4:45pm August 15, 2014

➸ Whoever sent me the drainage bag is a saint.

youneedacat:

dendriforming:

clatterbane:

youneedacat:

Seriously.

You don’t know how much I need those, and how much I have to get by on one, hoping it won’t break. Ideally I have two, so that if one breaks I have a backup. Often I have to do horrible repair jobs that leave them leaking bile all over me at night.

They’re generally around $80 a piece…

I am impressed yet again at the absurd markup on medical items.

I mean, I know very well that’s a problem, but when they can seriously charge $80 for a plastic bag with some fittings because they know people have to buy them anyway…that makes me really mad.

I am also very sorry that supplies like this aren’t always covered, or they won’t pay for nearly as much as you need. The whole thing is terrible.

Don’t even get me started on HyperSal. (Name brand salt water, packaged into little ampules. I was paying $40 for the stuff before I figured out how to ask for generic. I get that they have to sterilize it, but that still doesn’t justify the price.)

I couldn’t even get generic at that low a price.

I make all my hypertonic saline in a pressure canner. Even buying all the jar lids and equipment and crap it’s still cheaper than buying the fucking overpriced 7% saltwater.

The $40 was a copay. The generic I think I pay a $10 copay. If you can’t get it covered by insurance, I expect it is much higher.

Yep. Can’t get it covered by insurance, so it was like… over $100-200 most of the time.

Can’t get it covered by insurance because apparently people with bronchiectasis don’t need it unless we also have cystic fibrosis. At least, that’s what Medicare kept telling me after multiple levels of appeals. Medicare has these bizarre rules where they will deny something categorically to anyone who doesn’t have a certain diagnosis.

And basically, they will deny everything that functions the way 7% saline functions, to anyone who doesn’t have cystic fibrosis. Even if we have something like bronchiectasis that renders us in a pretty similar position in terms of phlegm buildup. Like they won’t cover phlegm-thinning meds either.

So, since I just have bronchiectasis, I’m out of luck when it comes to getting treatments for it. It doesn’t help that it’s very rare for Americans to have bronchiectasis without also having cystic fibrosis, because CF is the most common cause of it besides vaccine-preventable diseases that are mostly gone in the USA by now. I got bronchiectasis through spectacular medical neglect during a series of infections and exposure to concrete dust and other crap that all happened around the same time – the same sort of reasons that bronchiectasis is usually nonexistent in places with decent healthcare. I wasn’t getting decent healthcare, or in many cases healthcare at all.

Bronchiectasis is generally better to have than CF, but if you don’t treat it, it goes into a downward spiral ending in death. So it really pisses me off that they don’t cover any treatments. They’re basically saying “This is rare enough in our country in people without CF that we’re not going to bother to care if you live or die, and we’re not going to think about people from countries where people still get it as a matter of course from childhood infections.”