Wednesday, April 27, 2011

Adults with Congenital Heart Defect Conference

Well, love-monkey's, you are going to have to wait a few more days before I can get to part IV of No Babies Allowed because tomorrow I'm packing a suitcase and headed for a four-day adventure at the LAX Marriott for the Adults with Congenital Heart Defects Conference. I'm in charge of the social committee, if you can believe that shit, and I'll be doing all sorts of fun crap in the Hospitality Room starting tomorrow. We'll be playing icebreaker games, scavenger hunts and all sorts of ways to force friendships upon strangers.

If you're going to be there, come up and say hey. I promise I won't bite - unless you interrupt me as I'm napping by the pool, 'cause that's where I plan to be in between panels.

No Babies Allowed! (part drei)

OK, so let's get caught up and dive in.

Part One: Babies = bad. Sterilization = good.

Part Two: Dr. Melonbrains withholds birth control pills and I get an IUD, which self-aborts in 4 days.

We all caught up?


Now, some of you - those of you who know me - probably thought, "Gee, Rachael, why would you see a Lady Doctor that isn't affiliated with UCLA?" (where TEAM RACHAEL! is) and it is for 2 reasons:
1) Bitches don't take my insurance
2) I had a horrible experience with a cunty doctor who actually made me feel guilty about being on birth control pills. I was there to take care of some ovarian cysts, not get a lecture about my barely existent sex life. It didn't help that she was 7 months pregnant and full of judgment.

OK, I wanted to address that before we moved on. Now, where was I? Oh, yeah. In agony.

I didn't blame the IUD for self-aborting. I thought it was just my body reacting to a foreign object. I'd still recommend an IUD for a lot of people. I was just frustrated that I had to make a decision on whether or not to do this AGAIN or figure out something else. To add insult to injury, Dr. Melonbrains was on VACAY! and wouldn't be back until the 15th, when I already had the good mind to have a follow-up appointment scheduled.

On Monday morning I tried to get in touch with my old gyn, who as I said previously, works in the same office space but is not actually affiliated with Dr. Melonbrains, who has a male partner. The Front Desk Ladies From Hell (another post unto itself) would not even hear of it. I betrayed my goodly gyn and crossed to the dark side, so now I had to just live with it.
SOMEDAY, FRONT DESK LADIES! SOME FUCKING DAY...!

So I got in touch with Dr. Melonbrains partner, Dr. Faaaaaaaaabulous! Our conversation went something like this:

ME: This IUD came out. Give me my $700 back and some goddamn birth control!

HIM: Ew, vagina's! Why did I go into this business again? Yeah, get you cleaned up and Imma call in some pills. I hope you bagged that bitch up so you can get a refund.

ME: Bitch, I wasn't about to let $700 flush away!

US: HAHAHAHAHAHAHA! Gross.

ME: You think I should do this again?

HIM: Fuck no. Ew.

So I wait around and when the 15th comes Dr. Melonbrains is not as appalled as I thought she was going to be. What I failed to mention in my last post was how confident, and dare I say, full of herself she was when it came to the IUD. She went on to brag that she never had any patients have complications - and while she "knew of other doctors whose patients experienced complications" she had a perfect track record.
I was kind of proud of myself to ruin that for her.

So we went into her office where she confessed something.

Dr. Melonbrains admitted she did not secure the IUD in my uterus. She was "uncomfortable" with the amount of hormones that the Mirena IUD would release into my system so she was just HOPING that the IUD would behave itself and somehow know it ought to stick around in my lady parts for you know, half a decade.

Now, imagine if you will, the self-control I exercised when I did not immediately punch her in the tits after confessing this to me.

In moments like this my brain goes off somewhere to protect the rest of my body from getting into a physical altercation and wind up as somebody's bitch down in county. I get kind of light-headed and dazed so I'm more prone to agree to anything just for the sake of getting the fuck away from the situation that is pissing me off so much.
So when she suggested I have a partial hysterectomy I was like, "YOU KNOW WHAT? BRILLIANT!"
She had the genius idea of writing me an order even though she knew I could not have it done at the hospital her clinic was adjacent to because I am a cardiac patient. I didn't tell her how stupid this sounded, but took the order anyway and inquired about what I should do in the meantime. It's not like I can just walk into UCLA and demand hysterectomy's like I'm ordering an Eggnog latte at Starbucks.

"With that order I gave you, that should get the ball rolling and they'll see how in need you are for this and hopefully schedule it after a consultation."

Hm. Sounded easy enough, so why not?

"OK," I said, sticking to my guns. "But I do need something to get me by until then."

She decided a NuvaRing would be perfect to patch me up with. After explaining to me that I take it out 3 weeks from the day of insertion, I then asked what I should do after that one had to come out.
Loftily, she replied, "Oh, I can just switch it out if you want to come back."

Though sick to death of coming to this clinic, I just nodded and moved on to my it other order of business. Approaching the front desk, I slapped down the Ziploc bag containing the fallen IUD and said, "I'd like my $700 back, please."

Mirena IUD: $700
Bus Fare: $3.00
The look of horror on a medical office ladies face: Priceless.

"We'll send you a check in the mail," she promised and before long I was on my merry way.

I conferred with TEAM RACHAEL! who recommended a couple of UCLA-affiliated Lady Doctors, the first of which I passed on based purely on the fact that he was a dude and my general attitude toward straight, male Lady Doctors has always been a little backward and archaic ("What the hell would they know about my lady parts?" being my general response) so I went with their second suggestion, whom I'll refer to as The Wizard (because Doctor Oz is already taken).

My appointment was just over three weeks, right when the NuvaRing would need to come out. I still had a couple of weeks worth of birth control pills leftover when Dr. Faaaaaaaaaabulous prescribed them to help with the side effects of a self-aborted IUD.

I wasn't precisely sure what to do when the NuvaRing expired because while my insurance did not cover it, Dr. Melonbrains invited me back to her office to have it taken it out and possibly get a new one in? She used a sample last time, maybe I could explain to her about the impending appointment, she'll see that I am not dicking her around; that I am really going through with this and she will be more than likely to give me another sample (or 2, or 3). I called her office to confer.

This is what the conversation went like:

ME: Hey, so what's up when this NuvaRing is supposed to come out? Dr. M said to just come in and she'd take it out, but what then? My insurance doesn't cover it and I need something to keep me in check so I don't (a) have babies (b) kill everyone with spiked Flavor-Aid when PMS settles in.

FRONT DESK GIRL: Oh, it shouldn't be a problem! Yeah, we have samples all over the goddamn place. No worries, just pop on in! Sunshine and rainbows for everyone!

ME: Cool.

I get a call later that day; it's the front desk girl.

FRONT DESK GIRL: (in a solemn, nervous voice) Uhm. Uhm. Dr. Melonbrains said that she's uncomfortable giving you NuvaRing more than once because of the estrogen and uhm, stuff.

ME: You have GOT to be shitting me. That bitch told me to come in and she'd take care of it!

FRONT DESK GIRL: B-b-b-b-ut you can talk to her all about it and discuss your options when she calls you back tomorrow, okay? She's going to call you back tomorrow and you two can figure it out.

ME: Fine. (I am too exhausted to put up an argument with this little girl, who is, after all, just the messenger)


I never heard from Dr. Melonbrains again.

Monday, April 25, 2011

No Babies Allowed! (part deux)

So, where was I? Oh, yes.
Sterilization: good.
Getting Knocked-Up: bad.

I'm glad that I'm with a fella who not only accepts this decision but accepts my health issues as a whole and is there when I need him. He even put on a dress shirt when he met TEAM RACHAEL! for the first time (collective "D'awwwww!"). Not that he really has a say in my lady business anyway, or that I'd ever be with a guy who needed his woman to give birth to His Offspring. I'm a Strong Black Woman (minus being black) and I ain't got time to deal with a man's ego about his legacy. My guy wouldn't mind passing on his genetics, but he's a big believer in surrogacy.

I don't want to get in on the drama that has been Going to the Lady Doctor and my history with trying to get my Lady Doctor to settle down, stop running off and having babies and take my insurance, goddamnit. She's always been a supporter of me getting a tubal litigation. I kept in on my mental back burner up until the top of 2011, when I wanted to just check out my other options. Through a mistake of my own making I ended up having to go and see another Lady Doctor - same office, but across the way. My mother sees her. We'll call her Dr. Melonbrains.

