Friday, December 30, 2011
I got the call this morning that I've been harboring C Diff, an infection of the colon, all of this time.
EXACTLY WHAT EVERYONE SUSPECTED IN THE FIRST PLACE BUT CAME UP NEGATIVE.
Are you fucking kidding me? I could have died from this shit. Like, if we had just gone on all merrily tra la la OH IT'LL PASS RIGHT THROUGH YOU like we've been for the last you know FIVE WEEKS my kidneys probably would have eventually failed and I would've died. Or something. Maybe. They gave me antibiotics in the hospital and I was no longer dehydrated - BUT I WAS AT ONE POINT.
So this is how part of my conversation went with the doctor:
Doctor: "Soooo....about the flagyl I'm perscribing. Uhm. I don't know what your plans are for tomorrow, but this antibiotic doesn't mix well with alcohol. If you consume a lot of alcohol tomorrow there is a good chance your face will turn red, you will break out into a heavy sweat and become nauseous."
Me: "Uhhh...wow. I don't...okay."
Doctor: "Yeah, I don't know what your plans were..."
Me: "Well, it definitely involved drinking but..."
Doctor: "If you have, say, a mixed drink it shouldn't be too bad because it's diluted but if you suddenly go red in the face, you know why."
Me: "Good to know so I won't run to urgent care."
Me: "Well, I wasn't planning on drinking a lot anyway, just one or two drinks..."
Doctor: "That...should be...okay."
As soon as we hung up I informed everyone that I would be starting the antibiotic on Sunday.
Sunday, December 18, 2011
The level of discomfort is astounding. Imagine your belly swells twice (or more) the size it is now, stretching your skin as far as it can humanly go, your veins bulging, your organs pushed against the walls inside and all the while it feels like you ate your way through a Las Vegas buffet. Oh, and speaking of eating and drinking, no matter how hungry you are, you won't be able to eat much because of the fullness.
That's what my life is right now.
It's not pretty and it's certainly not at all comfortable.
So if I'm not up on my usual funny and witty banter you know why.
Monday, November 28, 2011
My mom went back to work Monday and my sister and niece came over to work on my matted hair and keep me company. Tuesday my friend Steffie planned to come over. I was finally getting my appetite back and I asked her if she wanted to combine our efforts to make sandwiches. I had bacon and tomato, could she bring bread and lettuce? Sure. So she does, and she makes us some BLTs.
A few hours later, after Steffie had gone home, I am in chills but hot with fever. I am scolded by my family for overreacting and being dramatic and they use an old busted thermometer that doesn't read properly just to throw it in my face that I don't have a fever.
That night was horrible. I couldn't sleep. I was in and out of the washroom every hour. In the morning I was feeling awful, like I had the flu. All I wanted was ginger ale and crackers (which was brought to me by a loving family friend). I had been emailing my cardiac team about various ailments and once I spoke of my washroom issues they demanded I get to urgent care immediately.
I went that late afternoon to find out I had a temperature of 102.4
They gave me fluids and antibiotics via IV. I felt better but as soon as they were done I felt instantly shitty again and the fever returned. They wanted to send me to UCLA in an ambulance but because I don't own one of them money trees I declined and my mom drove me. I went to the ER and waited for an hour to be taken back.
The initial thought/fear was that something went wrong with the surgery OR I contracted a bacteria from merely being in the hospital. I was in the ER all Wednesday night, unable to find any comfort. This is also due to the loud, crass and obnoxious son of the man in the bed next to me who visited with his giggly trophy girlfriend until 3:00am, never once lowering their voices in respect for the person four feet away from them.
I was given a physical examine, a CT scan, blood tests, other fluid tests, etc. and finally admitted and taken up to a room by...oh, I think early afternoon Thursday.
I was given an ultrasound, x-rayed and had blood taken from me every morning at least.
They never found anything.
I was seen by OB/GYN staff, cardiac team, a gastrointestinal team, and an infectious diseases team. None of these people found anything, even when I realized that Steffie mentioned being sick too and we put 2 and 2 together with the lettuce and the timing of our mutual illness. She had similar symptoms (I don't know if she ever got a fever)
They broadened their search to include e.coli and listeria - maybe even hepatitis - but still nothing. They had me on antibiotics just as a precautionary but they really didn't know what they were fighting. They kept insisting it must be a virus that just needed to "run its course"
This never sat well with me.
