The Ways we Pay for CHD

The theme for August is finances, and how the families affected by CHD pay for all the healthcare that goes into a CHD patient. This month we will be sharing stories and advice from people of all walks of life who come with many different perspectives. This week we will hear from a patient who shares their personal journey in paying for CHD, and all the struggles that comes with. Finances can be a very personal topic, and due to the personal nature of this week’s post, this contributor has asked to remain anonymous.

 

When I was 32, I learned that my childhood congenital heart defect (“CHD”) treatment bankrupted my parents.  When I was 34, my CHD treatment nearly bankrupted me.  I guess as a child, you never really appreciate your parents’ struggles, until their struggles become your own.

I was born a “blue baby,” grew into a “zipper kid,” and have now lived long enough to be labeled an Adult with Congenital Heart Defect (“ACHD”) survivor.  My childhood was spent in and out of hospital; I never really gave much thought to it as a child – it’s just the deck I was handed.  My family never had a lot of money, but my parents never burdened me with the financial struggle that my CHD treatment placed on them.  In those days, zipper kids were uninsurable; I never realized the gravity of that until I survived into adulthood.

I still consider myself a zipper kid, even though I am fortunate enough to be an ACHD survivor.  I saw a pediatric cardiologist until I was almost 30 when my insurance forced me to see an “adult cardiologist.”  My compelled transition into adult cardiac care led to a series of struggles, among the most palpable, a financial struggle. The CHD financial struggle is the topic of this blog today.

I recognize in writing this article that the term “struggle” is an unfortunate, yet fitting term.  In all respects, I am extremely blessed – I have a roof over my head, clean water, and food.  I was blessed to find doctors who could help correct my purple lips, fingers, and toes.  I have survived 9+ heart related surgeries, including 4 open-heart surgeries. I generally still have enough energy to work; I was able to pursue an education.  I know now, more than ever, that many ACHD survivors cannot say the same.

I recently read an article stating that ACHD care is among the most expensive in the world. At 34, I had a painful reminder of this fact.  I note that for this blog, I have selected one experience, among many.  My ACHD care/treatment has emptied my bank account more times than I care to remember.

This particular story begins on a sunny afternoon quite like any other.  After lunch I became suddenly very ill: sweating, fever, chills – I chalked it up to the horrible flu going around and went home, and got into bed.  I slept all weekend and then called into work on Monday…and then Tuesday.  My primary care doctor opined that I had the flu.

My symptoms persisted and eventually my ACHD cardiologist admitted me to the E.R.  Turns out I did not have the flu; I had endocarditis, a serious bacterial infection that was attacking my Melody Valve.  Although unheard of to me at that time, endocarditis is apparently common among CHD survivors.  My endocarditis infection kept me in the hospital for two-weeks, in which my insurance was billed over $350,000.  Upon release, my treatment continued for six more weeks with at-home intravenous antibiotic infusions; my insurance got a bill for over $10,000 for that.

Over the years my insurance premium has been on a steady increase.  I never had the luxury of employer-paid insurance because their HMO plans never covered any of my CHD providers.  So, despite being employed full-time, I had to maintain my private PPO insurance to survive.  This year, my insurance company raised my premium from $798 per month to $987 per month.  My insurance company also increased my annual deductible from $12,000 to $20,000.

My bout with endocarditis resulted in over $10,000 in medical bills.  Upon returning to work after hospitalization, I was promptly fired…just as I have been after every other major heart-related incident in my adult life.  (yes, discrimination, it happens all the time and yes, I know it is illegal.)

To pay for my medical bills, avoid bankruptcy, and keep a roof over my head, I had to zero out my bank accounts and sell my car.  The stress from that financial burden almost landed me back in the hospital.  I was fortunate that the unemployment board took pity on me; I was able to buy a few groceries.  Because of my CHD, I had hit the proverbial bottom.

I write this blog not as a doom and gloom or pity piece, but as an acknowledgement of all those zipper kids – and their parents – who are struggling to pay for CHD care and treatment.  It is expensive and it is hard, you are not alone.

I suppose I also write this piece to vent a bit of anger.  Because of the cost of my basic CHD treatment, I will never have financial stability.  I live everyday knowing that one major incident – like an inevitable surgery – is likely to result in bankruptcy, despite my “Cadillac insurance.”  I brace myself for the day when my “practically bankrupt” becomes actually “bankrupt.”

