It’s been a tricky week for my body and my psyche. It’s the first time I’ve heard the words “heart failure” tossed around like a ping pong ball concerning ME. I have to say, it’s pretty distressing.
Let me start chronologically. Many of you probably know I’ve been dealing with pretty bad swelling in my legs, skin very red and itchy, gaining 30 lbs of water weight in less than a month. This week I had what seems to be my first asthma attack. I was diagnosed with asthma and allergies a few years ago, and it’s been pretty well managed. On Tuesday I was swimming in the lake with friends, got out and had a hard time catching my breath. I only had to walk a short distance, but had to stop and focus on breathing. It seemed hard to get enough air.
I got to a seat and was able to rest and calm it down. It didn’t occur to me until the next day that it might be related to my swelling issues.
Luckily I already had a checkup with my pulmonologist (lung doc) for that day. He listened to my health updates then looked back in my records to some cardiology tests I’d had back in 2019. I have a somewhat enlarged pulmonary artery and they had checked everything out back then. I recall being told that my heart was okay, that they were going to keep an eye on things. I was prescribed a water pill that helps with any touch of high blood pressure or swelling, and that was it.
But Dr. Pulmonologist looked at my records and said “well, you do have heart failure.”
I was flabbergasted and said that no one had ever told me that. When I hear HEART FAILURE, I think HEART ATTACK, DYING, YOU’RE ON YOUR WAY OUT.
This was when he explained to me there are different levels of heart failure.
(Cue family member Amanda saying “They’ve GOT TO get a better phrase for THAT!” Agree! It’s enough to freak out anyone.)
He explained in doctor-ese about this part of the heart squeezing and this other part filling up with blood. Mine seems to be a more minor kind, with not enough blood filling the heart plus a thickened wall.
But still, heart failure!
And apparently it’s been this way for 2 years.
Yes, my current swelling issues can be a cause or effect and if it gets worse I could tip over into worse heart failure, so my issues are nothing to take lightly.
His plan was to have me do a chest x-ray to make sure there’s no fluid in my lungs (there isn’t). I’m scheduled for another echocardiogram (heart ultrasound) next week. A pulmonary function (breathing) test. And he wanted me to get in to see my primary care doctor as soon as possible.
“Sometimes it takes awhile to get in,” I said, frustrated by the slow pace of the medical world.
“Tell them you saw your pulmonologist and he’s concerned about heart failure,” he advised. “That should get you in fast.
So I did, and it worked (it’s good to have an ace). I got in the next morning. She was great, and thorough. I told her about the heart failure, and she wrinkled her brows. “I’m not sure I’d say heart failure. Maybe a touch of heart failure. More of a weakened heart.”
She said it was something to be vigilant about, to really do all we can to get the swelling down. We want to protect the heart. So now I have an appointment with a cardiologist. One of the issues is that we still don’t really know what’s causing the swelling. I guess it’s not straightforward. She ran more labs on me to check on aspects of what could be contributing to the issue. I left feeling a bit more reassured.
I also had an appointment yesterday with the lymphodema clinic. They have a whole program to deal with swelling. What they’d do for me is wrap my legs three times a week in a way that uses compression to push out the extra fluid. They do lymphatic massage. This will go on for 5 weeks, but won’t start until mid-July. People who have gone through this tell me it really works.
Then … last night, I saw the results of my labs that day pop up online. My primary doctor wrote a note that my “N Terminal Pro BNP” came back even higher than it had before. This is a test that can show markers for heart failure. Oh no! She recommended I start taking my two-times-a-day diuretic three times now (my middle initial is now P).
This made me terribly anxious because it sounded much more serious. And of course I read this late at night, which didn’t help.
This morning I called and talked to a nurse, wanting to know more. I was again reassured that this is something to be cautious and vigilant about, but it’s not dire. So: take the diuretic, get my labs checked next week, keep lying with my feet up, see the cardiologist. Okay, and calm the anxiety. Breathe.
There is some good news at least. My legs, which had been so excruciatingly itchy and red last weekend, feel better. A bit itchy but much less. Not so red. Even though my water weight has not gone down yet (even though I’m peeing a lot), I see some definition in my ankles coming back. Not so much like tree trunks. The skin is not pulled so tight.
So that’s where I’m at right now. It’s not been a fun week health-wise, but I’m still here. Five medical appointments, an asthma attack, health anxiety, and coming to terms with this “heart failure” stuff.
What does it mean? What are the short-term and long-term implications? Can I recover? I hope so, and I intend to. But it’s all pretty new. And ironic that my sore and tender feeling-heart is still pretty dinged up by all the divorce stuff.
This is WAY too long, so if you’ve read or skimmed this far, thanks much. I’m hanging in there. It’s interesting how your priorities shift in your days and your life when you really need to take care of your body. My Word of the Year is Healing, chosen long before any of these health issues. Healing my heart– my feeling-heart and now my physical heart– and my body.
It’s taking a lot of twists and turns. Wish me luck, okay? I really want to stick around this place for a long time. Health and healing back atcha!
Photos/art by: Damian Niolet, b0red, Aung Soe Min, Steve Halama, and me.