Dr. Melonbrains was a pussy and kind of a moron. She was terrified of my heart condition and while she believed I should have a more permanent, let's-not-rely-on-shitty-birth-control-pills-forever form of birth control, the way she talked about birth control was as if it had taken part in the Holocaust and now enjoyed a lonely but well liquored exile in a South American country.
"I'm not comfortable prescribing birth control to you." Her exact words.
Her fear was well-meaning, but definitely overblown. I had been on blood thinners since October of 2002 and this made her nervous. Birth control had little to nothing to do with my need to go on them, especially because at that time I was on a pill that had no estrogen.

She kept pushing for an IUD. The way she talked about it I thought rainbows and sparkling unicorns would be positioned across the lining of my uterus, warding off any would-be fetus cocktail with their magical powers.
"OK," I sighed, realizing I needed to say something vaguely affirmative just to get her to let me put my pants back on. "Listen, I can't make any decisions like this on my own. I have to run it by TEAM RACHAEL! If they give me the OK, I'll go through with it."
That shut her up and she sent me on my way. I was so eager to get the hell out dodge that I forgot to inquire about my pills. No problem, I figured. I'd just order them through my pharmacy and they'd get the prescription. I mean, I went to my Obligatory Lady Check-Up, so it was her turn to make good.

Well. Turns out when she said, "I'm not prescribing birth control pills to you." what she obviously meant was, "THIS BITCH IS GONNA CLOT ANY SECOND AND SUE YOUR DUMB ASS FOR PRESCRIBING BIRTH CONTROL PILLS!"

Her fanatical fear was not unlike a four year old's fear of the boogie-man. It would have been adorable if it weren't me being denied the one form of birth control I'd known and relied on since the age of 17.

I was flabbergasted. Who the hell was she to overwrite what my cardiologists had already approved of? True, I'd like to break free from the pills, but not without a solid back-up plan already set in stone! Aggravated, but feeling like this was the match lit under my butt to stop worrying about whatever pain I may or may not be in when I get the IUD in and confer with TEAM RACHAEL! They were very supportive of an IUD, gave me their blessing and I had it scheduled for the first week of February.

Tuesday, February First: IUD goes in.

Saturday, February Fifth: IUD self-aborts.

to be continued

Sunday, April 24, 2011

No Babies Allowed!

I know that childbirth, pregnancy, motherhood and all things FEMALE ISSUES related are topics that are traditionally taboo, but that is totally patriarchal doctrine fear-speak, so I'm going to ignore that bullshit and dive head first. I will back pedal this once though and say that it has taken me up until very recently to be able to share my thoughts in this area with perfect strangers. This is for a few reasons:

1) I have a mental reflex that tells me I should never, ever discuss my woman problems with anyone outside of my mother and my lady doctor. I have no idea where this reflex came from since my mom did not bring me up to not share shit. My girlfriends usually have to pinky-swear that they REALLY want to hear this stuff and that I am not giving them TMI.

2) I've been working with kids since I was a kid. Pissing Parents Off is like shooting fish in a barrel. Certain Parents get their knickers in a wad over the most mundane shit that has nothing to do with them and their kid, but because there is SOMEONE out there in this vast, vast world that DARES to disagree with what they believe is the gospel truth about procreation and child-rearing, they must reach way deep down and bring out the Rampant Asshole Within.
I have been face-to-face with the RAW many-a time, but have yet to feel the flaming wrath of the parental internet troll because I am smart enough to never bitch about anything childcare related in a public form.

WITH THAT SAID - if anything I say in the following post (and subsequent posts) offends you and makes you want to send me a comment detailing why I am wrong and will be promptly sent to hell for whatever beliefs I practice in my own personal life, I want you to keep in mind that you have better things to do then read the inane babbling of some stranger on the interwebs. Who will not be persuaded one way or the other by the frothy rants of another stranger on the interwebs. We savvy?

Here we go.

I've been debating permanent sterilization for years now, but only since Boyfriend has come into my life have I been actively pursuing my options. People without cardiac issues have been timid to ask me about the whole having babies thing, and this is what I tell them in a nutshell:

I was fortunate enough to have been advised from an extraordinarily early age in my life that adoption was the best option for me. There may be a chance for me to give birth, but that chance was always accompanied by a frown on my cardiologists' face. No one wanted to say, "YES, GO FORTH IN PROCREATION!" and no one wanted to be the negative Nancy and say, "GOD NO. CLOSE SHOP BEFORE THE FACTORY EXPLODES!"

Throughout the years, being keenly aware of my own body's limitations, witnessing the struggles of parenthood from a caregivers POV, and learning about the role genetics play on ones health, I decided that it would be in my best interest to never risk giving birth. It would be completely irresponsible on my part to gamble with my life and the life of another just for the sake of what? Passing on my oh so wonderful genes? Hell no. While I have a deep maternal instinct (shut up, fuckers, I do) it is not strictly reserved for my own kin. I know in my heart of hearts I could love any kid, any age, any race if given the opportunity. I did not have that overwhelming desire in the depths of my heart and soul to have my own child. Some folks do and cannot imagine (or are incapable of) loving any offspring other than their own. It's OK. Hundreds of thousands of years worth of biological instinct can be tough to shake up.

Did this decision come easily to me? I had some trouble wrapping my brain around it when I was a teenager. I thought I knew everything and I had very romantic, and frankly, fantastical, ideas about childbirth. Once I grew up and started a career in childcare, though, yes, the decision came very easily and with a finality that you would never guess such an indecisive person like me could accomplish.

Does my biological clock tick? All. The. Fucking. Time. It doesn't just tick, either. It blares in my head like a foghorn calling to mist-covered ships in search for the safe and familiar. I look at pictures of friends babies and my uterus feels like it just got sucker punched. Some primordial mental voice yells at me, "YOU NEED ONE OF THOSE! GET ONE! WE WANTS THE PRECIOUSSSSS!"

Then I have to beat it back with a stick I've named REALITY CHECK and reason with the voice.
"Oh, yes. Let's have a baby. Where shall it sleep? My shoe rack or just stick it in the cubby on the cat tree?"

That usually quells those biological urges to find the Ideal Mate and procreate and do all of the stuff anthropology class taught me in community college. Quells until I see the latest set of pictures from my boyfriends friends - who had triplets last year.

So a decision had been made and it was time to shop around for my options on the best way to close down the factory before any accidents happened. I'll get to that in another post, though. Stay Tuned.

Saturday, April 23, 2011

Infamy at 300 beats per minute

For a brief, yet poignant time in my childhood, I lived in King of Prussia, Pennsylvania – just 40 minutes west of Philadelphia, where I was a patient at Children’s Hospital of Philadelphia (CHOP). The five years I spent in this little town brought me the most profound experiences that would shape the adult I am today, from the two wonderful elementary teachers whom I still attempt to keep in contact, to the two life saving open heart surgeries (performed by Dr. Norwood himself, if you don’t mind a little horn tooting), to forming the two most meaningful relationships of my life; that of my cat, Mr. Destiny (hello, crazy cat lady here) and my best friend, KD.

Those five years saw me in and out of the hospital more times than all the rest of my years outside of the 19406 ZIP code put together. My heart “problem” (as we so lovingly referred to it) was well known throughout the town, especially those unfortunate individuals who happened to either work or attend or have some affiliation with the elementary schools I attended because I was at school just as much, if not more, as I was at home. My health reached new levels of high tension drama, one that could quite easily rival any prime time medical show (I’m looking at you, Dr. House!), and one instance my heart having a throw down with me garnered enough attention to send me in local King of Prussia infamy that still follows me today.

During the winter of early 1990, between my second and third open heart surgeries, I was enjoying a peaceful morning in my first grade class. My teacher, Ms. Twiss, chose myself and another little girl to take the slips of attendance and lunch orders up to the office and cafeteria, respectively. This little girl and I…did not get on well. She did not like the way I looked, and I did not like the way she displayed behavior common to a sociopath. We made the walk up to our respective destinations in silence, I to the office first while she went on to the cafeteria. As we were instructed to go together, I knew we would have to go back together as well. I waited in the main foyer for her return from the kitchen when BAM! Everything went black.

The next thing I knew I was lying on the overstuffed, split-pea green vinyl bed in the nurses office while phones were blaring, people were rushing in and out, talking in rapid, tense tones and panic rose in the air. The nurse, dear Mrs. Noll (whom I would later see in my adult life and thank profusely, though there are no words to express the gratitude I feel for this woman) told me to lie still, my parents were on their way.

I caught on that something was amiss, though I laughed it off and insisted I was fine, cradling my head in my arms Ferris Bueller style to emphasize my point. That is when I saw it – my thick, mint green and pale pink woolly sweater leaping in rapid palpitations from my chest, over and over and over, as if it had suddenly been given the Powder of Life. It was tachycardia – and after the initial shock wore off, embarrassment set in. WHY HERE AT SCHOOL? OMG!

