Between 2 appointments, frustration building!

[BenThom-Wood]

I’ve met a professor of ICC Adult Consultant Cardiology after an echocardiogram where I noted my heart rate was 49-51. Then the ECG took longer as it needed more time to record my heartbeats.

Then I get told I’ve got Long QT, not channelopathy. Amiodarone doesn’t help that or me & the bisoprolol needs jacking up to 10mg.

Why?

Surely if I’m bradycardiac anyway a beta blocker won’t help & the icd will fire me up?

Stopping the amiodarone is a concern as nothing has happened to me since September & that’s the only different drug from then to now?

Thanks.

[Milkfairy Heart Star]

Hi BenThom-Wood

In my patient career I have met lots of Cardiologists who can't resist the urge to rewrite my Admission Protocol tell me my Cardiologist is wrong!

I smile now at them on the ward round and then ask them to speak to my Prof who is a specialist in my condition. Then there is an acknowledgement that actually my Cardiologist does know what he's doing!

2 Cardiologists in the room and at least 3 or 4 opinions.

It can take a while to find ' the one' for you. A Cardiologist who understands you and how you like to manage your condition.

None of us can make a comment about what the best treatment is for you as that is something that you will have to discuss with a Cardiologist .

All care is offered and you can always ask for a second opinion.

[BenThom-Wood in reply to Milkfairy]

Thanks @MilkFairy , I’ll see what Monday brings. Really want the heart valve fixed as that means I should be able to stop ramipril then the corrected valve might help my LongQT?

[Milkfairy Heart Star in reply to BenThom-Wood]

I hope the appointment goes well.

It does seem to be a balancing act.

I email my long standing Cardiologist before my appointments with my questions and the latest research articles.

Is this something you are able to do?

[Fortepiano]

Betablockers are the accepted treatment for long QT.

There is a distinction between conditions where it's a matter of how 'you like to manage your symptoms' and the majority of heart conditions, where there is a clear expert agreement on the correct treatment for a specific condition.

Sometimes ( indeed rather often!) the expert knows best. He should also be willing to answer any questions and concerns that you have.

[BenThom-Wood]

Yeah Fortepiano ? Why are beta blockers accepted as a treatment of long QT? Slowing down my heart rate & blood pressure proactively will lengthen my heart beats (logically) anyway.

Just because it’s always been done that way doesn’t make it right for me. My kidneys don’t like ramipril at 2.5mg therefore eventually the bisoprolol will become a problem for me too.

All the while the bicuspid aortic heart valve regurgitates blood, increasing the mass of my heart which takes longer to contract lengthening my long QT...

[Milkfairy Heart Star in reply to BenThom-Wood]

'Just because it’s always been done that way doesn’t make it right for me'

You are right medical knowledge sometimes needs to be adapted to meet the needs of an individual patient

There is a move to stratfied medicine. Rather than blanket treatment for a condition a treatment plan is designed to meet the specific needs of an individual patient.

This is a new way of working for some clinicians as it means acknowledging the patient is also an expert too as they live with the condition.

[Fortepiano]

Sorry but this is evidence based medicine. Long QT is long QT whatever the patient.

I am very well informed about my own condition, but that does not make me the expert. I think a bit of humility is sometimes in order.

I am sure Milkfairy is an expert in alleviating her symptoms but this is applicable to very few cardiac conditions, which are not primarily symptom based.

However l am sure your consultant will be happy to explain things to you.

All the best with your appointment.

[BenThom-Wood]

Thanks Fortepiano , my 3rd cardiac event this year confounds some of the ‘evidence’ people are working on for me. I was asleep when it happened & knew nothing as there was no pain. That’s not possible according to the professor. Ah well, I’ll see.