Heart to Heart: Megan

Question 1: Can you tell us your name, age, occupation, location and the type of congenital heart defect you were born with.

Megan, 29, Researcher, Australia, large VSD.

Question 2: How many surgeries have you had, if any, and what did they accomplish? How old were you when you had these surgeries?

I have had 4 surgeries:

1 - A pulmonary artery banding when I was 4 months old - which turned me from blue to pink.

2 – A VSD repair when I was 5, which turned me from blue to pink again. This was my major repair surgery and I was told the patch was the size of a 50 cent piece (nearly 1.5 inches in diameter).

3- A right ventricular outflow tract reconstruction when I was 10. I still don’t know what this operation was, but my heart used to race a lot before the surgery and afterwards it hardly raced at all for about 15 years, so it must have worked!

4- A mitral valve repair when I was 25 – in the months leading up I was suffering from the worst heart failure I ever recall having – but in reality it was probably somewhere in between stage 3 and stage 4. The repair was successful in that the valve no longer leaks, but the heart failure issues have only resolved due to medication. While the surgeon was very skilled and did an excellent job with the repair, I was ultimately disappointed with the result as I was lead to believe that my heart problems would essentially ‘go away.’

My surgeries were all done at the Prince Charles Hospital in Brisbane - one of the leading hospitals for paediatric cardiology in the country. The first three surgeries were done by Dr Mark O'Brian who was one of the first heart surgeons to start repairing CHDs in Australia. The last surgery was done by Dr Peter Pohlner, who has since retired. It is hard to say whether the quality or standard of care has decreased over time or whether I have just become more 'complicated.' From the discussions I have had with others it seems like my experience is fairly common - the drs are well versed in how to deal with CHD in babies and children, but not so much in adults. My treating cardiologist told me that when I was born, the drs debated as to whether I was a candidate for VSD repair (which I had sucessfully at the age of 5) or a fontan operation. I feel very lucky that I had the surgery I had instead of a fontan, because I may not be doing as well as I am otherwise. 

Question 3: What were you parents/family that raised you like when you were a kid living with CHD versus their current attitude? Were/are they overprotective; did they restrict you in any way?

As a baby and as a very young child I was isolated a lot apparently but I don’t remember this. It would have been before my second operation. It may have impacted me because I was a quiet kid and preferred to be in the library at lunch. My preschool teacher also told my mother that the other kids annoyed me! So maybe I learned to be happy with my own company. My parents try to restrict me more now than when I was a kid. As a kid, I was never excluded from school camps and sports, which I hated because those things were more difficult for me than they were for other kids – I got sick on every school camp and lost every sports game. Now they always tell me I work too hard and do too much.

Baby Megan with Sister Morris

Question 4: How did your health issues affect your school life and your social life, as a kid and teen?

I think I kind of answered this above – the early isolation made me content with my own company. I was always pretty shy and had only a small group of friends who would sit and play with troll dolls or whatever the latest craze was in primary school, or talk and read magazines at high school. When I was at high school I also had a brace for scoliosis which had a more negative impact than my heart condition because I had to wear ugly clothes to cover it up! In the later years of high school I also got a part time job at a shop so I was often tired as well. I think I could have done better in senior if I had more energy – my mitral valve was leaking pretty badly at that point but I wouldn’t know that until about 7 years later when my doctor finally found it!

Question 5: How did your heart health affect the relationship with your siblings (if you have any)? If you have none, how did being an only child with a CHD feel?

I have two brothers, one older and one younger, and my health problems have had an overwhelmingly negative impact on them both. When I was born, my older brother was four and had already gone though my mother’s divorce and remarriage to my father (his stepfather). My parents barely left the hospital until I was 4 months old, and he has told me he remembers being at the hospital with them when I was a baby and being told that I would die. I don’t believe he ever resented me (if anything he was protective), but he has always had behavioural and psychological problems and has often said that he deserved to have the heart condition and not me every time something bad happened. I had surgeries when my younger brother was two and 17 years of age, he has psychological problems and confides in me a lot and we are quite close. I am actually more concerned about the impact of my illness on them and other family members than myself. If I’m gone I’m gone but they have to live with it.

Question 6: Has your health limited you in ways you cannot control/alter? 

