Thursday, December 6, 2012

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!!! :)

Thursday, November 22, 2012

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, November 11, 2012

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. 

Friday, November 2, 2012

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!

Tuesday, October 23, 2012

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.

Wednesday, October 17, 2012

Weekly Confessional: A Preview of Memories

I meant to post this on Sunday, to keep up with my Sunday Confessional theme. Alas, between work and preparations for my trip to the east coast, this post did not make it up in time. I'll try to get to confession this Sunday, though!

I was hoping to announce this post a great deal earlier than this, but that is not how life decided to play out. After a stint in New York City, I will be visiting Pennsylvania, and between gorging on Elio's toaster pizza and taking in all of the art I was too bratty to appreciate as a child, after nineteen years of being away from the city, I am revisiting the Children's Hospital of Philadelphia. This isn't just going to be a whichever day I decide to walk in, followed by lunch at the local cafe, no no. I have a scheduled visit which includes a walkthrough of the fifth floor west wing, my wing. This is the wing where I spent more nights that I'd like to count; a good portion of my years in Pennsylvania. Five years may not seem like a lot of time in the grand scheme of a human lifespan, but these particular five years of my life were easily the most significant as they shaped me, giving me two open heart surgeries, a best friend, my first ambulance ride, influential teachers I will cherish and strive to impress so long as I live, an animal companion whose life meant more to me than many of the humans that have crossed my path, a cardiologist I admired and would hold all others up to in terms of quality and temperament, and a profound loathing of cold climates. I find it appropriate that this adventure be held in my thirtieth year and had hoped for a number of years this would come to fruition. It gives me all sorts of warm and fuzzy feelings when goals are realized.

I didn't walk away from Philadelphia with many unresolved issues of the psychological or emotional variety; I am a fairly upbeat, confident person when I look back at that time. This is largely in part due to the staff and very nature of CHOP doing all they could to make the lives of their young wards easier, brighter and as cheerful as humanly possible. While sterile white is a common motif among my hospital-related memories, so is the color yellow - bright and welcoming, yellow was the main accent color along with rainbow plaid curtains to draw around my bed when the need for privacy took me. 

"Get to the playroom."
"Get to the playroom."

This was my only mantra whenever I was ensconced to CHOP; a virtual wonderland of video games, board games, books, videos, puzzles, toys and other instruments of happiness to assist the morale and hurry along the recovery process. My favorite was the free-standing Ms. Pac-Man game that had no need of quarters, just patience and will.
This was the room to meet and befriend the ever rotating faces, names and stories that came through fifth floor west wing. Though I do not recall all of their names, I am proud to say I remember a handful of the girls and boys whom I either shared quarters and happy memories with: Raven, Lauren, Jeremy, Nathan, baby Alice, baby Jordan. Raven and Lauren would be about my age now; Raven with her many asymmetrical braids of all shapes and sizes, much gusto in her personality; Lauren with her long, fine brown hair and blue eyes. Jeremy was older than I, almost banished to the adult ward but still able to catch a few years in the children's side. He would be close to forty now, with quiet mannerism, long hair and a love for his acoustic guitar. Nathan was around my age as well, dirty blond or light brown hair. 

It is Baby Alice, though, whose wide, blue eyes sought me out as a source for comfort and familiarity amongst the confusion of her just-begun life. I don't recall how old she was exactly, my mother says between one and two. Her own family was rarely present, as I believe they lived out of state with both parents in the work force. If my mom pulled the curtain that separated our beds to a close Alice would scream and cry until it was pulled back and she could see me. I would feed her ice chips and read her stories by the hour. Reaching through the cold metal bars of her crib I would hold her little hand, still chubby with that layer of new baby pudge, and talk to her in tones that suggested a higher knowledge than my seven years possessed. 

Baby Jordan was around two when we met; a plastic tube from his nose led to a Crayola dark green oxygen tank that shadowed him like a faithful service animal. Already handsome with thick, dark curly hair and dimples despite his thinning frame, he was desperate to be on the go, toddling about the playroom with a fierce determination and joy no illness could snatch from him. HIs father, his poor father, exhausted and overwhelmed, let me, a nine year old, watch over his son as he escaped to the downstairs cafeteria for a much needed cup of generic coffee. Exhilarated with my new found responsibility, I took my duties of Jordan-sitting with an ardent earnestness that would follow me into my career as a child care provider. Hovering behind him like a farmer's daughter with a flock of chicks, I herded him around the playroom where ever his heart desired to venture.

