The Punisher 5/16/2012

Hi All, 

So with this heart thing, something I always look forward is hearing test results. For me, they quantify a disease that confounds me on a daily basis. They validate what's actually going on. Much of the time (if I'm not pushing it) I feel good. Normal. I look normal. I sound normal. I'm perky and joking around. So it can get easy for me to start thinking I'm blowing this heart thing out of proportion, giving it more weight that it really has. 

Then I get test results and I'm reminded what the official story is. 

A few weeks ago I did a cardiopulmonary exercise test. This is the test where I ride the stationary bike for as long as I can, while the doc steadily increases the resistance. The point is to measure my exercise capacity and see how well my body uses oxygen and makes carbon dioxide (both indicators of heart function even though those sound lung-y).

I did this test 2 years ago and didn't do too hot. I wasn't at my sickest (this was about 6 months after diagnosis) but I was still totally wimpy. Like "can only go up 4 stairs without stopping for a break" wimpy. I feel a million times stronger now (uh, I can SO go up a flight of stairs without stopping now), so I was ready show this test how the cow eats the cabbage.

They hooked me up to heart monitors, a blood pressure cuff, a pulse reader that is styled like an 80's jazzercise headband, and had me wear a mask from the Hannibal Lecter collection. They wanted me to be comfortable, you see. Then we were off to the races! 

The first 10-12 minutes weren't too bad. Tiring, but okay. Then the doctor (who I'll now call "The Punisher") started cranking up the resistance. Ok, now my heart hurts. And my lungs hurt. And I feel like I'm gonna barf. The Punisher says "Go! Go! Go!". I wonder how I can barf with the mask on. But I keep plowing ahead. For a full 18 minutes- not too shabby.

I told the doc I felt way better about this test compared to the last one. Like worlds better. Plus, I can do so much more in my day-to-day life. I was stoked. 

Then I get the results today. 2 years ago, my score was 50% (normal is around 80%). This time I was at 49%. Now a 1% drop is nothing to even pay attention to; it's essentially equivalent. But to me, the problem is that I thought I was going to knock this one out of the park. Obviously, not be normal, but at least see a good size jump. And I got nothing. 

The threshold where this test becomes an indicator for heart transplant is about 35%. So I'm doing okay, but slipping into the 40s is a little disconcerting. I guess it just makes me feel like my body is lying to me when I feel so good. 

In reality, this test result isn't that bad. It's more of a non-event. But it is causing me a little unsettled feeling tonight. I'm sure by tomorrow it'll just be one more test to add to the pile.

The upside is I now have a doctor called "The Punisher". Very professional wrestling, huh? : )
Lots of love, 


  1. I can relate so closely to the sporadic feelings of maybe blowing the whole health thing out of proportion. And then you have a scare that shoots you firmly back to reality. I'm sorry to hear about your disappointment, but I'm glad to know you haven't gotten any worse. And so happy to hear that you are feeling okay most of the time. Hang in there, girl!

  2. Yeah I know exactly how you feel. I also have DCM and it has already been 11 months. The doctors aren't optimistic anymore. I also feel normal probably as a result of my medications.

    These lines struck me the most:

    "Then I get test results and I'm reminded what the official story is."


    "I told the doc I felt way better about this test compared to the last one. Like worlds better. Plus, I can do so much more in my day-to-day life. I was stoked."

    It really bring one down to see the test results. It sucks to be reminded, rather objectively, that you are sick! Anyhow, I'm glad I stumbled upon your blog. The more I learned about how common heart conditions are, the more I feel closer to "normal"; or maybe it's the other way around--my concept of a "normal life" now encompasses life's imperfections. It makes me feel psychologically better to embrace the fact that we all are flawed in one way or another.

    Thanks for sharing your story! I'm too lazy to blog. :)