This drives me mad. I have coordination and mental processing issues from CP bypass and have never been able to pass my driving test despite numerous efforts. No travel company will give me travel insurance because I have been diagnosed with heart failure – while this wouldn’t stop me I don’t want my family burdened by overseas medical bills which can add up to thousands. I also can’t have children which is the cruelest thing because it impacts my husband and family. My friends all have kids and my aunts and uncles are all becoming grandparents. I wish I could have given my husband a child and my parents a grandchild because there has been so many negative things happen in my immediate family it would be nice to have something positive for a change.

Question 7: How is life with your health easier and more difficult as an adult than it was when you were a kid?

As a child it was so easy, I had no obligations and my parents took care of everything. As an adult I was building up a normal life as much as I could – a job, a house, a partner, dogs – then heart failure hit. I basically had to keep up with all my regular responsibilities with half the energy, as well as trying to keep my health the number one priority. There is no way in any shape or form that life is easier as an adult. The only thing as a child was that I had the feeling that so much was being kept from me – I didn’t feel quite right and the doctors kept telling me that I was fine and could do whatever I wanted and be whatever I wanted. As an adult the reality is scarier but having a part in my health decisions makes me feel like I have some control over things rather than being the reluctant lab rat I was as a child.

Question 8: When facing serious health issues, how do you keep from stressing out or dwelling? Do you have a strong support system?

I go into Rambo mode – become numb and just keep going and have occasional weird flashbacks where all I can smell is that lemonade-y scent of oxygen! I don’t feel like I have that strong a support system because most of my friends are busy looking after their babies and don’t even bother to comment on my facebook (ouch) and my family are often dealing with the latest crisis one of my brothers has caused. 
My husband is good for emotional support, but it’s really hard of him too when something goes wrong. They all do their best but my family has so many needy or incompetent people that I am grateful for the support I do get, and I often tell them not to bother visiting etc because I know it’s an extra strain on them and I don’t want them to feel guilty. I do envy those people who have friends and family that come over and clean their houses or take them out to lunch – but I know my family would do that if they could. This is where online support groups for CHD are so valuable – if you have a problem there is usually someone available to help you, or who at least knows what you are talking about. I can’t imagine the isolation of the last 4 years without my virtual friends.

Megan with her dog, Kratos.

Question 9: To date, what has been the most frightening moment in regards to your health?

The last 4 years, constantly... if I had to pick one it would be when the clowns in coronary care gave me an IV of Amiodarone when I was already on tablets for it. Instantly I felt like I had been bitten by a snake, grew nauseous, my vision blurred and then I couldn’t breathe. I heard my husband say “she’s going blue” and then I saw him (he looked like stained glass by then) being hauled away by nurses. It was frightening not just because I nearly died and couldn’t breathe properly for months (it was 8 months before they got around to ruling out pulmonary fibrosis) but because it exposed a disgraceful lack of knowledge of CHD within the health department where I live. At the time the accident occurred both of my regular treating doctors happened to be away. I was sure to file a complaint against the hospital over that one!

Question 10: What was your attitude about your heart health like when you were a kid, and then as a teen?

As a kid or a teen I never really thought about because apart from the arrhythmias and surgery I had when I was 10 it was never a problem. I know I did try and limit the intrusion of it on my life because I avoided activities where my weaknesses would show. I still hate sport and don’t understand why people make such a big deal of it. What is the state of origin anyway?

Question: 11: What are your hobbies and passions?

I like anything that makes me feel like I am genuinely escaping from my health issues. Unfortunately I don’t have much spare time so the passion I am most involved in is caring for my dogs and trying to keep them happy. I try to walk them every day, train them and get toys to amuse them, but my favourite thing is watching them sleeping after a long day. I think everything about them is a miracle from their little ears to their paws!

Apart from that I prefer more passive activities like books, video games and music. At the moment I am reading Let the Right One In by John Ajvide Lindqvist and he is a genius! I also love Clive Barker’s work. I find that I am drawn to horror because that reflects the mood and experiences of my life, and somehow makes me feel validated in a world where my reality is so unlike most people’s. Sometimes I write short stories and even had one published (it was accepted the day I was last under the knife actually) and if I could ever give up work I would write.

Question 12: 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?

I think this is why I dislike people as a species so much. Not all people of course – just a lot of them. There is so much pressure to have the perfect house, the perfect yard, the highly paid job, the kids etc and it’s impossible to keep up for anybody. So I hate it when people complain about the state of my house or yard, or my dogs barking (um hello, did YOUR dogs see YOU get carted out of the house into an ambulance where you disappeared for a week and nearly DIED – didn’t think so).