I think they missed something or a test came up incorrectly negative.
Once I was able to break my nightly fevers I was able to go home - Tuesday the 22nd, five and a half days later.
Those were five miserable fucking days, my friends, let me tell you.
They sent me home simply because they had to admit they found nothing and could not treat me. So in their expensive degree wisdom they simply advised me to let this virus "run its course"
Yeah. It's still running its course, nearly one week later. No fevers but I've had some backlash from my heart in the form of sudden palpitations (my coumadin spiked very high at the beginning of this mystery illness and they released me with instructions not to take my coumadin. Bad move)
Truly, I do not feel out of the woods with this illness. I feel like I'm going to either be living with it for a very long time or until they wise up and look again. Which they may very well have to because if this illness doesn't "run its course" by the end of this week I will be going back (as an out patient most likely).
Surgery-wise, I feel stronger and less sore each day. I am sleeping a lot better and feel that I am healing very well.
I just wish this stupid virus/bacteria would go the fuck away.
I am typing this from my bed at home, so cut me slack on errors that normally wouldn't occur. I have been home for about 36 hours and am already being asked by well-meaning friends when they can come and burden their presence on me, er, I mean graciously visit. I realize now there needs to be a list of things people need to be made aware of when visiting a friend (in this case, me) after surgery.
1) just because I am home does not mean I am well. I am well enough to be home, but not well enough to hang out like normal. I am still in pain.
2) don't ask me how I am feeling every 5 seconds. You know how I feel? Like I just had surgery! Save this question for a week or so out.
3) never just swing by unannounced. It's not fun for me.
4) please do not expect me to be a hostess during your visit. Plan to come by on the way to or from food unless we made plans to eat at my place together. Expect to serve yourself.
5) I tire easily. Keep your visit short or I may doze off on you!
6) I just went through a traumatic experience. If you don't want the gory details, be mindful not to ask.
7) at least in my case, anesthesia sticks around longer than I'd like it to. Crying over stupid shit isn't unheard of. Keep the conversation light and don't expect me to watch anything more dark than Care Bears or Pee-Wee.
8) I look as crappy as I feel. Be prepared and don't make comments.
9) don't take it personally if I am not ready to see you. Once I am comfortable receiving guests I will let you know (or make a general announcement)
10) although I'd never make you my nurse, you may have to help me out. Just be understanding and know I appreciate it.
Tuesday, November 8, 2011
Thursday, November 3, 2011
Anyway. Less than a week left before my surgery and I bet you've been asking yourselves, "Wow, certainly Rachael has had so many missteps along the way, surely she would want to bitch about them on Offbeat Follies?"
Believe it or not, I've heard hide nor hair from anyone until yesterday. The ball has officially begun to roll and it's a pretty smooth, well communicated course. I have some labs to take care of either today or tomorrow (the only drama there being whether or not I have to hike it all of the way to UCLA to get it done) and I just got off the phone with a pleasant woman talking to me about anesthesia (probably the 2nd most source of anxiety when it comes to surgery as Me + Anesthesia = Hot Mess)
As we're coming down to the wire though I'm not afraid to share that I've been feeling a little...hesitant, shall we say? Not for any logical reason, oh, no, because these attacks of doubts are usually preceded by a visual assault of cute in the form of baby pictures from not one, not two but FIVE friends who have given birth in the last eight months. It takes all of my self-control to not post on their Wall and ask, "Tell me about how much labor hurt, how fat your ass grew, how much your infant looked like a squalling pile of alien goo and that you were swallowing the urge to scream KILL IT WITH FIRE!"
I need to hear these things sometimes.
It's very difficult to fight human nature and ones own biological urges to procreate. I think, once I'm through the other end of this situation and all is right with my world, I need to give a lecture "Telling your Biological Clock to STFU: Alternatives to having kids the biblical way."
Has a nice ring to it, don't you think?
Keeping my head on straight is going to be key this week, surrounding myself with people who will remind me that this is the best, most logical decision I've ever made and not letting my uterus dictate my actions. That selfish bitch.
Saturday, September 10, 2011
Bitch, where haven't I been?
