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Saturday, August 17, 2013

Where is Semi Colon?


At home?
No.

In the hospital?
No, not exactly…

On vacation?
Well…not exactly…

Somewhere in between.

This weekend, I am participating in a clinical trial! This is very cool! For once, I get to use my health issues to 1) help others who are suffering, and 2) bank a little bit off of my disease, and 3) get a nice “weekend away.” I don’t really see any downsides to this deal!

My standing heart rate before Midodrine
How did this come about? Well, back in the spring, I started Midodrine, a medicine for my POTS, that has changed my life (no exaggeration). Before starting this med, I got out of bed maybe four hours a day, on a good day. Most of my time was spent laying down in bed. Standing (and even sitting) caused my heart rate to skyrocket, I’d shake all over, get sweaty, nauseated, confused, dizzy, lightheaded…not fun.

Since starting midodrine, I’ve gone back to school full time and been able to live independently again (mostly) for the first time in three years! I still need a fair amount of extra help, have bad days, spend a lot of time in bed, and my stamina is still not great, but overall, my POTS symptoms are SO MUCH BETTER. My heart rate at rest is now about 15-20 beats per minute lower than it used to be, and my heart rate when I stand up is an unbelievable 30-60 bpm lower! My body used to feel like it was having a panic attack all the time - as if I were constantly in "fight-or-flight" mode. Now, it feels much “calmer” overall. I feel much more energetic than I used to – and my family, friends and even my doctors have picked up on this. JP Dr asked what had changed, commenting, “You usually look (forgive me for saying this) half-dead, but you look so much perkier now!”

Anyways, the manufacturers of the medicine lack some data for the FDA. They must submit this data ASAP, or else the FDA could withdraw midodrine from the market! This would be devastating for the thousands of people with dysautonomia who literally depend on midodrine to be able to get out of bed! All that they need to submit is evidence that midodrine works.

So, this translates into me spending two weekends (one now, one in a few weeks) at my doctor’s office (which is equipped with a shower, kitchenette, and bedroom with a very comfortable large bed and a very soft chocolate-colored blanket (I’m a sucker for soft blankets! They take my pain levels down better than medicine!). While I’m at the clinic, my vital signs are taken at night, early in the morning (before I take my medicine), and then again as I take my medicine. Then, an hour or so after taking the medicine, my heart rate and blood pressure are recorded every two minutes as I stand (or sit, as I get dizzy) for 12-15 minutes. I rate my symptoms on standing (if I feel dizzy, lightheaded, etc). This is repeated on two mornings. Once we’re done with the testing, I am free to do whatever I’d like to do with my day (within reason, of course). I simply must be back and ready for evening vital signs. I was tired today, so I stayed in and rested, mostly, but did make a Target run and dropped by a friend’s house. Now I’m in for the night, and tomorrow morning they will repeat the same drill with vital signs and medication!

In a few weeks, I will return for a similar weekend routine – except this time, instead of me taking my medicine, they will give me a pill – it may be midodrine, or it may be a sugar pill – and perform the same tests, then compare the results. Obviously we would expect that my vital signs would be more stable on the midodrine than on a placebo, and the FDA needs data regarding this.

In addition to helping midodrine stay on the market, I actually receive a stipend for my participation in the study! This is awesome. I’m getting paid for being sick! If only I could turn this into a more permanent thing… ;) Oh yeah, that’s called “Disability.” Anyways, I plan to use this money to help fund some treatments that my doctors have advised me to pursue but aren’t covered by insurance.  

Not only am I getting paid to take my medicine, but I am also being fed while I’m here at the office.
The research nurse even brought me a bunch of purple Powerade – and those of you who know me know that that’s the way to my heart! I must drink 2-4 liters of fluid per day, and a lot of that is in the form of half-strength sports beverages with added salt (and, per dentists’ orders, I now follow each swallow of gatorade with water to try to minimize the sugar on my poor teeth). So seeing that 8-pack of purple powerade…what a beautiful sight… mmmm…. ;)

At my last visit this spring, Dr. House indicated that I could increase my midodrine slowly, which I’d been doing over several weeks. I had reached what I thought was the maximum dose he said I could take. Turns out, however, that I can take up to THREE TIMES as much as I’m on now… and in fact, he wants me to continue increasing my dosage to gain better control of my POTS! We won’t change my dosage until after I’m done participating in the clinical trial, but I am already excited! If I feel this much better on 1/3 of the goal dosage, imagine how good I’ll feel once I get on a higher amount!

Goodnight from under the fuzzy chocolate-colored blanket,

Hannah ;)

1 comment:

  1. Good night little girl.
    I hope you sleep well.
    And, now, go to sleep...
    God bless you.
    Mama

    ReplyDelete