“Chelsea? How are you feeling? Surgery is done, you’re in the recovery room.” he said.
I was bleary for a half second before jolted forward and stated with awe, “I’m alive.”
I was so affected by this realization that the nurse had to physically lay their hand on my shoulder, (the no-defib side), and push me back down gently.
“Hey there, you need to rest. Lie down – you’re still in recovery.” He told me.
As he puttered about with my file checked the attached tubes I blurted out with a small laugh, “I was such a lil’ bitch about it.”
“You’re fine. No need to worry. Just rest.” He seemed unfazed by my random outburst of inappropriate language.
Next thing I knew I was being wheeled out of recovery and into my room. I had no idea where I was or where I was going. I started to feel anxious.
As they loaded me into some corner of a strange room and started hooking me up to things I could feel myself on the verge of tears, “Where’s my Mom?” I asked.
“I can find her if you like.” My lovely nurse asked me.
Only a few moments of anxiety later and sure enough – Mom and Bro come barging in.
“I didn’t know you were out already!” Mom exclaimed, “We were waiting where you went in and didn’t see you come out. How do you feel?”
“I feel high and lazy.” I stated.
By now I was intrigued. I just got cut open and got a machine shoved into my shoulder. I wonder what it looks like? After the thought crossed my mind I reached over and started inspecting the giant wad of dressing on my right shoulder….wait that’s not dressing – it’s an ice pack. Interesting.
I tried to turn my head and look at this new foreign object but it proved to be more difficult than I thought.
“Chelsea lie down you just had heart surgery for Christ’s sake.” Mom scolded. However, in true Mom fashion she too began inspecting the site.
“The swelling isn’t too bad.” She seemed impressed.
“I have to pee.” I blurted out. “How do I do that now?”
The nurse walked in right at that moment and answered, “Bathroom is that door there, let me get your IV mobile.”
After some fussing about with all of my tubes I somehow ended up standing next to my bed – I don’t remember how, but there I was.
“I’ll help her.” My brother stated as he grabbed my IV pole. I remember stumbling drunkenly into the bathroom and shoving the door open with my good shoulder before my brother could open it for me. Luckily they had stalls inside so there was no need to scar him for life. He stood outside faithfully holding my IV.
As I stumbled comically back to my bed I felt quite chipper – but lightheaded. So I slumped back onto my bed like a lump and waited for my body to catch it’s bearings.
“You should eat something Chelsea.” Mom said whilst holding my lunch tray.
“No, that’s not what the instruction booklet said.” I responded.
I would like to mention that yes – I read extensively about my procedure before I received it. Some would call it nerdy…I call it being prepared. How did I remember such facts when deep in the effects of multiple sedatives you ask? I have no idea.
“There’s soup here.” She tried to coax me.
“No Mom, no food for at least a couple hours.” I was sticking to my guns on this.
She sighed and pressed the button to call the nurse, who came in promptly.
“Is she allowed to eat?” Mom asked smugly.
“Yeah no problem, just light things like toast and soup.” he said. At this point I was highly confused. That was NOT what the informational booklet said at all. So Mom helped me sit up and I was not liking it.
“It feels weird.” I said.
“You can feel something?” Mom asked.
“I can feel it in me. There’s pressure.” I said in a spacey, lost my marbles kind of way.
“Just have some bites then you can go back to sleep, it’s broccoli and cheese. Your favorite!” She told me.
“Broccoli and Cheese!”, I exclaimed, “How did they know!?”.
After Mom dutifully fed me spoonfuls of soup to a very smitten moi. When I began to hear a mysterious beeping sound…
“What the hell is that?” I blurted, “That beeping.”
“You’re in a hospital honey you’re surrounded by beeping.” She laughed, “Your just out of it with the anesthetics.”
“Mom….I think it’s ME beeping.” I confessed with wide eyes. She just laughed and told me to keep eating.
Shortly after the nurse came to my bedside and handed my some pills for my pain. Of which I immediately dropped in the sea of blankets covering me.
“Oh no!” I declared, “It’s lost to the ether….”
My brother laughed right then, I was clearly blitzed.
~
I woke up about 3 hours later but this time I could feel EVERYTHING.
The weight of the defib would shift at every movement and drag whenever I leaned forward. I wouldn’t say it was painful but damn was it uncomfortable – okay maybe a bit painful….moderately at best.
I glanced around the room that I shared with 3 other patients. All of which were clearly over the age of 60.
I was scared to move my arm, even the slightest lean or turn of my head caused me to feel every inch of the defib inside me. This is super weird.
The hours dragged on and Mom stayed by my side, checking on me and keeping me sane. Next thing I knew that damn beeping was happening again…
“Mom! It’s me I’m beeping!” I tried to tell her. She leaned her head down to my chest and laughed.
“Chelsea you are beeping! I thought you were just being high so I didn’t believe you!” She laughed.
Later that night the ICD nurse rolled in a cart with a fancy computer on it. She placed and mouse looking attachment over my defib and began clicking away.
“Sometimes upon installation the defibrillator will beep and it needs to be calibrated.” The nurse told me.
I’m officially a cyborg now….sweet!
“I’m going to test your leads now by racing your heart. It’s going to feel like a flutter or make you feel faint but don’t worry it’s normal.” The nurse told me.
My heart began to race and the feeling was all too familiar to me. It sucked. I felt faint and sweaty and it felt like I wasn’t breathing properly. Once it was over I was relieved.
“That was a heart palpitation, I’ve had those before without the defib.” I said.
“That’s exactly what it is!” The nurse confirmed.
Soon enough it
became late and my poor family was tired, I reassured them I was fine and that they should go home and rest. There’s nothing for me to do here but lie down anyway.
There I was at 11 pm. The lights turned out and the beeping machines (but not me) was chirping like a metronome in the most annoying way possible. I had slept so much already that I didn’t feel tired and I was hurting, I looked down at my chest as far as I could handle and realized – my boob is hanging out of my gown – F*&%. Has it been like that all day?
Image above – Photographer: Tanner Berquist, SFX Makeup: Brooke Warrington, Model: Chelsea Alice
~
*Ring Ring*
“Hello?” I answer my phone.
“Hi Chelsea, this is one of your cardiac nurses. I was calling to see if you would be willing to do your surgery a day early? So it would be tomorrow.” She asked.
“Uhhhhh….no.” I stuttered. “Listen, my family are coming with me and they booked the 5th off work to take me to the hospital and be there with me. They can’t change that now.”
“Hmm let me talk to my colleagues and I’ll call you back.” she said.
I sat down, deflated. Can I get one thing in my life on schedule? One thing according to plan? Just one…please?
Luckily she called me back and said everything was going to be on schedule, thank god, but that wasn’t the only reason I didn’t want the schedule to be changed.
*4 weeks earlier*
*ring ring*
“Hello?” I answered.
“Hey Chelsea this is L. I’m calling to confirm your surgery date is Oct 5.”
“Wait, L…are you G.’s Mom?” I asked.
“Yes I am.” She responded.
“Do you know who I am?” I questioned inquisitively.
“I knew who you were the second I saw your file.” she said compassionately.
Tears welled in my eyes, happy tears.
L. was the mom of one of my childhood friends, wayyyy back in Grade 3. She is also a cardiac nurse, who very often was on shift whenever Dad had an appointment or a surgery. I basically grew up with her being the family nurse. The odds that she would be the one to call me were astounding.
