fett on 26/5/2009 at 00:37

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It used to be my habit to share my personal life here at the nuthaus, but I haven't had time lately. Now I do, so expect me to drop some heavy shit here in the next few weeks.

So my wife is finishing nursing school (for which we gave up our entire lives - best decision ever, but that's for another thread). During finals week I went to get my prescription refilled for my heart maintenance drug, and was informed that "they're no longer making it."

WAHT THE FUCK

To truly appreciate this turn of events, you have to realize that I have a rare genetic heart disease (HCM) - roughly 100,000 people in the world diagnosed. Within that itty bitty window, I'm one of about 100 people who have low blood pressure, rather than hypertension which is common with HCM. I am a unique fucking snowflake.

The medication I take is called Norpace (I actually take the generic form - Disopyramide). I take enough of this stuff to kill a small moose (600 mg's a day, down from 900 a year ago). My cardiologist doesn't know how I stay upright 'cause this stuff slows your heart to near-zombie state. The trick is that unlike most drugs for HCM (and this is crucial) it doesn't lower my already low blood pressure. Taking the Disopyramide also allows me to take a calcium channel blocker (Verapamil) that I would otherwise not be able to tolerate because it lowers blood pressure. In other words, this stuff is my lifeline. It allows me to be a husband, father, musician, writer, and the most prolific poster in the history of ttlg. :p

So long story short - without this stuff, I'm fucked. Like, on my back, in a bed, can't bend over without passing out, fucked. Disopyramide was a silver bullet for me because we'd tried everything else and although other meds stabilized the physiological heart problem, the side effects (low blood pressure) were so miserable that I honestly wanted to die. Headaches, nausea, vomitting, acid reflux, insomnia, impotence, etc. So Dispyramide has kept me stable and productive for almost ten years now.

Enter the FDA. There's only one company IN THE FUCKING WORLD that makes this stuff (the generic version which I take because the brand name costs roughly $4.50 per pill - x6 per day - you do the math). The FDA decided there was an 'administrative problem' with the company that required a recall of these particular meds. This in turn caused a rush on the brand name capsules (Norpace) by all the folks who take it (lots of older folks take it for arrhythmias, but very, very few people take it for HCM). Most who take it can simply switch to a different med without much trouble because they have associated high blood pressure. Not me. Even taking the same med made by a different company fucks me up royally for about 3-4 months because my blood pressure is even sensitive to the various chemicals used for the time release. Have you ever experienced a bp of 61/54? If you did, you don't remember it, or you're dead, in which case, why are you wasting time in commchat?

Sooooo...we ran around like crazy people trying to find some, got refill confirmations about 6 times in 3 days only to find out it was "back-ordered" when we went to pick it up every time (fucking apathetic pharmacists...). In the meantime, my supply is running dangerously low. My cardiologist was leaning toward implanting a pacemaker or other type of ICD device if the meds were truly extinct (as we thought at the time). This would keep my heart stable, but I'd have those same horrific side effects. The morning before I ran out, we found a little pharmacy in a small town nearby that had 14 bottles on the shelf. I paid out of pocket for a four month supply ($$$$$). Thank the gods for small businesses and fuck Wal-mart.

We now know that the meds will continue to be made, but warehouses won't be stocked up again until August.

It all ends happily - my wife passed her finals and graduated with her RN degree, and I didn't have to get a pacemaker (no big deal when you're 70, but I'm 38 and can only have the leads replaced about 2 times/every 7 years = FAIL).

Before you ask, a transplant is useless because my blood pressure/gradient would turn the septum in the new heart into a piece of jerky like my current model. But I don't want one because with the meds, I'm pretty much okay so long as I don't rock climb and the FDA keeps their hands to themselves.

The moral of the story is, be happy if you're healthy. To think that 100% of my quality of life depends on this chain of medicine, pharmacy, manufacturer, FDA, is really scary sometimes because it's all so impersonal. I wrestled with my 4 year old on the bed today and took both boys to the park to ride their bikes and fly kites.

It's good to be alive. :)

Thief13x on 26/5/2009 at 02:29

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Atleast they havn't stopped making beer

YET

Dia on 26/5/2009 at 03:20

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What catbarf said. I'm glad you're okay fett. Srsly.

Muzman on 26/5/2009 at 03:44

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Yowch. So they didn't recall the generic line because there was something wrong with it? Or I guess they didn't say one way or the other.
Scary. Has there been any indication that the cheaper one might come back yet or is it too soon?

fett on 26/5/2009 at 04:26

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Supposedly the company that makes the generic (Ethex) is sorting out their paperwork problem and should resume production again in the future. In the meantime, the maker of the brand name (Pfizer) has already boosted production to make up for the shortage - it just takes awhile to get the ball rolling and restock the warehouses.

The biggest lesson I've learned is one I should have already known. I live in Bentonville Arkansas, which is Wal-Mart central. Wal-Mart is 2 minutes from my house and it's easier for me to make one trip there to get everything. Ironically, the single stop is easier for me physically, especially with my 4 year old in tow. Paper goods, groceries, batteries, blank media, meds, all in one stop. But when it came to this, the Wal-Mart pharmacy literally did not give a fuck. Since my prescription is on file with them, I went to three different WM stores to try to get it filled. Even after explaining to them the whole "threat of pacemaker" thing if I didn't find the meds (which I LOATHE doing because it makes me sound like a freak or a drug fiend, despite the fact that this is a maintenance med), their basic attitude was "it sucks to be you...when's my break?"

Conversely, the mom and pop pharmacy actually expressed concern, called their distributor, purposely placed a smaller order to avoid the "back-ordered" problem, and called me when the meds arrived the following day.

Since my wife is out of school now and we're sharing the shopping, we go to three different, smaller, locally owned stores for everything we need. Wal-Mart won't get another penny of my money. At least until they buy out the IRS and start managing our tax monies.

BA - Several people have asked, so I figured it's easier to 'splain it all here. Wait till my religion thread in a few weeks. I've been saving up. :)