Paris. That's where I haven't been.
In my room, sitting on my ass watching cat videos? Maybe. You'll just never know, will you?
Today's post is part of the September Chronic Babe Blog Carnival and it asks:
Let's hear how your faith—or lack of, or explorations—have affected your life with chronic illness. Have you found support in a spiritual community? Found a like-minded support group? Received criticism from people of faith? Converted from one belief system to another? Let's hear about it! And let's get that conversation rolling.
This is a touchy subject for many people, and while I have no issues giving my opinion, I want people to remain calm and realize it is just that: my opinion through my experiences.
I'm going to back-pedal now.
When I was young, my parents were pretty regular about raising my brother and I in the Episcopalian Church. Our church in Pennsylvania was especially easy going and friendly, which made Sundays less of an ordeal as it was for some kids.
However, I never felt a connection to Jesus and all of his homeboys. The stories Sunday school teachers told were merely that - stories. And not very entertaining ones, either, because they all featured men and had not a single kick-ass woman like She-ra. I only dug Noah's story because of the animals and the bitchin rainbow at the end.
It was the people - more specifically the priest - at my church in Gulph Mills that I liked and respected because anytime I was in the hospital he would visit me and call me "tiger" whenever he saw me. This guy was awesome-sauce. However, my interest in religion was just never there and I was determined to be indifferent.
Remaining indifferent to religion became more difficult as the more I learned about them, the more disenchanted I became. The hypocrisy, the crimes against humanity and the Earth itself - all of it left a sour taste in my mouth. Feelings of exclusivity, superiority, encouraging war with and shunning people whose ideas/beliefs do not match your own - no, thanks. I'll have none of that.
There is no way I can take any comfort from any of this, especially when I am ill.
Yet, despite my wholly disapproval of organized religion and mankind's idiotic marketing campaigns against one another, I am not an atheist. Atheism depresses the ever-living crap out of me and I'd never be able to not believe in something.
Believe it or not, I am a spiritual person. I do believe there is something bigger than me out there and I have accepted my own ignorance on the details as par for the course. It's OK to not know everything, to not have all of the answers the universe possesses.
I'm not sure if my congenital heart defect is part of A Big Plan for me - I am definitely open to the idea, but I am not going to place any money on it. Maybe it was designed thus, maybe it was just a shitty draw of cards. I don't dwell on it, though, because I have better things to do with my life - like watching Doctor Who and collecting Monster High dolls.
As for like-minded people to receive support from, well, I'm not posting any online advertisements anytime soon. I enjoy deep conversation on the metaphysical with people I know and respect, but when it comes time for the next surgery, the only support I want is from my loved ones.
I accept that people take great comfort in leaving it up to God when it comes to their health, or relying on a God Knows Best philosophy to see them through tough times. If that's what gets someone through their day, so be it. I just don't subscribe to it nor appreciate the sentiment aimed in my direction.
I have yet to receive criticism from people of faith (but I look forward to your letters after this post /sarcasm) but I also don't go asking for trouble. I am a firm believer in Agree to Disagree/to each their own and not go get up in somebody's personal space to force my views on them - be it on their doorstep, in public, or a comment on their blog.
Wednesday, August 31, 2011
I tried calling the main office for the GYN since they appeared to have their shit together and asked if they had the Doctor's October schedule.
I try to explain the situation - that I see the Doc at the Poor People Medical Building but nobody over there knows any scheduling and I need to get my calendar in order.
So she interrupts, "What insurance do you have?"
ISN'T IT SAD AND DEPRESSING WHEN THIS IS ALWAYS THE FIRST THING THEY ASK YOU HERE IN THE USA? NO MATTER WHAT THE CONTEXT - I COULD BE BLEEDING FROM MY NIPPLES AND THEY'D ASK ME, "WHAT INSURANCE DO YOU HAVE?"
With a frustrated sigh, "Medi-Medi."
It was like I hit the fire alarm button.
"UH UH YOU NEED TO CALL THE POOR PEOPLE BUILDING TO GET HIS SCHEDULE! I CAN'T TALK TO YOU, THE POOR MIGHT RUB OFF ON ME!"
I tried to explain again but she kept interrupting me so I hung up on her before I wound up calling her cunt.