Public transport also drives me nuts, I go out of my way to travel at times when I can get a seat without too much trouble. Usually I dress to leave my scars exposed because it makes people feel uncomfortable, or I save my phone calls to doctors while I’m on public transport and joke with them about my symptoms and smile at the horrified looks of people around me. I do this because people like to believe they live in a just world – ergo that young girl with a scar and 50 holes in her arm must be a junky who got endocarditis and needed a valve replacement – tut, tut. But – that is life now, instead of helping each other most people prefer to whinge and complain about others, oops...

Question 13: What has been the toughest part about living with heart health issues?

Having to devote so much time and resources to my health and health care – there is keeping fit, attending appointments, buying medicine, advocating for the care you need, rest/ recovery from life, and managing the negative impact of symptoms on your life. I don’t like the way it forces me to let myself and others down. I have had to deal with separation anxiety about 6 times with my dogs due to my hospitalisations and it wears you down.

Question 14: What are your aspirations for your future?

At this stage that question scares me a little. Most of the usual sideshows that people get absorbed into when they don’t know what to do with their lives are closed to me (kids, travel, workaholism, alcoholism, drug addiction, secret boyfriends and girlfriends). There’s day time TV but I gave that one up! I do want to get as healthy as I can (I am in rehab at the moment), get my dogs and my husband better behaved, and write. It would be my dream!

Megan's precious pups!

Heart to Heart: Joanie

 Welcome to the first installment of the new "Heart to Heart" series, where I interview women living with congenital heart defect(s). If you would like to be interviewed, please e-mail me.

Question 1: Can you tell us your name, age, occupation and the type of congenital heart defect you were born with.

Joanie Dorsey. I just had celebrated my 57th birthday! I'm a Registered Nurse. Right now I am a paper pusher as I gave up patient care 3 years ago because my heart couldn't keep up with the demand. I had a Pulmonary Valve place in June and am hoping to get back to patient care. I was born with Tetralogy of Fallot.  

 Joanie, post-surgery at 10 months

Question 2: How many surgeries have you had, if any, and what did they accomplish? How old were you when you had these surgeries?

1. Blalock Tassaig Shunt as an infant. It gave me a near normal life. I couldn't run and ride bikes like everyone, but I could go to school and play Barbie. 

2. In 1972 (age16) I had as close to a complete repair my surgeon could build for me. At that time I considered myself "fixed". Got married at 20. Asked my cardiologist a dozen times if it was OK to become pregnant. I had a son at 23 and a daughter at 26. 

3. AICD placed for sudden V-tach episode in 2008. Increased fatigue since the episode and gave up patient care nursing. I was under the care of a "regular" cardiologist. Finally decided to break free and see an Adult Congenital Cardiologist.

4. Pulmonary Valve placement via open heart surgery in June 2012. I feel GREAT, 10 years younger, and can't wait to see how fit I can be!

Question 3: What were you parents/family that raised you like when you were a kid living with CHD versus their current attitude? Were/are they overprotective; did they restrict you in any way?

I think my parents tried to treat me as a normal kid as far as what was expected of me in household chores and schoolwork. They were very protective of me physically. Every time I got a cold I was rushed off to the doctor for a big fat penicillin or gamma globulin shot. I can remember running into my room to sneeze or cough into my pillow.

Question 4: How did your health issues affect your school life and your social life, as a kid and teen?

It was hard never being able to play certain things at recess. In 6th grade every class goes to camp for one week. My school would not let me go with the class and wanted me to go to another class while mine was away. My mom said "Hell No", rented a cabin just outside of the camp and took me up there to stay so I could go to the daily activities. I couldn't go on the hikes, but she made sure I didn't miss out on this experience. I was very shy before my surgery at 16, but in my senior year I gained some confidence and had a couple of dates. 

Question 5: How did your heart health affect the relationship with your siblings (if you have any)? If you have none, how did being an only child with a CHD feel?

This is the big can of worms! This has the potential of being very long! I have a sister who is 6 1/2 years older. We have a very strained relationship. Along came this sickly baby that got so much attention. I don't have any wonderful memories of our time together as children. I always thought it was the age difference. When I was in elementary school she was in middle school. When I got to middle school she had already graduated from high school. We just had seperate lives. As adults we had some moments of closeness. She was pregnant with her second child when I was expecting my first. Our kids are close.   After my mom passed away 10 years ago, she distanced herself even more. I've reach out many times. She takes most of what I say or do with negative intent. After all these years, I coming to terms with the relationship I wish we had and reality. When I damn neared died with my V-tach episode, I got two phone calls in six weeks. We live 5 miles apart. Needless to say, this is a tough subject. I don't know if you saw my post in Women with CHD this past week, it did cover the most recent crap.

