Lauren and Korrin

This 3rd week of September, we share another special sibling story. Today we hear from Korrin Wells, a sibling who just happens to be that of our Blog Coordinator! Korrin discusses how CHD has affected her, and the lessons it has to offer. 

As a child growing up with an older sister with CHD, one of my earliest memories was being held by her, but before she went in for one of her open heart surgeries. Lauren has always ferociously protected me, and the day she went in for open heart surgery, I was 4, and that day I was prepared to be her protector; give her my heart so she could wake up. That day is still clear in my mind, I was so confused and anxious. Seeing her dead asleep, for all I knew she could never wake up, but in my own heart, I was completely sure that she would. It’s just not her style to give up and not fight. Her heart has made her into a fighter, and a lover, with a large appetite for life.  That’s probably the best lesson she has taught me, how to fight, love, and live.

It’s hard to describe how her heart has affected my life. Knowing she has this “heart disease” has been ingrained in my life since day one, it was our family’s reality even before I was born. Sometimes I think it worried the people around her more than it did herself. She always seemed more fascinated by it, rather than restrained by it. As though it was just another challenge to conquer. I watched how CHD has shaped my big sister throughout life, and I have learned a lot from the journey, and couldn’t imagine her any other way now. There’s a distinct quality CHD gave Lauren regarding her personality, that I simply couldn’t see her having if she wasn’t born this way. That same quality has shaped my life and inspired me daily. Although it is her greatest weakness, it’s also one of her greatest strengths, as she lives harder than anyone I know. In hindsight, I couldn’t imagine my life without the battle of CHD either. Although I wouldn’t wish CHD on my worst enemy, it has taught me, and my family so much more than we can even realize, and it has strengthened us in so many ways. I believe her battle with CHD gave her the determination to live, I mean really live, and was her catalyst for strength and independence. She always strived to do things herself, pay for her own bills and buy her own car, travel as much as possible, and push physical limits. Anything her doctors said she could not do, she did. She never let her CHD define her, and denied the notion that she couldn’t run, weight lift, or travel to high altitudes.

In the moments when I was so beaten down, and discouraged by life, I looked to big sister as my example that I can do whatever I want to in life. She has always been our biggest advocate in life, turning her attention on me and my other siblings, rather than herself, and became my role model for athletics, change, and ability. Even when she had moments of doubt, and struggled to believe in herself, I saw her grind through the hard work of her journey with CHD and push past merely surviving, to eventually be the powerful young woman she is today. What makes the ongoing battle with CHD so hard is imagining life when she’s not there. However, I see the beauty in this unfortunate beginning to Lauren’s life, because I see that her heart is part of her making, and she is part of mine.

 Korrin Wells (left) is now a high school senior, and captain of her cross country team. She will attend Colorado State University, and is very excited to study marine biology! Korrin is a very talented barista at a local coffee shop, and is saving up money, as she is already anticipating her Masters degree. Lauren Wells (right) is a recent graduate of Colorado State University, who now works in finance as a junior investment analyst. 

The Weiner Siblings

This week, we continue to hear from our siblings and how growing up with a CHD warrior has affected their lives. Today,  we share an interview given by Jeff and Jessica Weiner, siblings of Jennifer Weiner, our former blog coordinator and current Lead ACHD Volunteer.  Their thoughts come to you through a podcast hosted by Heart to Heart with Anna.  So whether you are driving to work, taking a walk, or doing some household chores, you can follow the link below and listen to Jeff and Jessica tell their story. 

 

Left to right: Jessica, Jeff, and Jennifer

                                     

 

Jeff is the oldest of three siblings, born in 1977, and the only son to Chris and Jeff Sr. Jeff was just over 4 years old, when Jennifer was born with a congenital heart defect. Growing up, he was responsible for walking Jennifer to the school they both attended and babysitting both sisters. He enjoyed playing most sports, especially hockey, which he still plays.

Jessica Weiner, at 33, is the heart-healthy, youngest of three siblings.  Jessica’s sister, Jennifer, was born with Truncus Arteriosus in 1982. Jessica was not yet born when her sister had her first surgery. However, the two siblings, who shared a room growing up, are quite close; Jessica often takes on the role of secondary caregiver to her older sister.