“Can you believe it?” I sniffled.
“I must say I was a bit sad when I saw your name, but the technology nowadays is amazing it shouldn’t bother you much at all.” she informed me.
“Okay that’s good.” I felt just a little bit better.
We continued to chat and catch up, then when I hung up the phone I felt like maybe this surgery was meant to happen. Perhaps it is meant to be right now, instead of 5 years from now.
About a week later I received the letter detailing my preparation and procedure for the big day, then I noticed a little post it attached.
I felt a big wave of gratefulness and safety, I felt more confident about the whole procedure and most importantly….I felt not alone.
L. had made a conscious effort to be there for me that day, there was no way I was going to change that. I needed her, more than I could outwardly admit. My strength wavered after the news of surgery, this was the pick me up I needed. I can do this.
Two days before my procedure I gave my consent for the surgery with the surgeon over the phone. It was the moment I had feared, when all of the complications that could possibly happen were laid out for me to anguish over. Except the one thing that had been hovering over me like a dark cloud was never mentioned. The worst case scenario was a punctured lung and 1 more day in hospital.
“That’s it?” I thought. I was convinced there would be at least one mention of death, but there wasn’t. Thank god. I don’t think I would have handled it very well. You’ll know why as you continue to read.
The night before the big day I started running a warm bath. I had my favorite bath bomb, Intergalactic from Lush, waiting to be used. I bought it for myself the moment I found out I had to get the procedure done, 6 weeks ago, knowing I would use it to calm myself the night before.
I submerged myself in the warm water then dipped the blue orb into the water. It bubbled and fizzed beautifully turning my bath water into a picture of vibrant colors, it calmed me.
I began to wash my hair, enjoying the pretty smells and warm sensations when the tears started to flow.
I sobbed loudly – the day had come. The day I thought I thought I had narrowly avoided had caught up to me. There’s is no avoiding it now, there’s no avoiding it ever.
“Please Lord, let me wake up.” I sobbed in the blue bath water.
“Please, please, please, let me wake up.” I desperately pleaded to whatever omniscient being above.
My tears fell in the sparkly galactic water as I finally let my fears be voiced. Fears that I had haunting me since I knew I had to go under the knife.
I don’t know why but I had this very strong feeling I was going to die. I was a perfectly healthy young woman getting a preventative procedure, a major surgery yes but, not a life threatening one. Why on earth did I feel this way? Why was this feeling so strong?
It probably had a lot to do with my upbringing. Death was a common conversation when it came to this disease, the fear my father had for me inheriting it was something he voiced often.
“I hope to God you don’t get this damn curse, Chelsea.” He would say.
A curse it was, the curse I received.
I know my experience will be entirely different than my Dad’s. Technology and modern science are on my side here. I have much better odds of a great quality of life, to live with this gene and not have to sacrifice doing what I love. I know that, but knowing and feeling are two entirely different experiences.
The feeling was so strong I even considered leaving a letter, with the passwords to my important creative projects like movie scripts I wrote, this blog etc. So that if anything happened, maybe my work could live on someday…..
I even went down to my office desk and held the paper and pen, ready to unlock my lifeblood to share so that it wouldn’t be lost forever… but then I paused. I didn’t want to give in to this ominous feeling. I didn’t want to give it power. I knew this feeling was entirely misplaced, but was it?
“No.” I shook my head. I will not feed my own doubts. Not now, not ever.
I never told anyone about the feeling I had, it seemed much too dramatic to me, and unnecessary to mention. It seemed especially silly because there were other people in the world, people that I know and love, who have gone through much worse. I always felt the urge to complain just insulted those who knew true struggle. So I decided that feeling was something I had to battle within myself, but if sharing it here will help someone reading this with their own fears, then here it is. You’re not alone.
I turned around and instead sat at my sewing machine. I spent 2 hours that night sewing a beautiful hospital gown made with pretty colors. A cotton wrap dress with a bias bound edge, reversible with one side a floral pink and the other a polka dot lime green. I poured my fear into productive creativity, that is what I do best 🙂 I’ll get some pictures of me wearing it to show you all in the next post.
I hung up the finished gown with pride, then laid down and attempt to sleep. Tomorrow was the big day.
~
I woke up at 4 am, there was no way I was going back to sleep. So I got up and packed my bag including my new hospital gown. I talked to one of my brothers on the phone and he cheered me up substantially. Infinite jokes and laughter lightened my mood, for a minute I felt carefree again.
I kissed my nephew before he went to daycare and I hopped in the car to go to the hospital for my 7 am call time. I played my favorite inspirational music to make me feel strong again.
Specifically:
Stronger by Britney Spears
Beside You by Marianas Trench
Who Do You Love by Marianas Trench
Those classics always pump me up!
Getting admitted was fast and efficient. I was quite impressed. I sat down in the waiting chairs in the hallway, waiting to be prepped. I felt neutral, numb probably, but stable none the less.
My older Brother and Mom were there with me when a middle aged gentleman decided to strike up a conversation with us. He was waiting for a procedure as well and turned to my brother first.
“What are you in here for?” he asked.
“Not me,” my brother said, “my sister here.”
I looked up like a deer in headlights. I definitely was not in the mood for chatting. I would rather hide in the corner and make weird noises so no one would come and talk to me. In fact maybe I should make some weird noises now….
“Oh wow, you’re young.” the gentleman said shocked.
He was the first of many to tell me that in my stay at the hospital. I was probably the only one getting treatment for both the 8th and 9th floor in my age range. A woman in her 20’s getting invasive cardiac treatment was a surprise, even for some nurses.
“Genetic disorders….yay.” I said apathetically then proceeded to give him a half assed thumbs up. That was all I contributed to the conversation. My brother gracefully continued talking to him. Which I appreciated, the poor fellow was probably looking for a distraction in meeting new people. I wasn’t capable of small talk at this point. My nope level was slowly rising. I had to stay focused and get through this.
“Chelsea?” The nurse called.
I walked into the prep room and sat down. The nurse who helped me get ready for the surgery, we’ll call her H., proceeded to ask me questions about my health while I changed into the hospital gown. I had to look away when I got my blood taken for testing but I didn’t get upset. I just kept breathing and tried to remain calm. Focus Chelsea. Focus.
The nurse walked away to do some of her prep work and I was left alone in the prep room. There were 4 beds and 3 were empty. I was the first scheduled surgery of the day so it was calm.
I looked down and saw myself in the hospital gown, then looked up to see all the beeping equipment. I could smell the disinfectant I had grown up smelling. Everything seemed so familiar….but as a visitor, not a patient. Suddenly I felt extremely vulnerable. Reality hit me fast. Everything was real, not someday, not far away, it was right here.
A wave of tears overwhelmed me. There wasn’t sobbing, just tears, a steady stream of them. Mom heard me sniffling from the hallway outside so she came in and ran her hands through my hair, trying to keep me calm. My Brother came in too, cracking jokes and trying to make me laugh, which worked. Mom then snapped a couple of pics, knowing I would eventually post on the blog, she took quite a few throughout the whole experience, but as you can see below it is possible to laugh and cry at the same time.
Thanks Bro!
It was then time for the IV. H. got me to lie down while she made a nice toasty wrap for my arm so that my veins would pop. We had to wait for 10 mins with that on, but my tears just wouldn’t stop.
