Things about my CHD that you didn’t know you needed to know

Late last year I began to experience moments that I thought, were panic attacks brought on by stress.

With my other half gone more than most of last year and then my oldest flying the coop back to Ohio, and a job that I don’t feel qualified to do (because it wasn’t what they originally hired me to do), stress became my middle name.

Going home at Christmas, was exactly what was needed. It breathed new life into me and I thought, “Psssh. I’m fucking awesome. I can deal with all of this. I can handle it,” because I was handling it. Albeit a little misshapen and clumsy, kind of like me. I was owning my new “married single parent” status.

The only regret that I have from Christmas, is time. It wasn’t enough. So I tucked as many moments into my heart and came back here.

My husband would argue, if asked, that Ohio only made me worse; sadder, more depressed, and upset. But I can’t express enough that the bulk of that is a lie. I saw my people, my son, my sister, parents, got to see their faces, hug them, and watch them laugh.

My energy had been restored and renewed.

Cue More Stress

What Christmas didn’t do was calm or cure the stress and anxiety I had started to feel at work. My job had more pressure than I could stand. I began to having trouble sleeping, I was jumpy, anxious, angry, even as I’m still employed there – I don’t love it.

Hate might be too harsh a word but it is absolutely my least favorite place to be Monday through Friday. I was thrust into a project I felt ill-equipped to handle and floundered, just making the goal and the deadline. There were accusations of not “owning” my role and job title and I had been talked down to. That big project? Mistakes a plenty and the fingers all pointed at me.

The list of how I’ve been made to feel is an exhaustive one. I’ve never had a boss that made me feel so completely inadequate, or be so unwilling to teach me and lead me.

Pneumonia right on schedule

In February I got pneumonia. I was permitted one day off to “rest”. A host of antibiotics, steroids, a breathing treatment schedule complete with nebulizer, and prescription strength cough suppressant and nasal spray became part of my daily routine so that I could function at work every day.

My doctor convinced me that I needed a full checkup because I confessed to being a terrible patient, so terrible that the only patient worse than me would be doctors and nurses themselves. I also confessed to just feeling just thisside of emotionally terrible on a daily basis.

The appointment got postponed twice and then finally cancelled because I couldn’t keep requesting off of work and then having to cancel the request.

On top of that, we were dealing with teenager problems that one can only describe as, “What the fuck were you thinking?”

That’s when things got really interesting.

May brings (I’ll give you a hint,  it’s not flowers)

Waiting on more information from doctors but for now we’re doing this. Pacer check combined with sleeping pills, and twice daily blood pressure checks. At least life isn’t boring right now, right?! Swipe to see all ????????????

A post shared by Nichole Smith #freelancewriter (@knowitallnikki) on May 9, 2017 at 12:47am PDT

I went in to the walk-in clinic one day after work because I’d had a particularly bad day. I was nauseous, my heart was racing, and I felt completely beat up; physically and mentally. My initial blood pressure was 178 over something (I think it was like 110) and of course the nurse didn’t like those numbers so we completed my vitals and came back to take a second shot at my blood pressure.

My blood pressure had only lowered to 156 over 102. I didn’t tell my mom about the first BP because I may be crazy but I’m not stupid. I was instructed NOT to go back to work but instead go home and do what we call a device check (Growing up, I always called it a pacemaker transmission). She ordered me to also pick up an electric blood pressure cuff and prescribed me Trazadone to take at night.

Now for the stuff that only happens to me

I went home and did the device check. Less than an hour later I got a call back. The device technician let me know I had been in 100 percent Atrial Fibrillation since November; a mere nine months after having a new pacer battery placed.

She gave me the news straight up.

SERIOUSLY?

I can’t make this up ya’ll.

The nest day, I told my boss that I am having some health issues, namely the AFib but I didn’t really want to talk about it because I wasn’t comfortable discussing it. I got a call from the doctor that same day to please come in as soon as I could to do an EKG. She spoke to the people at the Heart Institute in Anchorage and the Electrophysiologist there wanted an EKG done.

I informed my boss that I was needed back at the clinic for a quick test and that I should be back in less than an hour. I could’ve simply said, “I’m taking a lunch” which I’m allowed to take but I don’t ever take one so I can pick the kids up and get home at a reasonable time.

Instead of simply saying, “I hope everything is okay!” I was told that I needed to call her if I would be more than an hour.