My parents were soon by my side, paramedics on their way but caught in traffic. TRAFFIC? Traffic! What could they do; they were a good twenty minutes away and I needed to get to CHOP now. It was decided that the spacious field beyond the baseball diamond would be made use of by the hospital-issued helicopter and I would be air-vaced to the Childrens Hospital of Philadelphia. I believe my reaction was, and I may be paraphrasing, “Rad!”

Embarrassment was gone, and what I oft refer to as my patent False Bravado (a self-preservation tool) officially kicked in. I could hear the principal speaking with my classmates in the cafeteria; she had wisely decided to hold an impromptu assembly so as to keep little busybodys away from the windows as the medics strapped me in my own luxury seat and wheeled me to my first class position on the waiting helicopter. On our way out, I caught sight of local news vans and told the medics my left side was my best side. They laughed and secured me in my sweet new ride, my dad buckling up near me, ready to join in on the adventure.

When I eventually returned to school, my best friend proudly showed me the newspaper where my aerial had a write-up and told me I even had a spot on the local news. Dude, I was famous.
Fame is fickle, though, and not a year went by afterward nor in the years after I would move from Pennsylvania and return irregularly for visits that a person stopped me, mid-conversation and cried, “Oh my GAWD! You’re Rachael Faught? You’re the Little Girl with the Heart Problem? You’re the one that got picked up in a helicopter? I totally thought you were dead!”
Moved to Fresno…dead…you know…same difference?
(Just kidding…go Bulldogs!)

I’m never insulted, however, because I always take great comfort in the fact that upon realizing who I am, though perhaps we had very little interaction as children, these well-meaning individuals always seem extraordinarily relieved to discover I am alive and (relatively) well.
Twenty years later, their peace of mind at unburdening them with thoughts of a fallen peer still never fails to bring a smile to my face, and determination of survival to my spirit.

Friday, April 22, 2011

A side dish of hot burning guilt


via

Guilt is the theme for the latest Patients for a Moment blog carnival, which I just so happen to be hosting as well. Guilt is a common theme amongst those of us living with a chronic illness, be it a congenital heart defect, cancer, lupus or any number of life-altering diseases. Whether we were born with our illness or not, no one ever gets "used" to be accommodated; I'm certainly not.

Guilt never became a regular factor in my life until the year 2007, when I was planning to move into an apartment at the small complex my mom and I currently live at. Our landlord was going to rent it to me for a generously low rate and preparations were underway to make it mine: We were clearing out the mess left by a family member of the owner, as well as previous renter, cleaning, going over paint swatches, changing locks, buying art for my wall, etc. Everything was looking up.

One night I calculated how much I would need every month to live. While my job was fabulous for a part-time gig, I was only permitted to make so much because I was receiving financial assistance as well (something I originally did not sign up for, but came with my government issued insurance) Combined together, I could just barely swing it. I'd be living on a budget, but I could do it.

But I would have to be kept reliant on government money, the controlling, domineering, keep-you-down money. Being with this program gave me intense anxiety like I had never experienced before in my life. I was afraid to open my mail, afraid of the changes they made because I made fifty cents over my allocated limit, afraid of the hoops they constantly made me jump through, making me feel subhuman as I had to constantly prove I was still ill in order to receive my insurance.

With a heavy heart, I knew I could not keep on this program forever - not to mention, rely on always being gainfully employed. I would always need the convenience of being able to take time off in order to deal with my health, which at the time, wasn't so hot.

Maybe I could have done it with a roommate, but it was overall decided best that I should scrap the idea and stay at home. Within a year I would be unemployed, as my health wasn't bouncing back as quickly as my work would have liked it to and an attitude of impatient, begrudging tolerance was no longer acceptable by me.
While my health has climbed the proverbial ladder since, there is always that chance, that moment when a switch could flip in my system - a system held together with robotic bits, string and a Hello Kitty band-aid - and I could need surgery, or be bedridden for months. It's not pleasant to dwell on these sort of thoughts, but it is a reality in my life. However, there are also other realities I cannot go without mentioning as well...

My finances have taken a dip, but I'm happier to be without that kind of money.

I may not have a high paying part-time job, but I am now getting paid to write (about food no less!)

I may be unable to contribute to the household financially, but I cook & clean, which keeps my mother's 60-hours-a-work-week stress level down.

I may still have to rely on a domineering insurance to pick up the slack, but I love Medicare like no other and want to send them gift baskets every time I am able to go to TEAM RACHAEL! One day, I will earn enough money on my own to make those premiums and be rid of the more controlling insurance company for good.

I may still live at home, but fuck it, so does half of my friends.

I may not drive, but I am able to save my money and see the world instead.

Yes, I become stagnant in a bog of fear and anxiety, fretting that one day I will wake up and realize I have never moved passed this stage in my life. I regret squandering time and energy in my late teens and early 20s, time and energy that could have been used to propel myself further, earlier. But then I look at my boyfriend...and I remember the day I met him.

That morning when I got up extra early to talk to my mom about feelings of guilt, stress and feeling like I am going nowhere in life. It was a Friday and she reassured me, as she always does, that I make a difference in our household and making progress towards a career in writing. Keep doing what you're doing, my mom said. She asked me what plans I had for the day. I told her I was supposed to go out to an event in Hollywood with my friend Loren, but I wasn't sure if I was really in the mood.
"No, you should go," she said. "You need to get out more and have fun with your friends. Go out, have fun."

Twelve hours and some change later, I was walking into the comic book section of the Borders on Sunset Boulevard where a handsome man was sitting, engrossed in a Marvel (X-Men) book. He saw me searching the shelves.
"Marvel or DC?" he asked.
"DC," I said, then noted what he was reading. "You're judging me, aren't you?"
"A little bit."

The love I have for this guy negates all feelings of regret, the would if I had...If only I done...and guilty feelings of decisions that ultimately led me to cross his path.

Had I not "squandered" my late teens and early 20s at anime conventions (don't you judge me) I would not have met my friend Elisa, who would lead me to my wonderful job as a feature writer for The Place magazine.

Had I not left my job, got back into Batman and joined a bit of fandom I wouldn't even be here, discussing this with you.

So what is there left for guilt to do except kiss my ass and hit the curb!

Six Years as the Bionic Woman


via


::Original post: December 17th, 2010::

Six years ago today I was on an operating table having my pacemaker put in. Pacemaker surgeries are fairly straightforward and usually take no more than two hours. However, due to my anatomy (my heart sits in the center of my chest, favoring the right side) and my surgical history (I had a Senning surgery when I was two years old and this blocked the upper left area of my chest where the traditional placement of a pacemaker is) my surgeon was forced to turn a traditionally simple procedure into a serious open heart surgery.

My pacemaker was put in because my heart pauses, usually when I'm asleep. Yes, that means it stops. My heart has stopped more times than I care to know. It is the pausing but that triggers arrhythmia and palpitations, dangerous ones that I have managed to live through, especially as a child. I have been aware that a pacemaker may be in my future since they initially wanted to stick one in me back in 1991.
I fought it until it was unavoidable.
When, in fall of 2004, I was told by the man who not only would become my electro-physiologist but who also operates the non-profit organization I began to volunteer with that same year that it was time, I did not protest.

I'm wary of all surgeons; they're an odd bunch. They make the big bucks and perform medical miracles by defying nature with science and bring life into someone once again. Second chances. That's what surgeons specialize in. I kept my distance from mine; he was friendly enough but I didn't need to tell him I loathed the idea of going under anesthesia and that there might be a chance I would have to have a full open heart procedure. I told him to do his best to avoid that.

I won't lie, I was scared. It had been fifteen years since I had last gone into heart surgery. Medicine and quick fixes had kept me off the operating table until then. I couldn't remember the healing process all that well. I couldn't remember the pain of healing. I only remembered wanting to get up and get the fuck out of bed and into the playroom where there was a free Pac-Man standing arcade game waiting for me.

I went to UCLA medical center so early it was still dark. I think my surgery was schedule for around 9:00am, so I had to be there around 5:00am for paperwork and prep. That was another thing. The paperwork. It was mine to fill out now. Who do they contact in an emergency? Who gives the final call on my life should I be rendered unable to make my own decisions? Who gets my Sailormoon collection?

I was smart and went in my pajamas, fuchsia pink scrubs with Hibiscus flowers on them from a company I briefly worked for earlier that year. I had my rabbit, Boo-Boo, with me. She was tired looking and sagged a bit more than she did fourteen years ago, but she had been my companion then and I'd be damned if I'd go into the OR without her.
Or so I thought.