Suddenly seized with the memory of one of my earliest babysitting gigs when I was fourteen, I made what I thought was a rhetorical inquiry to baby Jordan's fate. My mom's face had the answer. She had kept the secret of Jordan's death for five years. Enraged, I demanded to know whose death she had also kept but she couldn't recall who lived and who died. She had a system; whenever I was admitted to the hospital and boisterously inquired after one of my little friends, the nurse would silently shake her head at my mother, too subtle a gesture for the self-absorbed child mind to heed. Mom would then politely suggest that such-and-such friend was probably home, or at school. Not precisely a bastion for recollection, my mother had forgotten the rest of them. Jordan's case was different for her; she remembered the haunted appearance of his father…how completely ignorant he and his wife were to this club which they did not ask to be signed up for, only to find themselves in another club with the worst membership fee possible.

My first bout of survivor's guilt happened the night I discovered Jordan's death. The conclusion was swift and simple: I must live and remember as much as I can, whomever I can. I will live and I will carve my own definition of happiness into the universe, not to be deterred by finger-wagging eejits who would tell me I am an unformed person for not completing the required checklist of adulthood success; for not coloring within the lines, as it were. 

Though I would be over the moon should I be able to hunt down those I do remember, I know federal HIPPA laws prohibit medical officials from divulging any sensitive material and therefore I do not have my hopes set high. However, I do not expect this to be a sad visit. Contrariwise,this will be a harmonious reminder of all the miracles both science and the human heart can design when they are one. It will be nostalgic and sentimental, as I am both nostalgic and sentimental, and I will be sure to take notes on my observations and feelings. 

It is apropos that the woman I am staying with during my time in Philadelphia is not only a fellow adult with a congenital heart defect but a former patient of CHOP. Indeed, we were frequently in and out of the same ward when were both young, and odds are favorable that we once shared a hospital room. Irony. She is an abundant mistress.

For now I wait on the proverbial edge of my seat, eager to experience the thoughts, memories and emotions I undoubtedly will as I revisit the Children's Hospital of Philadelphia. Will I unearth catharsis? Self-inflicted wounds of yore? Ennui? As the immortal Chuck Barry once said: you never can tell.

Friday, October 12, 2012

PFAM Blog Carnival: Mistakes of the Medicinal Kind

Selena from Oh My Aches and Pains is in charge of the October Patients for a Moment blog carnival. The theme is "medical mistakes" and this is her prompt:

"We're all human.  (Even the zombies and vampires among us where once human...)
We all make mistakes...including your doctor. 
Since those of us with chronic illness use the health care system the most, I'm sure you all have a story (or two) to tell about the misteps, mishaps and misadventures that have happened to you in the course of getting medical care."

 The only mistakes that come to mind are of the medicinal variety They weren't willful, of course, just unfortunate. 
In 1991, I was prescribed an antiarrhythmia drug called procainamide. It'd been on the market for forty years, so it was reasonable to assume that it was safe to give me when I was burdened with a myriad of arrhythmia episodes. This was my second medication ever, as I had been on Lanoxin (aka digoxin aka digitalis aka foxglove) since I was an infant. So its initial incorporation to my daily routine was not that catastrophic of an adjustment.

It worked. It was really potent with my heart and my monthly run to the ER of the Children's Hospital of Philadelphia became a seemingly thing of the past. For a short while, anyway.

You see, procainamide has a virtual cornucopia of side-effects and one by one they descended upon me like locusts on an unsuspecting farm.

The rarest symptom decided to show up to the party first, plaguing me with bouts of extreme confusion, irrational thoughts and hallucinations - both waking and nightmares. Now, if you had known me as a child, only the confusion part would be leading you to think something was amiss, as it went down with my parents. I'm a crabby person in nature, so any irritability my parents chocked up to school stress (I was bullied) or lack of sleep, which was in fact being disturbed due to vivid nightmares. Assuming it was television infecting my already obnoxiously overactive imagination, my parents cracked down on my tv viewing habits. Indiana Jones and the Temple of Doom was in particular banned. No more monkey brains for meeeeeeeeeeeeee!