But, I’d like to end this blog on a bit of a higher note, so I am happy to report that I am rebounding (again).  That’s what us ACHD survivors do; we survive.  I got a new job – and my employer health insurance (mostly) covers my CHD providers.  Thanks to my employer sponsored healthcare, my deductible has decreased from $20,000 to $7,000 (a hint of sarcasm).  So things are looking up, and I know now that support for CHD zipper kids and their parents is growing bigger and stronger with each day that passes.

 

This individual’s diagnosis is TOF. But more specifically situs inversus with levocardia, pulmonary atresia with ventricular septal defect, atrial septal defect, and malposition of the great vessels. In adulthood, they also now have anteroseptal infarct and mild LV systolic dysfunction.

ACTION ALERT: Congenital Heart Futures Reauthorization Act is moving forward – we need your help!

ACTION ALERT:

Congenital Heart Futures Reauthorization Act is moving forward – we need your help!

The Congenital Heart Futures Reauthorization Act passed the House, this past February and is now making its way through the legislative process in the Senate.

We are thrilled to report that this Wednesday, July 25, the Senate Health, Education, Labor and Pensions (HELP) will hold a mark-up of the CHFRA. This is an essential step to move the bill out of Committee toward becoming a law.

The Congenital Heart Futures Reauthorization Act will authorize the CDC and NIH to build upon existing successful programs to address a leading public health issue and improve the quality of life and care for individuals with CHD.  More specifically, the bill will:

  • Expand the CDC’s longitudinal surveillance of individuals with CHDs across the lifespan, including regarding healthcare utilization and demographics through a cohort study, leading to evidence-based practices and guidelines for CHDs.
  • Authorize an awareness, outreach and education campaign at CDC, which will help inform the children, adolescents and adults with CHDs who are unaware of their high risk of additional complications as they age about the need to seek and maintain lifelong, specialized care.
  • Assess the research needs and existing projects related to CHDs across the lifespan at NIH, which will allow us to better understand the current state of biomedical research and what gaps may exist.  

 

ACT NOW:

This is the perfect time to reach out to your Members of Congress and remind them to support S.477 (The Congenital Heart Futures Reauthorization Act). Email, call, tweet, connect with them today!

We are also specifically targeting the offices of those who are on the HELP Committee, participating in Wednesday’s mark-up.  If you live in the following states, please call or email your legislator, today!! See below for a complete list.

  1. Find your Senators: www.Senate.gov
  2. To send a quick tweet: Calling on @SENATORNAME to support S.477 in upcoming mark-up on Wednesday. It matters to me and 2.4M others with #CHD. #Conqueringchd #CHD4Life
  3. Call or email:
    1. If you are calling be sure to include the following:
      1. My name is __________ and I’m calling from __________.
      2. I’m asking the Senator to support S.477, the Congenital Heart Futures Reauthorization Act during the mark-up process, this Wednesday, July 25
      3. Congenital Heart Disease is important to me because ___________
      4. This legislation will help build upon existing work by the NIH and CDC, build upon existing successful programs to address a leading public health issue and improve the quality of life and care for individuals with CHD.  
    2. If emailing:

Dear Senator _____,

I’m writing from ___________.  As your constituent, I am asking you to support S.477, The Congenital Futures Reauthorization Act  during the mark-up process, this Wednesday, July 25.

This important legislation will authorize the CDC and NIH to build upon existing successful programs to address a leading public health issue and improve the quality of life and care for individuals with CHD.  

This matters to me because ____________.

Thank you for your time and consideration.

Sincerely,

Name

 

Senate Help Committee Members:

 

5 Ways Heart Families Beat the Summer Heat

The summertime sunshine can be a welcome treat after a long winter, but it can also be dangerous. Many people with complex CHD have difficulty tolerating the summer heat. PCHA recently asked the CHD Community, families, and patients to share what they do to beat the heat. This is what they had to say!

