A Cardiac Crisis and the Monster Mash

The latest prompt from Chronic Babe blog carnival asks: How do you handle a crisis? No matter how hard we try to take care of ourselves, there are times when things go horribly wrong, either with our health or some other personal issue. How do you prepare for such a turn of events? How do you cope in the middle of it all? And how do you recover?

Well, a crisis has to be handled on a situation by situation basis. There are two major crisis that come to mind in my life and I believe I already wrote on one, so I'll talk about the other, more recent crisis I had.

The worst situation, in my head, was to have a major episode of tachycardia around my friends. Though I am not embarrassed by my health and I am happy to talk about it anytime, I knew I would be just mortified if anything occurred while my friends were around. I think it was the idea of appearing weak and sick around my friends that scared me most. I like being the loud-mouthed funny one; not the sickly mousy girl.


So, back up to October of 2007. I decided to throw a Halloween party for my girlfriends. Not just a simple dinner and scary movies party, either. Oh, no. I went ALL out ~ glowsticks, homemade and store-bought decorations, a YouTube channel to loop videos of Halloween cartoons from our youth, a ShoutCAST radio station to play retro spooky tunes as we ate spaghetti topped with my signature homemade spaghetti sauce. I had a variety of movies on hand, ranging on the fright meter from so bad it's scary to mildly gross to downright nightmare-worthy. I even created a few spooktacular games including a horror movie version of WHO AM I? and a full fledged Halloween theme JEOPARDY! complete with final Jeopardy question and prizes.
It was a crowning achievement in my parties, and I was extra pleased that nearly all of my guests were able to come. As we are getting older, lives are changes, careers are blossoming and it's becoming more and more difficult to get together.

Earlier that day I felt a little palpitation at work. No worries; I popped my back-up pill and alerted my supervisor just in case it turned into something bigger. Fortunately, it didn't...while I was at work, anyway!

That evening, my party was in full spooky swing - we had played one game, watched the Garfield Halloween special and were sitting around the dining room table enjoy dinner with Halloween-y tunes in the background when all of a sudden--! WHAM! My heart takes off like a bat out of hell, going into full-blown tachycardia. Remaining calm and quiet about it, I do not let on what's going on. I drink copious amounts of water and take deep breaths, then slowly get up and take my evening pills. Nothing. My heart doesn't even slow down or pause.
I excused myself and go visit my mother in her room, collapsing on her bed and confessing what has been going on. I want to keep it a secret if I could, try and get my heart down on its own. My mom tries to listen and record it with her stethoscope but it was going too fast.

She goes to get another emergency pill I use for rapid heart rate - trying not to meet the eyes of my friends in case they ask where I wandered off to. She gives me the pill, but I am suddenly nauseous and...well, I get sick. Sicker than I've ever been. I have never, ever, once upchucked during a tachycardia episode. This does not bode well. It was time to call it quits, throw in my towel and get my ass to the ER.


My mom went out to my friends and told them - I was too embarrassed (not to mention sick) to do it myself. They were totally shocked, having no clue I what I was dealing with. They tried to clean up a little, just enough to make sure my kittens (only 6 months old at this time) wouldn't get into anything. I changed into my pajamas (the only way to be admitted to any hospital!) and took my electric razor and quickly buzzed off my arm hair.

PROTIP: If you're going to the hospital, shave your arms! You will thank me when the hospital tape doesn't hurt as much.

I tried to crack jokes for my friends, but they were clearly freaked. I was pale, sickly and probably a little blue around my eyes and lips. Perfect look for a Halloween party, but not under these circumstances!
I apologized profusely, lamenting about my ruined decorations, games, prizes, etc. but my friends were of course more concerned about me than getting to dessert and Jeopardy.

They gathered their things and left, and my mom and I left. In front of my friends, I remained collected, calm and even jokey. As soon as they were out of sight, though, and I was in the backseat of my mom's Toyota, I was crying, stressed and utterly freaked out.
This was one out of two situations where I honestly thought to myself, Oh my god, this it. This is freakin' it. It's all over, age 25. Well, at least I traveled...

So it's 40 minutes of these kind of thoughts that I am trying NOT to have. Now, you may be thinking OMG WHY WOULD YOU DRIVE SO FAR? Frankly, I don't trust my local hospitals, especially in an emergency. They're not specialty hospitals, they don't know how to handle me and they've already proven to be incompetent twice over by this point.

