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, 

The land of milk and honey- 5/5/2012

Hi All!

My dear friend Rosa asked if I quit writing the blog and I told her I hadn't  done it lately because nothing very interesting has happened heart-wise. But I guess that's news huh? :)

So here's the run down:

Hospital stays: Not since mid-November. I hate to say this, but I miss it a little. Where else are you treated like a celebrity, given apple juice anytime you get a hankering, and wheeled anywhere you want to go (as long as that is the x-ray room or the CAT scanner)? Nowhere. And all this for a mere $3,000 per day.

Sparky action: Not since mid-November

Energy: Pretty excellent. Most days I can do 3 "things" (a "thing" is like a trip to the grocery store, laundry, happy hour, rehab, going to a movie, school. There are obviously priorities there...happy hour and movies. Oh! I found a place around here where you can do both! That was a happy 2 hours.)

Heart Rhythms: Mostly good. Nothing that has required Sparky attention (see above) but I still do have lots of skipped or extra beats that make me lose my breath for a second and my eyes get big and I gasp. Not a big deal except I do find that it happens at inappropriate times, like when the librarian says "these books are due on May 14th" and I gasp. Or when a gentleman introduces me to his wife. 

Cardiac Rehab: Quite well. My time on the bike and the treadmill is increasing and I rarely feel like I'm going to pass out (this is a marked improvement). Since I've become a real fixture at that hospital, the parking lot attendant and I have formed a bond. His name is Abdul and he's from Somalia. He always says "Hello my friend!" which I totally like. He also tells me how Somalia is the land of milk and honey, has perfect beach weather and is full of lovely people. He routinely encourages me to visit. I haven't broached the issue of piracy yet. We're not THAT good of friends.

Up Next: I have my big cardiologist appointment in late June, but I've learned those things are incredibly anti-climatic. She will probably just tell me we'll just keep plugging along and see what happens with my heart. The one thing we'll look at is my heart ultrasound to see how much blood my heart is pumping with each squeeze. Last time it took a dive to 17% (from about 24%. Remember 60-70% is normal) so we'll see what happens. I'm expecting it to be in the 20-25% range but honestly, there's no way to tell. It's not really connected to how I feel. However, it is the main test to determine how close I am to heart transplant time, so it's very important for that reason. So we'll see!

All things considered, I feel great these days and I'm very grateful for that. I'm happy as a clam, and all is well at Hotelli Morrelli. What more can a girl ask for? : )

Love to you all,