 

1. Hydrate! Hydrate! Hydrate!

Our bodies are made up of approximately 70 percent water. Water has many important functions in the body, including; regulating your body’s temperature, digesting food, and excreting waste. Children are at a greater risk of dehydration than adults. This is because in relation to their size, children have a larger proportion of their skin available to lose sweat and be exposed to heat. Additionally, children don’t always recognize that they’re thirsty, and if they’re not encouraged and reminded may forget to drink. Add Congenital Heart Disease into the equation and dehydration can pose an even greater risk.

Here are a few tips to help your kids stay hydrated in the summer sun:

  • Pack a water bottle to have handy whenever you go out. You can even try having a couple of frozen water bottles in the freezer ready to grab and go!
  • Encourage your child to drink water before, during, and after physical activity
  • Always offer and encourage water with meals and snacks, even if they don’t like it!

Tricks for when your kids don’t like or just don’t want water

  • Try adding slices of fruits such as lemon or orange to water, for variety and flavor.
  • Let your kids choose their own cup or bottle to drink from.
  • Be a role model! Make a point of drinking water with your kids.
  • Experiment with ice cube trays; kids can have fun freezing water into a variety of shapes and adding those ice-cubes to their drinks. Check out these great choices: Under the Sea, Star Wars, Stars & Hearts!

 

2. Indoor Activities

Depending on where you live, summertime temperatures can average anywhere between “Oh boy, I’m starting to melt a little bit out here,” to “Someone dump a bucket of ice water on me right now.” The anticipation for the last bit of snow to melt and the warmth that summer brings can’t arrive fast enough but, for some, it can be the moment you began feeling bad about not wanting to leave the comfort of your cool home for the hot outdoors. But despite the pressure to get out and have fun in the sun, you shouldn’t feel bad about staying inside with your heart warrior on those hot days – especially when their causing your cardiac kid serious discomfort.

 

3. Enjoy a Cool Treat

What’s summertime without ice cream? Clearly we know why July, the peak of summer, is National Ice Cream Month. Whether you’re rolling through the Dairy Queen Drive-thru, passing out popsicles by the pool, or busting out a pint of Ben & Jerry’s after the kids go to bed there are a lot of sweet treats that seem to take the edge off of a hot day. We followed up our “how do you beat the heat” heart poll question by asking our followers what their favorite flavor of ice cream was and who knew there were so many different flavors of Ice cream out there!?

Here are the top 5 flavors heart warriors and their parents prefer:

 

#1 Mint Chocolate Chip

#2 Chocolate

#3 Cookie Dough

#4 Peppermint

#5 Moose Tracks

 

4. Take a Dip

Making a splash in the pool or at the beach (or relaxing on a raft) is at the top of just about everyone’s favorite summertime activity list! It’s a great way to stay cool, and get everyone out of the house. Though it’s important to keep in mind each of your swimmers’ strength and that harmful rays can still do damage, even in the water. Be sure to tote the waterproof sunscreen when you’re hitting the water!

5. Soak up the Summer

Some of us just love watching those temperatures rise, soaking up the sun, and feeling that warmth on our faces. It’s important to remember moderation, too much sun can make you sick too! Encourage your Heart Warriors to learn their own limits, while still having fun! Remember to take breaks, find a shaded area if you can’t go inside, plan your outing when the sun’s not at it’s hottest, use a cooling sport cloth, and drink plenty of water!

You’re not alone in looking for fun ways to beat the heat. Love it or loathe it, summer is sticking around, so whatever you do be safe and enjoy it!

 

*Please note the information in this post is not meant to be a substitute for medical advice.

A 2nd Opinion: Finding the Right Care

Although we know it’s not Thursday, this week we’re doing a throwback! We are always working on improving the transparency between patients, and the doctors. In our continuing conversation of transparency, please read this family’s story in navigating the difficulties of finding the right care for  their little boy, John… Spoiler alert, there’s a happy ending 🙂 This was originally posted on July 25th, 2016. 

We moved to a new community a couple of years ago and it was time for my three young children to see a dentist. We had no information to assess what dentist was the right one for our family. Who specialized with children? Who had years of experience in order to master their skills? Who had qualified assistants who performed the important cleanings and post care? Which dentist had their patient’s best interest in mind instead of lining their own pockets? But when I stepped through the front door, I knew I was in the right place. On the bulletin board in the waiting room were the hand-written words, “Love People. Use Money. Don’t Love Money and Use People.”

