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You are here: Home / CHD / ACHD Adventures with Nikki

ACHD Adventures with Nikki

By Know-it-All Nikki Leave a Comment

 

What do tornado warnings, cardioversions, and earthquakes have in common? Absolutely nothing unless you’re me. And then they all fall into the category of “stuff that only happens to me”.

Let me explain.

At the end of February, I made the trip from Alaska to Ohio to see my cardiology specialists. The trip was roughly a month in the planning so I knew it was going to happen, I just didn’t have a good idea as to when.

If you remember, in my previous post about National Heart Health Month, I mentioned I was back in Afib. What I didn’t talk about was the details.

Afib doesn’t impress all of my doctors

The new team I was supposed to be working from Seattle/Alaska said they weren’t concerned when I let them know I was not only out of rhythm but I’d been this way for over three months. They didn’t even seem impressed it was the second time in as much as six months that I had been in Afib.

Their reasoning was I was already on blood thinners and that was the most important issue in their minds. Had I not been therapeutic on blood thinners, the plan would’ve been to start me on them ASAP and then cardiovert me circa June 2017. But because I had an established protocol with anti-coagulants, it wasn’t pressing for them to get me back in sync (or *NSYNC if you’re a fan of the boy band by the same name). Instead, the attitude was to wait until I felt worse, or I was seen in their clinic in Anchorage at a date to be determined in April of this year.

Afib and Heart Failure are not friends

If you’re wondering about the millions of people around the world who deal with Afib and why they aren’t constantly cardioverted, I can’t answer that. I do know it sometimes has more to do with the type of heart problem they have. For instance, most people find themselves with acquired heart disease, meaning they develop heart problems with age, from poor health, or from an illness that attacks the heart. For those people, the solution may be to implant a pacemaker/defibrillator device that will shock them back into rhythm. Even some of us CHDers end up with that type of device.

I am not one of those people. I’m also in a category of adult CHD patients that doesn’t realize when I’m in Afib because I have complete heart block. FUN, RIGHT?!

No.

Heart failure happens when part of your heart can’t pump blood or fill with blood properly. In my case, that’s the right ventricle but since it’s actually doing the job the left ventricle should do, it’s already at a disadvantage.

From Nationwide Children’s Hospital on congestive heart failure in someone with dextro-transposition of the great arteries:

“Although the heart has been repaired, it is still not normal. The right ventricle, which usually pumps blood to the lungs (low-pressure) now pumps blood to the body (high pressure). The right ventricle handles the high-pressure load fairly well for many years but, eventually begins to wear down. Eventually, it becomes dilated, boggy, and weakens.

If the function of the right ventricle continues to worsen, despite medical treatment, a heart transplant is considered.”

For reference:

Normal Heart image via CDC

And my heart:

D-TGA heart image via CDC

So, it makes sense that the longer you are in Afib, the more damage it does to that already struggling right ventricle.

Thankfully, the team in Columbus, at Nationwide Children’s Hospital disagreed with the Seattle/Alaska team and decided I should go see them.

ACHD Adventures with Nikki

The team planned on cardioversion and a heart cath while I was in Ohio. Then they decided to sneak in a stress test and a 48-hour hospital stay to start me on a beta blocker/anti-arrhythmic medication. The last time I was on medication for arrhythmias and Afib was in childhood. I took that medication until I was around 18. (Side note: Our memories can be amazing sometimes. I may not be able to remember what I had for dinner two days ago, but I can still taste, AND SMELL the medication I took as a kid.)

Where was I? Oh yeah… everything went off without a hitch. I did well during the hospital stay, and after the cardioversion, they raised my heart rate on the pacemaker to a resting rate of 79-80, which explains why I felt a little jumpy for the first couple of days post-cardioversion. (Warn a girl, next time, will ya?!)

There’s still a lot more to tell, including a near a close encounter with a nanobot! But I’ll stop here for now.

Till next time ~

 

Filed Under: CHD, My Heart Tagged With: 1 in 100, ACHD, adult congenital heart disease, atrial fibrillation, Congenital heart disease awareness, heart arrhythmia, transposition of the great vessels

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Hi there!

I’m Nikki and I’m thrilled to have you here. I’m powered by a good chai latte, loads of chocolate, and humor. Here at Know-it-all Nikki, I dish up honest conversations about life with adult congenital heart disease and mental health. I also share my love of books, knitting, midlife, and life after divorce. So, pull up a seat and grab a beverage. Let’s spill some tea, have a lot of laughs, and a few good cries. To learn more about what makes me tick, CLICK HERE

knowitallnikki

#writer 📲 #Binder #bookblogger #Knitter 🐑 💙 #chd #ACHD #TGA📧 hello@knowitallnikki.com 📸 ©️ @knowitallnikki


Ok, okay, I won't go anywhere. Promise.
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.
.
#c

Ok, okay, I won't go anywhere. Promise.
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.
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.
#charliesworld #catstagram #instacats #catsofig #housecatlife


Technically, he's not ON my planner, thus preventi
Technically, he's not ON my planner, thus preventing me from filling it out, but he IS laying on the stickers I need to fill in the days and dates.
.
.
.
.
#charliesworld #instacats #catsofinstagram #catsofig #housecatlife catstagram


The world is falling apart.
The world is falling apart.