When my tachycardia first began, it would send me to the Children's Hospital of Philadelphia ER at least once a month in a four year span. This night blew those episodes out of the water!
It was the actual act of being physically ill that made kept my internal panic button flashing, but I did my best to not think this was curtains for me. When I was finally at the ER and surrounded by doctors that I knew, however, I felt better and was able to calm down. I trust TEAM RACHAEL! and TR! affiliates like Dr. Catwoman with my life. These are the people I knew would save me and make it better. As much grief as I give them, it's moments like these that make them worth every single pill they prescribe, blood test they order and obnoxious stress test they administer.

How did that night end? Well, I'm here, aren't I? They knocked me out and decided to electrically cardiovert me (that's when they get out the paddles and yell, "CLEAR!" on TV) which shocked my heart back into submission. I woke up immediately afterward, feeling surprisingly rested (amazing what 100-400 watts of electricity can do for the body, huh?) and asked how long I'd been knocked out. 30 seconds!

Thank goodness, they found the source for my tachycardia: hypothyroid (crazy what that little sucker thyroid gland can control!) and while I've had a couple of arrhythmia issues here and there, I have, thankfully, not been to the UCLA emergency room since October of 2007.

So, long story short: How do I handle a crisis? Get my butt to TEAM RACHAEL!, stat!

Heart to Heart: Meg

This is my series of interviews with adults and teens living with cardiac issues – mostly congenital heart defects. You are invited to learn more about the individual behind the obnoxiously long Latin medical term and perhaps you will decide to reach out – to an organization that benefits those of us living with CHD, to an individual you were previously too shy to talk with, to a community now that you realize you are not alone, or perhaps to me if you are someone living with CHD and would like to be interviewed.

Question: Can you tell us your name, age, occupation and the type of congenital heart defect you were born with.

Megan: Megan Gilmartin, 17, I'd like to be a cardiovascular surgeon, and I was born with a clef in my mitral valve, and a hole in my upper and lower chambers.

Question: How many surgeries have you had, if any, and what did they accomplish? How old were you when you had these surgeries?

Megan: I have had 2 surgeries, and they replaced my mitral valve with an artificial one and closed up the holes in the upper and lower chambers. I was 18 months when i had my first surgery, and 2 years old when i had my second.

Question: What were your parents like when you were younger living with CHD versus their current attitude? Were/are they overprotective; did they restrict you in any way?

Megan: My parents weren't too protective of me when I was younger living with CHD. They wanted me to live a normal life like kids my age. If someone started to cradle me they would take a different approach on things so that the person would see that I was a strong individual.


Question: How did your health issues affect your school life and your social life, as a kid and teen?

Megan: My health issues didn't affect my school or social life as a kid or a teen. If anything it has given me something to talk about with people. Most people don't see my scar because it's so faint now, so when I say something about it they are really surprised and they want to know more about it and what happened.

Question: Has your health limited you in ways you cannot control/alter?

Megan: I was lucky enough that my heart has not limited me in any way. I run on my high school's cross country team and am very active with hiking and backpacking.




Question: What has been the most annoying aspect of having a CHD?

Megan: the most annoying aspect of having CHD for me has to be the medication that I have to take, followed by the blood tests I have to take to make sure I'm on the right dosage of meds.

Question: You were able to attend a camp designed specifically for kids living with cardiac problems. How has this camp helped and influenced you?

Megan: This camp has given me so much confidence and strength in life. At this camp I have learned that I'm not the only person out there with CHD, and that I really got off lucky. I could be someone who has a heart defect that holds me back from doing a lot of stuff or that needs 40+ pills a day. This camp has also taught me a lot of life skills like how to be a leader and how to interact with different people.

Question: When facing serious health issues, how do you keep from stressing out or dwelling? Do you have a strong support system?

Megan: When faced with serious health issues it is very hard for me not to stress out. I stress very easily so I usually go straight to my friends. My friends from camp help me get through health scares and so much more. They understand what I'm going through and are very supportive and I don't think I could make it through anything without them.

Question: To date, what has been the most frightening moment in regards to your health?

Megan: To date the most frightening moment in regards to my health was when I needed my surgeries. I haven't really had any health scares.


Question: What are your hobbies and passions? What kind of future do you want for yourself? (Career, etc)

Megan: A few of my hobbies and passions are running, singing and hiking. When I'm older I would like to be a successful cardiovascular surgeon. I'd like to help people like me.


Question: How has living with CHD affected your view on life?