Five years ago we stepped into the new community of Congenital Heart Defects (CHD’s) when I was pregnant with our third child, John. He was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) and would need three open-heart surgeries within his first few years of life. The first, and most invasive, surgery would be needed within days of birth. The limited information parents have when researching a dentist is eerily similar to choosing a pediatric heart surgeon. But this was not a small cavity that needed to be filled.

Norwood

Finding this care was not easy. It’s a big decision left to chance because factual information is difficult to find and, if you’re like me, parents often don’t know who or what questions to ask. My conscience propels me to publicly explain the difficulties we had leading up to our son’s care decisions, in hopes of raising awareness as to what’s been termed as the “transparency issue” in the pediatric heart world.

DIAGNOSIS

I was around 22 weeks gestation when the ultrasound technician couldn’t find the left side of John’s heart. The left ventricle is responsible for pumping blood to the body. Hypoplasia means “under formation”. I wondered what I did to cause this severe heart defect. Was there a day I forgot to take my prenatal vitamins? My husband and I both shut down. We were hurting deeply and naturally concerned for our unborn child and the ramifications this would have on our marriage, other kids, finances, job, and all the responsibilities it takes to be a good parent to a child affected by CHD.

Family Reading

Together as a family, pregnant with baby John, HLHS

We had a hard time remembering what the acronym HLHS even stood for. It was all very overwhelming. The internet was our first teacher, but later, when we met with a perinatologist (a high risk OB physician), our suspicions were confirmed. We were completely unaware that there are hospitals willing to perform invasive, complex surgeries on fragile infants with limited experience or success.

DOCTOR APPOINTMENTS

The doctor, in his quiet voice, told us it was an especially bad case of HLHS because of John’s extremely small aorta. He said there was a chance we could lose the baby in utero. Twice, he brought up termination. Thinking back now, I find it illogical that presenting termination of our child as an option was legally required, but presenting transparent information about various pediatric heart centers and their outcomes, which can give heart kids a fighting chance at a qualitative life, was not.

So many questions were racing through our minds by the time we met with the pediatric cardiologist. We were eager to trust someone knowledgeable and get a feel for what life was going to look like for our family.

I was pregnant and tired when the cardiologist performed a thorough and exhaustive echocardiogram of all the tiny little valves, vessels, and arteries of John’s quarter-sized, two-chambered beating heart. Afterward, the cardiologist sat at eye level with us, showed us diagrams of the heart, and confidently began to explain the three open-heart surgeries that were needed to save John’s life. The cardiovascular system of our newborn baby’s heart needed to be completely reconfigured, including extensive reconstruction of his tiny aorta.

But a thick, confusing blanket of vagueness descended when I asked where we needed to go for these invasive surgeries. He shrugged his shoulders in response. I asked about heart kids I was following on social media and he told me their hearts were great, but it was the eating issues they struggled with. There was a negative connotation in his voice when he answered our questions about other hospitals in the area, suggesting that a teaching hospital would just have a lot of doctors running around, telling us what to do. His expectation was to stay local for the surgeries.

The cardiologist removed himself from the conversation. He never gave us any qualitative facts about statistics, credentials, or historical experience. There was no discussion about recovery and the complications that can easily arise after surgery. His indifference was hurtful and placed John in a dangerous position. Something inside me told me to protect my child from this practice.

Hands on Pregnant Belly

Therefore, we entered into our own research process completely blind and on our own. There was so much at stake and the pressure was emotionally exhausting.

FINDING THE RIGHT CARE

We had no idea where to start. On the internet I read dozens of blog posts, describing the daily ups and downs of post-surgery recoveries. Almost every writer was advertising whichever hospital or doctor they had become emotionally attached to. Hospital websites were filled with marketing techniques. The culmination of everything I was reading on-line only caused me to withdraw further.

Out of desperation, I called four different heart moms who all went to four separate heart centers and started to compare notes. My husband spoke with another heart dad that traveled a substantial distance for his child’s surgeries. We called a family practice doctor we knew, who talked to other doctors he trusted. Hard facts were nowhere to be found.

While searching for information, I attended a local support group meeting filled with some of the strongest mothers I have ever met. It was like a tidal wave of one horrific tragedy after another. Tangible information was hard to find, but thankfully there were whispers and private conversations. I ended up getting a name of a surgeon’s nurse who I could call for help.