 

Amy and Gretta

On this holiday weekend, we are beginning our series on Siblings. We will be dedicating the September theme to their stories, their journey with CHD . Our siblings voices are not often heard through the the chaos that can come with appointments and procedures, but CHD takes its toll on them as well.  This week, we hear from Amy, who wrote this piece about her baby sister, Gretta, nearly a decade ago. However, her words still hold true today.

 

Amy and Baby Gretta

I always wanted a baby sister. I never knew how much it would change my life when she got here though. My little sister was born with a heart defect. Half a heart actually. We both love each other with a whole heart in spite of it.

My step mom got pregnant at the end of my junior year in high school, and had nothing but trouble with her pregnancy. She spent a lot of time in the hospital which didn’t make it easy on me and my dad as I was in school and helped Daddy on the farm. It was right before I started my senior year that we all got the news that changed us forever. Valerie was pregnant with twins! That was the end of the good news…

We found out in the same appointment the Gretta had a heart defect and Daisee had another birth defect that she wouldn’t live with. It is hard to describe the feelings a person has when something that they have wanted for so long it taken away from them. I know that Valerie and my dad had it hard too but I was losing a sister before I even got to meet her. The one thing I knew for sure was that the other one would be loved and cared for more than any other baby sister could be.

As I started school it seemed like every day I came home Valerie had been to another appointment. No matter how much Daddy and Valerie tried to focus on me and my life I knew they were thinking about what else was coming. They missed a lot of my football games because Valerie was in the hospital but it was okay if it meant my sister would be okay.

When Gretta was born I took the day off of school and was so excited to meet her. Little did I know that seeing her in the NICU for a few minutes would be all I got to see her before they took her away to the children’s hospital down the road. I didn’t get to see her for 5 days. Gretta had surgery when she was 9 days old. I never thought I could love a sister so much and I didn’t want to let her go.

Gretta had her surgery and did really well with it. She got to come home on Christmas eve and I couldn’t think of a better present. I knew not to expect any presents since Daddy and Valerie had been at the hospital so much with Gretta. They surprised me with a new camera though. I was so glad and made sure the first picture I took was of Gretta.

Gretta (middle) and her nieces (Amy’s three daughters).

Over the next few months things were different in our house. We were more aware of the germs we came into contact with and all of the doctor appointments meant that my family was gone a lot. I made sure to keep my grades up and to take care of that little sister as much as I could. It was time to get ready for prom and graduation. It was also time to get ready for Gretta’s next surgery. My parents made sure to take time for me to make sure I got a prom dress and all of the announcements were taken care of along with cap and gown. It’s hard to be excited about school and graduation when the most important little person in your life is going to have open heart surgery. I couldn’t stay away though. I went to the hospital to see her in my prom dress after we ate dinner out. I wanted to be with her but I wanted to be with my boyfriend and friends too.

It seemed like anytime there was something big in my life Gretta as in the hospital. I was 2 days over my due date when Gretta had her 4th open heart surgery and a month away from my due date when she had her 5th open heart surgery.

Sometimes I look back and think about what I may have missed. I know nothing was more important than my little sister though. She is now 8 years old and doing really well. She loves her nieces as much as I love her and even though it isn’t easy being her sister sometimes, she is definitely worth it.

Recent photo of Amy and Gretta

Amy is a stay at home mom with three girls and big sister to Gretta age 10. Gretta was born with Tricuspid Atresia, Transposition of the Great Arteries and a Hypoplastic Right Ventricle. Gretta has had 5 open heart surgeries along with countless other procedures. Gretta is 7 years post Fontan and is doing very well. Gretta loves to dance, go camping with her Girl Scout Troop and hanging out with her sister and nieces. Amy is very active in her church and her girls’ Girl Scout troop.

Inside Out

Our last August post is a throwback! Today’s guest blog comes from Stephanie, who shares how her priorities have changed, since her daughter, Maggie, was born with a heart defect.
This was originally posted in May of 2014. 

 

SweetAngelMaggie (1)

I used to really care about elections and politics.  As a political fundraiser, I took it personally if friends or even strangers supported my opponent.  Funny thing is, they were never MY opponent, they were the person running against the person who paid me to help them raise enough money to compete and hopefully win an election.  I jumped from campaign to campaign, always eager to fight and argue and sometimes sacrifice relationships with friends and family members.  Nothing was more important than my job, my reputation and the campaign I happened to be working on.