So I am back to square one, at the mercy of the mystical schedule that apparently NOBODY CREATES. Except that somebody knew - somebody called me well over a month ago and told me the doctor would be there October 10, 11th and 13th (dates I am actually trying to avoid scheduling, which is why I want the rest of the month)
Where is this woman, this magical, scheduling fairy-godmother? I do believe in fairies, I do, I do! Now, if I close my eyes, click my heels three times, will I be able to make appointments and schedule the rest of my freaking life?
Tuesday, August 2, 2011
Here is a tentative list of what I would like to obtain and bring along with me to insure my comfort as well as my morale.
- Deodorant (sugary marshmallow or baby powder scented preferred)
- Lip balm
- Coloring books + colored pencils
- Word Search books (for when I want to exercise my brain)
- Book to read, or have read to me (preferably something I have already read so I don't have to think too hard as my brain will be foggy. I don't mind sharing that I regress a little when I'm recovering from surgery so I usually go for middle grade fiction)
- Trashy magazines for idle entertainment (my brain is already mush, why not go with it?)
- Toothbrush & toothpaste FROM HOME (I hate not being able to brush my teeth at night)
- Hairbands to put hair in braids so it won't tangle like a bitch
- Cute hospital gown*
- Cute scrubs**
- Cute pajamas
- Plenty of comfortable underwear
- Earplugs (to block out noisy neighbors and machinery)
* = Why are there only cute MATERNITY gowns on Etsy? I need the ANTI-MATERNITY hospital gown. Preferably in an adorable print, like one of these darling Doctor Who motifs
** = I used to own cute scrubs. They were hot pink with white hibiscus flowers. Not precisely my thing (flowers that is, but hot pink yes) but I lived in them for years. I was sad when they ate it. Anyone want to make me cute scrubs to go with my ANTI-MATERNITY hospital gown?
What's your list of essential Surgery/Hospital trip accessories?
Tuesday, July 26, 2011
The Responsible GYN called me today to tell me that he had The Discussion with TEAM RACHAEL! and TR! gave the green light on a partial hysterectomy.
They feel I am in good enough health to go through this surgery and its recovery time. I would be under for 2 hours (a mere trifle) in the hospital for about 3 days (to observe) and recovery would be about 3 weeks (let's just say a month).
A partial hysterectomy would remove my uterus and cervix, though the latter is optional but the GYN recommends it. Ovaries will still be intact, and no hormonal imbalance will be had. Still won't stop me from being a weepy bitch due to my typical bad reaction to anesthetic.
Now that it is within reaching distance I am pausing to have a full-on freak out because it's like HERE. This is HAPPENING. I asked for shit to be taken care of and I found the right people to take care of it. The partial will obliterate all chances of me ever getting knocked up as well as take care of the heavy bleeding as there will never, ever be another period again.
HOLY SPACEBALLS WHAT DID I DO TO DESERVE SUCH A GIFT?! <--- that's ok. I'll be in a world of pain before I get to the good life.
It's that world of pain that leaves me a bit hesitant but I know the pain will eventually subside and I will never, ever have to worry about accidentally getting pregnant. I will never have to worry about weighing the decision of a termination and all of the psychological/emotional stress that it brings.
It's still a tough decision to make, as a woman and a young woman at that. I'm confident about never having kids. That's not a question. It's just having to remove parts of my body that act a little wonky every month but are otherwise tiptop that make me kind of mehhhh.
No one ever said being responsible was easy, though.
Wednesday, July 20, 2011
SHIT. GETS. DONE!
Yesterday I woke up with a killer headache and my boy wanted me to cancel my appointment and stay home (I was dealing with palpitations Monday night as well) but I was like, NOOOOOOOOOOOOOOOO! THIS SHIT NEEDS TO BE OVER!
So I go back to UCLA (poor people back alley entrance building) and I'm all prepared to have to talk to a Baby Doctor and wait a bajillion and one years before I see the Attending but - gasp gasp - miracle of miracles, friends!
Not only did I wait 12 minutes before someone came it, it was THE ATTENDING HIMSELF!
He was all SRS BSNS and I was all, "OMG, I was not prepared for this! For intelligent questions to be asked! For decisions to be made! For shit getting done!"
