Heart to Heart: Kate

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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





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

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

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

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

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

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

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

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

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

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

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

Conversations with TEAM RACHAEL!

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

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

06:36am TR!: WTF, mate?

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

TR!: ¿Qué?

Me: Check your fax tray, yo.

TR!: *checks*

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

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

Insurance: We will cover this medication for you.

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

Me: OMG, how did you do that?

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

Me: TY, I luv u!

TR!: May the force be with you.

Heart to Heart: Alex

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

Question: Can you tell us your name, age, occupation (if you're unemployed just say the occupation you're seeking and if you're a student, say student) and the type of congenital heart defect you were born with.

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

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

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

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

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


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

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

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

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

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

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





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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Bart No Like. Bad Medicine.

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





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

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



Most of the pills I take (minus 4)



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

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

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







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

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

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

images one and three from We Heart It

The Fears of the Chronically Ill

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



via threadless


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

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

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

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

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

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