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11:05pm June 29, 2013

A message to my followers (or anyone else) with cystic fibrosis

84thlife:

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Since I couldn’t respond to your ask post about bronchiectasis without CF.  I wanted to add another few things of information as someone else with bronchiectasis but not cystic fibrosis.

Many vaccine preventable childhood diseases can cause bronchiectasis.

And also. In my case I got it from medical neglect.  This was related to being in low income housing where they had concrete and wall board dust without evacuating us. And then later for other reasons I got a bad lung infection. I have developmental disabilities and this causes many doctors to not give me adequate treatment and not to believe me when things are bad.  So I had this infection for months and they literally yelled at me to get out of the ER when asthma treatment didn’t work.

And it turned out I had pneumonia and part of my lung collapsed. Shortly after I was diagnosed with bronchiectasis. They think maybe the combination of the dust, and the letting an infection get so bad.

Since then I’ve had pneumonia tons of times. From the feel of it my bronchiectasis is probably worse.  I have gastroparesis which causes stomach fluid to go into my lungs, which causes lots of aspiration pneumonia.

Here’s the fun part.

None of my treatments are covered by Medicare or Medicaid except antibiotics.

Because I don’t have cystic fibrosis.

Don’t get me wrong. I don’t want CF.

But I do want the rules to be different for treatments.

I have to make my own seven percent saline from scratch and sterilize it in my friends pressure cooker. Because to buy it costs more than I can afford.

Also use a flutter valve and get  antibiotics at the first sign of aspiration or infection. And have a feeding tube to drain stomach contents and bypass stomach for feeding, both of which prevent aspiration.   Luckily I’m mild, but mild bronchiectasis is still a serious pain in the ass. I’m on supplemental oxygen. And breathing is hard work both for that and neuromuscular reasons so sometimes my bipap becomes a makeshift ventilator.

I’m hoping it never gets much worse than this because I’d never make a transplant list because I’m autistic. I had to fight just for the feeding tube instead of letting me die, so transplant would be hard even if I qualified.

But yeah they just assume here that if you have bronchiectasis you must have CF. It is so rare here I almost didn’t get tested. So if you need treatments you are often out of luck if you don’t also have CF.

(This is why I sometimes read the CF tag because I know lots of people there have bronchiectasis.)