Emily M. DeArdo

author

Seven Quick Takes--The Medical Saga Endeth (we think)

7 Quick Takes, CF, health, hearing loss, the bookEmily DeArdo1 Comment
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Linking up with Kelly!


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So, here’s a spicy take I wrote this week about Medicare!


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And here’s the follow up:

So, we got the great folks at the CFF involved (they have a team that just looks at insurance stuff). They came to the same conclusion we did: that there really is no plan that covers everything, but that hospitals and doctors and I will make it work. (think Cinderella’s sisters: “I’ll make it fit!”) NCH doesn’t normally have a lot of Medicare people (because, it’s a, um, Children’s hospital), but….”they’ll take it”, says the finance office. (Thank you finance office!)

What I kept hearing from everyone was “well, we haven’t had to deal with this before.” Yes, I am the one that is trail blazing for everyone else. Future generations, YOU ARE WELCOME! I expect copious floral arrangements on my grave and Masses offered after I die. :-p

So, my hospitals are (sort of) covered. My main doctors—as in, the Big Three—are covered. The next issue?

The Prograf (or, THE GRAF).


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The prograf is the med that basically keeps me alive. It keeps my lungs from realizing that they aren’t actually, um, the factory setting. :-D

Now, when I was emailing my nurse about this, she said, “Well, we can always try generic.”

“What do you mean?” quoth I. “Generic doesn’t work for me!”

“Well, the formulation is a lot better now, and the hospital is even considering switching its formulary to the generic,” nurse said.

AH! Well, that would solve problems!

Or….would it????

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So I go to the insurance site. I plug in generic prograf, expecting to see massive cost savings and ease of access!

Hahahaha.

NO.

Generic Prograf is covered—but as a tier 4 med, meaning it’s like, non-preferred, no one wants to use it, and then I see, oh, step therapy may be applied.

Step therapy, for you new people, is when you have to try other drugs first before the company will pay for the med you want.

Yeah, we’re not doing that with the drug that keeps me alive.

So, what we’re going to do is go through prior authoritzation stuff, and we won’t have to pay out the nose, because I qualify for the Medicare Extra Help program (which is a great thing, so kudos there), so we can’t pay more than a certain very low amount.

So.

I have picked a plan. The saga is over. (For this year!)


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In other news, my tree is up, and Susan the Corgi is ready to celebrate….

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And I think I’m doing buying gifts. That’s exciting. :)

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I had my first book interview on Wednesday with the delightful Fr. Patrick, O.P. We talked for forty-five minutes about all sorts of good stuff! The interview probably won’t be up until January, but when it is, I’ll let you know! I’ll be posting all media related to the book on the book’s page. . (And pre-order links, to a variety of retaliers, are there are well! Amazon US, Canada, and UK; Barnes and Noble; Indiebound….)

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Just a note about what Kelly wrote about today—how we tell the stories of the disabled.

One of the things I’ve noticed, especially as the practice euthanasia almost on demand rises, is that people don’t really understand life with a disability, or an illness. They think they do. They imagine the horrors of it.

But honestly, that isn’t the way it works.

When I lost my hearing, it was very gradual, over a period of years. It was gradual. Now, if I’d lost it all at once, yes, that would’ve been traumatic, and highly so.

Did I grieve losing my hearing? Um, yes. A lot.

But when it came to CF stuff, it was gradual. I still enjoyed my life, and I do enjoy my life, even with insanely stressful weeks like this week.

Being disabled makes things harder, but it doesn’t make my life worthless or less.