I worked for a sitting governor during my entire pregnancy in 2011.  I sat in an attic office, talking and complaining and making sure that everything I touched went well.  I raised a lot of money and watched my feet and ankles swell as I paced around at fundraising events.  I took pictures of my “kankles” afterward.

Our daughter was born on January 11, 2012; she was pink and screaming with a shock of dark hair.  I did not enjoy pregnancy one bit, so I was so relieved she was here and I could eat a big dinner.

During the first exam, after the first bath, probably while I was begging for a dinner menu, the nurse said, “She has a heart murmur….But lots of babies do and usually it’s nothing, most close on their own.  No big deal.  The pediatrician will listen and I am sure it will all be fine.”  I shrugged and said OK, never once thinking there was anything wrong.  Her heartbeat had been so strong the whole time I was pregnant and I had such a tough nine months – I was sure nothing was wrong.

The next day, the pediatrician examined Maggie and commented that her murmur was a “3 on a 1 to 6 scale.”  He ordered an echo, just to figure out what was going on.  I will never forget my mom piping up from across the room, “Her sister had Tetralogy of Fallot!”

Tetralogy of Fallot sounds like gibberish if you’ve never heard it.

I never knew my sister’s defect had a name.

I thought she just had a hole in her heart that they fixed.

The doctor paused upon hearing my mom’s comment and I don’t really remember much other than taking a shower and talking to my sister about child birth while the techs did an echo on my baby, down the hall.  My husband and mom walked with her, I wasn’t overly interested because I just knew nothing was wrong.  I walked over and looked in the window while they did it but I just couldn’t bring myself to get upset.

Later that afternoon, around 5:15 or so, my husband and I were in our room with our new baby.  For some reason she and I were skin to skin, maybe we had just finished nursing, when the pediatrician came in the room.

I only remember him walking in and around to the bed where we were sitting.

I do not remember what he said but as he said it, I felt my soul turn inside out.  There is no other way to describe it.

I have never been the same.

The love I feel for my child is beyond comprehension.  I have been more scared than any parent should ever have to be.  I felt something deep inside me rip open.

I have never been the same.

Now, 28 months later, Maggie has had 2 heart surgeries and is functioning normally.  You would never, ever know she had heart issues.  She goes to Montessori school, jumps and runs everywhere and loves her Daddy.  She loves me too, but it’s a different kind of love.

I am back working in politics but I don’t care the way I used to.  I care about Maggie and my husband and our family, but that’s about it.  I care about helping other heart baby families know they are not alone and I have such deep empathy for parents of children with any kind of issue.

Politics is fun but I am just so blessed and thankful that my baby is OK.  I am not the same as before Maggie’s diagnosis and I think that’s a good thing.

 

Stephanie Dorko Austin began her career working for former White House Chief of Staff Erskine Bowles both times he ran for U.S. Senate (2002 and 2004).  She was Finance Director for State Treasurer Richard Moore’s gubernatorial campaign in 2008, helping to raise just over $5M for the primary election.   During the 2010 cycle, she worked for U.S. Senate candidate Cal Cunningham and N.C. Senate Majority Leader Martin Nesbitt.  She was Deputy Finance Director for Governor Bev Perdue’s re-election campaign in 2011.  She has also worked as a fundraiser for State Treasurer Janet Cowell and U.S. Senator Chris Dodd of Connecticut.

Stephanie’s non-profit experience includes serving as Vice President of Government Affairs for the Charlotte Chamber of Commerce and Development Director at the Council for Entrepreneurial Development and the NC Advocates for Justice.  

She currently works for the Cooper for North Carolina Committee and serves on the Board of Advisors of the Jamie Kirk Hahn Foundation and the Board of Trustees of Follow the Child Montessori School.  A Phi Beta Kappa graduate of Trinity College in Washington, DC, Stephanie and her husband, Will, live in Raleigh, NC.

Conquering CHD… And Medical Bills with Akina!

This week we will continue to look at how we can better gear up for the financial stress that will come our way in paying for CHD. We will analyze the topic through the eyes of Akina Takahashi, a Heart Center Social Worker. She offers us great advice on how to work with various professionals and organizations to better prepare for the medical bills.

