This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

I received an e-mail from the maker of a medicine for RSV, a severe type of cold, that RSV season is coming to a close.

I don’t think I ever wrapped up my fight with insurance on this issue here. Sorry!

Consider this post, ‘Fighting with insurance, part 3.

Eli never got the medicine for RSV. RSV would put his lungs at risk for serious infection. ’cause, ya know, he’s got a deadly disease that steals lung function over time. So let’s NOT give it to him, ’cause that makes sense! He also never got RSV. We washed our hands this winter until our knuckles bled.

Doesn’t matter that he never got RSV – the issue was a thorn in my side for five months.

I met a woman in Washington DC whose 1-year-old was also denied Synagis. Sweet Sutton Grace did develop pneumonia after contracting RSV and had to be hospitalized.

I try not to swear (in theory) because my dead mother finds it extremely tacky. To the point it’s tack-O.

Some things just make me wanna go: $%#$^%$%$%@#$@#%@#$#@$@#%@#^%@#$%. And @#$&^#$% #$%&^ #$^$&.

I could never figure out how that all went down — an insurance company, and the drug’s maker, not giving Eli the shots, through 4 appeals and a grant application.

Then, also at the CF Volunteer Leadership conference I went to in DC, a pediatric pulmonology angel flew down and tapped me on the shoulder. She had the answers. She had the key!

And it made me want to dig my Doc Martins out of my dad’s attic and rage like it’s 1994.

I’m going to write more about her when I get my notes in order.

Just wanted to note: RSV season is coming to a close.

Thanks for nothin,’ drug maker and insurer!

@#$$%^ @#%!.

John Stossel mustache give me a break.

Give me my meds naughty people in charge! Ra!

Give me my meds naughty people in charge! Ra!

One thought on “RSV season is coming to a close, and @!#$#$^@#$@#%@

  1. sethinaw says:

    Reblogged this on mummymedic and commented:
    From another CF parent. Meet the lovely Eli #cfawareness


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