Megan: Living with CHD has really given me a positive outlook on life. It has shown me that even if you're different, it's okay to be happy. And that you really want to live life without regrets or grudges because you only live once and you want to make your life the best that it can be.

Question: Do you consider yourself "different" from your peers due to your experiences living with a congenital heart defect?

Megan: I do consider myself different, but in a good way. I consider myself lucky. I have been able to experience different things in life, like camp, that I wouldn't have been able to if I never had a congenital heart defect. I would have never been able to meet the people I did or learn the things that I have. So yea I'm different... but hey, I kinda like it :]

If you would like to share your story or nominate someone to be interviewed for a Heart to Heart, please do not hesitate to contact me.

A Letter to Medical Students

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Dear Baby Doctors,
This is an open letter to all of you med students, interns, and residents out there who are training to become real, full-fledged doctors; specifically those that will be dealing with patients living with a chronic illness. Like me. *grin* Think of this letter as a guide, as helpful tips and advice from the other side of the stethoscope.

1) Check your ego at the door
I know that House is all the rage on the boob tube, and don't get me wrong, I love me some Hugh Laurie but if you think you can get away with treating a patient like Gregory House treats his, think again. Grumpy, in-your-face, Vicodin popping, egomaniac doctors make for great television but a poor doctor IRL.

2) Newsflash: You are not God
Guess what? You are, in all likelihood, not going to cure me. Oh, sure, you'll probably be able to patch me up and get me to my next few birthdays - and trust me, I will thank you for it! - but as far as curing me, or most of my chronic illness friends? No. It's best that you learn this now and get used to the idea because I don't want you to beat yourself up later on. You do tremendous work and it isn't fair to anyone, especially yourselves, when you cannot meet unattainable expectations. It isn't about fixing us; it's about treatment and communication. If, by chance, you happen to sneeze into some petri dish and cure cancer or have an epiphany at 3:41 AM about how to rewire all of my innards, great. But don't hold your breath.

3) I want to like you, but I can't (initially)
I've had a rough time dealing with med students in my childhood. For years I was their guinea pig. I'm meeting you with a chip on my shoulder, a sour attitude and the stink-eye. I'm gonna eye you up and down gangsta style. All of this will be within the first thirty seconds while your attending (my doc) explains the extra body (that's you) in the room. If you follow the warm meet and greet as advised, though, my chip will crumble, my attitude will brighten and my eyes with gleam with welcome.

4) You are more afraid of me than I am of you
Just a fact. Doesn't have anything to do with you personally, merely that I am used to this dog and pony show.

5) It's all about relating
Frankly, I'm not impressed by your clean white coat with your name embroidered on it or the fact that your handwriting is on par with the Manson family, or how many meds you can potentially prescribe me. What will impress me is your knowledge of Harry Potter or the latest season of True Blood. You'll be my BFF then, bb.

6) Know Thyself
I know that you're all learned and stuff, but your chronic illness patient lives in their body 24/7 and some, like myself, have been living with their chronic illness since birth. That is a substantial amount of time to get to know ones body and become instinctual when shit hits the fan. It is vital for you to disregard all of that old school mumbo jumbo your hard-ass professor said when s/he told you that your patient knows dick. It is your position to team up with your patient, your NP and anyone else overseeing your patient and establish open, honest communication that includes you listening to what they are telling you about their body and you using all of that book learnin' to put the pieces of the puzzle together. Together, this combo will allow you to you give your patient the best possible treatment, which turns you into your life-saving alter-ego, SUPER DOCTOR! You won't have a cape or anything, but your awesome powers of communication, trust and honesty will endear your patients to you. Who knows, you may even get to save some lives along the way.

7) Warning: patient bites
My biggest beef with med students is the robotic way in which they have treated me in the past; like some lifeless, nameless specimen that was there right to poke and prod as they saw fit. Now? I bite back, so I as I've suggested before, greet your observation patient with a warm smile, a friendly handshake and some small talk. We'll not only love you for it; we'll remember your name and may even keep an eye/ear out for where you go. If you stick around the same hospital we attend, hey, we might just want to put you on our team. Isn't that something?

Well, I hope you're not too insulted (let's face it; this entire post is vengeance for all of those times when some smug 25 year old put the cold-ass end of a stethoscope against my skin and hissed at me when I cringed) and I hope, despite my brass, you learned something new (other than you never, ever want me for a patient). Remember: It's all about mutual respect, open communication, and knowing what's going on in the zany life of Sookie Stackhouse!