 

Caring for a child with congenital heart disease or learning to manage your own healthcare as an adult with CHD can be stressful and scary.  In addition to mastering medical lingo

, learning to navigate the health system, and adjusting to long term physical and emotional care needs, all other life demands remain present and a source of stress.   In my interactions with families, finances are one of the most common stressors discussed, often because financial strain is exacerbated with a diagnosis of CHD.  Balancing all of this doesn’t have to be done alone.  In reaching out to your support network (PCHA!), social workers, friends and family there are a wealth of resources available that might lighten your load allowing you to concentrate on everything else on your plate.

Here are some resources that I like to highlight in my discussions with patients and families.

INSURANCE:

Medicaid: is a healthcare program that assists low income patients/families with insurance coverage and results in minimal to no out of pocket expense.  Often your state’s Medicaid program will have tiered options for families dependent on income where you might be responsible for some out of pocket costs associated with accessing care, though this remains typically more affordable than other coverage options.

Of note, many states offer expanded coverage into adulthood. If you recently turned 18 years old and are looking into options or an adult with CHD who is financially burdened by the cost of your healthcare, I’d encourage you to look into if your state provides expanded coverage and if you fall within the income eligibility limits.  Be advised that the income eligibility for children is different and wider than if you are applying as an adult.

An example of coverage options via Medicaid for families in Illinois:

  • A family of 3 can have a household income of up to $2,501/month and qualify for traditional Medicaid which does not require co-payments or monthly premiums.
  • Looking at the tiered levels, a family of 3 can have a household income of up to $5,411/month and still qualify for coverage, though this coverage requires a monthly premium of $40/month per child and a maximum co-pay of $500 annually per child.

If you are interested in applying for Medicaid, visit your local DHS office for more support.

Affordable Care Act: This coverage is different from Medicaid in that it is not income dependent and often a good choice for those who are self-employed or unable to access employer sponsored coverage. Purchasing coverage through the marketplace requires monthly premiums and will have out of pocket costs associated (co-pays, deductibles).

If you are interested in purchasing a marketplace plan, visit www.healthcare.gov

DISABILITY BENEFITS:

SSI: You or your child’s CHD could qualify for disability payments called supplemental security income (SSI) managed through the Social Security Administration.  See recent PCHA blog post here for more information.

SUPPORT TO ADDRESS YOUR MEDICAL BILLS:

If you are stressed with medical bills, I’d encourage you to reach out to your medical social worker who might be aware of local agencies that provide financial assistance for medically related expenses.

A national organization that I typically highlight with families is the United Healthcare Children’s Foundation that provides financial assistance related to medical costs for families with commercial insurance.

Additionally, consider visiting your medical facility’s financial office to find out if there are patient assistance programs or payment options.  Many times, healthcare facilities can discount the cost of care if paying the bill in a certain time frame or provide financial assistance for patients/families based on income.

MEDICATION:

If you find yourself without insurance coverage, GoodRx.com provides coupons for common medications to reduce the out of pocket expense.  Also, Walmart has a great $4 prescription list that offers a month’s supply of medications as low as $4. Many times the pharmaceutical company has patient assistance programs discounting the cost of the medication based on a family or patient’s income.

CARE COORDINATION:

Linking with care coordination is a great way to access more support for you or your child’s heart condition.  A care coordinator’s role is to serve as a medical home and navigate families through the healthcare system.  An added benefit of connecting with a care coordinator is that they help ensure the appropriate utilization of medical specialists.  For example: your care coordinator should be able to interface with your child’s medical equipment company if you’ve been unsuccessful to confirm continued access to medical supplies and prevent the risk for hospital admission or an outpatient visit due to lack of supplies.

If you are interested in care coordination services, inquire with your insurance provider, PCP office, or medical social worker for appropriate linkage.

COPING AND SUPPORT:

Learning to accept help from friends and family can be challenging. By opening yourself up to support from loved ones in the form of ready-made meals or a lift to the doctor’s office is not only a lovely way to reduce your everyday demands, but can also unintentionally help free up funds to direct towards medical expenses.  If finances or any other stressor is overwhelming you to the point where you are having difficulty coping (trouble sleeping, changes in eating, persistent worry, social isolation) and interested in counseling options, please note that many therapists provide sliding scale payment options to allow you to get the support you need.  Consider reaching out to your insurance plan, social worker or PCP for further assistance with linkage.