Head to the blog (link in bio) and read the latest
Head to the blog (link in bio) and read the latest. I've been trying to figure out how to write this for 2 months now and I still don't know if I got it right.
.
.
.
#knowitallnikkimovestoohio #dtga #heartmonth #ACHD #adultchdsurvivor


Well poop, I missed day 4 (Early Answers, Lasting
Well poop, I missed day 4 (Early Answers, Lasting Impact) and day 5 (How We Monitorthe Heart)! But it's fine! Because they both fit nicely for today's adventures which consisted of a carotid artery ultrasound (day 5) and a series of messages between myself and @nationwidekids to discuss how best to approach the weight loss struggle (day 4). 🤨😠

But it also ties in beautifully with day 6 of #heartmonth, #choosingjoy because despite all of the crap that goes along with being an adult with CHD, I am genuinely joyful. Some of comes out in sarcasm but I've told people if I'm not cracking jokes or inserting some token sarcasm into the day, then something is truly wrong. The last 2 years have been hard, but believe me when I say, I AM HAPPY and I'm wearing red today!
.
.
.
.
#ACHD #congenitalheartdefectsurvivor #WearRedforHeartMonth


I almost missed it, day 3 prompt for #heartmonth i
I almost missed it, day 3 prompt for #heartmonth is #lifebetweenappointments 

Yeesh, where do I start? Right now my life between appointments is a little chaotic. The number of appointments has increased a thousand fold than what I was used to growing up.  There are more appointments now than I had when I was pregnant with all four kids!

I struggle to keep them straight or where they're going to be. I write them down in a paper planner, my wall calendar, and my phone's calendar. And I still wind up looking them up multiple times because I don't trust my brain's ability to recall.

I'm expected to write down detailed symptoms. I don't recognize symptoms as symptoms. It just feels like a Tuesday to me. But do try to have a normal life, the docs encourage: eat right, be active, get sleep. How do I do that and not wonder if what I'm feeling while I'm trying to be normal is a symptom?
.
.
.
.
#heartfailure #congestiveheartfailure #congenitalheartdefect


Waiting.
.
.
.
#catsofinstagram #charliesworld #in

Waiting.
.
.
.
#catsofinstagram #charliesworld #instacats #catsofig #catstagram


Day 2 of #heartmonth is #motivationmonday. All I c
Day 2 of #heartmonth is #motivationmonday. All I can say, is sometimes motivation feels like the end of a very long tunnel; a pinprick of light in an otherwise black abyss. Motivation eludes me more than I care to admit. When it feels unattainable I feel like the little girl I used to be, opening my eyes in a pitch black room, are my eyes actually open? Making my way across the room, arms outstretched, hoping I don't run into anything, or worse, fall. 
And then other times, like on this Monday, motivation arrives and it feels easy, like a special occasion you'vebeen waiting for. So you wear the anatomical heart earrings your daughter bought you and you don the gifted knit heart cowl your knitty BFF made for you and for a day you feel normal.
.
.
.
.
#congenitalheartdefectsurvivor #congestiveheartfailure #dtga


Today kicks off the first day of #heartmonth. I st
Today kicks off the first day of #heartmonth. I still think it's silly to only give one day, one month, or even one week to talk about heart disease. Alas, here we are. 

I'm going to do my best to follow the 28 daily prompts for #heartdisease and #chdawareness but I make no promises.

Today's prompt is #BeyondtheDiagnosis. To me, looking beyond being born with a CHD means a few things:

It's the invisible things that can't be measured on a chart, like the fatigue, sadness for the health I wasn't born with, and the mental math of asking myself if I have enough energy for all I want to get accomplished in a week, or even a day.

It's being seen as a whole person; not the condition the doctors are treating. This a part of me, not all of me. I'm still a parent, friend, writer, a hopeless romantic. Yes, I'm a heart patient, I ALWAYS will be, but I'm also opinionated, stubborn, funny, and a person with real feelings. 

