A Bright and Shiny New Year

Time for another Patients for a Moment blog carnival! Amy from Diabetes Mine asks:

" ...in honor of the kickoff of 2013, we’ve chosen the topic of Renewals — not just prescription renewals, but any ways in which you may be starting fresh for the new year. Changing doctors? Meds? Exercise routine? Committing yourself to relaxation techniques? Drinking less coffee? Leaf turnovers? Do-overs? Making resolutions, you might say."

 
Nowhere on the Internet did I write a retrospective of 2012, as it was one of the most trying years of my life. At times, 2012 was insufferable; and then, from time to time, ineffable. All of it is too close to my heart for share-and-tell, but I will use this month's Patients for a Moment blog carnival to talk about the future I am looking toward.

I don't necessarily believe in resolutions, although there are goals I would like to meet. Among them:

1) Fitness routine to get into shape. 

2) Figuring out what precisely the rules about traveling and retaining my insurance are.

3) Making it to the Continent of Europe (I already have a rough idea)

4)  Earning more money for writing, be it through Glass of Win or freelance projects.

5) Here:

Always and forever.

What do you have in store for 2013?

Heart to Heart: Lena

Question 1: 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), where you hail from, and the type of congenital heart defect you were born with.

I'm positively ageless, although I can't deny that I vaguely recall some of the 1970's!  I'm a freelance writer, aspiring aging super-model and crazy cat lady from Southern Illinois! I was born with a VDS, DORV, and PFO. (Ventricular Septal Defect, Double Outlet Right Ventricle, and Patent Foramen Ovale, respectively.)

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've had 3 surgeries: my first was around 5 months old when I was first diagnosed. The doctors decided to band my pulmonary artery to buy some time until they figured out to do with me. I lived for 14 years with that band, since the doctors didn't have a surgical solution. The band was essentially placed to make me "comfortable" and was only meant to be a temporary solution. My second surgery was when I was 14, the summer after my Freshman year of high school. It was a difficult surgery with several complications. My VSD was repaired, and when I woke up, I was no longer cynotic. It took several years for me to recover and feel 100%, but then in 2010, I was told my Pulmonary Valve needed replacing. It was then I discovered that CHD has long term effects; valves wear out, scar tissues forms, holes get bigger or patches tear loose. I eneded up having 5 repairs in that surgery. My VSD patch had to be replaced, the surgeon located a PFO defect and closed it, scar tissue from my aorta was remove, and right ventricle muscle mass was removed and I got a new Pulmonary Valve from a human donor. I'm doing good now. I'm very, very blessed!!!

Baby Lena with her twin sis (Lena is on your right!)

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?

Mom and dad were pretty strict and they did not discriminate! If they were worried about me going somewhere, both sis and I couldn't go. They never said "you can't go because of your heart issue or we are worried about you."  I wasn't pampered, by any means, Ha! Ha! I'm glad that I grew up thinking I had responsibility and that I was "a normal kid" at home.  My dad always told me that I could be anything I wanted to be. I always remember him saying that to me. My mom always told me to be proud of my scar. I used to think she was silly! :)

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

I lived in a small rural community until I was 15. It was extremely difficult for me because many of the kids were cruel and many of the teachers were less than helpful or understanding. I was called Purple Lips, Smurfette, Pale Face and ugly. As you can imagine, I was very insecure, timid and painfully shy. Every summer, I hoped that kids would somehow change their minds and that the new school year would bring acceptance. It only took a few minutes on the school bus to learn that the new year would be the same as the last one. Thankfully after my second surgery, I was able to change schools. I immediately made friends and found acceptance. Still, the pain of the past lingered. I've struggled with my appearance my whole life. I've been a work in progress and accept where this discomfort resonates from.  

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 a twin sister, Gina, who is 6 minutes younger and a brother 5 years older that me. My sister and I have always been close. My health has always been a deep worry for her. She had to protect me from bullies at school. She also had to endure the fear that I may not be around after every illness or hospital stay. On the positive side, I always tried to keep up with my sister. We lived in the country when I was younger and spent our days roaming the country side or trying to ride our bikes on the graveled roads. I think that physical activity helped me endure my surgeries better. I think my CHD had made our twin bond even stronger. She has suffered CHD as much as I have. Knowing I could never leave her has made me even more determined! My older brother and I do not have a relationship. He has made it a point since I was little to ostracize me from his life. I'm not sure if he is jealous of the extra attention I got when ill, but it is a dynamic that I accepted a long time ago.

Our slice of heaven, Lena!

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.)

I wish I could be a runner! I love to eat and my limited abilities in cardio makes my gain and lose the same 10 pounds over and over. When I was little, I was told that trying to a carry a child would be potentially fatal. At the time I grieved over that. Thankfully as I got older, I made peace with that, too. I figure if I ever do get the maternal urge, I can find a way to make it happen. It may not be a conventional, of course, but what aspect of my life is?

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

Making big decisions regarding your health sucks! I needed heart surgery a year and a half ago, first time as an adult. It was a terrifying surprise! Picking a surgery date, doing the research, signing consent forms, etc. was such a crazy experience! My dad, whom I lost to cancer at age 20, was a police officer. He always knew how to say the right thing. I always felt safe when dad was around, no matter what was going on. My mom has been battling health issues the past few years and was not able to help me in my decisions and doctor appointments. I appreciated them even more after that experience. I grieve for the burdens they carried for me. Dealing with my health is easier in the aspects of medical advancements. I remember a brief time when I was little that cardiac caths was a surgical procedure that involve an incision in your groin!