As you or your child journeys through the CHD world, please know that there is always support available from your medical team and the community.

 

Akina earned her master’s degree in social work from the University of Hawaii at Manoa and attended the University of San Diego for her bachelor’s degree in psychology.  Akina is the Heart Center Social Worker at Ann & Robert H. Lurie Children’s Hospital of Chicago, where she is designated to provide support to cardiac patients and families in the Heart Center’s outpatient clinics.

Congenital Heart Disease in an Era of High Deductible Health Plans

Hello readers! This week, we have a fantastic post written by Mr. Kinney of the Herma Heart Institute, on how patients and families can gain a little piece of mind and take control when the medical bills are rolling in. The journey of CHD can be overwhelming in many different ways, and medical bills is a huge component of that. This post provides a step-by-step process that can alleviate some of the stress that families may have when it comes to those daunting bills. 

One Step at a Time:

Despite being the most common birth defect nationally, congenital heart disease can be scary… and isolating. Whether you as the reader are the patient, or your child is the patient, the physical and emotional rollercoaster can be relentless: the shocking realization that something is wrong, a painful journey to determine what options are and who is going to be your partner in this journey, the fear and unknown heading into any type of intervention, and an arduous recovery in even the best of circumstances. Just as things begin to settle down, some new mail starts to arrive. Medical bills.

This could be a hospital bill, a physician practice bill, a combination, or even a third party vendor bill for some diagnostics, lab work, or medical equipment. Perhaps it could even be an explanation of benefits from your medical insurer (which briefly shows what was billed for, what the healthcare provider is allowed to bill you, what the insurance company is covering and what is your responsibility as a patient/parent), well before you have any idea on the billing. After pouring all possible energy into taking care of yourself or your child, the aftermath can be overwhelming and seem impossible to navigate. Taking things one step at a time can help.

Take Good Notes:

Often times, this type of journey is completely unexpected and one is well on their way through the healthcare journey before they even think of the billing issues. I was recently at a family advisory committee meeting, and heard a mother giving this advice to another mom while we waited for the meeting to start. She detailed her struggles having been down this road before, and is now quick to verify names, confirmation numbers, authorization numbers, dates, and even company she is actually talking to regardless of what number she dialed (for the all too common third party). This doesn’t necessarily solve things from a financial perspective, however it does make it less painful to navigate.

Start With a Phone Call – Insurer:

As early in the process as possible, call your insurer to explain the situation. If this is before you’ve had any sort of diagnostics or intervention, great, but if not, this is still a useful step. Here you can speak to someone who can refresh you on the specific limitations of your plan; perhaps like most, you didn’t pay attention to any details regarding medical conditions you didn’t have, and now with this recent diagnosis you or your child needs additional services. Placing a call to your insurer will provide you with a refresher on deductibles for individuals and families, networks (ie: hearing from the facility that they are in network, only to find out they are considered tier 3), and any other limitations related to the specific diagnosis, (ie: only one outpatient echocardiogram covered per six or twelve month periods).

Explanation of Benefits and Bills:

After treatment, you will receive an explanation of benefit from your insurer and the bills from the hospital and/or providers and/or any third party vendors. Use these items to help you advocate for yourself. . A quick check to make sure the explanation of benefits matches the bill is always helpful to understanding if things are misaligned. Save these statements as they come in, even if there are multiple. As necessary, it may be useful to request a detailed bill from the hospital, which may give you more details on CPT/billing codes used or details on procedures performed which may have limitations in your plan. When speaking with your insurer, using the specific codes is helpful again to understand limitations, denials, or authorizations.

Don’t Worry About your Doctor or the Hospital:

It is not uncommon to form a lasting bond with the care team that saves yours or your child’s life. This doesn’t mean that you can’t push back or question bills, point out something that seems inaccurate, or request clarification. Often times, your care team is actually ready and willing to assist and may be able to link you up with information from their side (i.e.: authorization numbers, details, etc.) and very likely pushing both the health system as well as the insurer to keep things accurate and fighting to deliver the right care at the right time. While working on a particularly complicated bill with a parent a few years ago, we discovered an error where the billed amount didn’t match the explanation of benefits due to insurance shifting with the parent’s new job. After working it all out, and getting patient accounts agreement to send a revised bill which matched the explanation of benefits, the parent asked to talk to me privately. The parent was very concerned that their doctor was going to hear about our discussion and feel like the care team did something wrong or that the patient didn’t value their efforts to care for the family. This concern is incredibly common, however, most of the time, the care team will have no idea that there is an issue with billing, and even if they do, it is much more common that they are an advocate for the patient and family having timely and accurate billing.