It wasn't until the confusion set in and my mother witnessed me leaving the house a half hour early before my bus, walking 15 feet down the sidewalk before becoming lost, confused and thoroughly spaced out that mom got a clue something wasn't all right with her daughter. 
She called me back to the house: "Rachael, where are you going?"
and I remember running back, so happy my mom had found me (remember I am standing in front of my next door neighbor's house - my house is well within view!) "Oh, mom, I was so lost! I forgot where I was and where I was going!"

Finally, physical symptoms manifested, beginning with myalgia - the shrieking muscular pain that kept me in the nurse's office for hours on end, as it was too difficult for me to shuffle from one class to the next.
Then came full-blown drug-induced lupus erythematosus, with joint pain to match the muscles that made me paranoid I had early onset arthritis, the disease that afflicted my grandfather for the majority of his life. Can you imagine a 9 year old sobbing hysterically in a school nurse's office, frightened she is going to die from the unfathomable pain in her joints? That was me, that actually occurred and I remember it plain as yesterday.

At this point my cardiologist sprung into action, hospitalizing me for 9 days to remove procainamide and watch for its ugly symptoms to recede, which they did gradually over time, leaving scarred memories more than any physical impressions.

I now pay attention to the "extremely rare side effects" portion of prescription drug labels. Experience has made me wary, with a profound empathy to the lupus community as I had a taste of what their day to day can feel like. And let me tell you, honey, it ain't chocolate with sprinkles!

My only post script to this is to recount an incident that took place about eight years later, when I was forced to see a terrible doctor who placed me on Procainamide against my wishes. I wrote about that over at The Ghost of Douchebags Past.

Another medicinal mistake was the atenolol debacle...but I have not drank enough alcohol to share that story publicly. Another time, my love muffins, another time.

Sunday, October 7, 2012

Sunday Confessional: Walking the Line

I do not come from a family that applied any undue pressure on me to "settle down." The same can be said for my brother, who has been living in blissful sin with his lady love for a number of years. Our parents could just never be arsed to tell us what to do beyond "Get your elbows off the table"; "Don't talk with your mouth full"; "Mario, stop hitting your sister"; and "Rachael, lower your voice." Even the former dropped somewhere between my junior high and high school years.

So having kids - ah, correction - the desire to have children comes as a natural maternal urge within me, as opposed to a necessity built on societal and familial expectations. It has always been there; as far back as I can recall, as far back as my mom can recall. Harkening back on my pre-memory making days, mom recalls how I played with baby dolls in a way she never did; she who hacked off my hand-me-down Barbies' hair off never had the desire to cuddle a plastic doll to her chest and play house. Mom was about Creepy Crawlers, Erector-Sets, Chemistry Kits, and Mini Private Eye play sets, whereas I wanted stuffed animals, My Little Pony, Sweet Secrets and Care Bears. Gender biased be damned, Mom's tomboyish nature was not connected in any way to her maternal urges and children came to her at a "ready or not, here they are!" young age. So when her own ragamuffin took to dressing up her kitten with doll clothes and referring to it as her "baby" mom figured it was only a matter of time before I'd be opening Rachael's Orphanage for Wayward Children.

Which was, of course, a problem in the sense that my health was poorly and probably going to remain a jungle of issues throughout the duration of my life. Children...should not be an option, all of the adults decided for me in my early life. Well, decided for me is not a wholly accurate term as I do not believe anyone would have snatched my uterus from me like thieves in the night. I believe the correct way of describing this is my mom and my doctors took an active role in making sure my forming brain knew there were other options available in the wonderful, wide world of child rearing. 

It is a fact that my first preschool teacher, who ran her care from her certified home, was also a foster mother, and whose (then) two (eventually three) children were adopted. Whether this was just a twist of kismet or if this was a domineering factor in my placement in her care remains to be known. Either way, from the age of three onward my mind was aware of foster children, adopted children, mixed-ethnic families, blended families. It was part of the norm right when my brain was developing, coming to realize there was indeed a world wider than the span of my arms.

