Six Years as the Bionic Woman

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

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

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

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

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

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

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

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

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

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

I'm out.

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

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

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

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

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

Heart to Heart: Vanessa

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

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

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

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

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

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

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

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

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

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

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

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

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




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

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

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

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

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

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

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

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

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

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

Q: What are your hobbies and passions?

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




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

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

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

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

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

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

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

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


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

A Cardiac Crisis and the Monster Mash

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

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

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


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

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

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

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


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

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

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

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

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

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

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

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

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

Heart to Heart: Carissa

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

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

ANSWER: Carissa Aim’ee Carmichael, 28, Educational Assistant at Oak Grove Center and a child care worker for New Vision Autism Center and I’m also a student. I was born with TGA Transposition of the Great Arteries but at 19 (2001), I had a heart transplant

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

ANSWER: At 3 months old, I had my first heart surgery-Open heart senning procedure to correct my congenital defect. It was successful for the first 15 years of my life. At 15, I was put on beta blockers and at 17, I had a pacemaker/defibrillator put in. 5 months later it went off (shocked me back into rhythm from tachycardia) and I was put on the transplant list.

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

ANSWER: As a kid, I knew I was different (scar) but I was always told to do what I could. I had P.E. and stuff but I just went at my own pace. I guess I was spoiled because my parents were told when I was born that they knew my heart surgery was not going to be the end all surgery and that I may die someday. I didn’t know that. I thought it was cool that I got a year book every year and my class ring early. I got whatever I wanted…yes I was spoiled

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

ANSWER: Well, I had no social life. I don’t know if it’s just me or having a heart problem but I was a loner and was singled out in p.e. and later waved from p.e. in junior high to high school. So people didn’t like me because they didn’t understand why I didn’t have to run or whatever…I was out a lot of school in high school. By 15 my heart was giving out so I was more tired and didn’t do too many active things…malls, movies…

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

ANSWER: It made my sister (2 years younger) become independent early on. My parents had to take me to Children’s hospital here in Cali when we lived in Hawaii…My sister stayed there and went to school. She was 12. But she is also someone I admire. She took care of me and even though she looked out for me I still wanted to be the big sister but she took over that role for awhile. She’s my hero, when I got my transplant she was about 16ish and all her friends were getting drivers licenses and she went around telling them how important it was to be an organ donor. I was also jealous of her a lot because she was able to go out, party, go to concerts…and after high school she went to a four year college far away… I went to community college down the street.

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

ANSWER: No, I have a new lease on life and now I have no limitations (although contact sports are out which works for me!). I do take meds every day though.


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

ANSWER: After my transplant I got that “do you have their cravings? Do you still have your feelings? Is anything different in regards to the person’s heart I got?" it’s crazy. Plus before that I would use a wheelchair at Disneyland or other places, the mall and people always stared at my legs…that was annoying.

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

ANSWER: Easier because I know enough about my own issues and medical issues so that I can explain it to people better and it doesn’t bother me to talk about it or I have no problem talking about it or showing my scar (wearing v-necks, bikinis). As a kid I don’t think it bothered me too much either….I didn’t know anything else.

Carissa ~ my heart buddy!

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

ANSWER: I never stressed. I felt everyone around me did. My family is the best. My mom was the best and always will be she was there for me in every way possible. She lived with me after UCLA (hospital) in a hotel, she and my dad and sis swapped visiting me every time I was in the hospital. My other relatives that were close would visit or I got lots of phone calls. I was in the local paper and got many cards from my community from people I don’t know but were much appreciated.

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

ANSWER: Maybe when It really hit me that I was going to need a heart transplant. I got scared and cried with my parents int their bed. But then I accepted it and after that I knew it was in God’s hands and I knew I would be OK.

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

ANSWER: As a kid- not a big deal. Teen- a little more insecure because I had no body strength and couldn't keep up. I got tired easily. But I was never depressed or anything; always outgoing, hyper (still) and happy.

Question: What are your hobbies and passions?

ANSWER: I love reading and watching romantic comedies. My biggest passion is working with children with autism. I am drawn to children with special needs and feel I can make a difference. I feel like I have a gift. I work with kids now with severe autism and it has its challenges but I love it. I am also in school getting my masters/credential in special education.

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

ANSWER: I have a permanent handicap pass for my car and people have given me strange looks when I use it and I even got a post it on my window once from someone saying I was misusing it!

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

ANSWER: Well, as of recently- I have decided to get my tubes tied. It has been the hardest decision…I always wanted kids but I look at it like God gave me a second chance at life and if that means having no children of my own he gave me the gift of finishing my education to become an amazing teacher for special needs kids. I decided not to have kids because it would be a complicated/stressful pregnancy. The child may absorb my meds, I could reject and/or the child could be born with issues due to my medications.

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

ANSWER: I blame my scar on that fact that I have no cleavage. When I wear the heart monitor I called it ‘being wired for sound’.

Question: What do you know about the man whose heart is now yours? Have you ever made contact with his family?

ANSWER: I know his name was/is Albert, he was in his mid 40s and very healthy (car accident is my gut feeling) his
sister sent a mass letter to me and others who received his organs.I think like 3-4 others. Just said he took care of his father, loved to cook and was athletic. I think I got one more letter but it's been a long time. I gave her my email but have not received word in over 8 years.

Question: How has knowing other people with heart health issues impacted your life?

ANSWER: Makes me feel not so alone. I recently ran into some lady with a scar and had to stop her and ask her what she had. I'm so blatant about it. It's not everyday you see someone else with a scar or zipper. It makes me feel exhilarated and excited to meet others and share stories. That is what I loved most about camp (where Carissa & I met); sharing stories and learning of other heart problems and how other deal with it. We all seem to have a special bond that no one else can understand.

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

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

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