So I have some choices to make and of course TEAM RACHAEL! is being consulted at the moment, too. Once everything is finalized I'll let you know what step I'll be taking next.
Sunday, July 17, 2011
Ever since I was a teenager and I started to hear young, lively people reduce to two year old tantrums every time their birthday rolled around I decided to never get bitchy and whiny about my birthday. Growing Old means I'M STILL HERE TO GROW OLD. That outweighs any gray hair I find, any aches I feel, any "ma'am's" I hear. Bitches, I am still alive and that is fucking beautiful thing.
HOWEVER, for whatever stupid ass reason, I felt a weird, melancholy feeling as 29 slowly crept closer. I tried to shrug it off and then, as it persisted, I tried to beat it down with a stick. Short of killing it with fire, I'm just going to have to accept a slight melancholy feeling of just "This is not where I wanted to be in life at this age" BUT THIS DOES NOT TRANSLATE TO "Oh shit, I am so fucking old, I'm going to fill out my AARP membership card and go treat myself the Senior Grand Slam at Denny's before I snuggle down at 7:00pm and fall asleep to reruns of Matlock."
Part of the melancholy feeling spawns from a Logan's Run fear that I have an expiration date. My paternal unit is to blame for this irrational fear, as he is typically the parent I go to for level-headed logic. In a moment of weakness he foolishly confided in me that, to his understanding, my earliest doctors gave me a lifespan of 30 years. Basically, in one year from now, my hand is going to start beeping and I'm gonna be on the lam, running from a scythe wielding reaper who has a tight schedule to keep. PARENTAL FAIL.
So I'm still happy to be getting older 'cause, hell, here the fuck I still stand and I am grateful for whatever Force that wants me still roaming wild and free on this planet.
I am also grateful to TEAM RACHAEL! - from the first members of TR! to my current card carrying posse, TEAM RACHAEL! has always striven to keep me out of the grave and onto my next birthday.
Even though it's in the job description to keep patients alive, TEAM RACHAEL! isn't just going on a god complex, they actually give two craps about me and want me to live another day. Not everyone can say they get that kind of support or rallying for ones well being, and I count myself among the fortunate.
Thanks, TEAM RACHAEL! I couldn't have gotten to this point without you. <3
Wednesday, July 6, 2011
Seriously - I think there is a course at their tech school that specifically teaches them to fuck up deliberately and act like it wasn't their fault.
I'm going to crash course everyone in the lady woes I'd been having by providing you a copy of this official letter that sums up the drama I've been going through since I switched to UCLA West (that's the UCLA for poor folk building).
TO WHOM IT MAY CONCERN:
When I was relocating to UCLA Medical West in February/March of 2011, I was scheduled to see Dr. Y. – but never did. She had her resident, Dr. G, take over and never once saw or talked to me herself. I found this to be unprofessional and exceedingly rude as I was not in a position to educate Dr. G about my unique heart health, walk her through my history and expect her to know the best course of action for my needs. Dr. G was the utmost professional and did her best, but when problems arose again in early June, I contacted TEAM RACHAEL! to schedule an appointment with Dr. P, who came highly recommended. I was out of the country and experiencing a very aggravating gynecological problem that I have been trying to sort out for some time. On June 8th, TEAM RACHAEL! informed me that she made an appointment with Dr. P, scheduled for July 5th at 1:15pm. As I do not drive, I asked my mother if she could take me to the appointment. She did and we made plans. We do not live on the west side of Los Angeles – we are situated in the San Gabriel Valley. It takes us at least one hour to arrive for my UCLA related appointments.
When I arrived at 12:45pm to check in, I was informed by the medical receptionist that I would not be seeing Dr. P because it was not his week for UCLA West appointments. Instead, I was going to see Dr. Y. I hope you can appreciate how mind-numbingly livid I was at being told this. My mother and I took time out of our schedule to come to this appointment – to drive through traffic, spending money on gas, lunch, parking only to be told we were not given an appointment with the doctor my cardiology team member was especially careful to make the appointment with. When I informed the receptionist of the problem, she was unsympathetic and told me all she could do was reschedule me. She then informed me that she was the individual whom scheduled the appointment in the first place and “Had TEAM RACHAEL! told me you didn’t want to see Dr. Y I would have made sure you weren’t scheduled to see her.”
