I think I am have been misdiagnosed

Posted by katiekateny @katiekateny, Aug 16 11:25am

To explain the title will require a bit of back fill.
Last October, for the first time, had an Afib episode while a doctor was watching. Primary care..freaked her out..sent me to hospital straight away. As the episodes never lasted longer than 10minutes..I was symptom free on arrival. The ER doc saw the ekg that was sent with me, and put me on Flecainide and metoprolol. Within a week the primary added Eliquis. From that week on ward I found myself constantly running out of breath and feeling fatigue. I keep a diary and the first note of this was starting about a week after starting these drugs.

My primary ordered a metabolic panel on me , the results showed one marker enzyme off a bit…the same marker for heart failure. So..suddenly I had that added. When I saw a Cardiologist in December, he added Jardiance, lisinapril and Lasix. I actually felt a bet better with that…well, easier to breathe I think.

A watchman procedure was done on me in June. The TEE just came back…I was taken off Eliquis and put on baby aspirin and Plavix. This was one week ago.

I am often unable to catch my breath at all. I have these breathless bouts much more frequently than before the change of drugs.

During this last 10 months, every image
, test, and procedure has been done on me. Every test, every possible avenue examined. I am as clean as you will ever see.

I have never had high blood pressure, never diabetic.
Calcium score - O
Echo cardio … all valves have minor to minimal leakage.
Echo legs..all arteries show minor blockage.
Echo arteries around heart minor or minimal blockage
Echo main artery in neck minimal blockage.
TEE results…same and indicate all is normal with my heart.
Pulmonologist test Normal lung function, normal range, no damage
Even did a bone density test on me…. .01% chance of a bone breakage
Consider my age..73.

So….i think I was misdiagnosed with heart failure. I think my symptom were brought on by the drugs, and the new cocktail is even worse.

Who do I tell this to? Will I be deemed an uncooperative nut? Should I tell or just stop going to the docs. (Everyone except my EP)

I won’t stop taking anything till I get some clear answers….but Plavix is turning me into one huge bruise. At this rate I’ll be completely purple by Halloween.

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

You story suggests that different docs where adding different meds; instead of one doc controlling all the meds. That said looking at your list you are taking: Jardiance, lisinapril, Lasix Flecainide and metoprolol, aspirin and Plavix. There are interactions between some of these drugs. You are taking anti-arrhythmic drugs and diuretics and anti coagulants, heart failure drug like Jardiance. I would start by talking to my pharmacist and see if anything pops up there. But from just looking at drug interactions you need to make sure you do not get dehydrated for starters. Kidney function and lowering heart rate stick out to me. That said I believe you also should make sure that you tell your story about feeling much worse now that before this began.
What you leave out is what other diagnoses do you have/had besides Afib. Were you legs swollen and did or do you have excess water elsewhere like around your heart of blood vessels? As well as other issues. Did they explain why you needed a watchman? It seems that you describe an increasing amount of time being in Afib. Hence their decision to move to a watchman??

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I am sorry to read about your heart issues and all the medications you are on. Remember - knowledge is power. One of the first things YOU should do is go to Web MD Drug Interaction checker. You can put in all of your medications, as well as OTC or vitamin supplements. It will let you know what you should be aware of, especially interactions and whether they are mild, moderate, or severe. This information can be brought to the attention of your primary md or cardiologist. Having knowledge will help you to understand why you are on what you are on. You may also feel more comfortable if any medications are discontinued, even temporarily, as well as what to look for if you need to restart them again. Work with your md or nurse practitioner. It may take some time to get the right combination of medications. Keep a record of your physical symptoms, including any swelling of your legs. Be aware of your mental symptoms, too, as people can get increased anxiety or fatigue, as well. Good luck and feel better.

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@pht1123 and @katiekateny pharmacists have interaction checkers and can check interactions of all these meds for you. That might carry more weight with a doctor- coming from another professional. Pharmacists can often better advise on how to stop, whether to taper- better than an MD in my experience.

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Pharmacists are wonderful resources of knowledge. Their patient interactions are so important. It is still good to get information for yourself and verify things with your pharmacist. Working together with the health care provider, the pharmacist, and the patient are all essential to have the patient feeling the best they can, with the best outcomes that can be obtained.

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