Friday, April 30, 2010

Bloody paperwork

Even though infusions can be stressful (especially the first few), you need to remember to keep a record of each one.  The information that is recorded on these logs can be an invaluable tool for dealing with insurance companies, doctors, and factor producers, as well as tracking bleed patterns. (Or so I'm told).

You can find all different kinds of infusion logs online.  Here are examples from Coram and Hemophilia Navigator.  I actually have no idea who the heck either of those are, but they came up high in the google search... so there you go.  I actually do like the format of both of these forms.  I think that these are designed to be printed out.

I decided to keep both paper and online infusion logs.  I did a spreadsheet in gmail (free and easy) because it is web based and I can access it from any computer, not just my own. ( I'm keeping paper ones as well, because I'm pretty sure that some kind of meteorite or the swine flu or Al Gore will eventually kill the internet.)  

On my sister's advice, along with all pertinent information about the infusion, I also included insurance information on my spreadsheet.  (Cost, amount covered by insurance, amount owed, etc.)  Apparently, some insurance companies get all uppity about paying their bills.

You can also get free infusion logs from makers of factor products and all of the associated gear.  Ask your local treatment center if there's any good stuff that they've got lying around or if there are any resources that might be available.  I have a really cool little one that comes in it's own little spiral binder... now if only I can find that thing.

Thursday, April 15, 2010

Bloody Bling

It's hard to get a medicalert bracelet around a cankle, but it can be done.  Oh yes, it can be done.

Bleed Shmeed also known as I'm Not Afraid Of No Stinkin' Needles also known as the First Infusion

This is what happens when you think that it looks like fun to scale the leg of a piano at your church, but then you think "hey, I'm 6 months old.  I'm pretty sure I'm not supposed to try the whole walking thing yet."  Then, because your confidence has been shaken, you lose your grip and try to spin around like a tortoise flipped onto his back, but instead you land on the foot/leg/edge of the piano... and you think to yourself  "well at least I led with my head... oh wait... umm... a little ice here?"

Then, because emergency rooms are good times on Wednesday evenings, and because you don't fancy walking around with what appears to be half a $.25 gumball sticking out of your forehead... you book yourself a room on over there for your first infusion.

Nurse... nurse... doctor.... nurse.... insurance checker lady... nurse...nurse... needle.  (You knew she looked like trouble... with her purple gloves and beeping thermometers and fancy "oh, you're so cute" talk...)

It's all okay though...because your mom is there, with the singing and the whispering in your ear and her boob exposed to half of OHSU because she really believes that anything can be cured if you just put a little breast milk on it ... and if she can nurse on an airplane while sitting between a lesbian whose partner is expecting their first child and is super chatty about it and a 275 pound man who clearly didn't know that that's what those things are for... then she can nurse you on the exam table while being pumped full of clotting factor... especially since she's been saying over and over "This is not scary.  I can do this" all the way from your house to the hospital... where you got the medicine that makes your head look like this... which is a lot better then how it looked when you got there.

So it's all good ...but all the same... if you ever see that nurse again... you're gonna give her one of these...