For years I didn't have the need to worry about these silly, grown-up and seemingly faraway troubles. I had fun in my childhood, in spite of my health, climbing trees, wading knee-deep in the creek that flowed not fifty yards from my house, riding my bicycle to the neighborhood convenience store and spending my allowance on a slice of pizza, candy and a rented movie. These were my simple joys in life. Kids...they were always "Some day" while I was content enough to be the mother figure of my friends, of the younger children in my annual summer day camp, of the younger children I shared a hospital room with at the Children's Hospital of Philadelphia.


An incident happened. Something so deeply personal, not really to me as I was an unfortunate witness, but to someone I once called a dear and best friend. Though we are no longer in touch, I feel it would be a disservice to her to share her past with the world.  Let us say an incident happened, one that changed our friendship dynamics forever and made me suddenly hyper-aware of my desire to have children, of the actions I must take to not let this happen prematurely and even if did...what then?

What then indeed. For the first time in my life I experienced resentment toward this situation; it was no longer acceptable to adopt children. What about the joy of naming a child? Of that new baby smell? Of being able to beam with pride when strangers complimented me how much my child looks like me? Of noticing inherent interests, behaviors and quirks? Why was I to be robbed of these things? It wasn't fair and I wasn't going to accept it.

I consoled myself with child care; I took Regional Occupation Program classes in child development, earning myself a certificate by the age of 17 as I spent time out of my school day volunteering at St. James Church preschool, got an after school job babysitting in both my junior and senior years and eventually a full-time nanny position as I went to college for early childhood development/education. 
My career in child care was cut short in 2008 after my health was too effected by the germs my little petri dishes carried around themselves, making me ill if they so much as coughed in the next room over from me. It had been a good decade full of high's and lows, with many a funny story to share with others. 

So I returned to writing, telling myself that I was starting to lose my patience working with kids anyway, and that it was going to ruin my temper for my own children, so best to get out now while I can repair what nerves a tirade of irritating parents and their coddled children didn't trample to death. I'd already been well adjusted back to the idea of adoption, even surrogacy. My moment of self-pity was simply that; a moment. 

Around this time I became aware of the "Childfree by Choice" community. I would never say I ever actively engaged in the community, but I admire and appreciate them. Their humor brings me solace and is something I strongly empathize with because I have a handful of friends, not to mention my own sibling, who is childfree by choice. Despite kids always being part of my agenda, the active decision to not have kids was never weird or unusual to me. The fact that there has been such pressure, ostracizing and social taboo placed on these good folks for simply not populating an already overpopulated planet with their offspring is just mind-bogglingly ludicrous to me. 

So I walk a fine line; a balancing act between laughing with abandon at those sorry enough to take themselves and their offspring seriously, to revel in my ability to sleep in however late I so please, to pick up and take-off whenever I so please; balanced against  the ache I feel when I see infants snuggled in a makeshift sling as mom shops the Farmer's Market, little shoes, dresses and overalls hanging on little hangers in stores, and elementary school Halloween parades.

The line had to be crossed last year when I decided to take my women's health issues into my complete control and, as I so eloquently worded it recently, "dumped my uterus like a bad news boyfriend." Truly, I did not have to cross that line. I could have gone as I had been: on another pill, a limited sex drive, 7-10 days out of my life dedicated to pain, unpredictable heart arrhythmias, and more blood than a Freddy Krueger movie. All of that without the guarantee I would not suffer any accidents, accidents that led to choices of life and death, decisions I believe it is a woman's right to make, but unsure I would make it myself. I could have gone on living like that. Frankly, I am a distrustful person and it was that distrust that made me cross the line and say, "Enough of this tightrope act. If I fall, there might not be a net below to catch me. It's time to solidify my loyalty to one team here." 
I chose Team Adoption/Surrogacy. 

People, I am not the most definitive decision maker. Dare I admit it; I am actually quite indecisive. When I do decide to draw a line in the sand, though? I will usually cross it, cartwheel and stomp on it with steel-toed boots.

I walked that line for so long, though, that What If line that is the very definition of my life in oh so many ways, that even though I know the decision I made was the correct decision for my life, my health, my future...It doesn't mean I am not, at my weaker moments, grieving the loss of What If.

Just because it was the correct answer doesn't mean it was necessarily the easy answer.