When it was time to say goodbye to my mom I confessed my nerves to the attending nurses that stuck close to my gurney. In the OR, while waiting for the anesthesia to be prepared, a young nurse looked down on my worried face and gave me a reassuring smile. She looked identical to my friend Jen, who I had been in Sydney, Australia with just a year earlier. I told the nurse this and felt myself relax. Having a friend in the OR, even her doppelganger, put me at ease.

I told them how much I hated anesthesia; it was the necessary evil of surgery. Don't get me wrong, I said to everyone who would listen, I appreciate anesthesia and of course, I want to wake up. But when you do wake up? It's like realizing you'd been hit not by a truck but by a convoy.

Going under is fun, though. I have to admit it. It's a twisted little game to play in the OR, between myself and the anesthesia.
"All right. I want you to count from ten backwards. Ready?"
Aloud, I'd say: "Ten...nine...eight...seven."

I'm out.

We won't get into the recovery from this surgery. Least to say, it was a bitch. I'd never been in so much physical pain, nor cried so much over seemingly nothing in all of my life. I never once before nor after thought OH GOD I AM GOING TO STOP BREATHING AND DIE. I could not laugh and I could not cry. No, really. If I did my chest would constrict and I'd be unable to breathe. Hurt like hell. I did it without drugs, too. They loaded me up with a bottle of Vicodin but I never took a single pill. They make me puke. The point is, I recovered.

The pacemaker has been great, though its presence in my body has had its moments of annoyance. Particularly, metal detectors. I won't go through them if I don't have to, though I hate to inconvenience people for a pat down. I've only ever come across one or two harassed looking security personnel, and one doubtful stink eye (Thanks, Sunset Gower Studios Security Guard. You were a dick.)

I have monthly check-ins with a machine that dials in my pacemaker's monthly recordings via magnet and phone line. It sounds cooler than it is. It's a fussy, fickle bitch of a machine that is more trouble than helpful (on my end.) My pacemaker is in a pretty obvious spot, but the magnet doesn't seem to think so and I have to tinker with unique positions, twisting and turning until all five lights decide to light up. It's a pain in the ass. I much prefer my in-house calls with my doctor who has more high tech machinery. That appointment is in January.

My pacemaker is also on a timer. It paces me heart at a slower rate during "down" hours ie. night time when my heart rate is supposed to be lower for sleep. You can imagine some of the low-energy problems I ran into while being eight hours ahead in Ireland for two weeks. I had forgotten all about the timer portion of my pacemaker, as did TEAM RACHAEL! We had a good laugh about it a couple months later, when I realized.

So, what do I have to say about my pacemaker after six years of sporting a piece of machinery in my left upper abdominal? I'm glad it's there. I don't think ill of it one bit; it's made my life more manageable in the long run. Medical technology does not walk swiftly or even run; it leaps and bounds from milestone to milestone. It rarely bothers me that a hunk of metal is helping me stay alive. I'm just too happy to be here, with all of you.

A Death Among Us

::original post: 11-29-10::

Earlier today I was informed that fellow congenital heart defect pal and blogger Steve of The Adventures of a Funky Heart passed away over the weekend.
Normally I don't talk about losing one of our own, because frankly, I don't get sad, I get smacky.
What I mean by that is sadness quickly gives way to anger and bitterness because death amongst those living with a congenital heart defect makes me want to punch somebody's lights out.

I think of all of the money being thrown at stupid shit like inane television, nonsensical, meaningless movies, bratty celebrities who drink and snort their lives away, and the big billionaires who cheat and lie and profit off of the hard work of others. I think about all of the money put into those wasteful endeavors rather than into medical research that could be used to develop technology and medical breakthroughs that would keep my friends still alive.

Steve was a ball of sunshine in the CHD community - he never involved himself in any of the lame-ass drama that various individuals thrived on; his dedication to the subject, history, progression and personal stories related to congenital heart defect was astounding. I honestly have never met a person who just lived, ate, drank and breathed this life as much as he did. And he loved it! Not being ill, of course, but he loved meeting people, being involved, getting to know everything and anything about congenital heart defects, and making sure prayers and good thoughts were sent to those in need.

He was a true Southern Gentleman as well - and his good-nature humor was always at the surface, with a joke, a silly pun or a positive message readily available. He called us "survivors" and "warriors" While I feel only slightly fit to the latter category, it was his strong, iron-clad-in-a-heart of gold belief that there is a place in heaven for everyone and that there would be a cure for congenital heart defect.

His most profound post, in my opinion, was one of his last:

A Cure for Heart Defects

In this post, he goes on to describe that hope is not enough to cure our congenital heart defects and that action must be taken.

Steve's Outline:

THE PLAN:

POINT ONE: To find new medical and surgical options to increase the survivability of Congenital Heart Disease;
POINT TWO: To research the occurrences, causes, and possible prevention of Congenital Heart Disease;
POINT THREE: The reduction and elimination of mortality and disability associated with Congenital Heart Disease.

THE GOAL:
To eradicate Congenital Heart Disease.

THE DEADLINE: November 29, 2024 – the 80th anniversary of the first Blalock-Taussig shunt.

Sheer brilliance.

I hope to meet many of you living with a CHD out there, reading this, at the Adults with a Congenital Heart Defect Association Conference in Los Angeles next April. I don't have the dedication, patients or guts to be as involved as Steve was - but I'm definitely ready to kick some ass.
I hope you are, too.

Heart to Heart: Casey


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. WANTED: More people to interview! Looking for teens especially, but I ain't picky. Email me if you'd like to be interviewed!

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

Casey Bartle, 23, future mom/teacher or child life specialist. I was born with MASS Phenotype which is a branch of Marfan's syndrome and as a result had a small leak in my mitral valve. When I was 10 a doctor diagnosed me with the flu when I really had pneumococal meningitis, ended up with a 106 degree fever when I was released after a two week stay I was re-admitted to the hospital with congestive heart failure and my heart was as big as a football. As a result the small leak in my valve became a very large leak.

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

Casey: I have had 3 surgeries so far. My first surgery was when I was 15 and a sophomore in high school, the medication used to keep my mitral valve under control stopped working and so they repaired my mitral valve. A year later to the date when I was 16 the repair didn't take and I had to have it replaced with a porcine valve (pig valve). At 22 I had a tubal ligation and ablation.

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?

Casey: My parents are wonderful. Until I was 10 I was treated like a "normal" kid. After I pretty much almost died both my parents became a lot more protective of me. It was really hard on my dad and he worked well overtime to make sure that we were still able to have nice things and be able to do a lot as a family. When I had to go into the hospital the second time when I was in 4th grade I was very bitter, I was going through so many tests and again they thought I was going to die. My dad promised me a kitten as soon as I got out of the hospital and I won't lie it did help my mood. My mom was my best friend, and she really let me do as much as I could, she would really monitor me though, if she felt that I needed to rest, I had to stop what I was doing and rest. I had a lot of tests and was terrified of needles, partly because I have veins that are very very hard to find and stick, and being 10, everything I was going through was terrifying, so I would get a present after everything I went through. You could say I was spoiled and a lot of people think that, but my parents just tried to find ways to keep me happy and have something to focus on while I was going through whatever test it was at the time.

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

Casey: As a kid, I missed the entire second half of 4th grade, I spent 4 weeks total in the hospital and was in no shape to return to school. So I was pretty much home schooled with my teacher. In 4th grade I had a lot of friends who cared for me and accepted me. however when middle school rolled around it was a lot more difficult. I really didn't talk much about what was wrong with me during middle school because no one understood it.
High School was a whole different story, I had my mitral valve repaired at the end of my freshman year, and I ended up missing the last 8 weeks of school. The close friends I had at the time bailed on me because I couldn't go to a party the night before my surgery. Sophomore year I had found 2 or 3 solid friends that helped me through everything, when I ended up having to have my mitral valve replaced a year to the date after the repair, those friends were by my side the whole time. The best memory I have is the second to last day I was in the hospital 2 of my best friends came and sat with me for 3 hours talking about everything and nothing and it's moments like those that mean the most.

Question: How did your heart health affect the relationship with your siblings?

Casey: My sister and I are polar opposites and it had nothing to do with my heart problems, but I love her anyways :)

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

Casey: I am unable to become pregnant. The risk is too high for it to be possible and I have genetic conditions that I don't want passed on. That was extremely devastating to find out. The rest of the stuff like no rock climbing or heavy weight lifting means nothing to me.

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

Casey: That question is almost a catch 22. It's easier because I am able to fully understand what is going on with my body, and I am able to make the decisions as to how I am cared for. On the flip side knowing what is going on and making those decisions can be very stressful. There are times when I just want my mom to make the decisions and go back to being somewhat unaware of how serious all of this is.




