Dear Suse,

I'm so glad that you're back and posting again.
Thanks for your advice. My GP has now increased
the dosage of my Sotacor tablets from 2 and a
half to 3 a day. That may help. As for Wafarin -
I'll see what my cardiologist decides in March.
I don 't want blood clots or a stroke - that's
for sure.

I'm being more careful now regarding what I eat
or drink. And I'll see how I go. Again Thanks
for your advice. I'm finding that it's important
to continue to have a healthy diet and exercise.
Finding a good GP is so crucial. And I've found
one who actually makes house-visits when you're
sick. Can't complain.

Good for you Lexi :)
Keep your chin up.

There are always new cardiac treatments being devised, so there is always hope.

Cheers,
Suze.

Dear Suzie and Lexi,

Neither of you are the kind of people I would ever want to distress so forgive me.

Lexi, you told us you were going to speak to your doctor about a different medication since the Sotalol you were on was making you feel very average. 

Good call I thought since I know first hand how depilitating that drug is. You have come away with a prescription to increase your dose of exactly the same medicine?

Suzie, I am a layperson but also a veteran of 20 reversions, two ablation operations, countless experiments over seven years with diet and drug combinations, seen numerous GPs, over a dozen cardiac doctors, spent countless hours researching my issue and countless more on support forums.

This is the sum of what I have learnt.

Your heart's electrical system is like the fuel pump in your car.

The first person you will see when it starts playing up is the RACV guy (GP). Knows something ain't right, has a fair idea of the area involved but recognizes you really need the skills of a proper mechanic. Leaves you with tips on driving carefully to get yourself home.

Along you limp, to see the mechanic (cardiologist). He finds the problem is a bung fuel pump.  He might tweak the carby and change some plugs to keep you going but to fix it properly it's off to see a fuel pump specialist (electrophysiologist).

So here is the crux of it; at each stage you will find that about a third of what you had been lead to believe from the person before is rubbish and will be directly contradicted.

It was only my electro physiologist who made a big deal out of a suitable Magnesium supplement, something I was able to pass on to my brother, so far keeping him off the operating table.

Of course Lexi you should follow your doctor's orders until you see your cardiologist but please never be afraid to question or even confront people who are prescribing treatments for your body.

I hope you feel empowered enough to so.

I don't want to distress you either CSteele, as you have obviously been through countless problems with your heart.

However, one person's heart problems are rarely exactly the same as anothers, especially given the different other medical problems each person may also suffer from.

What is good for you may not be suitable for someone else, so I guess what I am saying is that generally, while acknowledging that a patient always should be well informed, we should leave cardiac problems to the experts...

Dear Suzie,

You may stress me away since after the second op I now don't have to tip-toe around the monster. You will have little idea how absurd the notion of stressing about trying not to stress can be. And I do take your point about individual situations but the side effects of Sotolol are pretty universal.

I am however conscious of stressing Lexi and while I think I have been quite judicious in the way I have discussed this I will try and be a little more generic or at least keep my comments to my own experiences.

The last person who told me to leave my condition up to the experts was my GP attempting to address the concerns I had with the surgeon I had been assigned. He said trust was a very important part of the relationship. He finally asked me who the gentleman was. I told him and there was a brief pause. "Right" he said, and these are his exact words, "how much money do you have?", "Beg, borrow and steal and get yourself along to ####. He is the best going." he then wrote me out a referral.

I later found out just how totally incompetent this particular surgeon was and to this day my wife's sister will swear he was responsible for a number of deaths.

Since then I have always done my research on doctors before they get their mitts on me and you nurses have been a superb source of information.

In your experience have there been surgeons you wouldn't have wanted operating on you or your family?

Cont..

Cont..

At the first meeting with my electro physiologist I asked him how many procedures he had done and what his success rate was. From memory he had lost 12 patients in his first 500 (a little worrying since I've backed Melbourne Cup runners for longer odds), three in his second 500 and none in his last. I was the first person to have ever asked him.

I had learnt through research the single biggest factor by a country mile of successful outcomes in this discipline was experience. There were many fully qualified 'experts' out there doing 20 or so of these ops in a year. This guy was doing hundreds. When I'm in my eighties the others can practice on me but not when I'm in my forties with a young family this was the expert for me.

My brother's father-in-law was a professor of pediatrics at the same hospital I was treated at. He was put on a anti arrhythmic medication by one cardiologist that nearly shut down his liver. He is still 'livid' about it many years later.  Since successfully ablated.

So Suzie I make no apologies about personally not leaving it to the experts but I do understand why some might chose to do so. 

Actually I should rephrase, I have no problem leaving something to an expert but only after I have determined who that expert is because from experience that term does not apply to all in the profession.

This is exactly the sort of discussion that should be had on a thread like this.