An update after today.

[BenThom-Wood]

I have been to see my consultant today & he confirmed I’ve met a senior European specialist of cardiology.

I’m now off amiodarone & they still want to titrate my bisoprolol up to 10mg

According to today, long QT isn’t affected by beta blockers but it is a symptom of calcium channel problems.

The Prof says I’ve got Long QT & not channelopathy which makes the decision of stopping my amiodarone quite odd.

I joked with my family about having to have another cardiac arrest just to prove another set of data for the hospital. I didn’t think I was serious but when the half lives of amiodarone flush out of my system, then I might be at more risk of a Long QT caused cardiac arrest.

My ramipril will stay at 1.25 grams until next year & the clopidogrel will stop next year too.

No operation on my heart valve as it’s only moderately leaking & I’m ok at the moment.

So, genetic testing is commenced which is good & I’m off a drug which is also great. The bad news is the drug I think is necessary is now flushing out of my body.

What larks huh?

[Milkfairy Heart Star]

How do you feel?

When is your next review?

Perhaps keep a very detailed diary of your symptoms until your next clinic appointment.

Are you taking high doses of a calcium channel blocker?

My Cardiologist gets concerned as I am on very high doses of Calcium channel blockers.

It is the main medication that controls my vasospasms which if untreated can lead to arrthymias and heart attack.

Too much long QT.

It's a balancing act trying to get the right combination of medication to treat us individually as patients.

Hey but what do we know 🤷‍♀️

[BenThom-Wood in reply to Milkfairy]

Well Milkfairy , I feel good to have the genetic test started & I’m not having so much drugs as Saturday now but I feel I’ve been left with an increasing risk for another cardiac arrest. I have no symptoms at all of my cardiac problems, only a slow heart rate.

I’m on a zero dosage of amiodarone now. The letter from the Prof to my consultant hasn’t been sent but the MRI hasn’t made it to the Prof either.

So things may change but the half life of amiodarone may still help me for a few months. The irony of being told I’ve got Long QT but not channelopathy but they don’t want me on amiodarone isn’t lost on me.