Once again, you are NOT invincible

I try to keep up with sports, I love baeball, my favorite team being the Braves. I watch football, consider me a die hard Patriots fan, have been since I can remember. I also try to watch hockey, I always watched hockey with my pops when I was a kid, and also got made fun of for being a San Jose fan, cuz the rest of my family liked the Devils and Red Wings.

Today when I was attempting to catch up with my hockey, I found out that one of the Penguins' defencemen, Kris Letang, had suffered a stroke.

This poor kid is only 26 and was suffering with nausea and dizziness for about a week according to the reports I read.

He had an undetected hole in his heart that may have lead to the stroke.

I pray that he has a full recovery and that this doesn't end his career.

I had to give up a full ride softball scholarship after high school in order to have my second ablation done.

I ended my marathon career on an incomplete marathon (19.7 miles to be exact)

I may have to finish my competative derby career and go non-contact and only ref because of my heart.

I would be devastated if he had to end his career. Not because I know him personally, Not because he's famous, but because I know how it feels to give up on something you absolutely dedicate your life to because of a heart complication.

Prayers for #58

So here's my question...what IS AVNRT???

I made this post first so I can have an outlet for any frustrations with this disorder. So now that all of that is out. What is AVNRT?

Basically it is an electrical conduction disorder in the heart. So there is nothing PHYSICALLY wrong with it, which makes it difficult to detect unless you go in for an EP study or by some grace of God it actually shows up on an EKG, which is actually rare even during an episode.

In normal electrical condution, a heart beat begins in the SA node, travels down to the AV node through a small pathway, down the bundle of HIS, then down throughout the ventricles, which then pushes blood to the body.

With AVNRT, the AV node has 2 pathways instead of one, and one pathway conducts electricity faster than the other, making it send an extra heart beat (dysrhythmias)

Once you heart loses control of the normal heart beat, then it becomes an arrhythmia (no rhythm)


The heart, just like the liver, is a very SMART organ and can attempt to heal itself, many times being successful. When it is NOT successful, your heart keeps trying to counteract the abnormal beat and can lead to tachycardia (a heart rate above 100 beats per minute, above 100 is too fast). Tachycardia puts strain on the heart thus affecting the whole body since the blood flow to the rest of the body has now become compromised.

In AVNRT, if one should be in a tachycardic episode for a prolonged amount of time, this can lead to PVCs (Premature Ventricular Contractions). Your ventricles are NOT supposed to make contractions on their own will, but will do so as a last ditch effort to restore a proper heart rhythm. These PVCs include bigeminies, trigimnies, and ventricular tachycardia (V-tach's)

 Normal Heart Rhythm

 AVNRT (looks similar to normal, which is what makes this difficult to diagnose off of an EKG)

 Bigeminy (note the couples holding hands, Trigeminy will have 3)

V-tach (note that these look like a 5 year old drawing mountains)

Any of these abnormal heart rhythms can send you into cardiac arrest and often feel like a heart attack. (cardiac arrest and heart attacks are 2 different things by the way)

Personally, I have a history of falling into V-tach episodes. The one that was caught on a monitor that started my entire journey was about 2 hours long, with an average resting heart rate (I was sleeping/resting) of 238 bpm. This is what got me airlifted to Albuquerque, New Mexico and got the ball rolling on a 3 year journey to find a diagnosis.

.....whew that was alot of work trying to find smaller terms for all of these so you all can understand!

Your heart is an amazing organ and works hard so you don't have to. Please take care of it as much as possible. Eat right, exercise daily, and de-stress as often as possible in a healthy coping manner.

 

The Bucket List

Alrighty! Well I had a great day, I actually felt decent. I slept well and had a smile on my face all day, so I figured today would be a great day to write a fun post.

Some people might think it morbid of me to think that bucket lists are funny, But I think they're actually a great way to live life to the fullest and to remember that its the little things that count.

I'm always adding things on and finding some new ideas. So this is what I have so far. Some things were added at the moment it happened LOL! so I hope you all enjoy and maybe get some ideas of your own :)

MY BUCKET LIST 

Meet Dr. MLK's physician

Go skydiving

Ride a horse

 Get married

Have a family

Travel to Missouri

Gambling in Vegas (Nevada, not Las Vegas, New Mexico)

Buy my own motorcycle

Ride a bull

Build a Baja bug with my boyfriend

Get my BSN (Bachelor's in the Science of Nursing)

Be a flight nurse

Visit family in Mexico

get a tattoo of my first recorded V-tach EKG that started me on this journey

Learn to sew

Learn to bake

Learn to speak Spanish more fluently

Get a tattoo of my favorite spoons, including the mini gold ladle my aunt bought as a gift

Save a life

Learn to roller skate

Learn to play roller derby

Help someone pass pain free and with dignity

Be less shy, and be myself

Stop worrying about making my parents happy, they'll be happy if I'm happy

Find the love of my life

Go to Senior Prom

Run a marathon

Accept a softball scholarship

Learn to two-step

Be a bridesmaid

Reach my goal weight of 130 pounds (I've gained weight since working out has become harder)

Learn to swim

Go to a Deftones Concert

Some of these sound dumb or unbelievable, but what can I say! My bucket list is tailored to me because I wrote it :) and as for my fellow spoonies, I WILL GET THAT SPOON TATTOO!! Just gotta find the right artist for the job. Much love!