And if you are insulted...lighten up, it's my blog. Be thankful you haven't had your chest cavity sawed open four times and just watch this video of baby animals:

Baby Animals!

By the way: I'm totally available for in-person speeches about building healthy, sustainable doctor-patient relationships, emphasis on chronic illness patients! ;)

How I deal with the medical establishment

How to deal with the medical establishment is the topic proposed for the current ChronicBabe Blog Carnival.

Annie blogged about health care; I don't think I am emotionally or psychologically prepared to talk about health care right now. Going through what I went through to obtain health care, what I go through to maintain it, and what I sacrifice in my life to keep it has made me develop some severe anxiety. So not ready to blog about that. Instead, I'll give my profound and sage advice on dealing with New Doctors, Baby Doctors and Hospital Stays.

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HOW I DEAL WITH...

New Doctors
Throughout my life thus far I have had eight (including my current) cardiologists. I've always had a chip on my shoulder in regards to meeting new doctors; my bravado is what I use to size up the new white coat in my life and I see who will take my crap, who won't and who will dish it back at me.
This is an attitude I have carefully cultivated over the course of my life because it is the only way I can push the fear aside and let things be all right. My humor is my shield against the cruel realities of my health and I use it generously because the alternative is to hide under the covers and cry. That is not a long-term answer. Being a borderline ass is something we can all deal with, though.

Remember: Like many a-thing in the wild, doctors are more scared of you than you are of them. Look them in the eye, give them a firm shake of your hand and be vocal, open and honest about absolutely everything in your life, regardless if it pertains to your health or not. They need to sniff you out and realize you are a creature to be respected as well!

Baby Doctors
The only people who I never mouthed off to as a kid were the student doctors - those pesky little shits who, without a friendly "Hi, how are you today, little girl whose name I can't bother to remember? Do you mind if I listen to your heart?", would just come at me with their cold stethoscope and have a go at listening to my unique heart.

These people needed a slap of respectable bedside manner lessons and by the time I reached my late teens, I wasn't having it anymore. If any of them came at me with so much as a flashlight I held up my hand and made them introduce themselves to me, shake my hand and ask my permission to manhandle me. Then we'll get along real nice. :)

Hospital Stays
- Label everything you own and send what you can home. Tie a string around your wrist and the drawer you keep your belongings in so if some snoopy prick decides to rummage through your goods you can catch them in the act (I once had a pair of PJs and a book about the Poky Little Puppy stolen. I am still bitter about it twenty years later)

- As soon as you are admitted, demand to see a menu for the next day's meals and fill it out as soon as possible. TRUST ME; you're going to get the left overs of a hard boiled egg, prune juice and stale, dry wheat toast otherwise.

- Always go for the green Jell-O

- Never be afraid to just say NO to student nurses who want to try and take your blood.

- Always ask if the Super Nintendo or whatever game system they have lying around can be wheeled in to your room and hooked up.

- Always bring the essentials from home: Toothbrush, toothpaste, deodorant, hair ties and hair brush. You will feel less gross.

- If you're too cold, ask to have a heated blanket...or three.

- If your room has a dry erase board, leave little messages of appreciation to your nurse. Buttering her up can have massive bonus points, especially when your fighting your roommate for control of the TV.

- Always take a souvenir to remind you of your stay. Here's mine from last year's heart catheter:



This is how I deal with the medical establishment; with irreverence and petty larceny.

Heart to Heart: Daria

I am beginning a new series of interviews with adults and teens living with cardiac issues - mostly congenital heart defects. You are invited to learn more about the individual behind the obnoxiously long Latin medical term and perhaps you will decide to reach out - to an organization that benefits those of us living with CHD, to an individual you were previously too shy to talk with, to a community now that you realize you are not alone, or perhaps to me if you are someone living with CHD and would like to be interviewed. Don't be shy, we're all in this together.

Question: Can you tell us your name, age, occupation and the type of congenital heart defect you were born with.

ANSWER: Daria Stancikas. 17. Full time student. My defect is Corrected L-Transposition with Pulmonary Stenosis. (meaning: ventricles backwards, and closing off of the pulmonary artery) I also had a VSD at birth but with my heart CATH at three years of age we found that the VSD had closed small enough on its own.

Question: How many surgeries have you had, if any, and what did they accomplish? How old were you when you had these surgeries?

ANSWER: I have been asymptomatic since birth. I've been lucky enough to get this far without any surgery's.

