It’s ironic that this is CHD Awareness Week (CHD stands for Congenital Heart Defect – I have one!) because as every blogger who’s been touched or hasn’t been touched by CHD is posting about congenital heart defects (some as part of a food/heart health campaign #Nourishwhatcounts- Please don’t get me started but why do companies have to wait for a special week to back something? Whatever. Again, Not going to get started), I’m frantically trying to get my shit in order by next Monday.
I go meet a new cardiologist on Monday. This is the first time I’ve actively said that this is a doctor I want to see. This is the first time that I’ve not been pointed to a new doctor by the recommendation of another doctor or one of my parents. This is the first time that I’ve sought out a doctor from someone who has actually grown up like I have. Someone who knows what it’s like to be me (or as close to me as possible). I’ve researched the doctor. I know what he’s about. What he can offer me and I know in my backwards heart (okay transposed) that this is where I need to go. What I need to do.
Sigh. It will be bliss. I’m actually tearing up a little. He’s different. I’m different. We’ll be awesome together I just know it. It’s the first time I’m excited, nervous and wanting to cry tears of joy.
Back to frantically getting my shit together.
I’m tracking down my medical records which have been scattered across NE Ohio and back (no small feat since the doctor offices I’ve been in don’t exactly want to share the info with the new doctor’s office. Meanies). I’m hoping we don’t “wing it” like Brian suggested we do and we stay the night in Columbus. I’m making preparations for my mother in law to come in and run the house for the day while we’re meeting, talking, praying that I’ll get the kind of care that I need. And maybe, just maybe I won’t be what my friend Marlena and I like to call “non-compliant” anymore.
I’m also long term preparing for what will be a hospital stay and pacemaker battery replacement sometime this year. I’m predicting the next month or two but we won’t know until we see the new doctor. Right now the preparation is all in my head (because I’ve done this before) but OMHeart the lists in my head.
My CHD Reality
When you’re in charge (mostly) of a home, a family, a job, your own business… there are a lot of balls to juggle and bounce around, (No WONDER my battery is dying. I’m freaking busy!) it’s easy to put yourself last. I’m no different than any other woman on the planet except that I have a little hardware help to keep me moving. (That’s a lie. I am different but in the theoretical sense of the word I’m not.) Some women use pills, energy drinks, exercise, endorphins; I use technology developed by NASA.
I forget to get my eyebrows waxed, my weight checked, my hair done, and yeah – I don’t follow up on my own health. This angers my mom to no end. I guess I can see it from her point of view because it’s um.. IMPORTANT maybe that I see the doctor every year, do my pacer transmissions over the phone, and follow doctor orders (yeah, no) but at the same time I need to do things on my own, on my own terms and no doctor or parent can force a grown woman to do it any other way.
I’m not the kind of patient (and maybe this is what makes me non-compliant) who does not nod and smile her way through doctor appointments. There’s shit I want to know; like why after 12 years I suddenly need a medication that I’ve never taken before and what it will do for and to me? What does X, Y, Z mean for my family and so on. I don’t think anyone should be the kind of patient who nods and smiles their way through doctor visits.
When you’ve grown up with a CHD and you become a grown up, that doesn’t mean your doctor needs to be an adult cardiologist. A lot of people don’t understand that. Your heart isn’t exactly like a normal adult’s or even a person who’s started having heart problems in their adult life. There are things that have been done to a baby’s heart, a child’s, a teenager’s heart that haven’t been done to everyone else’s and no one gets that better than a cardiologist who works with babies, children and teens. A grown up with a CHD is going to have issues or problems that an adult cardiologist may not be familiar with or be sympathetic to.
It’s hard to explain unless you’ve been where an adult who has a CHD has been. The world looks different, is different on so many levels. We get extra phone calls from insurance companies because we have “pre-existing conditions”. We don’t notice the hardware in our bodies because we don’t know life without it. Skin becomes a little less sensitive where repeat surgeries have taken place. Scars feel tough and spider and spread after the 5th or 6th surgery. We are 1.8 million families and yet? We aren’t blogged or lobbied for like Breast Cancer.
Our lives begin differently.
For the ones who bore us and raise us.
Interesting conversations with our children happen. They are often funny and poignant but they always help them understand what it means to live with a mom or dad that is different than other moms and dads (and why we often make bad scientific test subjects – HA!) I’ve had to develop a sense of humor about my CHD and believe me, it’s not been easy. There have been moments of frustration and anger that rival Shorty’s angry eyes.
I’m gearing up for an interesting year; travel, work, and yes better attention to my health. I’m hopeful and excited, and always nervous and scared (the scared never goes away) but I don’t need a special week dedicated out of the year to talk about what it’s like to be me but for everyone else’s sake, I’m glad there is.
Educate yourself about Congenital Heart Defects