 

 

Measuring Spoons

I recently discovered the spoon theory and I am still attempting to figure out what exactly I need.

The Spoon Theory is a metaphor that many people with different types of chronic illnesses utilize in order to describe to a healthy person what our day consists of and how we have to constantly think about when we plan out our days.

The reason I bring this up today is because my boyfriend is struggling to understand why I have enough energy to hang out with my twin, but not have energy to finish the laundry, etc.

So the way I start, I start myself off with 20 spoons a day. You can't add spoons. Spoons are measurements of energy. With each spoon you lose, you lose a level of energy

This is what my day consisted of:

Spoons         Activity
20................getting out of bed
                    getting dressed (I only wear scrubs to work so it's easy) -1 spoon
19................searching for my name tag and looking every where for my  nursing shoes. -1 spoon
18................driving to work in 30 degree weather without a working car heater. -1 spoon
17................morning medication pass -1 spoon
18...............oh man, I didn't realize I had student nurses today. They easily take up -5 spoons
13...............Lunch med pass. Charting on my shift -1 spoon
12...............Meeting with my boss about my current health issues -2 spoons
10...............paying rent -1 spoon  
9................. going to the grocery store or dinner supplies -1 spoon
8.................(this is 6pm barely btw) writing this blog and just thinking about what I still needs
                    to be done today.  -1 spoon 

What still needs to be done today:
                  1 spoon to take a shower
                  1 spoon to finish the load of laundry I didn't finish  folding yesterday
                  1 spoon to eat dinner because I'm so exhausted I'll need to utilize a spoon  
                  1 spot clean the living room and clean dishes after dinner
                  1 to get ready for bed  
 
    So at the end of the night, I'll have 3 spoons left. -1 spoon if I have a hard time falling asleep....

If I run out of spoons, I will have literally made myself sick to the point I could end up in the ER. It has happened before, and it's not a good feeling. The worst part about only having the 3 spoons left is that I'm a nurse and emergencies happen at work all the time! Today luckily nothing exciting happened. But last week when I had someone dying on me, I used 15 spoons to keep the man alive and stable enough to get the the ER across the street....it happened at 7am...I had 5 spoons left for the rest of my day. I was so exhausted I couldn't even cry if I wanted to (and I really wanted to) by the time I got home.

So for anyone with any sort of chronic illness, I would suggest putting this theory into play and see how your life can improve by planning tasks (spoons) ahead of time. And if someone wants to step in your shoes, this is a great way to express what it is like to HAVE to plan activities around your amount of energy you have.

That Moment You Realize...You're NOT Invincible

Today should actually be a happy day for me. My twin is expecting a baby boy, we found out yesterday, and today we designed the baby shower invitations. I should be excited that I'm getting another nephew and I'll be an aunty again...

But reality has hit me pretty hard today.

I'm not married, but I do have a terrific boyfriend that has given me the world and somehow puts up with me and all my medical issues.

But when is it MY turn to start a family? My oldest sister has 2 kids, my other older sister has stepped into the step-mother role and the kids adore her! And now, my twin is pregnant.

When is it my turn to have kids? Possibly after I have maybe another ablation? Will I end up needing a defibrillator/pacemaker because we cant keep my heart under control? If I do need a defibrillator/pacemaker, what are the consenquences of having one of those while I'm pregnant? Will I have to wear a heart monitor throughout my whole entire pregnancy when I do decide to have kids? Will I have to quit my job as a nurse while I'm pregnant and have my partner pick up the slack not only on household chores, but to put bread on the table as well? How much of this nonsense can not only I tolerate, but how much of this can my boyfriend tolerate also? Will I end up burning him out? How will I take care of my kid when they're crying at 3 in the morning and I dont have the energy/strength to get up and feed?

....is it possible to pass AVNRT to my kid if I do decide to start a family???

This normally isn't something a 22 year old should be thinking about. I should be thinking about having fun and traveling and  just living life being young....

How It All Started

So this right now isn't at all close to where this journey starts. But since it's a new blog, we'll start from day 1 and I'll do my best to make a long story short.

Day one actually is literally day 1, our birthday! Yes, "our". I have a twin sister too lol. My mom carried 2 full term twins (which is rare these days). We were both over 7 pounds. My sister WAS supposed to come out first, but then I decided to breach and stick my foot in the canal causing my mom to need a C-section. You can imagine that in the position I placed my twin and I, I caused plenty of stress on all 3 of us. So when they noticed my heart beat was irregular, it was an expected finding. They sent me home with a heart monitor, nothing came of it. Life went on.

