First, wow. It's been four months since I've written a blog post. Because, life. I've found myself humming along with the rhythm of life--going back to work full-time, teaching and lesson planning and grading and feeling completely normal again. While it has been and will always be that being a CHD'er is constantly running scripts in the back of my mind and it all feels normal, there are times when I'm struck by the gravity of it all. I have a mechanical heart valve. I've been opened up four times. If I don't take my Coumadin, I will throw a clot. My valve could get infected. This sucks! And yet--even in those moments of raw reality--I'm thrust back into the rhythm of life. Grading papers. Lesson planning. Watching a crime show on the ID GO app. Eating tri tip at Lucille's with my husband. Life. But then reality gripped me a few months ago. Thank God for my Coumadin Clinic nurse! I found myself short of breath again. As Doc V says, that shortness of breath as history has dictated, is a warning shot for me. What's wrong with my valve? But funny, I wasn't worried about my valve. In the shower, I was noticing how much weight I was carrying in my trunk. Every time I'd go to the Coumadin Clinic and be weighed, I'd weigh a little more. I wasn't eating cheesecake every day for breakfast. I wasn't sedentary. But I'd weigh five more pounds as my twice-monthly checkups. And then another five. And another. A normal pant size for me when I'm not actively running 5 Ks is a 12. But my 14s were tight, especially in my engorged thighs. My Coumadin Clinic nurse looked at me and said, "Maybe you should get your thyroid checked. You're at that age. Or, your BNP." BNP. Short for B-Type Natriuretic Peptide. Essentially, a marker for heart failure. For most people, a BNP under 100 is normal. Anything over 150 is not good, and don't get me started on over 500 or 900! It made sense, I thought. I'm short of breath. I'm gaining weight despite no change in my diet or activity. Am I...in heart failure? Better yet, WHY am I in heart failure? Thanks to my friends at the American Heart Association, here is some information about heart failure:https://www.heart.org/en/health-topics/heart-failure/what-is-heart-failure Heart failure doesn't mean that your heart has stopped working or will stop working. It doesn't mean that you will drop dead from a heart attack in two seconds. What is does mean is that your heart is overloaded and working really hard for a variety of reasons. And, according to the AHA, people can live full and active lives in spite of heart failure. Some of my heart friends live with HF, and although their lives may be limited to some degree, they are able to work, play, and do most anything they like. I just want to put it out there because often times there are so many myths and misconceptions about heart disease of any kind. In fact, someone recently asked me if I was allowed to exercise. I wanted to say, "DUH!" but I simply said, "I don't have many restrictions." Obviously I'm not going to play football and risk a concussion on Coumadin, but I can walk, I can run, I can go to the gym. Anyway, that right there is a blog for another time. Anyway, I did call Doc's nurse about testing my thyroid and BNP, and I saw Doc right before Christmas. (FYI, my thyroid was fine). I wanted to punch the fool. Sorry, Doc, if you're reading this, I hope you realize what a doofus you were when we first met about the BNP test. "I'm not worried about your BNP," he said (my BNP was 179), "unless it's over 200." Then: "One hundred sixty-six pounds?" he gasped as he looked at my chart. "I know it's the holidays, but you've gained eleven pounds since last time. You need to be watching what you eat and exercising. You know, you live closer to the beach now, so there's no excuse not to walk." "I'm short of breath," I protested (the magic words!) "It's because you're carrying extra weight," he retorted. Long story short, I talked Doc into putting me on Lasix (a diuretic that also works as a heart failure medication). And potassium to counteract the effects of the Lasix removing all my water and thereby potassium. He reluctantly agreed, I'm sure convinced that he was doing this to prove a point: The extra weight was fat, not fluid. Still, he would re-test the BNP in February. I waited until winter break started a week later to begin Lasix. I lost 14 pounds the first time. That's right. Fourteen pounds. As the fluid was flushed from my body, I could breathe better. My thighs didn't feel like tree trunks. I could actually see that I have a waist! We re-tested the BNP a couple weeks ago, and even with my only-on-Saturday-or-Sunday Lasix-taking (because what teacher has time to go to the bathroom during class?), my BNP was now close to 300. Doc tried to give me the ol' song and dance about Distended Deb (no, it's just asthma or "residual" pulmonary hypertension from surgery number one in 2006; no, you're just getting fat, blah blah blah), but I showed him my journal. For any of you who are dealing with medical issues, document everything and show your doctor! I wish I'd done that to start with. Keep[ record of your symptoms, what activities bring on symptoms, etc. Keeping a journal is key! (Seriously, Doc, I was about to go get a second opinion until you finally listened to me! I know I'm not your "typical" patient with my congenital heart defect and all, but good grief, Dude!) "Look at this," I pointed out. His jaw about hit the floor. "Wow. Fourteen pounds?" "Yes, Doc. Fourteen pounds." Doc isn't convinced this is heart failure. "Why else am I having classic symptoms?" I challenged. "I'm short of breath, I'm tired, my PVCs are out of control, I cough when I lie down..." But here is the evidence. Everything above, to begin with. But also: * The fact that my heart has been cut into four times over the past thirteen years. * The fact that I had a heart attack...almost 44 years ago, but still. *The fact that I have had several ablations and basically have had my heart scarred up. *The fact that I have had leaky heart valves in different forms in 2006, 2015, and 2016-17. So what is making my heart work so hard? We are about to find out. Doc made me promise him I would increase my Lasix doses to four times a week (reduced dose but more frequently), re-test the BNP a third time in two weeks, keep the excess fluid off (see the first point above), and then test. We will either do one of these tests: https://www.heart.org/en/health-topics/heart-failure/diagnosing-heart-failure/common-tests-for-heart-failure More than likely a TEE or a heart cath. Still, heart failure doesn't mean failure. But my heart is mad and we need to know why. Meanwhile, we need to take a load off. For more information and/or support to help you Rise Above HF, visit: http://www.heart.org/HEARTORG/Conditions/HeartFailure/Rise-Above-Heart-Failure-Alliance_UCM_478548_SubHomePage.jsp Comments are closed.
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