After consulting with two different surgeons, both at their respective hospitals, we decided for John to receive care at a nationally ranked center of excellence. It was their seasoned experience, as a whole, that set them apart. As I type this, I’m fighting back tears of relief and joy, because there was a high likelihood that John would be dead or disabled had we not found our own way to this great hospital.

Docs Surrounding Bedside

Doctors and nurses surrounding John’s bedside after his 2nd OH surgery, the Glenn.

If you are a soon-to-be heart parent, your child is amazing and worth fighting for! When it’s your blue baby coming into this world, gasping for breath, and about to be placed on that operating table, you’re going to want to be at a hospital that’s not afraid to truthfully share their outcomes of whatever procedure your child needs. If you need help or guidance during your research process, you can use PCHA’s Guided Questions Tool for practical advice.

Transparency improves trust and is essential to improving quality and outcomes. Parents deserve to be properly and truthfully educated on their viable options of where to go for surgery and recovery. Choosing which hospital to go to for invasive surgeries can be the difference between life and death. It can be the difference between your child walking off the school bus to go to Kindergarten or spending the rest of his life in a wheelchair. And what we discovered is, finding a good surgeon isn’t enough. Infants and children recovering from open heart surgery need a supportive and organized system in place due to complicated recoveries. Thankfully, John was at a center that had specialized equipment and experienced cardiac sub-specialists readily available. He is one of the lucky ones. He is the real, beautiful, amazing little boy behind this transparency story.

Toddler Pic, looking down (1280x853)

John was a breastfeeding 9 month old when he crawled across the living room. He took his first steps at 14 months of age. And today he continues to develop normally, graduating from preschool, alongside peers his own age.

We vacationed over the 4th where he:

Jumping into lake

Jumped into the lake with his family and yelled, “CANNON BALL!”

Standing on Head

Stood on his head.

Climbing

Climbed the playground equipment.

Fishing

Learned how to fish.

Ice Cream

Ate Ice Cream.

Boating

And shouted from the hull of the boat, “To the beach, daddy, full speed ahead!”

And that’s exactly what he’s doing. He’s a precious little boy moving full speed ahead as he grows, develops, and begins to understand his important place in this world.


John

John turns 5 years old this month with a bright and promising future in front of him! He lives in West Des Moines, IA with his parents and two older siblings, Abigail and Caleb. He receives care at The University of Iowa Children’s Hospital in Iowa City, IA where he successfully underwent the Norwood, Glenn, and Fontan open-heart surgeries as well as an interventional cardiac catheterization where a permanent fenestration was inserted. He has dealt with complications including Chylothorax, NEC, Embolic Stroke, PLE, and Plastic Bronchitis. He sends out a huge thanks to all who have worked together to make his life what it is today.

Taking a Break for Fun: Summer Possibilities with Margaret King

This week we are continuing with the theme of summer fun! Today we’ll hear from Margaret King, a Heart Mom, who spends her summer hanging out with her fun-loving son.

 

In the CHD life, sometimes it’s hard to get a break. While summer brings a brief reprieve from school expectations and IEP goals, we CHD families have our own challenges: from trying to cram appointments and therapies into the months when our child is off school to watching some of our children struggle with the loss of their usual routines and social outlets, navigating new extracurriculars staffed by people unfamiliar with our child’s diagnosis, and dealing with hot weather and physical activities that can be too strenuous for our kids.

Yet, summer is a wonderful time to experience new places and try new things that can open the windows of self-discovery, create family memories that will last a lifetime, and even increase skills for self-advocacy. Families living with CHD deserve, and need, opportunities for fun, exercise, and release from stress and worry. While as a heart mom, I’ve fine-tuned our family’s version of “fun” over the years, I hope to instill in my own child that “fun” is the adventure itself, not just the destination.

Learning Your Limits While Being Limitless

Multnomah Falls in pouring rain–silly us, bringing only 1 umbrella to the Pacific Northwest!

As someone with chronic illnesses myself, I want to teach my child to respect how he is feeling physically and mentally, and to know when he is reaching his ‘max” for the day. Some days he can go almost nonstop for 3-4 hours, and other days, he might struggle to walk even a quarter of a mile, depending on weather, whether he has a cold, or just has been on the go too much. Honoring this has been great for his self-awareness and self-advocacy in other areas of life.

