This is not a photo of Phil but of the new man bra life vest he’ll be wearing. And to be clear, his eating habits and lifestyle have nothing to do with his heart condition. He doesn’t have clogged arteries. He has electrical problems. I believe he has genetic problems, and that I need to have the sprouts checked out (if only so in the future we have a control, some record). Phil’s cardiologist gave me two names of pediatric cardiologists here in Austin. The onset of Phil’s symptoms weren’t until late in life, so it’s unlikely they’ll find anything, but it’s still good to check, and then figure out how regularly to get the kids checked from there.
Phil’s on his way home now. He had a scheduled appointment at a doctor’s office, where they’d take blood, add a good helping of radiation to that blood, then put it back into him. That’s right, radiate him, on purpose. I can’t help thinking about the lead vest they make you wear at the dentist’s office, how we’re supposed to avoid things like radiation, unless we’re dealing with cancer, which thank God, we’re not. Next, they do a scan of his heart, a MUGA, for a much more accurate reading of his Ejection Fraction (how much blood is pumped out of your heart). A healthy person has ejection fractions between 50% and 60%. Phil’s we just learned today is at 20% and is trending down. It would be one thing, if we knew he was sticking at 40%, and over time, as we watched it, it stayed there, or was going up. But each time they monitor Phil and check his ejection fraction (over months now), each time, it’s a lot lower. His doctors are very worried.
Phil just walked in, and Lucas and I ran over to hug him (Abigail was holding out for a Gummy Vitamin), to find out how he was feeling, how it went. "I’m dying," he said with a laugh. Well, we’re all dying, I thought. "She’s really worried," he said about his doctor. He never admits the weight of things to me, or others, always playing them down, refusing to admit the severity of any news. But this time, he was still very short with his answers, cracking jokes, but he also let me know that I have every reason to worry now. "She said my heart can stop at any moment now, and I’ll just drop dead." Sudden death, I thought. It was one of the symptoms listed under cardiomyopothies. Is this really happening? Then I imagined him driving the car, with all of us in it, just dying, with his foot on the gas. I’m shaking now.
This is about him, of course. But in a moment like that, my mind goes into preparation mode, a string of inappropriate thoughts rush through me. Where are the papers? The important ones? Should we move now? Will he be here in three weeks when they install the playscape we just bought for the kids? Then I look down at Lucas, smiling, asking for more applesauce, and I think, we should get more videos of them with their father. They light up when he enters the room. How can they grow up as people who’ll end up saying, "I don’t remember my father, really. He died when I was really young." All these thoughts crowd out the sounds of the house. And I find it hard to breathe.
Phil’s father died at age 32 of a cardiomyopathy. The pump in his heart just got too weak. Phil is 41, and his heart is getting weak, weaker every time they check it.
This is a man who loves me even when my fat pants are too small. Even when rolls of fat hang out. Even when… any "even when" I can think of.
He hands me a bunch of new papers the doctor had given him. "I don’t have congestive heart failure," he said as he handed me a piece of paper titled, "What is Congestive Heart Failure?" What he has is asymptomatic LV dysfunction. This means that he feels 100% FINE! "But soon," he said, "I might not, and we obviously don’t want it to get to that point." So what do they do about it?
They put him on new drugs. More drugs. A Beta-blocker: Coreg Cr (carvedilol phosphate). Now, it’s not just blood thinner to help him avoid a stroke. It’s pills to strengthen his heart. Phil is scheduled for an ablation on March 23, which is where they burn a bunch of blood vessels in the heart, hoping to get him out of Atrial Fibrilation (which his pacemaker was unable to correct). Except now he’ll need a new pacemaker with a built-in diffibulator, except they can’t do that the same day as the ablation. So I don’t know what will happen next or first in all this. What I do know is that the list of symptoms he just handed me sound like things I could phone a doctor about on a regular basis:
Call your doctor if you have: unexplained weight gain– three pounds in a day or five pounds in a week. Yeah, while this happens to me quite regularly it’s not exactly "unexplained" now is it you cookie monster? A feeling of fullness (bloating) in your stomach. Extreme fatigue. Coughing during the night… Oh, please. Been there, live that. Still, I’m putting his doctor’s phone numbers in my cell phone.
One of the other things the doctor suggested Phil do is wear this special vest that can read his heart and set off an alarm if his ejection fraction gets too low, indicating that he go to the hospital. It’s a man bra. That he’ll need to wear at all times. Phil turns to me and says, "I feel fine. I’m not wearing that thing all the time." And I can’t help but think of the swim lessons we were planning for the kids, where we’d get in the pool with them and teach them to blow bubbles. If he has to wear this vest all the time, does it mean that when he’s showering or swimming, he’s taking that chance? Ugh. I had a playdate for the kids all set today with the neighbors, but now I’m too anxious to deal.