Pardon my assumption – but when I schedule an appointment with a particular doctor – I expect to see that doctor. The receptionist should have informed TEAM RACHAEL! of the available dates Dr. P had at UCLA West – not whatever date was most convenient to see whoever happened to be there. I found her blasé attitude to be accusatory as if Linda and I were in the wrong and the whole ordeal to reek of classism. Just because I am on Medi/Medi does not mean I do not deserve to be treated with the same respect given to those able to afford being seen in the Medical Center.
I am not asking for fiscal compensation or even an apology. All I am asking for is for everyone at UCLA West to take a step outside of themselves and act in the best interest of their patients.
There you go. The last few months of "No Babies Allowed" in a nutshell and I am still at square one.
Saturday, June 25, 2011
Oh, and if you didn't already know, Max Gerber, the mad genius behind My Heart vs. the Real World asked me for a quote to go with this kick-ass picture he took of me at the ACHA Conference. Now, you have to imagine me wearing a totally rad Batman tee-shirt as I say this, but here is my quote:
"Geek god Wil Wheaton once said, "Batman is nobody's bitch." From the get-go, I've adopted the same kind of attitude and mantra when it comes to my congenital heart defect: I am not at its mercy, I do not answer to it, and I am definitely not a CHD's bitch."
Thursday, May 19, 2011
(a) in another panel at the same time
(b) napping by the pool
So, on Friday we're texting back and forth as hop between our respective panels.
I text: "Where are you now?"
She texts: "I ran into your old doctor."
I text: "Dr. UCLA?"
She says: "No. From Loma Linda."
Now, I get excited because I'm thinking OMG! It's Dr. Sehra! He left the clinic to pursue research at the same time I left LL to go to UCLA. We really loved one another and got along swimmingly. He was the first cardiologist I felt safe with since I parted ways with Dr. Muhammad Saleem from Childrens Hospital of Philadelphia a decade or slightly less earlier. It had kind of been a shit storm until him, and since we lost touch I got excited thinking he might be at the conference.
So I text, "DR. SEHRA? <3 <3 <3"
She quickly responds, "No."
OK, well, I had Dr. L-, a pediatrics cardiologist. She was pretty cool, no real complaints.
"No. The one from San Diego."
Now, she is aggravating me because Dr. Sehra DID move to San Diego to conduct his research. Just as I am about to angrily text back, she beats me to it with a follow-up text.
* = Dr. Hairybutt is not his real name, obviously, but since I am about to seriously lay out the smackdown I decided it would be best to cover up his identity.
WE MEET AGAIN!
I'm fucking floored. How could this asshole still be in practice? So, Dr. H is an arrhythmia specialist (allegedly) and twice a year I had to deal with his condescending dumb ass when I was forced to go to Loma Linda by my insurance. He is a cocky know-it-all who thought he could "rap" with me because he was the father of teenagers and since I was a teenager at the time, OF COURSE I would just, like, totally relate to him, right? Right?
He was patronizing, chauvinistic, arrogant and worst of all - he did not listen to his patient, me.
I was having on and off again arrhythmia issues and my mom, observant as ever, was the first one to notice that they coincided with my cycle. She told this to Dr. Hairybutt and he totally blew her off. So when it came time for my annual Holter monitor, my mom made sure to schedule it around my cycle and lo and behold - they finally caught my arrhythmia and found a pattern. I think this incident alone earned Dr. Hairybutt a slap from my mom, but wait - there's more.
During my unstable periods of "random" arrhythmia and atrial fibrillation Dr. Hairybutt wanted me to try Procainamide to control them. Here's the thing: I used Procainamide once, when I was nine years old and my arrhythmia was out of control. You know what happened? I developed drug-induced lupus and childhood schizophrenia. It took years to undo the ravages that medicine left in its wake, only to be rivaled again just a couple years later by atenolol, which turned me into such a monster I was "excused" from school for a whole semester (another story for another time, though). Dr. Hairybutt KNEW this, he fucking knew my medical history and still insisted that I give procainamide a go.
I actually ran away from the exam room in frustration and tears, but I let that butthead talk me into it because of course he's a grown up with a degree who Knows Better. Right?
