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The Chronic Illness New Year

The start of a new year is great right? You watch the ball drop, raise a glass, make resolutions–all that good stuff. January first comes around each year and you feel a sense of a fresh start. You look back on the previous year and see how far you’ve come; you look forward into the new year that holds all sorts of possibilities. Great. But for those of us who deal with chronic, significant health issues the new year means something else as well.

It’s something we dread.

It starts not on January 1, but with the first major medical necessity of the new year.

For me, and my PI homies out there that is generally our first infusion shipment of the year.

You dial the specialty pharmacy number with a knot in your stomach, you try to sound normal as you go through all the normal shipment info, then the moment arrives– with trembling hand you hold the phone to your ear and wait for the bomb to drop. Your copay amount.

You see, the new year means that the deductible you met last year is all gone and you have a fresh pile of money you have to toss into the insurance pit before you’ll get decent coverage.

It also means that your insurance company can make all sorts of changes that come into effect with the new year–maybe they’ll move your infusion medication to a different tier on their covered medications meaning they cover less of it, maybe they’ll increase the cost of your medication, maybe they’ll make you switch to a whole different one because they no longer cover the one you’re on… The terrifying possibilities are nearly endless.

This past week the Chronic Illness New Year hit me and my family hard. I went to order my months supply of Gamunex-c and infusion supplies to be met with the wonderful surprise of my copay increasing from $250 (but actually zero because our deductible had been met with copay assistance from the wonderful folks at Gammagard before I was forced to switch) to $600.

For those of you who aren’t familiar with Ig infusions, this may seem like an impossible amount (and really it should be), but the sad fact is that this is a problem continually faced by those who need Ig infusions and their families.

Luckily most Ig companies provide copay assistance to those who use their product and need help paying for it (which is basically everybody). After my wonderful doc and I jumped through several hoops, it looks like I will be able to get copay assistance starting next month from my new buds at Gamunex. But even with assistance many families still have to shell out a considerable amount before the year’s deductible is met.

As I’m writing this I’m thinking I really, really wish that I didn’t have to know so much about health insurance already. But I’m also thinking despite the hoops, the bills, the stress, and all the wonders of the Chronic Illness New Year, I’m just so grateful to be able to have the Ig infusions. I’m so grateful that my immunodeficiency was able to be diagnosed and there is this treatment. And it does help. A lot.

So Happy Chronic Illness New Year! May the odds be ever in your favor…

Another Not-So-Smooth Start to a Semester

If you’ve been following me for a while you’ll remember that my last semester started off with being unable to get my infusion for three weeks and then coming down with whooping cough. Needless to say I was hoping for things to go a bit smoother this semester. But that’s not really how life works I guess.

Thursday was our first day of classes. I had three classes (French, Screen Writing and Dramatic Literature) and a meeting to update my accommodations letter. While I was in Screen Writing I got the bad news–my sister and niece had started throwing up after I left for class. We had the dreaded stomach flu in our home.

The last time I had a stomach virus I was a brand-new 19-year-old. That virus damaged my digestive system, causing gastroparesis (literally “stomach paralysis”), and leading to some very miserable months and ultimately two years away from school. So naturally I have an intense fear of dear old norovirus and all its relatives.

Egged on by this fear I did everything I could to avoid coming down with it this time img_0084around, but by the time I became aware of its presence it was far too late. That night around 9:30 I threw up for the first time. And then again. And again. And again. Until about 5 or so in the morning. *shiver* The stomach flu is the WORST. Every time I have it I get like minor PTSD where for a while I can’t stand certain foods, clothes, tv shows, movies–anything that is associated with the experience. This is especially true for the virus that permanently messed up my digestive system and changed my life.

EA57ED6A-C454-4F26-A275-0833E9EACA3BBut like I’ve said before, even the worst of things pass, and so did this. Well it’s passing. Friday I was still quite sick and miserable, even though I had stopped involuntarily ejecting the contents of my stomach and intestines. Mostly I had gotten really dehydrated and I was having a hard time getting sufficiently rehydrated. I ended up going into the local urgent care in the afternoon because of this; they did not give me a saline IV as I had hoped they would, but they gave me some strong anti nausea medicine to help me be able to sleep and drink more. I hadn’t slept since Wednesday night so I was beyond exhausted. Later Friday (about 4), I laid down to take a nap and woke up at 9:30 the next morning!

Right now as I write this, I am doing my infusion. I didn’t want to do it until I was well hydrated again, since insufficient hydration makes the infusion process (and aftermath) seriously miserable. And I’ve had quite enough of that this weekend.

So yeah, another rough start. But I don’t think it bodes ill for the semester at large–I think it’s gunna be a great one, as a matter of fact. Because, well, why shouldn’t it be?