“This is a big day for her isn’t it?” H. said compassionately.
“She got the gene from her father, she only just found out she had to get surgery. She’s pretty overwhelmed.” Mom told her.
“She’s very young to be getting these kinds of things, I know it seems scary but we’ll take good care of you, okay?” H. told me.
“Okay” I responded a little choked up.
The arm burrito felt nice and relaxing so I savored the moment while I could.
Mmmmm…delicious arm burrito.
I had to turn away so I couldn’t see her insert the IV but she got it in quickly with little pain and before I knew it she had it done.
“Wow you’re really good at that!” I told her excitedly.
“I do dozens of these per day, most nurses only get a couple a week so you got the best one for the job!” she told me.
“Awesome.” I smiled.
“We’re waiting to hear which room you’re getting your procedure so just hang tight. Your surgeon is going to come and talk to you soon as well.” she informed me.
I waited patiently for a while when I had an epiphany.
“This is a new record for the most amount of people to see my tits in my entire life.” I stated with a completely serious face. My brother guffawed heartily. Mom laughed.
Then my surgeon walked in and the first thing I noticed is how good looking he was. Damn, now I have to look classy and not make anymore boob jokes.
“Hello Chelsea, my name is Dr. F. I will be your surgeon today. How are you doing?” He asked in a chipper tone.
“I’m okay.” I said rather unconvincingly. By now he was close enough to see my stream of tears that just hadn’t let up.
He proceeded to tell me it was a routine procedure and everything should go smoothly, but my damn tears just wouldn’t stop.
“I want you to feel comfortable Chelsea, tell what it is you’re concerned about?” He asked me.
“Ummm…I was told that you do it while I’m awake but sedated. Can I just get knocked out?” I asked him with mild to moderate desperation. I left out the part that I wanted to be unconscious so badly that if it meant knocking me over the head with a bat I would be perfectly okay with that.
“There are some risks associated with going under general anesthetic, you will meet your anesthesiologist before you go into the OR and you guys can figure something out. At anytime you can tell us you’re uncomfortable and we can fix it. We’ll make sure you have a good experience. What is it you’re scared of?” he questioned.
“I can’t see anything, or hear anything, or feel anything and I don’t wanna remember anything. At all.” I told him. I pretty much wanted to be as aware of the world around me as a dead fish. I left the fish part out too.
“Okay we can definitely make sure of that.” he reassured me. He was very nice and proceeded to engage in small talk to try and relax me. I didn’t feel rushed and nothing felt urgent. I definitely trusted him and felt a lot better.
That didn’t stop those tears though. They kept coming anyway. At this point I decided they had a mind of their own.
The porter came and took me to the OR, I kissed my Mom and Brother goodbye and as they wheeled me in the room, which got really bright all of a sudden.
They parked me on one side of the hallway and none other than L. was there.
“L!” I cried excitedly.
“Hey there sweetheart!” she said. It’s been years but I could recognize her right away, even through the mask.
“This is gonna be nice and easy so don’t worry okay?” she tried to reassure me.
Next thing I knew I was talking to my anesthesiologist, whom was also very good looking. Definitely no more boob jokes for now.
I told him I wanted to be as useful as a dead fish, (minus the dead fish part), and he had some concerns about my asthma.
“It’s only exercise induced.” I told him.
“We just want to make sure you’re breathing isn’t obstructed…..” and something something that I don’t remember. His eyes are so blue…
FOCUS.
I basically surmised there were more risks with general anesthetic. He was so knowledgeable, gentle and caring about it all that I felt I trusted him to make the right call so I left it to him.
They wheeled me in the room and I laid on the operating table. The tears still flowing freely. I don’t know why…. I felt fine. Silly tears.
“Keep breathing Chelsea I’ll be giving you some sedation right away.” my anesthesiologist said.
“I’m gonna be on the right side of your head okay Chelsea?” L. told me.
“Okay.” I responded.
“What’s your favorite band?” Dr.F asked me. “I have a speaker here and I can play some music for you!”
“Great Big Sea!” I responded enthusiastically. I was expecting some good old Consequence Free or When I’m Up but the first song that came on was….End of the World? I mean the song is great, and upbeat….but c’mon! That better end up being some hilarious f*cking irony after all this is done.
The sedation kicked in and I felt like I had a couple of drinks. I started to sing along but after a couple of minutes that took too much effort. Everything felt slowwww…….
The sheet went over my body and above my face so I couldn’t see anyone, but I could hear them and feel them touching me. Ummmm aren’t I not supposed to be aware of things? I’m not a very good dead fish right now.
I could feel them wipe the anti septic on my left shoulder and I piped up like the nerd I was.
“Is that the iodine orange stuff?” I asked curiously.
“It’s similar, not iodine, (they said the chemical that it is but I don’t remember), it’s pink!” Dr. F said.
“Oooooh I like pink.” I said excitedly.
At this point I can’t remember if I was still crying or not…but let’s continue.
“We’re going to administer the local anesthetic now, okay Chelsea?” They asked.
“Okay” I said. I felt pretty decent and when they told me it was time for the local anesthetic I didn’t think much of it at all.
Then the needle went into my left shoulder. It felt like in went in 2 inches and not only did it poke, it burned. A lot. That opened the floodgates.
I immediately started sobbing – loud, sniffly, breathtaking cries that I just couldn’t control. I could feel L. rubbing my right arm and trying to sooth me by telling me everything is okay.
I couldn’t form words, I didn’t have any. My fear and pain mixed into these loud moans of agony that I had no way to reign in. Then the needle went away.
“It’s okay Chelsea, we’re gonna take a break now so you can rest. Take some breaths it’s gonna be okay.” Dr. F told me compassionately.
I continued to cry, expressing everything I’ve held in for over a year of finding out about this damn heart condition.
Next thing I knew the world was suddenly very bright and a nurse I had never seen before was looking at me.
“Chelsea? How are you feeling? Surgery is done you’re in the recovery room.” he said.
~
To Be Continued…
May You Adventures Be Wild and Your Heart Be Strong,
This fabulous photo is from my friend Chad Wiseman, who expertly captured my every emotion in this journey so far. Thank you Chad.
~
To say that the waiting period has been difficult is actually an understatement. I tried to enjoy being grateful for what I have, what I do, and who I’m with….
But the challenges I’ve faced recently haven’t been related to my heart for the most part….Here’s a quick summary.
~
“Bye Mom & Dad!” I waved to my brother and sister in law as they left for the airport whilst I was holding my 2 year old nephew. 10 days of being taken care of by Auntie and Nan. This was gonna be fun!
I coughed with my sore throat and took my nephew to his toys to play. It’s just a silly cold after all…
*1 day later*
“His breathing is shallow again, I’m taking him to hospital.” Mom said.
My nephew was lethargic, laying on the couch with short shallow breaths. I smoothed his forehead and rubbed his belly. Trying to make him feel better.
“Okay let me pack up.” I replied, but then promptly provided such a hacking cough that I almost fell over. “I don’t think I’m gonna be able to go, can you take him on your own?”
“I think we should call your brother and get one of them to fly back. I’ll need help if both you and the baby are this sick.” Mom said with worry laced in her voice.
*12 hours later*
“We’re back!” my sister-in-law walked through the door. Happy baby in tow.
