Monday, March 26, 2012



While I was at Club MGH last month, my hematologist wasn't convinced that I really am responsive to DDAVP - the drug used to help control my bleeding when I have "a bleeding incident" due to my von Willebrands. The result is that I got to spend six hours this morning back at Club MGH (again with a great view!) doing a DDAVP Challenge. This is how it works:

8am: show up at Pediatric Infusion Office, confused about why I'm being sent to Pediatrics. (I may act five years old, but I'm not.) Realize that the scheduler in my hemo's office sent me to the wrong place, go down the hall to the Big People Infusion Office and check in.
9am: Nurse shows me to my chair, home for the next half day, and comments on what a great view I have.
9:15am: Lots and lots of blood is drawn. Some to establish baselines for the DDAVP challenge, some to test (for the second time) that I really do have Type 2B vWD, because when they ran the test the first time my proteins were doing crazy things that could mean I don't have vWD but instead have some other very very rare blood disorder.
9:25(ish)am: Nurse starts the drip of DDAVP, then leaves to hand deliver all the blood she stole from me to the lab.
9:30am: Face is on fire. I can feel my pulse pounding as if it's out of control. My lips and mouth are super tingly. I'm seeing lots of stars. This is 100% normal for a DDAVP drip, but knowing that and having been through it before doesn't make it feel any less bizarre.
9:46am: DDAVP drip is complete. T-minus one hour until next blood draw!
10:46am: Time for the next blood draw to see if the DDAVP is doing anything. Much reading has been done, as has much lamenting of the fact that I didn't know I would have a personal TV and DVD player, so I should have gone to Red Box. The lamenting is exaggerated by the fact that the woman across from me has a friend with her, who was smart and brought The Hangover II, so I have to listen to them breaking into hysterics every two minutes.
11:45(ish)am: The super sweet and awesome volunteers come around with lunch. Turkey sandwich, fruit cup, and water. Not the tastiest lunch ever, but I didn't even expect to be fed, so I was pretty happy. Reading is getting old, so it's time to take advantage of this personal TV.
12:00pm: You know what stinks? Day time TV. Even when you have cable channels available to you.
1:46pm: Final blood draw! Woohooo! This one tells them if the DDAVP has moved out of my system too quickly, I think. Lucky for me, all of my blood draws today were through the extra fancy IV, so I get to leave with only one hole and not a single "Oops! I missed the vein!" bruise.
2:00pm: Adios, Club MGH! Time for a (chilly, but sunny) walk down Charles Street on my way home.

My nurse was awesome! She knew more about vWD than some medical professionals I've dealt with in the past (*cough*DrEricfromtheERinBaltimore*cough*), and had administered DDAVP challenges before so was super sweet, making sure I knew about and felt okay when I started feeling flush and tingly. The volunteers that came around with snacks and lunch were also awesome, as was the random gentleman that was there with his wife while she was getting an infusion, who would check with me to see if I wanted anything every time he passed by to get his wife a snack or drink. (I know he has no affiliation with the hospital, but he made me smile so I thought I should mention him, too.)

I can't say enough how great everyone I've dealt with at MGH in the last few months has been. I feel like you go into any kind of hospital visit or extended dealing with the hospital and expect it to be a complete mess, but even with the few hiccups I've had since I was admitted in February, it's been super easy and almost pleasant to go to all of the appointments I've had!

1 comment:

Jen said...

I hope everything works out for you Sarah.

I had never heard of von Willebrands until I read this blog post.