I remember in t-ball I passed out one time at practice, doc says dehydration, makes sense.

After riding our dirt bikes (motorcycles) one day in the summer, I passed out (luckily landing mostly on my bed). Doc says DEHYDRATION

In middle school, the PE teacher was teaching us to take our pulses after our lap. So we all do it, and naturally I yell out what I got: "210!!" thinking it was a good thing. Teacher just assumed I counted wrong, I kinda just said "oops"

So fast forward to Junior year in high school. My twin shared Sports Medicine class with me, and we did mostly standing so the benches were clear for any athletes coming in with injuries.
My twin gives me the most eerie look. She races to the bathroom, comes back and says "Wow that was weird, I just threw up but I don't feel sick."  So I blow it off. about 30 seconds later I get this crushing feeling, I'm looking around and there's this orange tint to everything I'm seeing. I feel light headed and felt this throbbing knot in my chest, the same feeling you get when you smash your thumb with a hammer. There's a 5 foot wall dividing the center of the class that the benches are posted on. So I decide to climb a bench on the opposite side so I can watch a demonstration while I'm laying down. Like I said, this is a 5 foot wall. I had to climb up to the 5 foot bench. so I hop on the 3 foot one, stick my arms out to the tall one so I can prop myself up. I propped up, and never made it to sit on the bench. I'm told I passed out trying to tell my teacher "I don't feel good." I didn't finish the sentence. Instead I woke up surrounded by my sister and my teacher, and he had all of my classmates across the room and out of the way. I hear him on the phone with 911: "I cant count her heart rate and I'm not getting a blood pressure but she's awake and breathing." He asks what hurts, so being completely wiped out exhausted, I bring my hands together over my chest and make them look like a heart. I don't remember much of that day, I'm sure I hit my head, and that was a far way to fall.

The following week I was placed with a Holter monitor and given a referral to UNM Children's hospital to see a specialist (3 hours from my hometown), so I decide it's in my best interest and schedule an appointment. The visiting cardiologist from Stanford decides to put me on an event recorder instead, and I could call in my recordings via landline. I was able to set record up to 5 recordings before the memory card got full. A week later, after softball practice we ran our mile to end the practice. between my twin and my older sister, all of us also being marathon runners, we race to see who can win first. I came back and felt slightly more short of breath than normal. So I decide to make a recording. I get in the car to go home and sit on the recording and waste a recording. I sit down to take my cleats off on the garage, and waste another recording. So I decide to call in my recordings in case I needed em the next day and had no room to record. The tech says "I'm going to ask you to hold on while I get the doctor on the phone to talk to you." I can't believe how naive I was, but I just said "Ok!" like it was no big deal. Doc asks my name, date of birth. I reply. Then his next questions struck me off guard. "Are you nauseous? Can you see ok? Are you short of breathe or have pain in your chest?" "uuhhh...no, I'm actually just getting ready to eat dinner." So he yells quickly, "NO, dont eat, put one of your parents on the phone now."

He then gave my dad instructions to go to ER and that he had called to make sure a bed was available and reserved for me for when I got there. So we pack up quickly and go. we get there and I'm hooked up to a heart monitor/ECG immediately, and nothing much was said. I decide to go to sleep since I had school the next day.

1am comes along and I'm being woken up by a nurse in an air-med uniform. She says "Wake up! we've gotta get you to the plane." So of course I'm like, ok cool I get to get on a plane! I'm driven by ambulance to our local airport. Im then put on a med-evac plane. and head out to UNM. the next day I have an EP study done with no results. So we stay up there for about 2 weeks then come back home.

Years down I'm being helped by medications, and they start killing my kidneys being on them long term. So we decide that we need to do another EP study and try to reach a diagnosis to get me off of meds. We decide the next step is to send me to Stanford Univ. for treatment. So we do. Then we learned that I had AVNRT only 30 minutes into the procedure (There was a clock I could see in the cath lab, I refused to go under, so I was under conscious sedation). We celebrated, I was given a cryoablation (they froze the tissue instead of cauterizing it). And that was that....

 Freeze frame of fluoroscopy of my catheterization. They were awesome and printed it

 for me because I told them my mom is a scrap booker.

...3 years later, here I am, typing this telling you that the ablation only lasted this long, and ended up not being a long term cure for my disorder. So now ill be fighting to advocate for myself the medical care I need in conjunction with my cardiologist.

 I have one appointment down, and plenty more to come...

First NEW Cardiac appointment

Recently I have regressed. So I figured I needed to resume my cardiac care.

I had my first appointment yesterday, I was fitted with my FAAAVORTIE Holter monitor (totally being sarcastic lol)

For anyone who has ever worn one of these, you know how uncomfortable they can be

I did have a whole lot of palpitations/arrhythmias at bedtime lasting for several hours. Hopefully they were enough to get us started in making decisions for our next steps of action.

I am scheduled for an echocardiogram (ultrasound of the heart) on 2/13 and will provide that update as well as my Holter monitor update once I get results.