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!

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.

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.

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. 
EEEeeeeekkkk!  
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.