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

I can't say I've ever kept from stressing out! I am the kinda person that wears their heart on her sleeve. I have a great support system of friends, family and people I've met through the Adult Congenital Heart Association. Being able to vent to those who've have similar experiences have helped me tremendously. They also help me keep things in perspective! As far as dealing with stress, sometimes I like to eat (as I mentioned earlier). I also love to take walks, and hit the gym. There's a great release from being active. I can honestly say that the gym is the only place I can clear my mind. I also like to indulge in late night TV. I love shows like Roseanne, Seinfeld and The Golden Girls!

Lena, after her last heart cath

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

Being told in 2010 that my heart has a whole lot of issues going on and that I needed a big ol' surgery! Talk about an "OH SH*T!" moment! Everything came crashing down at that moment! I had convinced myself that all of that was behind me, and in my 30's I ran face first into it! 

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

I think I've always had an appreciation for health. I've never smoked, never been a drinker, and always tried to keep active. Although I was in denial that I'd ever need surgery again, I've always wanted to make an attempt to take care of what I have.

Question: 11: What are your hobbies and passions? 

I love animals, literature, Jazz, food, friends, photography, travel, history,  and vintage clothing. Although I have a degree in Creative writing, I have to consider creative writing a hobby at this point. I love helping animals (if I had a dime for every stray I've ever helped) and my kitties are my spoiled brat kids! I love to visit historical places, and graves of famous or notable people (it's fascinating, really!) I hope to roam the streets of London and Paris in the next year, and visit Germany, where my dad's family came from. I recently became an ambassador for ACHA, and CHD awareness has become a passion of mine. I am so frustrated that nobody seems to know about or understand the #1 birth defect or think it's like Coronary Artery Disease. I also love make-up artistry, floral arrangement, cooking, traveling New England...oh gosh, I can't think of all the things I like to do right now!

One Hot Tamale

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 had a friend who is a gym rat recently tell me that I wasn't working out hard enough and that I should be running. I was trying to convey my frustrations about getting 10 pounds off slowly and how it failed. I will never be a runner. It angered me because she was trying to act like I was making excuses. I wanted to yell at her and say, "Well, your heart isn't enlarged; it doesn't leak or have weird plumbing!"  Regardless of the fact that fitness goals will most likely take me twice as long doesn't mean I'm not trying! There will always be people that just don't get it!

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

The fact that we still don't truly know the long term effects of CHD in adults. 'Nuff said!

Question 14: What are your aspirations for your future?

I plan to live until I'm very old. I'm going to travel the world, be as happy as I can be, and make a difference in as many lives as I can! That may sound like a general answer, but it contains so many plans and dreams that I simply can't convey into words. All I can say is watch out!!! :)

A Very Thankful Thursday

Today in the United States of America it is Thanksgiving, a holiday centered around food and gratitude. Forget whatever the history books told us in social studies; that is the stuff of nonsense. For me, Thanksgiving has risen above those falsehoods and is purely about being thankful. It goes without saying that I am grateful for my family/friends/health/roof over my head, so I am listing, in no particular order, my list of the not-so obvious reasons I am grateful this Thanksgiving 2012:

1) RIGHTS! The right to vote, to an abortion (which thankfully I will not have to ever have), to have an opinion, to express myself through art, clothes and words.

2) ASMR videos. It may not be your cup of tea, but I find them absolutely fascinating.

3) Exceptionally nice TSA agents & airline attendants. I've flown to Ireland with two connections each way, had to sleep in an airport in Limerick with only two security guards for company, flown to New York and flown home from Philadelphia on the tail of a hurricane. I only had two quasi-unpleasant individuals out of a dozen or so; otherwise everyone was as nice as can be and I appreciate them.

4) Two insane cats that drive me up the wall but have also learned the softer, more positive traits of being felines. Purring and cuddles make their torment worth tolerating.

5) Cute stationary which I use to keep up correspondence with friends faraway.

6) This fucking squirrel.

7) Spreading sweet, hot feminist rage like wild fire! Women are more united & our brothers/sons/husbands/fathers/men-folk are becoming aware of our plight more than ever before. We are hopefully on our way to a true egalitarian society.

8) Twitter. Facebook. Tumblr. They keep the lulz flowing.

9) PBS Nature, which never fails to make me tear up.

10) The Internet, giving me the ability to connect to so many people including friends old and new.

11) You. Yes, you.

Happy Thanksgiving!

Sunday Confessional: The Costly Heart

Yes, Yes, I know that there are a pile of new interviews waiting to be posted and that I still need to bog about my visit to the Children's Hospital of Philadelphia, but this confessional was inspired by a piece of mail.

Every month or so I receive a Medicare Summary Notice, detailing all of the expenses my health costs them through the claims processed from one date to another (usually 2 months behind the date of receiving this letter). 

This newest summary, for claims processed early August through mid-September, is seven pages long, most of the them printed double-sided. Among the claims listed is my liver biopsy, which took place July 27th. Keep in mind that I was an outpatient.
When added up, with all of the tests, fluids and medicines, anesthesia, techs, machines, man power, and recovery room, the grand total of this one day at UCLA came to: $23,591.23 

Now, do I have $23,591.23 just lying around in old mayonnaise jars buried in my front lawn? Of course not. I have two insurances: a federal insurance and a state insurance. 
Is it perfect? Far from it.
Is it controlling? Indubitably.
Is there room to improve them? Without a doubt.
Despite its flaws, am I still grateful for these insurances and will I continue to remain medical bill debt free so long as they are in effect? You Betcha.

One day I hope to have a less demeaning, stigmatized, controlling insurance - one that permits me to earn an income that matches the cost of living; one that does not dictate how long I can explore the world; one that allows me to save my hard-earned pennies; an insurance that actually permits me to enjoy the life they help preserve. 

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!