“Yay! He looks a lot better! When did you get in?” I stated with an expertly sandpapered voice.
“About 6 hours ago, but it was pneumonia like we thought, he recovered quickly and there’s some antibiotics he will be taking for a while.” my sister-in-law told me. I gave him kisses and we went in the living room to veg on the couch and watch the Wiggles.
“Why don’t we go to Nan’s house for dinner tonight?” My sister-in-law suggested. We’ll call her A.M.
“Yeah that sounds good.” I responded.
*3 hours later*
“I’m not feeling so well…” A.M. moaned.
“What? Don’t tell me you got it too…” I was very concerned. We can’t have 2/3 adults down for the count with 1 sick toddler! Those are not good odds.
*15 minutes later*
“A.M. is throwing up, she’s not well.” Mom told me.
“Oh god. What are we gonna do?” I asked her.
“She can barely walk, I took her to the spare room with some liquids and a bucket. We’ll have to take care of the baby for tonight.” She responded.
*1 hour later*
“You’ve gotta take your medicine boo boo.” I cooed to my sleepy nephew with my dry frog-like voice.
“BLAGH.” Vomit, vomit everywhere.
“Mom! He just threw up everywhere!” I screeched.
“WAAAAAA!” Eloquently screamed my nephew.
“It’s okay baby, let’s have a bath! Splash, splash! Yay!” I soothed.
“BLEGH.” he vomited again.
“Oh poor baby, it’s okay.” I stripped his clothes off and took him to the tub. He instantly got excited as the water got turned on. Bath time is his favorite. I rubbed his back as his whines subsided, he seemed to feel better.
“De ants go mart’sing one by one…” he babbled while we washed him. Well that wasn’t so bad….
I continued to hack and cough, barely keeping my breath.
“We have to take him to hospital again if he can’t keep his meds down.” Mom stated.
“Jesus Christ, okay let’s wash him up then let me pack my meds.”
*5 hours later*
Picture this. A toddler passed out in a little elephant covered blanket on a couch in the hospital waiting room, sleeping next to his Auntie who is also passed out on a couch with a much less elephant covered blanket, (Auntie’s sleep was definitely Nyquil induced), next to his Nan who is sitting up and scrolling facebook.
I woke up suddenly in the waiting room, Nan and Logan were gone so they must have gotten a room. I stood up and wrapped the blanket around me and waddled to the reception pitifully.
“Can I please go to my nephew’s room?” I asked in a barely audible scratchy whisper and a red puffy nose.
*1 day later*
Me, A.M. and my nephew all together again in the living room.
Updated rating of sickness from 1 (feeling great) to 10 (feeling awful).
Nephew: 5
A.M.: 4
Me: 7
When will this end?
*ring, ring*
“Hey Mom, A.M. feels much better. Must have been a 24 hour thing.” I updated her.
“Well that’s good, I’m starting to get a sore throat…” she said.
“Dammit!” I yelled.
*1 week later*
I’m at the doctors office, tired, sick and looking awful.
“I’ve been sick for 16 days.” I inform the Doctor raspily.
“16 days? That’s too long.” He told me.
“Trust me, I know. The body aches, heachaches and sinus problems are gone now, but the sore throat and cough just won’t leave! I don’t know what else to do! I just wanna get back to myself.” I cried.
“Do you have shortness of breath?” He asked.
“Yes.” I answered.
He listened to my lungs for a moment then turned to look at me.
“You’re getting early pneumonia, I’ll start you on anti-biotics and some inhalers because of your asthma.” he told me.
“Okay well that’s good to know. I’m due for heart surgery in 10 days, will that affect the schedule of that at all?” I asked timidly.
He turned around slowly, “What kind of heart surgery.” He asked.
“I’m getting an ICD implanted.” I told him.
“Call your team and tell them your condition and what you’re taking. They may have to delay the surgery.” He said remorsefully.
I drove home with tears barely holding onto my eyes.
*2 hours later*
“So, we don’t have to push the surgery date?” I asked the cardiac nurse fearfully on the phone.
“As long as you’re not sick at least 3 days before the procedure you’re fine.” He said.
“Oh thank heavens!” I cried – very relieved.
I sunk into the couch and took a breath, a very deep breath, the first deep breath I’ve taken in 16 days.
~
I realized I have accepted the reality of surgery much better than I originally thought. The idea of moving the date was frightening, I didn’t want to risk it. Perhaps, I should give myself more credit. Maybe I’m ready…
There were also great moments in those couple of weeks, some photo shoots and an amazing fashion show. They pretty much kept me sane and moving forward but now it’s time to relax. It’s time to do the things I won’t be able to do for a while. So I can remember that someday I can get back to doing it again.
There will be a post next week, but it will be an retroactive one. Since I’ll need time to heal before I can record what my surgery experience was like.
Wish me luck friends.
May Your Adventures Be Wild and Your Heart Be Strong,
Based on the title it’s assumed what the content of this blog is, but first I would like to address a couple of things.
First, thank you to everyone for reaching out to me. It means so much. I’ve had great conversations with so many of you supporting me and offering help in any way possible. I have such a great support system because of you.
Secondly, I just want to thank the entire team of medical professionals that have been very diligent in comprehensively reviewing my case and my test results. As well as the fantastic psychological resources I have access to specifically for dealing with genetic disorders. I am very well supported and encouraged in every way possible.
I know my last blog was…jarring. Different from the usual. Not as witty, funny, or uplifting. That left some of you concerned, which is perfectly understandable. I just wanted to touch on something that I think is very important.
Blogging about this kind of stuff will inevitably leave readers feeling uncomfortable, sad, or upset. Especially when the biggest news hits, I know it can be hard to read. It’s hard enough living it. All of the emotions that I, or you – the reader, may feel is…..okay.
It’s okay.
I had my worst nightmares since childhood face me 2 weeks ago and I felt annihilated.
That’s okay.
I shared that experience with my friends and family via phone calls, text messages and a bluntly dismal blog post.
That’s also okay.
Let me repeat it one more time.
Emotions and feelings – it’s okay to have them.
Technically there is no such thing as negative emotions. Only emotions that we don’t like, and that’s okay too.
Something that I think we’re struggling with in this world is allowing us to feel. I understand that emotions have taken over our lives in a lot of negative ways but pushing them away only makes it worse.
If I feel utterly defeated – I must allow myself to feel it. I need to truly allow the devastation to wash over me because if I don’t; it will haunt me somehow, someway, in the future. I don’t have the time or energy for my future to continue to be haunted. I’ve lived with that my entire life already. So when I share the most raw emotions in a blog post, it’s not because I’m at my rock bottom. Trust me, I’ve known rock bottom and this is nothing like it. I’m sharing those raw emotions because I refuse to sugar coat the truth. No one could relate to this blog if it wasn’t real. So here is real.
When tough news or emotions rolls through this blog, you and I have every right to feel however we feel. Tears are okay, anger is okay, hurt is okay. All of it is okay.
The reason why I know it’s okay? Because today isn’t tomorrow, nor is the next day! That is the greatest gift we will ever have – a new day. Emotions come and go as fast as the hour, day, week, or even a month. Emotions are always temporary, it’s just the time it lasts that changes. So let’s continue this journey together, whether we know each other or not, whether you’ve had the same experience or not, let’s move forward. That’s what life is all about.