But we got to see this!

Sometimes, it also means going somewhere fun when we’re feeling good, even if it isn’t “perfect” weather outside. This has resulted in many of our most magical days, because we’re often among the only people crazy enough, for example,  to go the beach or Multnomah Falls in the pouring rain a couple weeks ago (and the only people crazy enough, apparently, to visit Oregon with only 1 umbrella for 3 people).

 

 

The ocean in the rain: maybe not perfect lighting for photos, but we had a blast.

“Off” Days Are Our “On” Days

We try to avoid going places during “peak season” due to hotter temperatures, longer lines, and crazier parking. Often going to a fun destination (like a water park or amusement park) very early or very late in the season is much quieter, cheaper, and all-around a lot less wear-and-tear. Last summer, instead of going to a bigger our out-of-state destination, we took a week off and visited several fun places within a 2-hour radius of our home…on the weekdays, when they would be less crowded.     

 

Reservations and Expectations Are Not Family Friends…But the Unplanned and Magical Are

Pre-paid tickets? Big expectations? These, at least for us, create a lot of pressure to get a certain level of experience out of what often turns out to be a major expense. Lowering the stakes allows us to be open to the unexpected, and results in a lot less guilt or disappointment if the weather is taking a lot out of my CHD child or one of us just isn’t feeling 100% that particular day.

This past winter, we drove from Milwaukee to Madison, WI to see the holiday lights at the zoo. We walked all over the zoo, saw all the animals, and got worn out before the lights even came on. Sure, we didn’t end up seeing the lights, but leaving through the back entrance, we saw the sun setting over a beautiful frozen lake, and joined the people playing on it. Honestly, playing on that frozen lake it something I’ll never forget–and was probably far more special to us than seeing the holiday lights, after all.

To quote the late, great Anthony Bourdain, “no reservations” has become my motto.

 

We didn’t see the holiday lights that night…but played on this frozen lake at sunset instead

Fun, Fun for Everyone

Summer fun will look different for each family, and for many of those living with CHD and other special needs, that is particularly true. But over the years, here a few tried and true summer options we’ve found:

  • Museum membership reciprocity: instead of buying several memberships to local attractions, we pick one different membership each year. Most museums, zoos, nature centers, and botanical gardens that sell tax-deductible memberships have reciprocity with other institutions, allowing us to visit several other educational sites per year with our membership–usually all for free. Some children’s museums also offer free tickets or memberships for families with special needs.
  • Nature: We’ve discovered many county, state, and even federal natural areas and historical sites that have free parking and free entry. Many nature centers and parks have short (1-mile or less) nature/interpretive trails that are flat, easy terrain and often wheelchair and stroller accessible.
  • Farms and farmer’s markets: Summer is the time to visit local farms that offer pick-your-own berries, peas, pears, and apples. We like these because you can go at your own pace, go early or late if it’s hot out, and of course, make delicious and healthy recipes when you get home. Local farmer’s markets are a great sensory experience for kids without being too overwhelming, and get us eating healthy in a season that’s ripe for indulgence!
  • When in doubt…water: Swimming pools and wading in lakes are, of course, kid favorites, but going ponding at your local nature center, visiting splash pads, or just running through the sprinkler are great ways to cool off. When it is too cold for swimming, we enjoy simply beach hunting at local lakes for “meditation rocks,” “worry stones,” and other treasures.

 

A heart-shaped piece of driftwood, a gift from Lake Michigan

  • Or animals: The healing power of animals can’t be overstated. Being out and about in summer gives us more opportunities to view animals in their natural habitats, as well as safely encounter them in educational and recreational settings.
  • Library programming: Summer reading programs promote reading for fun prizes, but many summer reading programs offer free events for children throughout the summer. From constructing marshmallow catapults to storytimes and magic shows, to kids’ concerts and reading to a service dog, my son has had some great experiences right at the local libraries.
  • Flower hunts: When my son was recovering from his 3rd heart surgery one summer, our activities at home were limited for several weeks, especially because there was a major heat wave occuring at the same time. That was when we started our summer tradition of walking around the block, going on “flower hunts” to see what was in bloom every few days. Sometimes, simple is best…but there’s nothing wrong with becoming acquainted with your local wildflowers and garden blooms, with their accompanying butterflies, caterpillars, and birds!  

