Updates

First Appointment

Tears welled in my eyes as we drove to the hospital. I sniffled them back and tried to hold my composure.
Sometimes I feel like I grew up in hospitals. My Dad, the carrier of the gene I received, was constantly getting checked, upgraded, opened up, you name it. The smell of antiseptics weren’t frightening at all. They became comforting over time, safe. My naive youthful mind always wondered if I would get the same special attention Dad got. He was priority, immediate medical attention was always given. That was kinda cool in a way. No more 6 hour minimum wait in the emergency room. (To those who are confused about that long of a wait time. I’m Canadian. Yep. It’s great. I like it here.) But at the same time, I always knew that attention came with a price. One that no amount of attention could fix. So I stood back, observed, and took notes. Hoping that some day I’ll never have to face any of these procedures personally, but being prepared wouldn’t hurt.
Now, here I am. Headed to that place with the same exact childhood fear congregating in the deepest part of my stomach.
“This isn’t fair.” I squeaked through stray tears. Mom just reached over and held my hand.
By the time I had entered the office of my genetic counselor I had straightened my back. Professionalism mode activated. *transformer sounds* Tears would have to wait until later. By this point, I still had not fully cried since I got the news. Mom says I’m stubborn. That gene I got from Dad too.
I barely sit down and a slew of questions and concerns race from my lips. Mom and I bounce off each other like tennis balls in our search for answers. My Genetic Counselor is amazing. She’s intelligent, caring, knowledgeable of the rare disorder I face, and best of all, calm.
“Here’s your results for the extensive testing you got 2 years ago. No structural abnormalities at all, perfect EKG, and….” she shows me the record from my 24 hour holster, “to get any concern for symptoms your list of irregular beats, double beats, runs etc. has to exceed 500 each. That’s considered minor. Most with symptoms exceed about 30, 000.”
Woah.
She continued, “I even had this test done on myself before, and you…”
*drumroll*
“…had 1 irregular beat.”
WAT? That’s it? Like, singular?
“Yep. Overly perfect score. I didn’t even get as clean a result as you and I don’t have the gene. I had multiples in each category.”
*HIGH FIVE*
But actually that was amazing. I felt I had some idea what was going on. Even a bit of pride for my strong, perfect, genetically compromised heart. Irony? Yes.
Deep breath. Slowly, this weight that has been placed on me is easing off my shoulders. One step at a time.
Then Mom stepped in, “We’ve been toying with the idea of getting an AED, but if she’s getting implanted for safety sake, without symptoms, it might be good to wait. Do you have any idea if that’s a decision she may face?”
I can feel the tears slowly gather into the wells of my eyes. Little ‘nopes’ ringing in my head like bells.
*Flashback*
“You know this is a possibility? You may be healthy but this is still high risk, they might give you one even if your tests are clear.” Mom said gently, as if I was a frightened fawn.
“I honestly can’t even think of that right now.” I moaned. “It’s just too much too soon. Please God just give me until I’m 30. That’s all I ask. Just short 1 more decade…”
*Present Moment*
“You’ll have to talk with your cardiologist, he can give you a straight answer but in general…..based on the recommendations I received from the researcher in Newfoundland who specializes in your genetic sequence. Women get implanted later than men, since it is less aggressive for females so in your case….”
Breathe…Breathe…Breathe….Oh! Listening – that too.
“…late 20’s early 30’s.”
WOAH TEARS NO STOOOOP. Too late.
“Mom remember my wish?” I choked pitifully. “I get until I’m 30. That’s exactly what I asked for. Can you believe it?”
She smiled.
-Redundant Spiritual Statement Warning-
God really does work in mysterious ways. Just like Nan said. But that story is for another time.
“I also asked the counsel (team of cardiologists) if your performance artist profession may be something that could be hindered by treatments or aggravate the condition….” My counsellor mentioned.
She knows me so well already. This is our third meeting ever. What a lovely lady. I said the first part of that sentence aloud then had to stop because the river of relieved and happy tears fell forth when she said, “They said it’s perfectly fine. You can continue with all of those activities with no alterations. Just no competitive or intense indurance sports, it’s known to manifest symptoms”
Well damn. If it’s doctor’s orders….sure! I never sports ever really. I like prancing though. Is that a sport? I’ll keep that one.
“Do you feel better?” My Counsellor asked. I wiped my eyes and sucked in the next emotional wave before it overwhelmed me.
“Yes, so much. I’ve felt so uninformed and ill-equipped all week. This is exactly what I needed. I was scared I wouldn’t have time to warm up to the idea of getting an ICD, (Implantable Cardioverter Defibrillator).”
“Oh! You should tell her your back up plan!” Mom chirped.
I laughed and said, “Mom sent me an article of a girl my age in the US who got diagnosed with ARVC. She worked with a plastic surgeon and got the ICD under her breast muscle to hide it. I thought that was genius! But….my boobs aren’t big enough to hide anything. I’d have one bigger than the other! So….”
Mom finished for me with a chuckle, “We said let’s tuck a boob job in there and get a 2 for 1!”
Ha! Classic Mudder b’y. (Newfie joke).
One week after the results and I still have good news coming out from the woodworks. There’s still hope. Always! Besides, if there isn’t, nothing a good boob joke can’t fix!
Teehee!
May Your Adventures be Wild and Your Heart be Strong,
~ Cirey Londiel ~
 
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