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

Casey: I think stressing out is a natural reaction for anyone facing serious health issues. I have a lot of anxiety when it comes to my heart health and all that is involved with it. Mostly because I had a few doctors that didn't do their jobs and my health suffered, so as much as I try to be positive going in to appointments and surgeries and all of that, I still have that hesitation that I wont be getting good news. When I get really stressed out and anxious I exercise, paint, clean (if my house is spotless my mom and fiance know something is up) and write.
I do have a pretty strong support system, I am extremely blessed to be engaged to a man who has been through a lot in his own life so he understands if something comes up and plans need to be canceled or changed, and always puts my health first. He is also the complete opposite of me when it comes to worrying, and while sometimes it can be annoying to hear him say over and over that my worry is not going to change anything and is silly, he knows exactly how to calm me down when I get upset. I also have my mom, and a wonderful woman that I consider to be my second mom. So I consider myself pretty lucky!

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

Casey: Hands down the two most terrifying moments this far have been

A. When I had my routine echo done my sophomore year all the doctors were out of town, so no one was able to read it for 10 days, then one day I come home from school to find my mom and dad sitting in my room waiting to tell me that the doctors thought I had a blood clot in my heart and that I was scheduled for a transesophogeal echo 2 days later. Come to find out that my valve became so big I needed to have it replaced.

B. While waiting in the pre-op area for my second surgery a nurse came in and told me that now it was my time to make peace with God because he was going to decide my fate in the operating room. I lost it, and they were unable to give me any sort of sedative before the surgery, so I remember saying goodbye to my family, being wheeled into the OR, the smell, the cold, and just sobbing and begging the nurses and doctors to make sure I didn't die during the surgery, that I had my whole life ahead of me, and I just kept repeating that I didn't want to die.

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

Casey: I was very fearless as both a kid and a teenager. I live my life fully with a very positive attitude about whats to come.

Question: What are your hobbies and passions? What are your aspirations for your future?

Casey: I am an extremely creative person, I spend a lot of time painting and designing a line of art for nurseries out of scrapbook paper and canvas, I also paint a lot of custom pottery. My favorite thing in the whole world is spending time with kids, I babysit quite a bit and can't wait for a family of my own. I suppose my aspirations for the future are to have a great line of artwork, a house full of kids and toys and laughter, and to just be happy and healthy, and to become either a teacher or a child life specialist

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?

Casey: Oh I love this question! I once had a lady at Walmart tell me to cover up my scar because I was scaring her child. But mostly I get comments because I have a handicap placard for my car. I have had numerous people scream at me in parking lots because of where I park. The best was one day Brian and I went to a pizza place and parked in the handicap spot( because in Arizona when it's 114 out I am really unable to walk long distances.) This older man was with his wife walking into the same place and he started yelling at me in the middle of the parking lot about how I cant steal my grandmas placard and use it and how selfish I was, I politely told him that I had open heart surgery if he missed the giant scar on my chest, he was so mean that I started yelling back at him about how just because I wasn't in a wheelchair didn't mean that I didn't have a disability. It ended up with his wife dragging him into the restaurant, while profusely apologizing to me about how rude her husband was. It was pretty awesome.

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


Casey: I think the toughest part is the uncertainty. I was told I will need another valve replacement in the future and so to have that hanging over my head all the time is very hard to deal with. But honestly as much as really wish my life was different, and that I didn't have all of these problems to deal with, I feel very lucky at the same time. I am stronger for it, and it makes me unique. It also gives me the opportunity to help children and even adults struggling with similar issues. And if I can make a difference in one persons life who is also living with heart disease then I consider this almost a triumph. I have been able to overcome things that I never thought I would make it through, and I am also so much more willing to try everything and anything I can. There is always a silver lining even in the darkest situations, and being able to realize that at such a young age is pretty awesome.

Question: You volunteer for Camp del Corazon. How has being involved in the "heart community" influenced your life?

Casey: It has changed my life forever in an unexplainable way. Lets just say I'm going to be involved for the rest of my life!

Thank you so much, Casey! I hope to see you next year at the Adults with Congenital Heart Defect Association Los Angeles Conference

Heart to Heart: Vanessa

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.

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

My name is Vanessa McClure. I am 26 years old, and I was born with Transposition of the Great Arteries, with a Ventricular Septal Defect and Paten Ductus Arteriosus. I graduated from Claremont McKenna College in 2006, and am a licensed electrician with my own construction business. I also do special effects and stunt work in the film industry.

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

Vanessa: In total, I have had seven surgeries, four of which have been heart-related. The first, the Senning Procedure, was in 1984 (4 months old) where a series of baffles were constructed in my heart to redirect blood-flow. This prevented the surgeons from having to detach and switch the two main arteries in my heart (a high-risk procedure at the time). At 18 months of age, I had a Paten Ductus to close my secondary PDA defect.
My last two surgeries were both in 1997 (age 13), both to band my leaky right pulmonary valve.

Q: What were your 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?

Vanessa: My parents are the most supportive parents anyone could ever ask for. They have been to every procedure, and every surgery. Even if that meant flying down to Los Angeles, or sleeping in the back of our suburban for three months (in San Francisco weather, no less). They are the reason I am the successful, healthy, well-adjusted woman that I am today.
As far as restriction goes (compared to my four siblings), they did not treat me differently. Sleepovers, climbing trees, playing outside, and joining sports teams were highly encouraged with all of the children in our household.
My mother and father taught me to be aware of my body, and to not ignore what it was telling me. In doing that, they trusted me to speak up whenever there was an issue or problem that needed to be addressed.
Other than that, they worry like all parents do, but in treating me the same, I grew up not feeling like I was different.

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

Vanessa: I truly believe that I was forced to mature very early because of my heart. This propelled me to take my schoolwork seriously, and to excel academically. I realized the trivializations of high school culture by the time I was in junior high. However, the flip side of this gift (I do honestly consider my heart a gift), is that this early maturity alienated me from most of my classmates. I didn’t have much in common with kids in my high school, and my teenage years were rather lonely because of it.

Q: How did your heart health affect the relationship with your siblings (if you have any)?

Vanessa: My siblings, like my parents, have never coddled me or treated me differently. They have always been very supportive, even coming to my surgeries when they could. But they were always great at treating me just like their other sisters.

Q: 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.)

Vanessa: I am a very active person, and try to keep up with my friends and co-workers. But I am aware that I do get tired easier on runs and hikes. I have just learned to adapt, and though I will go several miles, it is just an accepted part of my life that I will walk, as well as jog.
I am comfortable with the fact that I won’t be doing much travelling in third-world countries because of their lack of proper health services for someone like me. And yes, I will never climb Mount Everest, or be in any branch of the military.
However, I backpacked over 60 miles last year, I rock climb, surf, and race motorcycles too. I know that being so active and unrestrained, during my childhood especially, is the reason that I am the healthiest post-Senning TGA patient that any of my cardiologists have ever seen.
I concentrate on all the great, exciting, fun things I CAN and will do. Not the ones I can’t. And hey, I still do a heck of a lot more than most people with normal hearts with ever do. In fact, I’m going sky diving for my birthday (author note: she totally did).




Q: What was one of the most obnoxious questions you've been asked or assumptions you've faced in regards to your heart health? (i.e. "Did it hurt?")

Vanessa: I actually haven’t really had to deal with that. Sometimes people will look at my scar and say, “What happened there?...If it’s ok that I ask. I hope that’s not too personal or anything.” Or after I tell them about my heart they’ll go: “Are you ok?” Like I’m about to die as I stand in front of them, or something.
I’ve always been very open about my heart. I’ve never felt like I needed to hide my scars either, and tank tops are one of my favorite things to wear. Ironically, I usually forget that I have a heart problem until someone asks me about it.

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

Vanessa: It is A LOT more difficult as an adult as far as health insurance goes. I currently pay $500 a month for it, and it’s just COBRA from my mom’s insurance that I was under as a minor. It expires next year. It is easier now that I am my own advocate, and don’t need a parent’s signature or authorization to get information or a procedure. However, with that freedom, being responsible for your own health comes with it; which as a heart patient, is something that must be taken very seriously.

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

Vanessa: I have an EXTREMELY strong support system. Something I wish everyone was blessed with. Other than that, when a trying time or challenging incident comes my way, I just tell myself: “This is not the hardest thing I’ve ever done.” But, when I encounter those times when it is in fact going to be the hardest thing I’ve ever done, I get as educated as I can about it. For me, the times I am in the dark about the situation are the times that make me uneasy. It’s the unknown that bothers me. So I just ask a ton of questions, and get as many details as possible.