 

Summer with CHD has its own considerations, but it’s also the perfect time to find out what you love to do as a family, try new things, and gain important insights and life skills. “Fun” doesn’t have to be a big production or involve “big ticket” attractions–though there’s nothing wrong with doing those once in awhile, too! We’ve found that simple spots are some of the most relaxing and beautiful–and easiest for us to adapt to, depending on our own needs.

 

 Margaret King is a Wisconsin writer who enjoys penning poetry, short stories, and young adult novels. In her spare time, she likes to haunt the shores of Lake Michigan, similar to many of her fictional characters. Her recent work has appeared in Unlost Journal, Verdancies, the Ginger Collect, Foxglove Journal, Moonchild Magazine, at art shows and in various other spots on the web. She was recently featured as Poetry Superhighway’s Poet of the Week, and is the author of the recently-published novella, Fire Under Water.

Summer Fun! – Laura’s Adventures with CHD at Camp Odayin

For the month of July, we are bringing you stories of how CHD families enjoy the summer, along with tips and tricks on how CHD patients can beat the heat. To kick us off for the month we have Laura Hoagland, an adult CHD patient and avid adventurer. Laura shares her experience with Camp Odayin, and explains why no matter how much you love adventures, the unknown can still be very scary for CHD families.  

 

To say I enjoy summer is an understatement. I LOVE summer! Growing up in the Pacific
Northwest summer was filled with family vacations to the coast, afternoons on the lake and
attending a local summer camp with school friends. As I got older, and especially throughout
college, I intentionally scheduled traveling into my summer
agenda; tours through Eastern Europe, roller coaster riding in
Disneyland, exploring Alaska, sky diving, road trips with college friends down the entire west coast, zip-lining down Whistler Mountain, bungee jumping and paragliding over the Teton Mountains after a day in Yellowstone. This summer, I’m exploring Sweden and Iceland. I’ve always had an adventurous spirit and summer is when my spirit can truly soar. In 2009, as I was finishing up my undergraduate degree in Special and Elementary Education, I quickly became nervous about my future. Not only was I about to leave the safety and predictability of being a student and enter “the real world,” but I was entering adulthood with CHD. My anxiety and nervousness led me to a quarter-life crisis! So I took my problems straight to Google! I began searching for support groups for young adults with CHD. I had met a handful of people with CHD before, but never had I met another person with Tricuspid Atresia, a single ventricle or the Fontan physiology. I felt like I needed a role model, a support group, someone to help guide me on my journey as adult with CHD. I felt alone and I wanted my hand held as I ventured into the unknown. What does adulthood with a CHD look like? My search turned up message board sites and some Facebook groups but I had no luck in finding an in-person
support group for adults. However, I did find summer camps for children with CHD.
Summer camp? Children? I LOVED summer camp when I was younger and as an aspiring
educator, working with kids seemed like summer fun to me! I found Camp Odayin in Minnesota. I was worried that the Midwest would be too hot and humid for my half heart, but after discovering that camp was on a lake and had air conditioned cabins I applied to be a counselor. That summer my adventurous spirit got on an airplane and flew to Minnesota, where I knew no one. As a volunteer camp counselor, I spent the week horseback riding, canoeing, swimming and becoming a human bowling ball down a slip n’ slide, all while wearing silly outfits. Oh, and I got eggs cracked over my head by campers!

As summer faded into fall my memories of camp continued to shine bright. After an exhausting
year as a first-year teacher, I was excited for summer break. I was mostly excited to venture the
1,500 miles and spend another week at Camp Odayin. Before I was to fly out for camp, I was in
Southern Oregon with my family. The week before this vacation I was taken to the ER because I
turned purple. While in Oregon my oxygen saturations dropped into the 70s. My parents,
veterans of traveling with a “high risk” CHD kiddo, kept calm and arranged portable oxygen for
the duration of our trip. I called my cardiologist and we scheduled an exploratory heart
catheterization once our vacation was over. Talk about a damper on summer fun.

