Musings of a Marfan Mom

May 27, 2009
by marfmom
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Stress Test: Dressed to Impress

Today I got to look like an alien. Or maybe an astronaut. I’m not really sure which, but either way you should be Totally Jealous!

A few weeks ago, my cardiologist told me I needed to get a stress test done, to see if it’s my heart that’s causing me to be short of breath, or if it’s my lungs, or if I’m just a complete crazy person (my choice of words, not his). “We’ll even do it on the brand new, high-tech machine!” he said. His excitement was palpable. [I started to type I’m not so nerdy that I get thrilled over a piece of medical equipment, but then I remembered how I’d gotten the same look in my eyes when our band director let me be the first to try out our high school’s new vibraphone. Guilty as charged.]

Anyway, I don’t know if any of you have ever had a stress test, but I think it got its name from how much it stresses you out ahead of time to know you’re getting one. Seriously, in all the medical tests and procedures that I’ve had, this is the first one I remember signing a consent form for that read in Big Bold Font: YOU MIGHT HAVE A HEART ATTACK AND/OR DIE. Typing this out now it’s actually pretty funny, but this afternoon it was vagually unsettling.

First, I had a quick echocardiogram to get a baseline reading for how well my heart is functioning. Unlike my normal echos though, I had 13 stickers placed all over my chest and belly, upon which 13 leads were placed, which all went into a box that sat on a belt, which went around my waist (got all that?). Because I would need to rush back from the treadmill to the bed for a 2nd echo, I couldn’t wear my robe normally, so the tech tied it around me toga style. Then I got a fancy blood pressure cuff that had a speaker attached to it so that the tech could hear my heart beat. And after that came the “ET” oxygen sensor (you know, the one that goes around your finger and glows red like ET?). The crowning glory? The oxygen mask. Only problem is, I have a ridgeless nose, so none of the masks would fit me without creating leaks. This meant that instead of a mask, I had to have a series of hard plastic tubing in my mouth and a clothespin-like cover over my nose. The tubing was rather heavy, so it protruded from my bottom lip…making me look a bit like a chimpanzee. And did I mention I was so busy with Menininho this morning and trying to get out the door that I forgot to brush my hair?

Ladies and Gents: I’m bringing sexy back.

Last to do before starting the test was for me to tell the tech the maximum amount of activity I could do without being winded. Their chart left something to be desired. I mean, is social dancing really easier than pushing a lawn mower? And is carrying a small child up a flight of stairs more difficult than lifting 60 pounds? Have I ever actually pushed a lawn mower?

Finally she started the treadmill. I ended up having to hold the oxygen contraption in my mouth with one hand and hold on to the handlebar of the treadmill in the other as I walked faster and faster. I’ll spare you the details of how it felt to keep going till it felt “very, very hard” (#17 on a scale of 20, in case you were wondering). When I couldn’t go anymore, I signaled to the tech to stop the treadmill, then stumbled back onto the bed for my 2nd echo. I finished out the round of exams with some quick pulmonary function tests and the promise that if I’m a good girl, maybe I can come back in a few weeks for more (dare I hope?!).

May 23, 2009
by marfmom
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Giveaway

Not too long ago, a good friend of mine and I were the recipients of a generous Internet giveaway from people that we did not even know. I figured the only way to pay this kindness back would be to pay it forward. I’ve seen various forms of the giveaway below, and figured it would be a good one to use.

Here’s the deal. The first 5 people to leave a comment here will get a homemade gift from me. It doesn’t matter if I don’t know you. If you’re just randomly blog stalking (c’mon, we all do it) and you come across this post and want to be one of the first 5 to leave a comment, go for it! The only catch is that you have to pay the gift forward by reposting this on your blog/Facebook/Myspace. I will check to make sure you’ve done so.

I don’t know what the gift will be, but it will be homemade. I’ll get it to you sometime this year (but probably sooner than later so I don’t have it looming over my head). I don’t promise you’ll love it, but I’m not going to make you something I think you’ll hate, either, because that would be like an un-gift and defeat the entire purpose.

May 21, 2009
by marfmom
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The 3 Cs

We just got back from a whirlwind weekend in 3 of Ohio’s Cs: Columbus, Cumberland, and Cleveland. I’m still in awe of how much we managed to squeeze in. Menininho was beyond a champ! I just wished we’d had more time to see people.

We got in Friday evening. I’m convinced that there are 2 keys to an easy flight with an infant: a Boppy and a sling.  Menininho loved laying on the Boppy in my lap, which freed up my hands some. When he was ready for a nap, I just rocked him to sleep in the sling and then I could nap, too, since he wasn’t going anywhere.

It took forever to get our rental car (the company was out of small cars, even though that’s what we ordered, so they gave us a free “upgrade”: a jeep SUV. PERFECT for our cross-state roadtrip…not.) We met my brother Matt and his girlfriend, Deanna, at Polaris for dinner, then hung out at his apartment for a bit. It’s the last time I see Matt for a long time…he’s moving to New Orleans in a few weeks 🙁

Sat. morning Menininho and I had brunch with two of my girlfriends from grad school. To those of you in Columbus: I really recommend Vic’s Cafe on W. 5th street!   Then, it was off to Cumberland for Chris and Erica’s wedding!

Chris and I have been friends since freshman year of high school. He and I were both in the percussion section. Freshman year we were part of a group of guys (I was the only girl) who would get to band early to play euchre. I’ve always been able to count on Chris. He even drove down from Ashland to come to Dad’s funeral. Every year we still get together at my place on New Year’s Eve with a couple of other guys from HS. I first met Erica at one of these parties, and I liked her right away. She is absolutely perfect for Chris and it just made my week that I was able to be at their wedding.


We left the reception a little early to make it to Cleveland at a reasonable hour.  Menininho slept great and we were at Case early in the morning Sunday for Mark’s graduation. He had left the tickets for the Commencement ceremony (which is separate from the diploma ceremony) at home, so I needed to walk across campus to get spare tickets from one of my girlfriends. However, I ran into a little problem.

See, thanks to my pregnancy, I don’t quite fit into my dress shoes anymore. I’ve been living in my black flip flops. Old Navy flip flops really are the best. They’re cheap and form to my feet. I was just thinking the other day though, that I’ve had these for almost 2 years and maybe I should get new ones. Turns out I shouldn’t have procrastinated so much. Partway across campus my left shoe broke. Beyond repair. Mark ended up taking off one of his dress socks and putting it on my foot so I wouldn’t need to walk all the way across campus barefoot in the freezing cold. Fortunately for me, the bookstore had opened at 8 for all those graduates who had procrastinated getting their robes, and they had one pair of flip flops left in just one size smaller than mine. Whew!

The graduation ceremony was really nice. Menininho and I got to walk across the stage with Mark.

It was a great trip! Hopefully we’ll be back (longer!) for Thanksgiving 🙂