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

Vanessa: Last summer (2009), I was having irregular heat beats for about 3 months, and then again in December. What was concerning for me, was that at first, my doctors didn’t know what was causing it. And more importantly, how to fix it.
When they did determine what it was (supraventricular tachycardia), the procedure to repair it was not a guaranteed fix. In fact, I was told that they would do as many catherizations/ablations that were needed in order to correct the problem. I ended up needing two of them, and the procedures weren’t a big deal at all. I wasn’t even admitted overnight for them. But it was the unknown that was so trying. How many ablations would it take to fix it? When was I going to be able to be active again, and not feel terrible and tired all day long? What am I going to do about work? Questions like those were the things that kept me up at night.

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

Vanessa: As a kid, I was totally fine with having the heart that I do. When I had my pulmonary valve banding, my exercise tolerance took a pretty significant dive, and I was angry for a little while. I looked for answers as to why I was given my heart. Out of five children in my family, I was the most active, and I was the one with the heart problem. How fair is that?
I researched how common TGA was, and how someone might get it. I learned that sometimes, if a mother is sick while pregnant, a CHD can occur. My mother had flu-like symptoms and a fever when she was pregnant with me, so for a couple of weeks, I decided to blame her.
But, I moved on from my anger. I remembered that my life was headed in a great direction, the kind of person I was developing into, and how absolutely wonderful my family was. Especially compared to a lot of the other teenagers in our community.

Q: What are your hobbies and passions?

Vanessa: I know this sounds corny, but life is my passion. I have a life list of things I will do, and I am regularly checking goals off of that list. I will not be the person that says ‘wouldda, couldda, shouldda’ at the end of my life. I love trying new things, and I’ll try anything. I take risks, do a lot of hobbies that people deem ‘crazy’, and strive to not take anything for granted. Most people say that it’s because of my heart, and being aware of my own mortality from a young age, that I have this zest and drive to experience everything that I possible can.




Q: 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?

Vanessa: I think since I am pretty unrestricted, and the fact that I never cover up my scars, I’ve never had that issue. In fact, when I’m working out, or doing things with my friends, there are times when we’re pushing and motivating each other to do things, and when I say ‘ok, I need a break’, they go ‘why??’ I have to remind them I have a heart problem. It’s pretty funny. But the times I need to slow down or stop, especially on hikes, my friends and family are always really supportive of me stopping for a break, many times even encouraging me to take one before I need one.

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

Vanessa: The fact that I will not be able to have children.

Q: To date, what are some of the most thrilling moments and accomplishments of your life?

Vanessa: My biggest accomplishments to date would be graduating college, getting my contractor's license, backpacking through Europe for a month by myself, and getting my racing license. Something I am very proud of is that I was the first one at an accident a few years ago. A guy had flipped his truck, and was unconscious stuck in it. I flagged someone down, told them to call 911 while I cut the guy out of his truck and dragged him to safety. I stayed with him until the ambulance got there.
The most thrilling moments of my life would be winning a sidecar race, bungee jumping, being on the red carpet of a movie premiere at the Cannes Film Festival, being in the middle of a lightening storm in rural Wyoming, and jumping off a 60-ft bridge into a river below.

Q: What is your personal advice to youngsters living with a congenital heart defect?

Vanessa: Don't feel breakable. Make the most out of the activities you can do, and stay as healthy as possible. Do this by listening to what your body tells you. I eat a very healthy diet too. No fried foods, lots of organic fruits and veggies, and not a lot of fat or salt. No sodas, no alcohol, tobacco, or other drugs. Exercise regularly.
I don't use my heart problem to define me. I'm a daughter and sister first, a friend second, a thrill-seeker third, etc....etc.....heart patient is way down the list. Don't use it as an excuse to let life pass you by.
If all I did was tell myself "Well, I'm a heart patient" I wouldn't be half as outgoing or healthy as I am.
Lastly, be knowledgeable. Learn everything you can about your heart problem. The more you know, the more you can help yourself, your doctors, and the more you will understand your body and what it's doing.


Thank you, Vanessa! Your advice is so valuable. I'm so lucky to know you! - Rachael

Heart to Heart: Kate


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.

Kate: I'm Kate. I'm seventeen and I'm a cashier at a crappy Chinese restaurant. I'm also a senior in high school and I hope that I'll end up being a writer, lawyer, or some other productive member of society. I was born with Aortic Stenosis.

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

Kate: I've had...4 surgeries. I think. I'm pretty sure I've had four. I'm having another next summer. My first surgery was when I was 3 days old, my second was when I was three months old, and then I had another when I was three. I had a minor surgery somewhere in there...I'm not sure how old I was. My first surgery was my valve replacement. My aortic valve was replaced with my pulmonary valve and then I had donor pulmonary valve put in to the original pulmonary position. In doctor terms I had the "Ross Procedure." I've stuck it out and had that same valve since I was three days old. Any surgeries I've had since then have merely been to repair my donor valve because it's stretching pretty thin. My next surgery is when I get my new valve. I'm planning on naming my new valve something witty. I'll get back to you on the name.

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?

Kate: I've always been treated like a normal child. My parents let me run, play, and do sports. I was a bold child so I think that even if my parents had been strict, I wouldn't have listened to them. I probably would've done my own thing. My only restrictions now are that I can't smoke pot or get a tattoo but I'm pretty sure that'd be the same if I didn't have a heart problem.

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

Kate: I always thought my scar was something to brag about. I would make up crazy to stories to tell the other kids on the playground. I'd say things like "I got attacked by a shark," "I got attacked by a pirate," and my personal favorite "That's where my twin was." Like every child I had it implanted in my mind that I was a miracle child. I was God's gift to mankind. As a teenager no one really says anything about my scar. People do the awkward avert their eyes thing when I'm at the beach or they don't notice. When people do stare I like to pretend that they're staring at my super fabulous body. Haha. I'm kidding. Erm. I used my heart problem as an excuse to get out of p.e. and sit down while the other kids were running and being active. I didn't really need to sit out. I'm just lazy.





Question: How did your heart health affect the relationship with your siblings (if you have any)?

Kate: I have two older brothers who grew up with me. My half sister is from my dad's second marriage and she's eight years younger than I am so she hasn't really experienced any of my health problems. My older brother Andrew always saw my heart as a reason to take care of me. Andrew tried to protect me from the world and he was my everything. With joint custody, my one constant was Andrew. He always made sure I was okay and still treats me like an infant to this day. Alex is the middle child of our family. He is protective of me but shows it in a completely different way. He doesn't treat me like a fragile doll like Andrew does. But he's protective enough to never let anyone else treat me like he does. I'm still the baby.

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

Kate: I can do anything, regardless of my heart. I'm pretty physically active and I'm honestly too stubborn to let my heart hinder me in any way. I've climbed mountains, swam long distances, you name it.

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

Kate: There isn't really an annoying part of CHD. I'm okay and I've never been hindered by it.

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

Kate: This camp has taught me to be thankful. I'm not on medications and I don't have health restrictions like many of the kids do. I'm fine and I like that. Camp is so fun. It's given me the chance to have the stereotypical summer camp experience that every kid dreams of.





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

Kate: My family is always there for me when it comes to my health. My dad goes to every check up with me and I can remember my mom camping by my bedside when I was in the hospital. I know that when I have my next heart surgery I'll be perfectly okay because not only do I have an awesome doctor, but I have an incredible family as well.

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

Kate: My scariest health moment wasn't a near-death experience. It was when I was four and I was in the hospital. I woke up for anethesia to find myself alone in the hospital room. The nurse had apparently had a long day because when I asked her where my parents were she said my dad was getting coffee and my mom was at Mcdonald's. As a child of vegetarians who don't drink coffee (in fact they hate it) I knew she was lying and called her on it. She simply adjusted my drugs so I passed back out. Now my mom says that she left my side after having been there for days while I was too doped out to know that she was there. Apparently my dad was on Kate duty and he had run somewhere to get food. Regardless, thinking I was all alone was extremely scary at the time.

Question: What are your hobbies and passions? What kind of future do you want for yourself?

Kate: I love to write. I love it. Writing makes me feel like I'm centered. I have a blog that I basically obsess over and cram all my thoughts into it. I love feelings young and going on adventures. I love seeing new things. I guess I'm passionate about living. How cliche. The kind of future I want for myself isn't some cookie-cutter life. I want to be happy but I don't need to be married, wealthy, or regularly employed to feel this way. I want to lead a fluid life where I can do things that make me happy and move on when they don't anymore. I want to see the world when I'm older and I hope I find a career that allows me to do that. I want kids but...I don't need to be married to have them. Everything will work itself out. My future looks pretty bright.