Right now I may not feel okay – and that’s okay – because someday soon I know I will be okay again.
~
I muddled around for couple of days. Work always helps me regain my focus. So I put all of my energy into my career, as usual. That’s one constant I can always rely on.
I definitely spent time lying in the fetal position crying. Calling friends and family, crying. Driving home and parking the car, to cry. Just allowing myself to feel as much as I could.
I felt a constant weight in my chest and a cloud above my head, but I kept moving forward. It’s okay to feel this way.
I had a moment of logical clarity about 3 days after the news where I began aggressively researching ICD’s. Finding as much information as I could, even going as far as watching the actual surgery happen to someone on a medical channel on YouTube. It did help, I felt more prepared and a little less scared. The procedure is minimally invasive, all things considered.
I created a list of all my questions for my cardiologist so that I wouldn’t forget anything, I tried to wrack my brain for things that I didn’t understand or wasn’t sure of. That helped too.
I rediscovered my love for angsty rock metal from junior high, System of a Down, that was a fantastic emotional outlet. I would put the earbuds in my ears and all of a sudden the weight in my stomach and the cloud would disappear. It was liberating. 10/10 would recommend to anyone needing to overcome consistently down emotions. Specifically the album, Toxicity.
I’ve also reinvigorated my obsession with LUSH bath products. Fun colorful bath bombs and soft massaging body butters. The wonderful scents would instantly uplift me and make me feel soft and clean. I don’t think the obsession is going to go away anytime soon, based on how pretty I smell I’m okay with that too!
I became increasingly aware of the small things in life. A nice walk, a sip of wine, my nephews giggle, all moments that would give me the pause I needed to smile – and be happy.
As time went on I got progressively ambitious, which always happens to me when life gets tough. I get some sort of motivating fire lit under me that I can’t ignore. I have to do something here – but what? What could I do with this? What can be accomplished? What good is there out of this mess?
So I reached out to the wonderful photography community I had nurtured in the past 2 years with a Facebook post and two ideas in mind. To capture something that would raise awareness for ARVC and heart disease as well as quell my fears for the upcoming surgery. Together we will find a way to not only reach out to others, but to show that even the most frightening situation can spawn a positive outcome – so long as we try hard enough. From now until the moment of my surgery I will be posting new photos of images that will try and get people to look and see – even if it seems scary, is that so bad? This surgery is going to save my life, so let’s make it beautiful none the less.
Follow me on my Instagram @ladychelsealice so we can #faceourfears and become #ARVCaware there will be lots of posts and projects to come.
The first image I am posting here is a glimpse well into the future. I want to thank Tanner Berquist for the gorgeous photography and Brooke Warrington for her fantastic SFX makeup, for she created the sneak peek of the scar I will soon carry for the rest of my life.
They were both so gracious and gentle in me wanting to share my story, and very soothing to be in the presence of. I looked at this photo and I teared up. For it took the fears out of my mind, and made me feel much better about the future. What seemed so big in my imagination really just looked so small in real life. A portion of the weight in my stomach then floated away. I can live with that.
Photographer: Tanner Berquist SFX: Brooke Warrington Model: Chelsea Alice
May Your Adventures be Wild and Your Heart Be Strong,
Mom and I walked into the hospital for the first year follow up with my cardiologist. On the inside I was preparing for the worst. On the outside I looked highly optimistic.
For a moment I sat there grateful, because I didn’t have to walk into this appointment alone. Thanks Ma.
~
“Any fainting, dizziness or palpitations?” he asked
“Nothing that doesn’t have a detectable cause. If I get dizzy that means I’m not eating properly. Once I fix that I’m right as rain!” I responded.
“Well your tests from last year look excellent! No changes.” my cardiologist said. “They are so good in fact that I believe we can postpone the next round of testing to next year. So you can have a year off.”
Really?
“Well shouldn’t we have something checking her progress? Just to hold us over for another year?” Mom interjected.
“Well it takes months for the appointment and another couple months for the results, so there’s really no point in rushing it. However, I’ll send her for a signal average ECG just in case. It’s a quick one and it can keep us in the loop until the next round of further testing.”
“Deal!” I said.
“Shouldn’t she get implanted just in case? She might end up moving away for work and the AED can only be administered by someone else. What if she’s alone?” Mom asked. I almost rolled my eyes, luckily I refrained.
“There are risks to the surgery and having the defib as well. If she’s this healthy it might be just as beneficial to wait until there’s real need for it. Her testing is perfect.”
I almost smirked. Or maybe I did? I can’t remember but a smirk is exactly how I felt.
~
Mom and I were buying a celebratory lunch after the appointment.
“25 is gonna be a great year!” I exclaimed.
“I wasn’t expecting him to be so….relaxed about everything.” she replied.
“That’s a good sign, it means he’s confident in his decisions and therefore I am too. Oh look! Brownies!” I ran over to the brownies and picked out the one with the delicious vanilla frosting. Mmmm.
We sat down and ate happily, both very relieved.
“I can really spend this year focusing on more projects now, so this is great.” I murmured to myself.
“I guess the implant isn’t as urgent as I thought.” Mom stated retrospectively.
“Mom, last year he took me on as a patient out of nowhere with only my pediatric test results and the positive for the gene. We had to be urgent because we had to look at everything with a different scope, and update all of the tests. He has what he needs now, so he can make a more informed decision. Besides, he told us about the risks with the implant before and I told you that we shouldn’t rush into the implant because of them. Especially if I’m showing to be perfectly healthy.”
“What were the risks again?” she asked.
“Accidental or intentional firing causing PTSD as well as heart tissue damage from the leads especially upon replacement.” I chimed.
“Oh, I don’t remember that.” she replied.
“That’s because you were selectively listening. Listen I get it, I wanna push the surgery and you want it right away. We have to reach a balance here. The doctor, I think, agrees with both of us and I’m honestly open to whatever. The minute there are any changes in the tests I’ll happily change my opinion on the side of implantation but – it’s just too soon right now. I’m much too young!” I explained.
“Well maybe you were right then.” I almost spit out my drink when she said that.
Maybe I was.
~
About 3 weeks later I was lying down on the hospital bed waiting to get my signal average. This was my favorite test. They need you to relax as much as possible while they take the ECG. Which involves nice and warm blankets and a dark room. I was looking forward to this productive nap.
“This isn’t working.” The nurse stated.
What?
“Hmmm. Let me make sure they’re all connected.” she told me.
She pulled the warm blankets off of my chest and fiddled with the leads, the cold air made me shiver. So much for relaxing.
This proceeded for about 15 minutes, as they replaced a couple of the leads and they finally tucked me in for the test.
“Don’t move – try to relax” she said as she walked out the door. I tried my best to do just that. At least the blankets were still nice and warm.
~
Fast forward to today, 1 week later.
I woke up bleary eyed, ready for the beginning of the week. I checked my phone and it said – 1 new voice message.
“Hey Chelsea this is your cardiologist. I’ll be going away on vacation this week so if you could call me back today that would be great. There were some very minor changes detected on your signal average and we have some more information on your case that I would like to discuss with you.”
“FUCK!” I yelled. This can’t be happening. This can’t be happening. NO WAY.
I called Mom immediately.
“I’m coming home, wait for me then we’ll call.” she said.
I hung up the phone and almost threw it at the wall.
