Wednesday, January 4, 2017

Takotsubo Syndrome in BHF Magazine

Back in 2009 I suffered a heart condition known as Takotsubo Syndrome. I was my cardiologist's first patient with it, and as of 3 years ago when my husband became a patient of his thanks to his CVD and subsequent CABG surgery, I was still the only one he treated. Very few doctors and no nurse, including cardiac care unit nurses, I've ever spoken with had heard of this rare disease, either.

I know Takotsubo Syndrome has been in a lot of new reports recently with the death of Debbie Reynolds so soon after her daughter. I'm glad the word is getting out, and I hope this recent tragedy has prompted doctors here in the USA to do more reading and research on it, for their patients' sake.

It was so good when I recently found a Takotsubo Facebook community and had contact with others who have also suffered this cardiac problem. For so many of us, we're the only only people who ever heard of it, much less had it and have been treated. It seems doctors in Great Britain are more up to date on this than docs here in the USA, and they treat it more seriously than my cardiologist did. They actually keep people in the hospital for more than a day and encourage rest for the first few weeks, not push you out the door and force you into an exercise program ASAP.

And they also make the public aware of the disorder outside of tabloid news. The British Heart Foundation appears to be the UK's version of the American Heart Association, and has a monthly magazine. In this current issue they have some articles on Takotsubo Syndrome, explaining what it is, how it's treated, one woman's story, and what the future may bring. For instance, this was the first time I ever saw the warning that TSS recurrence rate is as high as 15%, and that some people never fully recover, continuing to suffer from extreme fatigue for years afterwards, even if all tests show the heart structure has returned to normal. That, along with my diagnosis of MCTD, can explain a lot of my on-going problems. 

There's just one big medical surprise after another lately.

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