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

Kate: CHD has made me feel like I can handle anything. I know I can battle through whatever challenges face me. I get that life is short and you need to focus on what makes you happy. I guess CHD has taught me that all the stupid cliches on bumper stickers and dentist's office posters are true. Or most of them at least.

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

Kate: I feel more enlightened than my peers. I'm over the trivial high school experiences and I get the bigger picture. Having been close to death allows me to look to the future and see just how much I have to live for. I know that I'm going to be okay because after having CHD, I know I can handle the harsher side of life.

Kate and I have been acquainted since she was all but thirteen years old and I was her camp counselor. She recently graduated camp and I am looking forward to her progression into the role of counselor so that we can then volunteer side by side! xoxo, Kate! Thanks for sharing your story.

Conversations with TEAM RACHAEL!

the follow is a dramatizing of a real conversation between myself and TEAM RACHAEL!

10:19pm Me: You fix that shit with the insurance?

06:36am TR!: WTF, mate?

08:57am Me: Y'know, something nonsense about the insurance going apeshit about my medicine? The pharmacists lost their damn minds on me about it.

TR!: ¿QuĂ©?

Me: Check your fax tray, yo.

TR!: *checks*

TR! *sometime between 08:57am and 09:18am*

TR!: *waves hand passed insurance company's face* You will cover this medication for my patient.

Insurance: We will cover this medication for you.

09:18am TR!: Your medication will be ready to pick up tonight.

Me: OMG, how did you do that?

TR!: Girl, please. Ain't no one gonna mess with TEAM RACHAEL!

Me: TY, I luv u!

TR!: May the force be with you.

Heart to Heart: Alex




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 (if you're unemployed just say the occupation you're seeking and if you're a student, say student) and the type of congenital heart defect you were born with.

My name is Alexandra Marie Miller but I go by Alex. I’m 19 years old and I’m a sophomore in college. I was born with a single ventricle, pulmonary stenosis, and transposition of the great vessels.

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

Alex: I’ve had ten heart surgeries.
1) Blalock-Taussig Shunt, 3 months old. Shunted my blood so it was more oxygenated to tide me over until I was big enough for open heart surgery.
2) Modified Fontan Procedure, 3 years old. Open heart surgery to reroute my circulation so that the blood coming into my veins went straight to my lungs, via a negative pressure system. The blood coming into my left atrium and ventricle was fully oxygenated and could be pumped to my body.
3) Ablation, 13 years old. Tried to correct arrhythmias by burning faulty electrical passages in the heart.
4) Ablation, 13 years old. Attempt #2.
5) Ablation, 14 years old. During this ablation I went in to 3rd degree heart block, causing the need for surgery number:
6) Pacemaker Implantation, 14 years old. Pacemaker was implanted to save my life, less than 24 hours after I went into heart block.
7) Pacemaker Lead Placement, 14 years old. They couldn’t finish everything the first time they were in there, and had the pacemaker attached to my atria but not to my ventricle. Several days later they tried again and still did not attach it.
8 ) Pacemaker Lead Placement, 15 years old. They tried again the next summer for the ventricular lead and succeeded.
9) Pacemaker Lead Placement, 17 years old. I started getting electrical shocks through the left side of my torso during fall of my senior year, and we discovered that this was because one of the pacemaker leads had come undone and was leaking electricity into my body. In October of senior year I had a lead replacement.
10) Pacemaker Lead Placement, 17 years old. Somehow I managed to wiggle that lead loose in less than 2 months, so I had another lead replacement in December of senior year.

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?

Alex: My parents, in general, treated me as they would have any child. We didn’t avoid talking about my heart; it just wasn’t always the focus. I did things- I played soccer, did ballet, rode my bike, made friends, went to school-just like everyone else. I know and always have known my limits as far as physical activity and endurance go, and my parents have trusted me to make those decisions since I was little. They’ve always let me be a part of decisions about my body, and have given me more and more responsibility over that area as I’ve gotten older.


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

Alex: Like I said, I have limited endurance. I couldn’t always do everything the neighborhood kids could, and I couldn’t always participate in gym class. I was teased a lot about walking in gym class in high school when everyone else had to run laps-by that point in my life though, I was mature enough not to let it bother me. The only time I ever really had troubles with being made fun of for scars or for my heart defect was in middle school. Middle school boys are brutal—one kid told me I was mean because I only have half of a heart. A lot of people ask me about my scars, but I don’t mind that. I just tell them. My close friends know all about my heart and my meds, and to them all of that is just part of me. They love me as I am, and accept my heart as part of what makes me me.

Question: How did your heart health affect the relationship with your siblings (if you have any)?

Alex: It didn’t really and still doesn’t affect my relationship with my two younger brothers. They like visiting me in the hospital (free food and fun beds to move up and down). We roughhoused and played like any normal siblings.

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.)

Alex: I can’t be a welder, or an MRI technician. Or anything else having to do directly with magnets, because of my pacemaker (but that’s quite alright with me). I can’t scuba dive, go in hot tubs, or spend a lot of time in high altitude. My endurance is quite limited, but I played soccer until I was 12 and played in the marching band in high school.
I’ve traveled a lot in the United States, and to Mexico and Honduras several times, and spent 2 months in Honduras my junior year in high school. We have to prepare- find a cardiologist in the area, make sure there’s a place to go if something happens, but I can really do anything I put my mind to. I plan to study abroad next year.





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

Alex: Sounds cliché, but faith, family and friends get me through.
My family is awesome. We’re very silly, but they are the only people in the world who really understand how to act when I’m in the hospital. My mom and I make hospital visits into chick flick marathons, and a good reason to have dad and the boys bring us food from our favorite places. Sure, spending time in the hospital is yucky, but we’re so used to it that it’s really not a big deal – just Alex spending a couple nights in the hospital. My family deals with me well- when I’m sad they let me cry, but they know when to make me laugh too. I couldn’t ask for a closer, more supportive family.

When I’m stuck in the hospital, it always amazes me how much people care. Family friends, friends from school, people I hardly even know—I get phone calls, emails, and visits from people. My close friends visit me in the hospital and bring me treats, and even just their company is welcomed. My heart isn’t just a big deal when I’m in the hospital, and the people who care about me most understand how to help me in everyday situations when I’m having trouble.

I grew up in church, but my faith really blossomed in 8th grade when I started having more heart problems. No matter how much I love my friends and family, and no matter how much they support me and I depend on them; there’s no way I would have made it to today without God. Having a CHD has truly made me believe in the power of prayer. My church family prays for me regularly, especially when something is going on. They are always the first people to ask how I’m doing and if there’s any progress, and keep me on their prayer lists. Even on my bad days, when I’m discouraged and feeling like the future looks pretty dim, I quickly remember how blessed I am to live where and when I do, with the medical technology of the 21st century and a wonderful group of people surrounding me and loving me. My God and the people who have prayed for me for 19 years are the ones who have gotten me through.

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

Alex: The first time I had a bad arrhythmia was the first time I was ever really terrified about my health, and I’ll choose it as the worst because it’s certainly the most memorable. I was thirteen, and was rushed to the ER and put into the crash room; which was the room that has everything you would ever need for any emergency, and that was really scary. Just being that young and being in the hospital is scary, let alone with my heart going crazy and me having no idea what was going to happen. There have been plenty of scary heart moments in my life, but a lot of them have been scarier for my parents because they’ve been during surgery (I’ve come out alive every time so far though!).

Question: What are your hobbies and passions? What are your aspirations for your future?

Alex: I love the Spanish language. Spanish is my major- I don’t know what I want to do yet, though. I’m really interested in non-profit organizations and helping people. Also, I have a passion for telling people about congenital heart disease and fundraising to fight it. My dad works for a non-profit that provides free heart surgeries to kids in third world countries, and I can’t wait to go on a trip with him to a Spanish speaking country so I can talk to the kids about their hearts! Besides that, I’m an avid reader, I’m pretty creative and I like to do crafty things, I love being outside and taking walks, and spending time with my friends and family. I recently joined a sorority on my campus, too, so that should be exciting!
As far as my future with my heart health- we have no idea what will happen. As of now we don’t know how many more or what kinds of surgeries I’ll need, or how long I’ll live. At this point, people with hearts like mine are strongly discouraged against becoming pregnant, for my own health and for the babies. But I believe that technology could change in the next ten years, and maybe, one day, I’ll be able to have a baby of my own. If not, I think adoption is one of the most admirable things a person can do, so I’d be okay with that option too.

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?