~
I laid there on the couch – waiting – and waiting for him to return my call. Mom and my sister in law were working away on their laptops. I had no emotional gauge, I didn’t even know what to think.
*ring ring*
“Hello?” I answered.
“Hey Chelsea do you have some time to chat?” He asked.
“Yes, I do.” I answered. Mom and my sister in law gathered into the living room with me.
“So your SAECG came back and it’s really not that much of a change. One of the numbers for example was last at 108 and is now at 110, but we have no need to grow concerned until 114.” he told me.
“Okay.” I meekly responded.
“The reason I’m calling you is because we had one of the genetic experts in your sequence give us their comprehensive opinion on your case…” He said.
“Okay.” I’ve officially graduated to broken record status. This isn’t looking good.
“They recommend getting you implanted sooner rather than later, they specifically requested that you get the defibrillator before we start seeing changes in your tests. Not after.”
“We just detected changes didn’t we.” I recalled.
“Yes, but only minor ones.” He answered.
I think that was his version of reassuring me. All of a sudden I didn’t wanna talk anymore. I wanted to hide away forever. In a lil’ bunny hole. With tiny bunnies that nibble on lettuce. That would be nice….
“We will have to discuss getting you implanted in the next little bit. I will be away on vacation for this week but how about you think about it and call me on Monday. Then we can discuss it further.” He finished.
“Okay.” I blurted. I don’t know what happened but all comprehensive thought had disappeared. My skills in conversational-ism had whisked away into time and space. I was speechless.
I barely ended the call when I hung my head and sobbed loudly. This is it. It’s time. I’m going to be getting implanted, 5 years sooner than expected.
~
That’s all I could write for now. I won’t post again until after that phone call on Monday. I need time to process, breathe and re-think a lot of things. I wish I could pretend to be strong. I wish I could act like everything will be okay. Which it definitely will be!
May 18 came and went rather uneventfully. Just another day of work, this time with a Diploma attached to my name. I had almost forgotten it was the 1st year anniversary of the test results.
To be quite honest nothing has really changed in my life, not negatively anyway. I moved forward with gusto. I graduated from my program for Costume Cutting & Construction, as well as completeing my first feature film as both Actress and Costume Designer. 2018 has been a generous year so far. I am fiercely grateful.
–
A few days ago I was chatting with Mom as usual and she brought up an interesting point.
“Your cardiologist didn’t definitively say you had until you’re 30 to be implanted you know.”
“He said it might depending on my family history!” I spluttered desperately.
“Chelsea,” Mom gave her usual ‘Mother knows best look’. “You and I both know those odds don’t look good.”
“Mom!” I chastised furrociously. I couldn’t handle talking about in any further.
–
I’ve been thinking about that conversation ever since. She’s not wrong, the odds aren’t working in my favor. The only thing working in my favor is the fact that I’m female, this disorder is less aggressive in women.
How much time do I truly have? My cardiologist was certainly careful with his words. Which means I’m even more in the dark than I thought I was, therefore my vulnerability increases.
Either way my next round of testing will be completed in the next few months. Those tests are the only certainty I have, even then my certainty only lasts for 1 more year…until the next round.
Ever waiting, ever learning, ever watching. That’s all there is left to do. Which is peaceful enough as it is. I’ll take what I can get.
I also want to thank everyone close to me for not treating me like delicate glass. No one has made me feel like I can’t do anything or that they are scared to have me around. Thanks to you all I can truly live within normalcy, even for just a little while longer.
I also want to congratulate the four members of Memorial University of Newfoundland’s faculty of medicine who have won the Governor General’s Innovation Award. These people are the reason I have a chance to a full and long life. Their groundbreaking research into the disorder I face has saved and will continue to save countless lives. I am so proud of them, they deserve this.
Life went on. I started a new job that I love, specializing in what I was trained for in college.
My friends and family treat me normally. Sometimes the topic comes up, but not so often it’s suffocating. Just enough to feel supported by a network of people that care about me. Thanks guys.
My Defibrillator is heavy on my back sometimes. When I want to just grab my wallet and go somewhere it’s a bit frustrating to remember a life saving device must accompany my journey. Altogether menial complaints.
Not only has life gone on. It hasn’t changed. Which is fantastic! The only thing I have to worry about now is the psychological Olympics. Any fleeting worries and fears that pop up have to be dealt with immediately to prevent any snowball effect. Meditation has always been my #1 friend in hard times. Old faithful keeps me on track.
I’ve been having some palpitations recently that could mean entirely nothing. Now with the knowledge I have… sometimes it doesn’t feel like nothing. Over time I get distracted doing what I love and very quickly it’s like it never happened. Lovely.
My follow up tests are officially complete. MRI, SAECG, and Holtor Monitor all sent to my cardiologist. I’m patiently awaiting the results to be clean as a whistle.
One thing is for certain. I have changed. For the rest of my life I will never be the same, diagnosis or not.
I’ve been waking up with the type of nightmares I’ve never had before. Just an hour after falling asleep I shoot out of bed feeling like a truck slammed me with anxiety. No dreams to match the emotions…just straight feelings. I know why too.
I have great motivation. If I have a goal and clear means to reach it there’s very little that can stop me, but since the news… new gears have been turning in my mind. Gears of complete and utter drive.
I feel like I’ve been told I was born with a ticking time bomb inside me. No one knows the time left, no one knows if it’s even turned on, no one knows what will happen when it goes off. It’s just there…. that much we do know.
I can’t afford to wait.
I can’t afford to be complacent. I can’t afford to sleep in. I can’t afford to slack off. I can’t afford to eat poorly. I can’t afford to weaken my body. I can’t afford to give up. I can’t afford to accept failure. I refuse to allow myself less than my best.
I’m turning 24 this weekend. When I turned 22 I called it my second 21st Birthday because I didn’t like how much I had achieved at that age. Time wasn’t waiting for me to become who I know I’m meant to be and what I’m meant to do.
Now I can’t help but feel I’m much too young, but with less time than I even started with.
6 years, (if I’m lucky), before I get implanted. That’s a long time. Not long enough but, hey, my dreams are big enough. I might as well push the timeline too.
There are a couple of people close to me going through way worse medical scenarios. I’m grateful for my life. I was given a choice. I know my chances. I choose to live 10x more with this knowledge. Nothing can stop me. Not even TMEM43.
Cheers to 24. A year even more vivacious than 23, I just know it.
May Your Adventures be Wild and Your Heart Be Strong,
At this point a lot of people may not understand where all of this came from. The sudden test results and family history seemed to sprout out of a garden that never seemed to hang out in my backyard. There was a reason for that.
I only told those closest to me that needed to know. Whether there was an appointment I had to go to instead of an event etc. Even then I hesitated. This disorder is so severe sounding, because it is. The difference between my perspective and others is that I was quite nonplussed about it. I grew up with the possibility. Facts are facts, my Dad is quite alive despite the mountain of medication and frequent surgeries. Comparatively, my situation really isn’t that bad. That is, until I learned I had the gene. Perspective changed pretty quick after that. It was easier to mention when I had the surety of clean clinical test results behind me.
I am only going to show my family history using percentages for confidentiality reasons, but it’s enough to get the point. These calculations are based as far back as 2 familial generations before me only with members that are connected genetically to acquire the gene.