But most of all it's refusing to be reduced to number in the healthcare system, or someone else's discomfort.
.
.
.
#chdawareness



Follow on Instagram


knowitallnikki

#writer 📲 #Binder #bookblogger #Knitter 🐑 💙 #chd #ACHD #TGA📧 hello@knowitallnikki.com 📸 ©️ @knowitallnikki

Ok, okay, I won't go anywhere. Promise. . . . . #c Ok, okay, I won't go anywhere. Promise.
.
.
.
.
#charliesworld #catstagram #instacats #catsofig #housecatlife
Technically, he's not ON my planner, thus preventi Technically, he's not ON my planner, thus preventing me from filling it out, but he IS laying on the stickers I need to fill in the days and dates.
.
.
.
.
#charliesworld #instacats #catsofinstagram #catsofig #housecatlife catstagram
The world is falling apart. The world is falling apart.
Head to the blog (link in bio) and read the latest Head to the blog (link in bio) and read the latest. I've been trying to figure out how to write this for 2 months now and I still don't know if I got it right.
.
.
.
#knowitallnikkimovestoohio #dtga #heartmonth #ACHD #adultchdsurvivor
Well poop, I missed day 4 (Early Answers, Lasting Well poop, I missed day 4 (Early Answers, Lasting Impact) and day 5 (How We Monitorthe Heart)! But it's fine! Because they both fit nicely for today's adventures which consisted of a carotid artery ultrasound (day 5) and a series of messages between myself and @nationwidekids to discuss how best to approach the weight loss struggle (day 4). 🤨😠

But it also ties in beautifully with day 6 of #heartmonth, #choosingjoy because despite all of the crap that goes along with being an adult with CHD, I am genuinely joyful. Some of comes out in sarcasm but I've told people if I'm not cracking jokes or inserting some token sarcasm into the day, then something is truly wrong. The last 2 years have been hard, but believe me when I say, I AM HAPPY and I'm wearing red today!
.
.
.
.
#ACHD #congenitalheartdefectsurvivor #WearRedforHeartMonth
I almost missed it, day 3 prompt for #heartmonth i I almost missed it, day 3 prompt for #heartmonth is #lifebetweenappointments 

Yeesh, where do I start? Right now my life between appointments is a little chaotic. The number of appointments has increased a thousand fold than what I was used to growing up.  There are more appointments now than I had when I was pregnant with all four kids!

I struggle to keep them straight or where they're going to be. I write them down in a paper planner, my wall calendar, and my phone's calendar. And I still wind up looking them up multiple times because I don't trust my brain's ability to recall.

I'm expected to write down detailed symptoms. I don't recognize symptoms as symptoms. It just feels like a Tuesday to me. But do try to have a normal life, the docs encourage: eat right, be active, get sleep. How do I do that and not wonder if what I'm feeling while I'm trying to be normal is a symptom?
.
.
.
.
#heartfailure #congestiveheartfailure #congenitalheartdefect
Waiting. . . . #catsofinstagram #charliesworld #in Waiting.
.
.
.
#catsofinstagram #charliesworld #instacats #catsofig #catstagram
Day 2 of #heartmonth is #motivationmonday. All I c Day 2 of #heartmonth is #motivationmonday. All I can say, is sometimes motivation feels like the end of a very long tunnel; a pinprick of light in an otherwise black abyss. Motivation eludes me more than I care to admit. When it feels unattainable I feel like the little girl I used to be, opening my eyes in a pitch black room, are my eyes actually open? Making my way across the room, arms outstretched, hoping I don't run into anything, or worse, fall. 
And then other times, like on this Monday, motivation arrives and it feels easy, like a special occasion you'vebeen waiting for. So you wear the anatomical heart earrings your daughter bought you and you don the gifted knit heart cowl your knitty BFF made for you and for a day you feel normal.
.
.
.
.
#congenitalheartdefectsurvivor #congestiveheartfailure #dtga
Today kicks off the first day of #heartmonth. I st Today kicks off the first day of #heartmonth. I still think it's silly to only give one day, one month, or even one week to talk about heart disease. Alas, here we are. 

I'm going to do my best to follow the 28 daily prompts for #heartdisease and #chdawareness but I make no promises.

Today's prompt is #BeyondtheDiagnosis. To me, looking beyond being born with a CHD means a few things:

It's the invisible things that can't be measured on a chart, like the fatigue, sadness for the health I wasn't born with, and the mental math of asking myself if I have enough energy for all I want to get accomplished in a week, or even a day.

It's being seen as a whole person; not the condition the doctors are treating. This a part of me, not all of me. I'm still a parent, friend, writer, a hopeless romantic. Yes, I'm a heart patient, I ALWAYS will be, but I'm also opinionated, stubborn, funny, and a person with real feelings. 

But most of all it's refusing to be reduced to number in the healthcare system, or someone else's discomfort.
.
.
.
#chdawareness
Follow on Instagram

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