Alex: Absolutely: teachers, friends, complete strangers—I’ve gotten skeptical looks and comments from many people. I’ve always missed a lot of school with being in the hospital so much, and some teachers are really understanding about it, and others cut me zero slack. Luckily, my mom and I are both strong when it comes to standing up for me, so I usually get those teachers to comply and let me make things up at a reasonable pace. Gym teachers always had to have doctors proof for me not to have to run. I wore a monitor for a few months in middle school, and I had to wear it on my gym uniform, and almost got in trouble for having an iPod until I explained what it was. Sometimes when I have complications or an especially ridiculous amount of maladies at once, people think I’m faking, because what human could possibly have that many things wrong with them? Well, I could. That’s the most frustrating, because on top of dealing with being sick, I have to defend myself because people think I’m faking.

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

Alex: Constant, constant, problems, for the last six years. It started in 7th grade, and now I’m a sophomore in college- it hasn’t stopped. One problem gets solved, another appears. I make a record – a whole year without spending a night in the hospital- and then I have a mini stroke. It’s just always something, and sometimes a break would be nice. Don’t get me wrong, I love my life, I have a blast, and my health could be so much worse. I’m very blessed.

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

Alex: Absolutely. Having a CHD made me mature in many ways, at a much younger age than many kids. Social and physical maturity came with time, just as my peers, but I have always been very strong emotionally. My faith has always been solid, because that’s what I’ve always clung to when there’s nothing else to comfort me; because when it really comes down to it, God is the difference between healthy and unhealthy, not doctors. I’ve always had to worry about more/different things than my peers, which made me mature and more adult-like. There isn’t much that scares me in a hospital, and I’m on more medications than my grandparents. In some ways, I’m mature beyond my years. In others, I’m still growing up alongside my friends. Overall, having a CHD has made a very strong person who knows how to stand up for herself. That’s what I think I’ve benefited from most.

Thank you so much for participating in my series of interviews, Alex!

Bart No Like. Bad Medicine.

The latest Chronic Babe Blog Carnival Asks: Trick or Treat! Halloween is coming soon and we started thinking, wow, medicine is like Editrix Jenni's favorite holiday. Sometimes you get treats, and sometimes you get tricks. We'd love to hear about the ups and downs of your experience. Show us the highs and lows, and the surprises!





Currently I take 4 pills upon waking, 2 vitamins after I eat breakfast, iron at midday/afternoon, 5.5 pills at night followed by another iron pill. It may seem like a lot to swallow (ha ha - that's what she said) but some of those are doubles or a different dose of the same medication. In actuality, I only take 7 different kinds of medication. Five are related to my heart, one to my thyroid and the other none of your damn business. ;)

The only type of medication that has ever proven to be difficult are the medications I take to control my arrhythmia. I won't state which medications that I was taking because everyone's reaction to them is going to be unique and I do not want to scare anyone who may be taking either of these meds or know someone who is. It all has to do with my unique chemistry, not the pills alone. It's like being allergic to peanuts. Peanuts might be DEATH to one person but delicious toppings to an ice cream sundae for someone else.


Pill Face
Most of the pills I take (minus 4)




Bad Medicine: The First Encounter
When I was nine years old, I was put on a particular medication for my recently developed arrhythmia. Gradually, I developed myalgia, confusion, drug-induced lupus and nightmares. Oh, my ticker was doing the best it had ever done up to that point in my life - healthy, strong, responsive! - but I was in constant physical pain and having my first experience with extreme brain fog. The climax came when my mother found me going off to school well before it was time. I stepped outside, backpack on...walked down the path to the sidewalk. Turned towards the end of the street. Walked about two houses down. GOT LOST AND CONFUSED. Like a child walking through the woods. God, THE PANIC!
I forgot where I was going, why I was going there, what I was doing, how did I get there? It was just a jumble of foggy anxiety. Really, the fog in my brain was just so dense it was any wonder I was able to make it back to my house, knock on the door and tell my mom I didn't feel good. It took a little over a week in the hospital to ween me off and get everything under control.

Bad Medicine: Even Badder
Doctors went for another medication when I was in junior high. This time, everyone got a little smarter and removed me from school (removed/kicked out, it's all relative). Man, oh man...what a roller coaster of batshit crazy that was. I developed psychosis immediately. Paranoia, hallucinations, violent mood swings, seething anger, intense mania...oh, the mania! As ridiculous as it sounds, I almost miss the mania. Almost. I was extraordinarily productive during this time, creatively wise. I ate/slept/drank my writing, stayed up to all hours of the night just writing and writing and writing - all by hand. I had containers filled with complete novels (mostly dribble, but the rough drafts of future projects as well). I painted, sculpted, and drew. Despite this, there is no question now in my mind that I was insane.
Unfortunately, my mom couldn't figure out if my extreme behavior was due to me just being an angst-ridden teenager or if it was the meds. So I was like this for a number of months, constantly flying off the handle, smashing anything I could get my hands on in a temper tantrum that could rival any toddler. No fun.
Mom finally came to the conclusion that I wasn't right in the head and by the second half of my 8th grade year I was off the medication. The side-effects gradually tapered off, but as I was never given assistance for the repercussions of going through such an experience, it would not be until I reached adulthood that I realized half of what I experienced during my junior high years was more than likely the result of my medication.

I've never publicly written about this, though I did tell a select few about it a couple of years ago, when I was reflecting on it for the first time since reaching adulthood. It's been a little nerve-wrecking allowing everyone to know this information and get a glimpse of what once went through my brain. I feel that this blog carnival is the perfect opportunity to go public about my experience, even if people will take a step back from me. I have yet to bring myself to read the journals I kept during that time. I know they're filled with ramblings about people that never existed.







Luckily, this story has a hopeful ending. When I was sixteen years old it was decided I need to give another medication another go. I was understandably scared, but I also appreciated the fact that my new doctors were taking this seriously enough to quarantine me at the hospital and observe me for heinous side-effects. At the end of my sophomore year I went in the hospital for a week, armed with a care package from friends I'd met on the internet, filled with a wondrous new music that would stay with me forever. My body - and my brain - took to this medication beautifully and I have been on it ever since.

A treat indeed, given all of the tricks I had to go through to finally get to it!

NOTE: High five for everyone that recognized the Bart Simpson quote.

images one and three from We Heart It

The Fears of the Chronically Ill

This is my contribution for the Patients for a Moment blog carnival, hosted by Selena of Oh my Aches and Pains! who asks: I want to hear about your fears: what they are, how you face them and what you do to overcome them.



via threadless



Well, I'm scared of driving, statues of animals, bugs that jump, oh, wait. Selena isn't asking about those fears, is she? No, she's asking about the fears that I really fear, the kind of fears that revolve around my health.

Death - The big one. It's not an uncommon fear as a whole, but the looming shadow of a scythe and a hooded figure has been a concern of mine for a number of years. It's more of a fear of premature death than anything else, but like I said, not wholly uncommon amongst even the healthiest of people.

Medical Upkeep - This is actually the fear that causes the most anxiety in my life. I can never, even for a split second, be without medical insurance in my life. Obtaining and maintaining insurance in not easy, in fact, it can be downright demeaning and stroke inducing with all of the questions, the restrictions each program puts on my life, the limitations, the rules, the paperwork, the soulless shuffling and judgment. It's pure, unadulterated hell for me. Nothing spins me into a full-blown anxiety attack like talking about how much I hate the bureaucracy part of health insurance.
What does it in for me is that I am not a temporarily ill person; I will always be "sick" on some level and I will always require insurance. Explaining this, explaining my health, my heart condition and what it "feels" like (most annoying question EVER) is like being asked to justify my existence to a firing squad. I am hopeful that many of you will never, ever have to go through this hell but for those of you who have - my deepest empathy.

Dependency - I don't know if I am a dependent person by nature, or situation. What I do know is that I have a desire to free myself from being dependent. I'm unhappy having to rely on my family for shelter and food, but this is necessary as I cannot make enough money at this point in time to support myself with rent, food, etc. My big fear with dependency is being dependent for the rest of my life. I do not want this; I do not want to live with my family forever. I want to spread my figurative wings and have my own home, my own family. I want to pay my own bills, decorate every room in my own house and be able to say I am the head of the household.

Unrealized Goals - I've always wanted a family of my own. A spouse and a gaggle of adopted kids. Living with my health, the dependency issues, the unable to make more than the bare minimum, it wells a fear so great in me I can easily cry thinking about it too much. To not achieve a family of my own, however small it may be, is something I cannot bear. Something that millions of people take for granted, and many often neglect or abuse, and I have to struggle for seems like the greater injustice than any other aspect of my life.

So, these are my fears that all relate to my health in some way or another. How do I overcome them? Well, I haven't. I just try to avoid the outcome I don't want or to figure out ways to keep living my life the way I want to and achieve as much happiness and personal success as I can.