Within hours my body, wise as ever, reacted with a loud and gross, "OH HELL NO, NOT THIS SHIT AGAIN!" and I was vomiting for at least twenty-four hours. I missed even more school than I already had been, trying to recuperate and recover from the violent reaction my body had to trying to poison it again with procainamide.
Now, if that doesn't earn Dr. Hairybutt a swift kick to the nuts, I don't know what will. In lieu of a swift kick, though, I insisted he was to never sit in on my appointments and dole out his bullshit for the rest of my forced stay at Loma Linda, which I would endure until my 21st birthday. So for the next four-ish years we avoided him. Should our appointment coincide with his monthly venture to LL, we would walk past him like he was a specter haunting the halls of the hospital, on the lookout for another child to shake his chains at and shout a condescending, "BOO! Gimme a high-five! For shizzle!"
Cut-to the ACHA conference over a decade later, I kind of feared for my mom's safety...OK, that's a lie. I feared for her freedom of the next 10 to 20 years because Lord Only Knows what this woman will do if this man has cornered her and is talking in Short Sentences Using Small Words to her. Luckily, when I found her she explained that she did not exactly "run into" him but walked past him in the hall. He did not recognize her and she only had the chills of Douchebags Past giving her a vague inclination that she knew this dude. Then he wound up speaking at the panel she sat in on and it all came flooding back. She wisely decided to sit out of stabbing distance.
Friday, May 13, 2011
Seriously. When TEAM RACHAEL! told me that I had to start taking an extra - not even my first - diuretic during the day I was like, "WTF, mates? You think just because I work from home I don't go out of my Bat cave every once in while, just to make sure the zombie apocalypse hasn't happened? What happens if the zombies see me and as soon as I start to run I have to dive into some bushes to take a leak? Then they'll find me and eat me. Good going, TEAM RACHAEL! you're fired."
I mean, really. I'm trying to make a career for myself as an awesome travel, food & event writer (plus ebooks. Coming soon to wherever ebooks are sold) How will I look to my clients if I'm pissing every five nano seconds when I need to be snapping pictures or looking pretty for a camera, huh? I'll look unprofessional and like I'm pissing out last nights whiskey binge that's what.
Don't get me wrong, I love TEAM RACHAEL! and I trust them to know what's best for me (within reason) but I feel like they're so wrapped up in SAVING LIVES that they forget that I actually have a fucking life outside of their office and I cannot just STOP my entire life anymore than I already have so I can be near The Can.
Yeah, yeah, yeah I realize I need to take this pill so that I can relieve the fluid from my body and my liver...so I'll take it, but only when I am just bumming around the house and don't have to worry about getting out of my PJs before four pm.
Don't envy me. I live with my mom.
Wow. I have tackled female sterilization, mortality, and now massive urination. Rock on.
Excuse me, I have to use the restroom.
Saturday, May 7, 2011
Until the whole drama with the lady business and No Babies Club, I've been doing this routine or a variant of it without my mom.
I won't lie, I felt guilty the first time I told her to stay at work like a damn adult. I was way more upset than she was, I'm sure.
She was like, "OK, whatever, you're taking up precious LOLcat time. Goodbye."
And I was like, "OMG! I just told my mommy to fuck off and never come to my doctor appoints. She gave birth to me and this is the thanks I give her, what a complete and utter twat I am!"
I got over it pretty quickly. It's been fairly liberating and I feel like a Grown Ass Woman (never mind that I still live with her). I've never gone to the cardiologist completely alone, but I think there is something to be said for having some kind of company. Moral support and what not.
Now, I am not here to shit on anyone who does have their parental unit(s) tag along to their appointments still. The real purpose of this post is to get some feedback on this topic.
OK, so hit the "leave a comment" button, prove to me you're not a troll by filling out a CAPTCHA and answer the following questions:
1) Who, if anyone, do you take to the cardiologist?
2) If you no longer have your folks come with you, how did you start going alone? Was it a difficult process or did you just cut them off cold turkey?
Thursday, May 5, 2011
The point is I'm sitting here thinking about one of the conversations that popped up during the ACHA conference. It was something along the lines of scary ass medical "professionals" who don't know jack shit about a congenital heart defect. I cannot even tell you the amount of times that I've said "tachycardia" to an emergency room MD and had them look at me like I'm talking like the adults do on Charlie Brown. OK, that is a lie, I can tell you how many times: three. I won't go to ER's that look at me like that anymore.
