Just type in your question. the site is uptodate.com In order to know even further what to ask it is useful if you have all your test results, as for blood work, all your ekg results, all your echo cardiogram notes, the er room notesw and the doctors' notes. Is there no company in Canada, a private company that can give you an afib screening and other basic tests. In the USA we have something called Lifeline Screeing. They meet periodically in various places in a church, synogogue, Town Hall, Veterans of Foreign Wars hall--any pubvlic place they can rent--- and do varoious medical screenings by appoointment that you make on line. For ex. you may spend $200 and get an afib screening, carotid artery sonogram, abdominal aorta anyuerism screening, blood pressure screening, lipids, inflammatory bniomarkers. etc. The euipment is the portable type used by the military and is very accurate. We also have at least 4 companies I know of that will do blood work ordered by you, prescribed by their doctor so you can legally do the blood tests and you get the results on your computer. Two of these companies have a concierge ASPECT--THEY SEND THE PHLEBOTAMIST TO YOUR HOUSE ANY TIME BETWEEN 7 AM ANDS 7 PM SO YOU CAN DO THE BLOOD TEST BEFORE GOING TO WORK OR WHEN YOU COME HOME,.

iF YOU WANT INFORMATION TO EHLP YOU TAKE YOUR OWN HEALTH CARE INTO YOUR OWN HANDS, BE MORE INFORMED AND HAVE A MORE PROACTIVFE APPROACH SO YOU WILL NOT GET SIDE LINED BY SOME UNSKILLED PHYSICIANS LOOK AT THE WEB SITES FOR lIFE eXTENSION (LEF.ORG)-YOU CAN SUBSCRIBE TO THEIR MONTHLY MAGAZAINE TO GET INFO. yOU CAN LOOK ON THEIR WEB SITE AT THE BLOOD TEST LIST AND READ WHAT THE BLOOD TESTS ARE FOR. tHERI IS ANOTHER WEBSITE FOR A COMPANY CALLED

traveler65 profile image
traveler65 in reply to EngMac

@EngMac sorry my post replay got split. The other company is CHEKD.COM Go on their facebook page andask them to send you their list of tests and a price for each and what the tests are actually used for By reading the life extension magazine you will get alot of information that is really technical but understandable and useful and backed up by many studies which are listed following the article and which you can access if you like. Notice that the research articles are not only from the USA but also International Journals and Europena journals, Japanese journals, Italian, German---I have not seen any research articles from any Canadian Journals.

The best thing to help you would be to make yourself more informed I think.

traveler65 profile image
traveler65 in reply to EngMac

@EngMac One more thing I am involved with 2 medical systems in NYS, where I live Both are linked to each other electronically and I have signed a document so that anywhere in the world where I receive medical treatment, the doctors and hospital can have access to all my medical records--great idea-- Anyway- from the 2 systems-Rochester Univ med /Strong Memorial and Guthrie I have, provided by them , a patient portal link so as soon as any test is done the results appear on my computer link via this portal. I know the USA is big on technological advances , but why doesn't Canada do this for all patients???? Also, If I am having a true emergency, or think I am, I can see my local gp right away and a good , new (as in newly equipped with the most modern equipment and highly trained staff) not far from me has an available ER. AND I am not in a large city, I live in a rural area--there are cities(smaller than NYC) within 35 and 120 miles and 65 miles-- but we still have more farms here. However--everyone still has what I have described.

traveler65 profile image
traveler65 in reply to EngMac

@EngMac That is insane. How can you take a week to diagnose a broken leg????????????????. You go to ER they x ray it and you can see if it is broken. If it is a hair line fracture you may need some kind of contrast and a different sort of test for it to show up.

Great news in the end and quite a few here including myself have benefited from your posts so that research was not completely pointless. Enjoy your new freedom!

cuore profile image
cuore

Hello fellow, Canadian. I join you for the disdain of the Canadian health system regarding treatment of AF, despite huge taxpayer dollars. I compliment my GP for discovering atrial flutter in Feb. '16, but question his procedure of playing EP fooling around with rate control drugs rather than placing me on an EP path right away. (I am not saying he should not have prescribed the drugs; I am saying that due to our long waiting times, he should have started the EP path from the atrial flutter. ) The consequence was that by Sept. 26/'16 through ECG I was officially diagnosed with PAF with a rapid decline to persistent by January 13/'17. My previous posts relay my depressing experience with the brief one time visit with the cardiologist, whose assistant resident MD interrogated me. They had a few minute pow-wow resulting in the cardiologist not asking me ONE question as to how I felt. Subsequently, this cardiologist's diagnosis of me, I feel, is very faulty, also due to other points. Yes, the Canadian system.

However, I am surprised you are saying your EKG does not state what you had because my EKG had written afib on the top right hand corner. Since you have the EKG print-out you might want to examine it again. Also, tests etc. go from the emergency room to your GP, so I do not understand why you are giving your GP charts.

If I read your account correctly, your first EP experience was in the emergency room with an intern EP, and now you have waited 3 1/2 years to get to a regular EP. Wow! You are beating me in Vancouver and I am beating another fellow Canadian in Toronto as to waiting time.

Finvola profile image
Finvola

I'm shocked at your experience for two reasons, the first that it happened and was allowed to drift for over three years and secondly that it happened in Canada, in a major health care system.

The good news is that you don't have AF - I would dearly love to be told that. The even better news is that you didn't take drugs which you didn't need.

Enjoy your new-found freedom from AF. We certainly benefitted from your research and you will be missed. Best wishes.

traveler65 profile image
traveler65

@EngMac sorry to hear about this gross negligence or lack of skill by the professionals. If you can afford it come to the USA to Strong Memorial hospital inRochester NY for an accurate diagnosis. You won't have to wait 3.5 years for an appointment. also a good place to go is Cleveland Clinic in Cleveland Ohio, they have their own special bloodwork for heart issues-Cleveland heart lab-- 2 very good places for heart problems.

Dodie117 profile image
Dodie117

If you are still a little doubtful I would say buy a Kardia machine and anytime you feel irregular beats do a short test. It will tell you if it's AF.

EngMac profile image
EngMac

Thanks for all your supportive replies and very useful information. In Canada the Provinces set the health care standards and so they can be different across the country. The federal government provides funding but not necessarily specific guidelines although they do for some things. And it is difficult or sometimes impossible to get a private assessment. Going to the US is really expensive but can be done and some GP's will refer you.

I have learned, from watching a video of a UK doctor training doctors how to read EKG's, that this is an in-exact science and that doctors need to finalize their conclusions with other types of supporting diagnosis. So perhaps only competent electrophysiologists are really qualified in reading EKG's that indicate AF.

I have also read studies that if certain AF drugs are given to patients that don't have AF, this can cause AF. And in fact certain drugs make AF worse. So perhaps, if the EKG is read incorrectly, and the wrong drugs are given, by the time you get to an electrophysiologist who does read the EKG correctly you may actually have AF. Scary if this happens.

EngMac profile image
EngMac

Hi traveller65. Actually, for my daughter's broken leg, the cast was removed when her leg was still broken. After 8 weeks of physio and a new X-ray, the leg was still broken. I have read health care is the third cause of death after heart and cancer. Perhaps this is true if even the simple treatments are done poorly.

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