A Baby Disease Busted My Rib

Ok so remember how I said I had a bad case of bronchitis and then disappeared a couple weeks ago? Well it turns out I did not have bronchitis. I do almost definitely have whooping cough.

Technically the swab results from my seven hour stop off at the ER this past Wednesday

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A rare action shot of an ER patient hoping that the footsteps she hears is someone coming to tell her something useful. Also yes I’m doing hw. French.

haven’t come back yet, but my symptoms are dead on AND there has been a verified case of whooping cough at my school. Add to that my incompetent immune system that doesn’t gain immunity from vacccines annndddd. Boom. You’ve got a twenty-two-year-old with a full-blown case of whooping cough.

From the very first week of school there’s been a bad “cold” going around. I’m thinking that really, most people have had a watered-down case of whooping cough. But luckily for me, other zebras and new-borns, you don’t need to have a full case of whooping cough to give the full-blown thing to someone else.

So what does a full-blown case of whooping cough look like in an adult?

Well first you get a “cold.” It’s really not even that bad of a cold. Then after about a week you start getting a nagging cough. That gets worse for a couple weeks until you find yourself having anywhere from 15-50 coughing fits a day that are so intense you throw up and gasp for air as seemingly infinite amounts of sticky mucus obscure your airways. (In my case the very worst of the attacks only lasted for a little over a week.) Then things get just a little better. Your coughing fits are less frequent. You aren’t choking, gasping and throwing up quite so much when you cough. You stop feeling like you’re going to black out with each coughing fit. That’s where I’m at now. Apparently this bit can last anywhere from 2-10 weeks.

Oh yeah and I forgot to mention–you might cough so hard that you break, bruise or dislocate a rib or so. It freakin hurts, but don’t worry there’s not much they can do about it.

That’s maybe the worst thing about whooping cough–there’s almost nothing that can be done. If caught early enough a course of antibiotics can lessen the severity of the case, but otherwise you basically just have to ride it out.

In China whooping cough is known as the 100 days cough, because it often lasts for three months or longer. So I pulled out my calendar and counted 100 days from the day I got sick. According to Chinese tradition I should be better by December 19th, give or take a few days. I have no idea why I thought that would help. I guess I can start a count down or something. At this point I’m at least a month in so… only 70 more days to go!

This is definitely not how I wanted to start off the semester. Or finish it… But it is what it is. It’s not going to make for the smoothest semester, that’s for sure, but I’ll do my best. And that includes making a sincere effort not to vomit or pass out in class 😉

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We swiped a bunch of the ER vomit bags so we could feel like our trip hadn’t been a total waste. I carry one around everywhere to catch whatever comes up during a coughing fit.

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Doing the nebulizer. This thing is almost as old as I am and it’s still kickin! We call it the Darth Vader machine.

I Earned My Stripes with a New Zebra Record (Or Two)

Friday at , at long last, I got my Ig meds and was able to do an infusion. It had been exactly three weeks since my last infusion, beating out my previous record of time-without-an-infusion (since I’ve started infusions that is) by several days. It’s been a long three weeks.

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Had to celebrate the end of the nightmare with some Fro Yo!

Amazingly, I did not get seriously sick or get an infection this time. My previous record of two-and-a-half weeks without an infusion got me a horrible gi infection and a partially paralyzed stomach. So my family and I had good reason to be a bit worried this time, but even with classes starting and sickness already going around campus I managed to avoid any great catastrophe…

Friday night I actually set another record–the longest it has ever taken me to do a sub-q infusion. It was my first infusion of Gamunex-C (I had been on Gammagard, Aetna made me switch).

At the historic event Thursday of at last being able to set up my shipment, the nurse informed me that the rate tubing I’ve been using with Gammagard is off-label for Gamunex and so I have to use a different tubing and discard my old ones (I got to be honest this is very unlikely to happen). If you’re wondering what the difference between F900 rate tubing and 120 rate tubing is, it’s just a difference of about six inches and 2 hours. Normally I infuse (or did infuse) two 50ml syringes and each syringe takes about 30 minutes. Add in a short break in between syringes to discourage leaking and my entire infusion took 1.5 hours (not counting set up). Friday it took 1.5 hours PER SYRINGE. If you’re keeping up with my extremely complicated math, you’ll know that means it took 3 hours to infuse Friday!

Now I know what you’re thinking–shouldn’t I just be grateful to have anything to infuse? Well I am. I super duper am. But nonetheless I feel it necessary to be true to human nature and find SOMETHING to whine about, no matter how small.

How long it took is really my only complaint with the new med. Well that and I had the exact same side effects from Gamunex that I had when I infused Gammagard at twice the rate. Otherwise the only thing wrong with Gamunex-C is that it is a change–a change from a med I was very happy on and a routine I was accustomed to. But oh well. Life goes on.

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The new med!