Then that train of thought got me to thinking about what is it that I want in a medical professional...what are the most vital facts I want a member of my team to store in their brains and whip out to impress me and let me know that they really care? I'll tell you.
In order of importance, here are my Top Ten Vital Facts My Doctors Should Know
10) The current season of America's Next Top Model, including who was just eliminated. Be prepared to discuss and possibly argue about your choice for a winner.
09) Tachycardia. The definition, how it effects me, how to spell it, how to recognize it in a line-up of other arrhythmia's and how to treat it.
08) My policy on medical students and residents and the "no touching" rule. They need to warn these fuckers before they get too close. I bite.
07) Harry Potter series. The books, not the movies. Be prepared to explain your favorite character(s), book, couple and why. Feel free to tear up as emotions overwhelm you.
06) My weight. I never want to step on another scale again, so just pick a number and let's stick with it. Don't be a commitment-phobe.
05) My medications, including doses.
04) Being up-to-date on any of the following TV shows: Dexter, True Blood, Game of Thrones.
03) You are afraid of me more than I am of you and damn near everything I go through will wind up on the internet. Also, Offbeat Follies is required reading for being on TEAM RACHAEL! except for when you're too busy saving lives.
02) My diagnosis. No, you may not look at my chart. That would be cheating, and if I couldn't get away with it in 9th grade Earth science (oh, wait, I did) then neither can you.
01) Even though I'm a tough, f-bomb dropping cookie on the outside, I'm really soft baked and vulnerable on the inside and I look to you for saving my life.
It should also go without saying that when you're on TEAM RACHAEL! your only patient is Rachael, er, me. At least when I'm around and within ear-shot. ;)
What are your Essential Facts that all members of your medical team should know?
Monday, May 2, 2011
I wish I could share my notes with you, but alas, I'd be cheating and copying off my friends notes like 9th grade French class because I was zoning out through a lot of the panels. There was just a wee bit much lecturing for me...pie charts, statistics, bar graphs and an overkill of Power Point. I stopped taking Power Point seriously by 11th grade/1999.
It's not that I don't take an interest in my heart or the goings on of the medical community, but there comes a point when my brain just can't absorb the information. Like algebra.
Let Auntie Rachael get serious for a moment, kids.
I've worked very hard to have a certain level of detachment and distance when it comes to the world of ACHD and I need to maintain that distance for the well being of my sanity. It's not that I do not care, it's that I cannot allow this world to consume me and my defect define me. Some people really get a kick out of every aspect of the CHD world, from keeping track of every shred of medical breakthroughs, advocacy, to molding careers in health care. I just can't do it.
In that same vein, it may come as a surprise to some of you to know that even making friends within this community does not come without difficulty.
The truth of the matter is, I don't enjoy putting myself out there to others because I do not want to lose you. Letting you into my life...into my thoughts, caring for you...and then potentially losing you? It weighs on me. To be honest, it makes me feel my own mortality all the more vividly. To laugh with you, cry with you and share our experiences, nostalgia, silliness...always with that little obnoxious voice in the back of my head, Maybe they won't be around the next time...
The truth is this shit is scary and depressing.
Oh, sure, technology is catching up but will it save me? Will it keep me alive? Will my quality of life improve over time, or diminish with age?
These are the questions that fuel my stress, and I realistically did not expect to find answers at the conference. Unsurprisingly, no one had answers to these questions because they prey on everyone's mind, including our caregivers.
HOWEVER! What I did take away was a plethora of new friends and a new sense of hope for my future. For the first time in my life I understood that there will always be someone who empathizes not only with sincerity but with experience. I also got to witness TEAM RACHAEL! rock out in such a way that made me the proudest professional patient in the history of chronic illness. Y'all throw a good hoedown, kids.
My new friends are awesome and with any luck, we'll remain friends for the rest of our lives.
Yes, I have lost friends and peers. I have lost children once previously in my care. Yes, continuing to forge new friendships comes with a certain level of trepidation.
I push through it, though.
The purpose of life is to live it. Like a boss.
Wednesday, April 27, 2011
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.
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!
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
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
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
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
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!
::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."
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.
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.
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.
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.
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
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