Periscope will get me though Open Heart surgery

After being out of work for a year, in 2014, I yearned for something that would make me happy which could bring happiness to others. Ms Candy Blog was born from darkness. And because of her and my need to connect with others, I’ve made so many amazing friends through the live streaming app, Periscope. They have shared a myriad of moments with me — from me discovering who Ms. Candy Blog is and delighting in all the treats I’ve found, to sharing my upset at the lack of a job and the loss of family members. The hardest moment came last night on the eve of 2016’s Go Red for Women Day, a day to promote women’s heart health awareness.

I’ve always been transparent and authentic with my audience. That’s how I am in real life so why should it be any different on Periscope? I also feel it’s an important part of live streaming and key to a trusting relationship, period, but especially between a broadcaster and her audience. Because of Periscope and my audience’s support, I was inspired to share a part of my life which I typically wouldn’t — I’m a pretty private person.

Being faced with one’s own mortality in what seems to be the prime of life is something most people don’t think about nor should they have to. Unfortunately, for me, my entire life has been spent living in the shadow of something called aortic stenosis: the aortic valve of my heart, the valve that brings oxygen to the heart, is unusually narrow. When I was born, my parents were told I wouldn’t make it to adulthood. And now that I have, I will undergo open heart surgery for aortic valve replacement.

You know others who’ve had this surgery: Robin Williams, Lady Gaga’s father, and Barbara Walters all underwent surgery for new aortas. The difference is I’m a lot younger and have done a lot less living than them which makes me an anomaly. And when most people in the cardiac world meet me, they are surprised I have this congenital disease.

According to test numbers, the narrowing of my aorta is very severe so technically, I should have had aortic valve replacement surgery. We’ve postponed it as it can only be done twice in a lifetime with a tissue (bovine) valve; a mechanical valve is not recommended for women. I’m not showing any of symptoms related to severe aortic stenosis so I’m kind of living on borrowed time. And as a result, I’m supposed to see the cardiologist every 6 months where I go through testing.

My next cardiology visit will be at the end of March. Typically these entail my doctor examining me, followed by a series of tests. I’ve seen these test change over the years with advances in science and technology. I used to have little suction cups placed all over my body take readings of my heart; my mother called them “balloons” so I wouldn’t be scared. She also never said we were going to the hospital, but instead, said the “heart doctor” — whose office was in a hospital.

I’ve been in childrens’ hospitals, having been catherized at 15. Catherization is a procedure typically affiliated with a different kind of balloon where a catheter is inserted into the groin and brought up into the heart to measure a valve’s opening. If necessary, a “balloon” is used to widen a potential blockage. I don’t have a blockage, mind you.

My impending surgery will leave me with a scar down my chest nicknamed “a zipper”. This will be the first mark on my body. I have no tattoos and haven’t had any procedures done. This fact alone kills me. Currently testing is being done on older patients to do the procedure through the arm, but I’m too young for it.

I guess I should just be thankful there’s something that can be done and my life will be extended. I haven’t mentioned that they’re going to have to crack my ribs to get to my heart, the aorta being around the back of the heart. I’ll have a tube down my throat — something that scares the life out of me as I’m claustrophobic. And yes, I do fear I will wake up during all of this and be unable to control anything.

I don’t know what this journey or the “scopes” will feature. Sure, I wonder if my doctors will allow cameras in the rooms and how much they’ll let me or I’d like to show. I guess some of it’ll be up to my family. I’m sure my mother won’t want this to be scoped and my brother and sister will think I’m nuts. I guess this should be the least of my worries in my very visual, well planning mind. But it gives me a distraction from my biggest fears and comfort to know that my friends will be not too far away.

Because Periscope is so much a part of my life, I feel I must share my journey to open heart surgery and a new aorta with my Periscope family. This isn’t a performance. These aren’t sympathy scopes. This isn’t a way to gain more followers or hearts. This is a way for me to get through this immense bump in the road; a way to feel supported; and to support others who are going through or will go through their own their own difficulties.

I’m going to try not to think about any of this until my next appointment which is almost 2 months away. Until then, I’ll focus on Ms. Candy Blog bringing happiness to others as she was created to do.

Hey! Could you do me a favor and click the heart below (pretty perfect that it’s a heart)? That way, more people will get to learn what you already know. Candy kisses!