Question: What were you parents like when you were a kid living with CHD versus their current attitude? Were/are they overprotective; did they restrict you in any way?

ANSWER: My parents kept me very unsocial and protected my first three years of life so I could stay healthy and not get sick. But now there more free.

Question: How did your health issues affect your school life and your social life, as a kid and teen?

ANSWER: I was always embarrassed when I would have to wear a 24hour Holter monitor, but I have been really blessed and not limited in activities.

Question: Has your health limited you in ways you cannot control/alter? (ex: not being able to go for a particular occupation in life, travel extensively, climb a mountain, etc.)

ANSWER: No, this is where I'm super blessed and have no limitations. My parents and doctor call me a "walking miracle"

Question: What was one of the most obnoxious questions you've been asked or assumptions you've faced in regards to your heart health?

ANSWER: I always get asked "Are things harder for you?" and "Does that mean your going to die sooner?" and sometimes after explaining the whole thing people say that it is cool. haha

Question: How is life with your health easier and more difficult as an adult than it was when you were a kid?

ANSWER: Actually, when I was younger it was easier for me because I wasn't as alert to what is going on in my heart. Now its more difficult because I understand how scary and real it really is now.

Dar ~ my heart camper turned friend!

Question: When facing serious health issues, how do you keep from stressing out or dwelling? Do you have a strong support system?

ANSWER: Sometimes if I'm really sick I get worried about how it could effect me, but for the most part My system is well and I usually fight off a cough or cold or flu whenever it comes around.

Question: To date, what has been the most frightening moment in regards to your health?

ANSWER: My most frightening moment was when my doctor was talking about surgery and was almost ready to do it. Thankfully they didn't do the surgery. Also, I remember very little of my last heart catheter, because I was 8, but what I do remember was definitely scary.

Question: What was your attitude about your heart health like when you were a kid, and then as a teen?

ANSWER: When I was a kid, my attitude was really no big deal. Like I didn't care that I had this defect. Now that I'm older and understand, I do feel scared at times and worry. Sometimes in sports I feel like maybe if I didn't have this defect I could be better. But God has a purpose for me and wanted me to have this defect, and of everyone in my family, I'm glad I got landed with it instead of one of them.

Question: What are your hobbies and passions?

ANSWER: I love being with friends and going where ever we want. (beach, movies, sleepovers) I also play water polo and swim.

Question: Having heart issues is what is known as an "invisible disability" Have you had any instances when people just didn't get it and gave you attitude because they couldn't "see" your heart issues?

ANSWER: Not really, Sometimes people think its a joke when I say it. But after explaining the whole thing and showing my Medic Alert bracelet they believe me.

Question: What has been the toughest part about living with heart health issues?

ANSWER: The hardest part for me is just when I think about the future and how this will effect me later, will I need a surgery? Will I not live as long of a life now? Just stuff like that; that worries me.

Question: Many people do not realize there is humor even in the oddest of moments. I know I tell stories that are funny to me but kind of horrifying to anyone who has never known a single person with health issues. Do you have any funny CHD/health moments you can share?

ANSWER: Although i don't remember this, my mom says when I went into one of my heart catheter's at age 3, I was telling everyone "knock knock jokes". Also when I was younger and had my regular heart check up my mom told me the EKG was stickers because the leads stick to you & the electrocardiogram was called "the lollipop on my chest" because it was sticky gel they used to move the transducer.

Question: You have been one of the fortunate heart kids who have grown up with friends who also share the CHD commonality. How has these friendships helped you, and what makes them different (if at all) from your friendships with people w/out CHD?

ANSWER: I met Megan my second year at CDC (Camp del Corazon) and we have been friends for 6 years now. we always try to find time to hangout and I feel like she understands me and I understand here since we both have heart problems. I love knowing that I'm not the only one who has to deal with this. It's different talking to her about it other then my friends without CHD because they get confused when I tell them what I have and it feels like they don't understand it as much as someone with a heart problem would.

Thank you, Dar, for sharing your story with us!

If you would like to share your story or nominate someone to be interviewed for a Heart to Heart, please do not hesitate to contact me.

Background: I first met Dar when she was a fourteen year old camper at Camp del Corazon, a non-profit I volunteer with. Dar and her group of friends quickly became "my" kids, a group I look forward to seeing each year. Daria graduated camp last summer and I am eagerly anticipating her return in a few years - only this time as a counselor!

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