Vacation was over. It was a Thursday and I was at Seattle Children’s Hospital about to have my
bajillionth heart catheterization, I’ve literally lost count. As I was walking myself into the
operating room, and began climbing up on the OR table, tears welled up in my eyes. I was 24
and scared. Six years before when I had a heart catheterization, it didn’t go as planned and
surgical intervention was required. This summer, I had plans, so things needed to go as
planned. My nurse looked at me and in a half-sarcastic tone asked, “Would a teddy bear make
you feel better?” I looked at her, tears rolling down my cheek and replied, “Yes. I know I’m 24
and I’ve done this before, but I’m scared of the unknown.” She came back with beautiful quilt
and I drifted off to the calm of anesthesia. When I woke up, my nurse looked down at me and
said, “You don’t need to be scared. You’re O.K.” In recovery, the doctors shared that there
appeared to be evidence of a small “shower” of pulmonary embolisms, and it was time to be
more aggressive with Warfarin. I was to spend the next several days recovering from the
procedure. I explained that on Saturday I had a plane to catch to Minnesota. He said no. I’m
stubborn. Two days after my heart catheterization, I got on that airplane. Some may think I was
running away from something, but in reality, I was running towards something.
My second summer at Camp Odayin changed my life. My recent “heart scare” gave me
perspective, a different view of camp and my role as a counselor. I had a camper so cyanotic
that she required 24/7 oxygen, and she rocked it with more grace and class than I could ever
imagine doing at 15. I had campers who showed off their scars
like badges of courage and honor at waterfront and when they
saw my scars they got excited that mine matched theirs. When I
told my campers and co-counselors that I couldn’t go horseback riding because my leg was still recovering from my heart catheterization, no one looked at me like I was “weak” or weird. They were just impressed that the night before I was piggybacking campers around the ball field. Growing up I was never bullied for having a heart defect, but I always had to explain myself. I had to explain why running was hard, why I needed an oxygen tank or why I had a scar down my chest. No, I wasn’t bullied, but I felt alone. This week, at camp, I didn’t feel alone. I felt like I belonged. I met several other counselors who were adults thriving with CHD. To this day I call them my heart family. The mission of Camp Odayin began to heal my heart that had been emotionally exposed in the OR. My spirit soared, because it was free. Free of explanation, free of judgement, free of worry.

I volunteered for three more summers before moving to Minnesota in 2013 and being offered a summer job on Camp Odayin leadership staff. Now I’m entering my 5 th summer as Summer Camp Co-Director. This isn’t an ordinary summer job, it’s a job full of summer fun! I get to kayak, ride pontoon boats with kids, sing songs, play games, go tubing behind speed boats, throw water balloons and roast marshmallows. At camp, I may act like a “big kid” but Camp Odayin is where I grew up. Ten years ago, I was scared to enter adulthood with CHD, I felt fear as the path of adulthood loomed in front of me…it looked dark, hollow and lonely.

When I first went to Camp Odayin I was struggling with my quarter-life crisis. I searched for people who could help me along the journey, to help me see the light within the tunnel of adulthood. When I left camp
that second summer, I left knowing what adulthood for a CHD looked like. It looked like me. I realized I am the light in the tunnel of adulthood. By living and continuing my journey, one day at a time, my experiences shine bright and illuminate the future, for my campers and other CHD survivors. Deep in my heart, where there was once a hollow, lonely feeling of fear and an emotional wound, there is now hope, joy and confidence. At Camp Odayin I have the most summer fun imaginable, a week to be the role model I once longed for. When I introduce myself to campers, I don’t tell them I have a congenital heart defect, I just introduce myself as Hoagie. My intention as Camp Co-Director is to be my most authentic self
and create a week where campers feel free to be themselves,
no explanation needed. If they notice my scar and bring it up,
I’ll share my heart story. If they just want to talk football, that’s
OK too. In the summer, we’re free to be and as we say each
night at Camp Odayin, “you can be happy if you let yourself be.”

 

 

Laura Hoagland was born with Tricuspid Atresia, Pulmonary Stenosis, VSD and and ASD. Laura has a single ventricle and had the Fontan procedure in 1991 at the age of six. If Laura is not at camp or in her classroom teaching you can find her adventure seeking and traveling. Laura lives by the motto, “half a heart, not half a life!”