Joanie, 3 1/2 years old

Question 6: 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.)

As a kid, I would fantasize about being a star athlete. I never was allowed to participate in sports or phys ed. I had to go to the nurses office or the library during those periods. As my heart function decreased in the last 5 or 6 years I had to work less and less. Since my surgery, I can't wait to start hiking! Something I have always wanted to do. 2 years ago I could not carry my new grandkids up the stairs. No problem now.

Question 7: How is life with your health easier and more difficult as an adult than it was when you were a kid?

A few years ago, the most difficult thing was seeing a decline in my health. Getting that Handicap Placard was so depressing! But now, I feel like a brand new person with a brand new future! 

Question 8: When facing serious health issues, how do you keep from stressing out or dwelling? Do you have a strong support system?

I have the best husband in the world. He gives me so much strength. His mother and siblings are also great support. My son and daughter both live out of state. They both came to take care of me after my surgery. They both have great spouses and love me like "mom". In my very dark moments I have a wonderful friend, Jeannette, who is always there for me. In my medical moments of need, I have my friend, Mike, who I went to nursing school with.

Question 9: To date, what has been the most frightening moment in regards to your health?

May 22, 2008. My heart went into sudden V-tach. My husband was in the shower, so being a nurse, I tried to take my blood pressure and pulse. Pulse was near 200 and I couldn't pick up a BP. When Jim came out of the bathroom, I calmly said "you need to call the paramedics". He remained very calm, I'm so proud of him. They couldn't get an IV line in my arm in so they put in a jugular line. I remained conscious the entire time, over 90 minutes. They tried all the medication protocols. I kept staring at the monitor. The lowest they got my heart rate to was 180. When they pushed the lidocaine is when the room started spinning in slow motion and the lights were getting a little dim. 

That's when I started bargaining with God, "I'm not done yet!" My other thought was how I couldn't die so close to the same day that my mother passed away. It would have been 6 years on May 24th. I couldn't put my dad through that. I heard my husband say "Her feet are blue." I really think the ER doc was waiting for me to pass out before he shocked me, but there was no way I was going to do that. If I did, I felt I wouldn't wake up. So my BP was below 70, my extremities were turning blue and I'm still conscious. The ER doc leaned over and said "This is really gonna hurt" and then they shocked me. The worse pain I ever felt. The whole world went all shades of grey, like a black and white negative. I let out a hell of a scream and then I heard the doc say "She's back."

Question 10: What was your attitude about your heart health like when you were a kid, and then as a teen?

I tried so very hard to act like a "normal" kid. I remember telling a girl that my fingernails were stained from polish when she wanted to know why they were that color (a nice lavender). I didn't want to be different or special. I had to miss the entire 2nd semester of my junior year after my surgery. I hated that. After that, I considered myself normal because they had fixed my heart (and I was pink).

Question: 11: What are your hobbies and passions?

My hobbies are sewing, quilting and gardening. My new passion is to make adult CHDers understand that they still need to be followed and to be followed by an ACHD specialist.  

Question 12: 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?

I think some coworkers felt I was lazy. Sometimes I questioned that. When there was an answer to my decline in the fast few years (no pulmonary valve to speak of) I felt validated. 

Question 13: What has been the toughest part about living with heart health issues?

Trying to be superwoman and not being able to. 

Question 14: What are your aspirations for your future?

I want to as much as I can for others with CHD, adults and children. To volunteer at my cardiologist office, to sit with parents when their child has procedures or something like that. I want to bring more awareness.

Joanie, June 2012, 3-days after her 3rd Open Heart Surgery

You can read more about Joanie's life at her blog, Heart Strings.

A Death Among Us

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

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

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

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

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

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

A Cure for Heart Defects

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

Steve's Outline:

THE PLAN:

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

THE GOAL: To eradicate Congenital Heart Disease.

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

Sheer brilliance.

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

Heart to Heart: Casey

This is my series of interviews with adults and teens living with cardiac issues – mostly congenital heart defects. You are invited to learn more about the individual behind the obnoxiously long Latin medical term. WANTED: More people to interview! Looking for teens especially, but I ain't picky. Email me if you'd like to be interviewed!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Heart to Heart: Daria

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dar ~ my heart camper turned friend!

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

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

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

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

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

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

Question: What are your hobbies and passions?

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

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

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

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

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

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

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

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

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

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

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

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

header image source

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.

header image source