Deductibles, Max Out of Pocket, HSAs, Flex Spending Accounts, and Government Aid:

Whether healthy or diagnosed with a chronic condition, it is additionally helpful to understand your health plan deductibles, max out of pocket expenses, and what access you have to health savings accounts (HSA’s) or flex spending accounts. A deductible is an amount the patient must pay before the insurer begins to pay, and is often coupled with a maximum out of pocket before 100% of expenses are paid. A simplified scenario might be a $5,000 diagnostic test, for a patient whose family has a $4,000 deductible, at which point a 90% coinsurance rate kicks in from the insurer, until the patient’s family hits their maximum out of pocket expense of $5,000. When we do the math in this situation, the patient would be faced with a $4,100 bill if their family hasn’t had any medical bills yet that year; $4,000 for the deductible, and an additional $100, as the insurer would only be required to pay 90% of the remaining $1,000. After an additional $9,000 in health care bills, the patient would pay an additional $900 in out of pocket expenses, at which point, there would be no further obligations to the family. This can be a staggering amount to pay for most families, hence, it is useful to explore with your employer if there is any access or matching to health savings accounts or flex spending accounts. Health Savings Accounts (HSA’s) allow individuals to divert $3,450 and families $6,900 of tax deductible income to special accounts designated just for medical expenses. If your employer does not offer a High Deductible Health Plan with a HSA, individuals and families can still pursue a flex spending account (FSA) on their own. These funds are set aside to ensure funds are available for the patient responsibility aspect of bills – while they aren’t always enough to cover the deductible, these funds can help accommodate high deductible impact. In our example above, a patient who had contributed $5,000 to their HSA would be able to use their HSA to cover all of their family’s medical expenses for that year. Further, while every state has different rules, it is quite common for a patient or family to also qualify for secondary government aid like Medicaid, even for working individuals or those who do not qualify outright for government aid based on income. It is worth exploring in your state your eligibility and especially if there is a Medicaid spend down policy, which lets one deduct medical expenses from their income to demonstrate need. This secondary coverage would kick in for all items designated as “patient responsibility” and further reduce the burden to patients and families.

Work with your doctor or provider on timing of tests (sometimes to space out, other times to occur after employer match, etc):

After working through this tedious process, one begins to have an understanding of the ins and outs of their plan, their medical condition, their benefits package, and even their government aid eligibility. At this point, one might discover that they are only allowed one diagnostic test per year, and yet, their provider has scheduled one every six months. Talk to your provider. Sometimes, they are willing to shift the testing to once a year. Conversely, if they feel the medical condition is such that this is required, they are willing to provide additional information to the insurance company to help them understand why there should be an exception in this case. Insurers often provide these exceptions, but may need additional information from your provider. Likewise, a test, procedure, or visit may be required regardless to address the medical situation at hand; in these circumstances, many work with their providers to schedule after their employer match, or later in the year to allow the HSA to fill up some more. The medical situation may not always allow for this flexibility, but without partnering with your provider and asking, they wouldn’t know to even try.

Other options include calling the hospital and asking if they are willing to settle for a lower amount or work out a payment schedule.

All things considered, it is not uncommon to work through all of the above, and still have a large bill on hand. At this point, call the number on your bill, and explain your situation. Many health care organizations will work with patients to understand financial need and income levels, and from there work on either a negotiated settlement amount or a payment plan.

Give yourself permission to work through these one step at a time. Healthcare finance is complex, in large part due to the fact that each and every interaction can be so wildly different than the next, even for patients with the same condition. Push back, question, advocate for yourselves, and help your care team understand the limitations of your health plan – at the end of the day the entire health infrastructure is here to take care of the patients, and even the billing office can be a crucial partner in managing one’s serious health condition.