Percent of TMEM43 positive family members
57%
Percent of Members with the Gene based on Gender
Female: 50%
Male: 50%
Percent of Members Implanted with an ICD
75%
Percent of Members who Died directly from the disorder, (this however happened before the ICD was invented. We have had no deaths in our family from this disorder since because of the implantable defibrillators)
25%
Percentage of Members Diagnosed and symptomatic based on age (those who died of it are included and considered as a stat at age of death)
Age 10-20: 14%
Age 20-24: 0%
Age 25-30: 42%
Age 30-34: 14%
Age 35-40: 28%
That’s all for now. The numbers speak for themselves but there is hope! My Mothers genetic contribution could very well dim the effects of TMEM43. I’ve been reassured many times I could live to be 90 and never have a single arrhythmia. I am an individual and that counts! I just have to be prepared for anything and live life as I would before. So long as I don’t plan on running any marathons….
May Your Adventures Be Wild and Your Heart Be Strong,
~ Chelsea Alice ~
“Sweetheart!” Exclaimed Mom over the phone. “Your cardiologist’s secretary called me back, they just had a cancellation and can squeeze you in tomorrow. Can you make it?”
*visual of me slaving over an important project due this week*
“Tomorrow? That’s so fast! Of course! Send me the info.” I enthusiastically respond.
-Hangs Up-
*looks at project*
*exaggeratedly sighs*
#mylife
–
I clutched my notebook close to my chest. As if the questions written inside it would protect my heart from its own internal flaws.
“Only 12 questions, that’s not too bad!” I thought to myself as I checklisted all my biggest concerns.
The wait was excruciating. I just wanted to pace the floors and get all the anxious energy out of my body. This was it. All my questions to be answered is right here, right now.
“Hello! Good to see you.” He strolled in the room.
“Hey Doctor! Thank you for seeing me on such short notice. It means a lot.”
“Well, one of my patients ended up in surgery and I had this slot open up. I’ve been telling my administrator B. To fill any openings and she said she knew exactly who she was going to call. I’m glad it worked out.”
My heart grew 2 sizes. Poor B. She was consistently pestered by my calls for over a week and sure enough she gets me in true to promise. In Canadian fashion, I would be grateful for a 2 month wait and that’s if you’re lucky. I got in in less than 2 weeks. I owe B. Some cookies and a heartfelt card.
“It’s nice to meet you, have we met before?” He started.
“Yes, but I was a little girl when we met. Usually when Dad was recovering from surgery.” I responded.
“Yes, okay, and how old are you now?” He says as he checks over my chart.
“I’m 23 now.”
“…and you have the gene.” He mentions.
“Yes.” I didn’t have any other words than that to say. By now I was so tired of explaining my unique circumstances to others it was almost comforting to use one word sentences. For once I could talk to someone who knew more than I did. Let them take the lead and reassure me for a moment. That sounds nice.
“Tell me what you already know.” He asked me. I proceeded to explain what I knew, fancy medical terms and all. I did my research, since I knew how to read anyway. Might as well flaunt it while I get the chance.
“Looks like you’re well informed. Let me explain to you your options for ICD’s, (Implantable Cardioverter Defibrillator), there’s 2 types now which is good for options. The first one…”
He gets right to the good stuff doen’t he? Perfect! I need that. I mentally check off the question about available technology for ICD’s but take pause once I realize, “He went straight to ICD’s, does he want one in me now?”
*heart stops*
But not stopping like Cardiac arrest, I mean physiologically due to emotional response. I’m much more familiar with that kind than the real kind.
“I would recommend the conventional ICD, the accidental firing rate is much lower, between 3 and 5%. And it’s placement is easier when it comes to wires…”
Oh Jesus, Mary and Joseph. (God forgive me). At least, that’s what Nan would say in times like these….
“Since you don’t need the pacemaker, just the defibrillator, the design and leads are very simple, easy to implant and replace so comparatively to your father you’ll have a much easier time….”
I’m 23, I just found out I have the damn gene and I’m asymptomatic. Can I get until I’m 30? Like I asked for?
“If you want it by your ribs instead of the shoulder the wires will be placed subcutaneously…”
Breathe….breathe…..
“But the issues with that option is that the leads…”
I’m just too young for this…can I take a rain check?
“The incision for that version is about as long as my fingernail which is optimal for cosmetic reasons…”
I mean, I don’t have a receipt for my existence or anything. Will a birth certificate work? Or my total DNA sequence on paper?
“The defibrillator itself is quite small these days, about four fingers wide and half a finger thick…”
Not bad. But not small enough for me, personally.
“The lead has a tiny end that we insert into the heart muscle, when it’s removed for replacement there’s a risk of losing some of the bit of muscle it’s connected to but now that’s quite rare….”
OH BUTTS 😥
“Every 10 years or so you’ll need a new battery, manufacturers could extend battery life, but by then the technology is so advanced you might as well get a new one….”
*hides away in a corner*
“…so you won’t need that many surgeries in your lifetime….”
“Feel free to do as much research as you need to decide which one will work for you.”
“Doctor, do you mean for me to decide now and get implanted….right away?” I ask tentatively whilst trying to remain calm.
“No, not at all, we just might as well have this conversation while I’m here and be prepared.”
*blinks*
*tries not to faint*
THANK CHRIST. OH ME JESUS – (proceedes to mentally swear all the blasphemous Newfie jargon possible)
“Oh man, for a bit there I thought a decision was already made.” I sigh with relief.
“No, but I would like to know the history of all the affected women in your family and at what age the disorder manifested so we can make an informed decision when the time comes.” He stated.
“I have an Aunt who knows all of those details. I’ll have to call her and get back to you on that.”
“Sure, that information is very important and will help decide when we implant you. Symptoms or not. You don’t have to worry about that now but there are a lot of factors at play for that decision.”
“Will I have until I’m 30?” I ask hopefully.
“That’s something that can’t be decided until the time comes. So, no promises. But it can happen if you continue to be asymptomatic and your family history looks good.”
“I’ll take it!”
“Your 2015 results are completely normal. It’s time for a top up now though so I’m going to get you an MRI and a Signal Average ECG to double check any changes. If there are any structural abnormalities or concerns in your ECG I’ll call you and we can go from there. In fact can you stay for a bit and get the SAECG done here right now? Let’s save you a trip.”
“Sure!”
*internally moans at project deadline*
–
Luckily, everything I had hoped for was verified by the highest professional available. One who not only knows this disorder, but my family’s history as well. One thing is for sure. With an intense day like that, sometimes all you need is a couple of good memes to help you mentally handle effing scary stuff.
May Your Adventures be Wild and Your Heart be Strong,
Disclaimer: This is not an ad. This is my personal experience and decision that I’m sharing so it may help others in the same decision making process.
“So, it talks me through everything?”
“Yes! Just press the power button and it will talk through every detail like cutting the clothes, opening the pad holder etc.”
“Awesome.” I responded.
Mom and I were at St. John Ambulance, ready to buy the mysterious AED. We had two choices:
1) Phillips Heartstart OnSite Defibrillator
2) ZOLL AED Plus Semi Automatic
“What’s the difference between the two?” I asked.
“Well the ZOLL seems to be in a sturdier casing, and the top comes off and can be used as a head rest for the person. The pads for this one are also connected so it’s easier to decipher which goes where. You can’t really get it wrong.”
I poked at it a bit. Seemed bigger than I’d hoped.