Amateur EKGs

The EKG turned out like garbage but the Electrophysiologist in Anchorage was able to make out enough that he decided he wanted to see me. An appointment for late June has been scheduled. I’ll meet with the Cardiologist who put in the new battery last February and also have another EKG, another device check, and an echocardiogram of my heart to see how much heart function I have.

All a Flutter

If we’re talking about the symptoms of AFib, I can tell you that I’ve had every.single.one and I continue to have them, with the exception of fainting and fatigue. I’m no tired than I normally am. However, I had been contributing them all to stress but the funny thing is that they are all symptoms of panic attacks too.

So I guess the question is, which came first?

The chicken or the egg?

For those of you who I’ve lost at this point, stress is linked to AFib and AFib can make the symptoms of stress feel that much stronger.

“She wasn’t worried”

Concerns?

I have them but I’m working really, REALLY HARD to not let them consume me because I know what will happen if I do. It won’t end well and I have no one here to pick me up when I fall apart so I suck it up and work daily at not worrying.

I’m concerned that the cardiologists in Anchorage will want to put in a defibrillator, or do an ablation. Hell. He may want to do both. I’d rather have an ablation over a defibrillator if I’m honest.

The other possibility is that something is faulty with the pacemaker. That makes me the most concerned. At this point, I’m of the belief that these jokers had one chance at playing around with my heart (literally) and they blew it. They aren’t boyfriends back from the past. They don’t get a second chance to break me again.

So we wait. And not worry (an oxymoron)

I have told the husband that if I don’t like what these non-ACHD (Adult Congenital Heart Defect) cardiologists have to say or I don’t like what they want to do, I’m headed back to the Buckeye state for a second opinion. Like I said, no one gets to fuck with my heart a second time if they can’t get it right the first time.

There’s the additional concern that this my new reality and it means more close and careful monitoring. I have to face the facts on this one; I’m three hours away from the ONLY hospital that has a clue (and not a very good one if you ask me), and my husband works all over the damn place now.

Not even remotely possible that he could be at my side in minutes should there be an actual emergency. I do a shitty enough job of taking care of myself. My back up person needs to be better than me.

In search of wizards

I’m sure Alaska thinks it has Amazing cardiologists but I come from the best of the best (Cleveland Clinic, Rainbow Babies & Children’s, Nationwide Children’s Hospital to name a few). As horrible of a patient as I am, I can’t stomach the idea of putting myself in less than the best care.

I will kick and scream the entire way but at the end of it all I want motherfucking wizards on my team.

This is what concerns me the most about putting my heart in the hands of Alaska’s Heart Institute.

1. They don’t specialize in ACHDs.
2. They don’t have a Congenital Heart Defect program.
3. One specialist exists like a unicorn but comes up from Washington state at the most, four times a year.
4. They already treated me like a geriatric patient who was just getting her pacemaker for the first time when they did the battery replacement a year ago.
5. The Electrophysiologist said I was at a lower risk of stroke despite my high blood pressure because of the “Mustard” procedure used to correct my defect at birth.

That last one has me scratching my head and calling bullshit because in 24 years of caring for myself no one has ever told me that and not even my own mother knew it. My heart was repaired with a baffle. Baffles over time can leak or narrow. How does THAT not put me at a risk for stroke?

I need wizards you guys. Magical, amazing, wizards who have more than an additional six months of training on adult CHD patients with pacemakers (like this Electrophysiologist does).

Fear with good reason

I’m weary of doctors. I’ve been steered wrong so many times after my pediatric cardiologist moved to Georgia when I was 18. It’s been a string of general cardiologists treating me over the last 24 years like a 70 year old woman who’s heart has finally started to fail.

Can you blame me?

It’s even worse when they opt to run a battery of tests to “get acquainted with your unique condition.” That’s never a good sign and usually when the hairs on the back of my neck and arms stand up on end.

Mah brain. It is over capacity

If you’re thinking, “damn that’s a lot” then try being me for a day.

I’ve only scratched the surface. There are other things on my mind that I’m not ready to let spill out. However, I’d be lying if I didn’t tell you that there is a part of me that prays a second opinion is necessary and said second opinion tells me that Alaska can’t handle my kind of medical issues and it’s time to come home if I want to get my health back on track. I can’t help it, that’s just how my brain and particular brand of prayer works.

And now, we’re both tired but more informed about all of this.