Hey tweeps, I decided to do a long thread about heart failure because there are SOOOO many misconceptions about it. If you read to the end I'll have a couple of asks for you!

OK so first off: heart FAILURE is not what we normally think of as heart DISEASE -- which would be

coronary artery disease. Heart failure just means that your heart can't move the blood around efficiently. In my case this has zero to do with fat building up inside my arteries, so telling me to not eat bacon or what have you is not gonna be helpful whatsoever.

There are two kinds of heart failure: systolic and diastolic. Systolic is when you heart gets big and flabby and can't pump well. Diastolic (aka preserved ejection fraction) is when your heart pumps great but can't relax enough to let in enough blood. I have diastolic, like the

Grinch! They are equally deadly.

I do not have any of the classic "causes" of heart failure. I don't smoke, am not overweight, not diabetic (in fact basically don't eat sugar), no family history, and when I first got sick I was extremely active -- bike commuter, hiker, weight

lifter, yoga player. This is what I looked like when I first got sudden onset hypertension:

Being that healthy actually ended up hurting me in the long run, because doctors REALLY want the answer to be that you need to make dietary and other lifestyle changes. And if that works for you, fantastic! It did not work for me.

The "cause" of my heart failure is super bad

hypertension aka high blood pressure which I developed quite suddenly. So for about 5 years I just tried taking one pill after another -- I think 15 in all. None of them worked very well and most of them had unacceptable side effects: everything from a cough that kept me up

all night to instant suicidal ideation. I went from cardiologist to cardiologist without any improvement.

Finally one night two years ago I was truly in despair, and did a search on this very hellsite in a last-ditch effort to find help. And I did! A very wonderful nephrologist

-- that is a kidney doctor -- named @thebyrdlab had just published a paper about something called primary hyperaldosteronism. This is the paper: https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.118.033597 He kindly put me in touch with an equally wonderful nephrologist at Stanford who has been leading my care ever

since.

You're probably wondering how the kidney -- which I thought was a dumb pump -- gave me heart failure? I did too! Turns out the HEART is a dumb pump, whereas the kidney and its associated adrenal gland do all the work of keeping you standing upright via HORMONES. In some

cases the kidney and adrenal start pumping out too many hormones and then you get hypertension. That's what happened to me.

In fact it turned out that I have a tumor in my right adrenal gland! However for a bunch of reasons they didn't want to do surgery 18 months ago in favor

of trying to control my condition with medication. That didn't work great but it was better than before and had no side effects. Also I lost good health insurance for a year by trying to get better through medication and lifestyle change, yay American health insurance system!

Then this summer I became a victim of climate change. Ironically I had left California and moved to Oregon because a cooler climate is better for me... and then in August there were wildfires here. Wildfire smoke is HELLA BAD for people with heart failure, it makes your heart

have to work overtime just to keep you alive. I had the means to escape before I died, but it was a pretty close thing and I know people who were not that lucky. Climate change kills, and not just people in the direct pathway of a fire.

Since then my BP has remained very high

and stress from a lot of life stuff has not helped at all. Due to the aneurysm I suffered in 2009, I lost some of my ability to physically deal with stress -- meaning that if I get upset about something, my blood pressure jacks up and won't come down for hours.

So now I need surgery on my kidney. There are some complications. I'm on medical leave from my job and going down to Stanford for the whole month of December to try to deal with all this. If it doesn't work, I dunno what my prognosis is but it doesn't look great.

Here are my asks for you!

1) Please take hypertension seriously
2) If you're young and healthy, look into hyperaldosteronism as a potential cause
3) Stop telling people like me to try meditation or yoga. The best case scenario is that each of them lowers BP by like 6 pts

which won't help me at all. Also fucking with your breathing is not good for heart failure. Just stop with the pseudoscience, OK?

Here is an article about heart failure if you want to read more: https://my.clevelandclinic.org/health/diseases/17069-heart-failure-understanding-heart-failure/management-and-treatment

And now that I've done all this work and pinned the thread, I will be blocking anyone who tells me to do meditation or yoga! If you don't take the time to read my thread, I don't see why I should take the time to read your crappy advice!