“The Phillips one is smaller and more compact…” she continued.
I’ll take it!
“…it has it’s own case and everything.”
The look of the Phillips was awesome but I didn’t wanna run with it because of cosmetics. It’s supposed to save my life after all.
“The ZOLL says it’s Semi Automatic, does that mean the Philips isn’t fully Automatic?Aren’t they both supposed to be fully automatic anyway?” Mom asked intelligently. I definitely got that gene from her.
“Hmmm they’re both automatic, I’m not sure why it says that.” The lady replied.
My distraught look must have resonated through the hallways because a lovely gentleman walked up and inquired, “Would you like some help figuring it out?”
“Yes!” I exclaimed.
“Okay well, the Philips has scissors included in the kit to cut away the clothes. There’s also room allotted at the top of the case for spare pads and a spare battery. I recommend having spares on you at all times. This power button turns it on and will instruct you exactly how and when you need to do anything, pad application, shock etc. Press the power button again to turn it off. Also, there’s a light that continuously flashes through the case that indicates the battery is good to go and the AED is ready for use. So you can always be sure it will work. Here I’ll show you.”
He proceeded to walk down the hallway and he showed us their wall mounted AED. It was the exact Phillips model just like the above option. If a First Aid training company prefers these in their facilities, I’m pretty sold.
“See the light?” He said.
“That’s so great! Very reassuring.” I answered.
“Best thing of all. Worst case scenario if you use the AED is you waste a set of pads. If the machine doesn’t detect an arrhythmia or tachycardia it won’t shock even if you press the shock button. So you can’t hurt anyone.”
I almost sighed in relief audibly. I would be relying mostly on my friends and family who may not be trained in using these. But knowing it can’t go wrong instantly made me feel a lot better.
“What are you using this for?” He inquired.
“Myself.” I despondently responded.
“Oh?”
“Yeah. I just found out I have a gene for a heart condition where the #1 symptom may be sudden death so…”
Damn, this is awkward.
“Oh…okay well. I wasn’t trained on the ZOLL but I know technically they do the same thing. You turn it on it talks you through. It advises you to shock so you press the button to shock and they both talk you through CPR if it’s a flat lining issue. With the Phillips you just press the Information button and it will talk you through all the timing of breaths versus chest compressions.”
Well they both talk, that’s important.
I thanked the gentleman for his help and looked through the comparison chart on the pamphlet they gave me. If I’m gonna buy a lifesaver I gotta get the research right the first time.
“…the Philips not only records the entire event but it records 15 minutes worth of an ECG too! That’s perfect for my doctors. I want this one!” I decide.
“You sure that’s the one you want dear?” Mom asked inquisitively.
“Completely. It’s the perfect size, it has room for spares, it has a battery indicator light and takes an ECG! I want this one.” I shove the box to the lady behind the counter.
As she rings the box through I get a sense of urgency. Like a fleeting sense of security is within sight but not within reach. I breathe and try to stay calm. So close.
Walking out of the building AED in hand I feel another weight slowly lift away from my shoulders. Geez, since I got the news how much have I been bench pressing here?
–
“None of them have zippers!” I groaned.
Mom and I went straight to Winners to get a gorgeous bag to hold my new AED.
“Ooooh! What about this one!”
Shopping always helps me feel better.
“Too big, the AED is big enough I don’t wanna carry around a luggage bag.”
It was diffult to find one that would fit and also had a proper closure. Why do people want purses that are wide open for all to see? Don’t they drop things or anything?
We decided on a cute purse that had enough room for my AED, wallet and phone and a little backpack that did the very same.
I walked out of the store ready to rock and roll. Clutching the AED like a security blanket. I can do this. I’m safe now. Nothing can stop me.
–
Damn this blasted thing.
Yesterday I clutched it like a scared child. Today it felt like a reminder of my doom.
I ran my errands with it, feeling it’s weight. Every time I opened it the bright red of the case glared at me with obnoxious exuberance. In 24 hours this thing became the biggest example of my weakness, vulnerability and danger. How on earth am I going to get used to this?
–
It’s been almost two weeks since I got the AED as I write this. I’ve stuck to my guns in carrying it with me. I still wasn’t sure about it all for a while. I felt detached, stand off-ish but I never wavered the habit.
Then I went to see my cardiologist, the details of which is for another post. As we walked the halls to the office I noticed something on the wall. Their AED. It was a Phillips. The exact model I had on me. I clutched the straps to my bag and for a moment, I felt it was all meant to be.
“Look! It’s your AED!” Mom exclaimed.
“It is…” I couldn’t help but smile.
A lot of people would think this a small coincidence. I don’t think that state of mind is very fun at all. At this point it’s only been 2 weeks since I got the news and so much has happened in so little time. My whole perspective on life has taken a 180. I’ve had to consider changing my long term plans for my future, career and family life. There’s a giant new list of to do’s now that it may limit some choices I will make.
I’m very lucky. I never wanted to be a professional athlete, I never drank much, not even carbonated beverages, I eat pretty clean. I’ve even wondered perhaps the reason why I’m not showing symptoms is because I’ve always taken care of myself, never vexed my body past it’s physical limit. The sacrifices I’ve had to make aren’t significant. They probably won’t be for some time. I know comparatively to others who face sudden major diagnoses I’ve got it pretty damn good.
That doesn’t stop me from tearing up at the idea of someday meeting my future husband and explaining to him what chances we’re taking in passing this gene to our kids. That every birth I experience I will have to wonder if they won or lost the genetic lotto. Which of my future children are forced to face this frightening reality? That’s not including the medical procedures they will have to witness their mother going through, knowing that they may be next. Technological advances will be amazing by then, but a great risk is always there.
I’ve gained enough resiliency in my life for a lot of reasons. Mostly life experience and a will to not only survive, but thrive. I can honestly say with pure conviction I would not be so resilient if it wasn’t for knowing that deep down everything happens for a reason. Some people call that religion, or spirituality, some others are turned off by those terms now a days. If you’re reading this and that’s the case think of it as a Greater Purpose. It’s not about just me, or you, or any one person. It’s about us, and our experience together.
My Nan used to always say, “God will never give you more than you can handle.”
I was trained in my previous life experiences to now handle, this. Something that was written in my DNA since the moment I was conceived, I face now. After my biggest personal challenges through my teen years that even I never thought I could conquer. I did it anyway. Because I believed in….something bigger and more meaningful than what I felt was challenging me. If I had gotten the news during that time in my life it would have destroyed me. Instead I face it now, with an arsenal of strategies and skills to navigate and overcome it with great victory.
A perfect mix of fate and life decisions. We do have control, of ourselves, our choices, and most importantly our thought process. Some would argue they can’t control emotions but I say this; your thoughts provoke emotions, so choose your thoughts wisely.
I choose to take every small thing and allow it to inspire me. I choose to find a reason to do more, do better. I choose to find ways to overcome my greatest challenges in positive healthy constructive ways and nothing less. I choose this AED to show me that I am right where I’m supposed to be. Even if it’s not what I wanted.
Since that day at the hospital I’ve carried the AED with no notice of it as either a security blanket or a destructive reminder. It’s there if I need it. That’s what matters. It’s a part of my life, I can accept that, and I got a pretty cute purse out of it too!
May Your Adventures be Wild and Your Heart be Strong,
Heart Gene 