 

Aaron Kinney was born in Oakland, California. He completed his undergraduate work at the University of California at Davis where he received a Bachelor’s of Arts degree in Political Science with a minor in history (2005). He holds a Master of Science degree in Management from New England University (2009), and a Doctor of Business Administration from the University of Wisconsin – Whitewater (2017). Aaron also served as a Medical Service Corps Officer in the United States Army from 2005-2012, serving as an aero medical evacuation officer, and earning a bronze star each for his deployments in Iraq (2007-2008) and Afghanistan (2010-2011). Aaron is currently the Executive Director of the Herma Heart Institute at the Children’s Hospital of Wisconsin in Milwaukee, Wisconsin, and a credentialed Fellow of the American College of Healthcare Executives.

Qualifying for Social Security Disability Benefits With a Congenital Heart Defect

Last week, we heard a patient’s story on the financial difficulties and challenges that come with CHD. This week we hear from another heart warrior, who comes with a hopeful message. Deanna Power shares her expertise with PCHA, and how patients of all ages may qualify for SSI.

If your child has a congenital heart defect, he or she may be eligible for Social Security disability benefits. The Social Security Administration (SSA) offers monthly financial aid for people of all ages who have serious conditions or illnesses. A CHD will not automatically qualify with a diagnosis alone, but many children with heart problems are eligible for assistance.

Technical Eligibility for Disability Benefits:

All children under age 18 will qualify for Supplemental Security Income, or SSI. These benefits are only awarded to people with a severe financial need. This means that your income will be evaluated on behalf of your child. While the income limits are strict, the good news is the larger your family, the higher your overall monthly income threshold will be.

For example, a single parent with one child couldn’t earn more than $38,000 per year while still having a child qualify for SSI. A two-parent family of five could earn more than $55,000 per year and still be eligible. You can view a chart on the SSA’s website to determine your family’s specific monthly income limit.

Unfortunately, technical qualification is very challenging for SSI, and is the top reason for children with CHDs to be denied Social Security benefits. The good news is that once your child turns 18 your income will no longer be recorded by the SSA, even if your child still lives at home.

Medical Qualification for Disability Benefits:

The SSA maintains its own medical guide, known colloquially as the Blue Book. The Blue Book contains hundreds of listings that can potentially qualify for disability benefits. All listings for cardiovascular disorders can be found in Section 104.00 of the Blue Book. There are listings for heart failure, recurrent arrhythmias, and congenital heart disease. Here are some ways a child with congenital heart disease could qualify:

  1. Your child has hematocrit of 55% of greater, measured at least twice within a one-year timeframe, OR
  2. Your child’s blood/oxygen level is less than 90%, or your child’s resting arterial PO2 score is 60 Torr or less, OR
  3. Your child has dizzy spells, fainting, or other symptoms directly related to cyanotic heart disease, OR
  4. Your child is completely unable to exercise due to insufficient cardiac and pulmonary function

There are more straightforward listings in the Blue Book as well. For example, any child with a heart transplant will automatically qualify for benefits for at least one year after the procedure. A child on the wait list for a transplant will also always medically qualify under at least one Blue Book listing. Finally, any infants less than a year old who have a “life-threatening” heart problem requiring surgery will qualify until their first birthday (or longer), given that doctors expect the condition to continue to be disabling due to the recovery time or impairment after surgery.

The Blue Book listings for cardiac problems are complicated and best reviewed by medical professionals. Fortunately, the entire Blue Book is available online, so you and your child’s cardiologist can determine if your child might be eligible together.

Starting Your Application:

If you are applying for SSI benefits on behalf of a child, you’ll need to do so at your closest Social Security office. Call the SSA toll free at 1-800-772-1213 to make an appointment to apply in person. Once you complete the application, you should hear back from the SSA regarding your child’s claim within five months.

Once approved, you can focus on what’s important: your child’s health.

 

Helpful Links:

 

Deanna Power is the Director of Outreach at Disability Benefits Help, an independent organization dedicated to helping people of all ages receive Social Security disability benefits. She’s currently thriving with Ebstein’s Anomaly w/VSD and is forever grateful for the Adult Congenital Heart Program at Boston Children’s Hospital. If you have any questions on how you or your child could be eligible for Social Security disability benefits, she can be reached at drp@ssd-help.org

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.

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.