September Recap- CHD and the Sibling Experience

This September, we explored the experiences our siblings have in this CHD journey. Through thick and thin, our siblings are ultimately our lifelong best friends, and congenital heart disease often has a substantial impact on them. The experience of the CHD journey shapes the relationships we have with our siblings, and this series seeks to examine that relationship. 

Amy and Gretta

 

The Weiner Siblings

Lauren and Korrin

 

The Joy Siblings

 

The Joy Siblings

This week we are continuing to explore how CHD affects our siblings. Johnathan shares how his sister Abbigail, has affected his perspective on life, and the lessons he has learned from her. 

 

My sister Abbigail was born with heart defects in 2008 and passed away at two months old.  At first it didn’t affect me much because I was only five years old at the time and don’t remember many details.  However my mom took a lot of pictures so that helps bring back some memories, which I’m thankful for.  The main thing I remember is how our community had come together to help our family. I do know some family and friends of the family had put together a fundraiser at my school that many came too, to show their support while Abbigail was in the hospital.  My mom also had saved cards that my teacher and classmates had made along with a heart that had everyone’s hand print on it.  Which didn’t mean much to me at the time but now looking back on it, it shows me how important it is to take time to let others know you care and let them know they aren’t alone.  It has almost been ten years and as much as I wish I can say I remember my sister, I can’t. However I have learned many things from her.  Through conversations and stories I am learning more of the depth of Abby’s condition and the impact she had made on others.  I realized if she made an impact in just two short months, I realized how any small act can play a significant part in someone else’s life.  Abbigail has changed the way I see people. For example, If I see a disabled person struggling, I want to help them. If they look lonely, I try to talk to them and make them smile.  I just all around feel the need to be nice and help others anyway I can. If Abby was still here she most likely would have had a lot of help along the way, so I try to be that person for other people.  Every life is precious, no matter what size, shape, or form.  As each person in my family has different  feelings on my sister no longer being with us, we try keeping her memory alive by treating every day to be the best it can be and try to be as nice as we can to others, to make there day a little better.  I do know some days are definitely sad, like the day she died and her birthday, but it also helps us appreciate the time that we had with her and how happy our lives were with her around, even though things weren’t perfect. So every year on her birthday we keep our family tradition and try to focus on the positive impact she has left on us and many others.

 

Hello, my name is Johnathan Joy.  I grew up In Homewood and now live in New Lenox.  I am a freshman at Lincoln Way Central and have three brothers. I love animals and in my free time, I like to hang out with my friends and play sports. I enjoy football, baseball and basketball.

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. 

August Recap- Finances and CHD

CHD take such a huge toll on patients and their families, mentally, physically, and financially. Finances can be such a daunting conversation when it comes to CHD. This series in August attempts to make that conversation a little less scary, so that families may feel like they have some tools to conquer the financial aspect of CHD. 

 

The Ways we Pay for CHD

Qualifying for Social Security Disability Benefits With a Congenital Heart Defect

Congenital Heart Disease in an Era of High Deductible Health Plans

Conquering CHD… And Medical Bills with Akina!

Inside Out

 

 

July Recap- Summer Fun!

The summer season can be a ton of fun, a great time to get outside, or go on vacation with the family. But it can also be overwhelmingly hot when engaged in outdoor activities. In the month of July, we learned how CHD patients, and parents, like to beat the heat in those very hot summer months. 

 

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

Taking a Break for Fun: Summer Possibilities with Margaret King

A 2nd Opinion: Finding the Right Care

5 Ways Heart Families Beat the Summer Heat

 

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.

Qualifying for Social Security Disability Benefits as an Adult with CHD

Qualifying for Social Security Disability Benefits as an Adult with CHD

 

Tens of thousands of adults are thriving with congenital heart defects. While many are able to live full lives, it’s possible that at some point your heart function will decrease and you’re unable to maintain employment. If you’re no longer able to work due to your heart condition, you may be eligible for Social Security disability benefits. The Social Security Administration (SSA) offers monthly resources for people who cannot work. While a CHD does not automatically qualify, thousands of adults may be eligible.

 

Medical Eligibility for Social Security

 

The SSA uses its own medical guide, known colloquially as the Blue Book, when determining whether an applicant will be eligible for disability benefits. The Blue Book lists exactly what medical results or symptoms you’ll need to be approved for Social Security with your CHD. There are many cardiovascular disorders under which someone with a CHD could be eligible. Here are a couple of examples:

Chronic heart failure: this will qualify if you have systolic heart failure with diastolic dimensions greater than 6.0 cm or ejection fraction of 30% or less. You can also qualify with diastolic failure with left ventricular posterior wall plus septal thickness totaling 2.5 cm or greater, OR an enlarged left atrium greater or equal to 4.5 cm.

Arrhythmias: these will qualify if they’re uncontrolled with medication and you have episodes that cause you to faint or nearly faint.

Symptomatic congenital heart disease: there are three ways to qualify under this listing. If you have cyanosis (blue discoloration of skin) at rest, plus hematocrit of 55% or greater OR arterial O2 saturation of less than 90% in typical room air.

You can also qualify if you have “intermittent right-to-left shunting resulting in cyanosis, plus an arterial PO2 of 60 Torr or less.

Finally, someone with symptomatic congenital heart disease will qualify if they have secondary pulmonary vascular obstructive disease with pulmonary arterial systolic pressure elevated to at least 70% of the systemic arterial systolic pressure.

The entire Blue Book is available online, but (as you can see) the listings were written for medical professionals and can be very challenging to read for typical CHD patients. If you’re not sure if you’re eligible for benefits, you should review the Blue Book with your cardiologist to get an idea as to whether you’ll qualify.

 

Starting Your Application

 

The easiest way to apply for Social Security benefits is online on the SSA’s website. If you’d like the help from a Social Security representative, you can always apply in person at your local SSA office. Call the SSA toll free at 1-800-772-1213 to schedule an appointment to apply online today.

It should take five months or so to hear back from the SSA regarding your claim. Once approved, you can spend your monthly benefits on your upcoming medical care, childcare, home modifications, rent or a mortgage, groceries, or any other daily living needs.

You can apply for Social Security online at www.ssa.gov.

 

For more on when and how to apply, more helpful links include:

https://www.ssa.gov/disability/professionals/bluebook/4.00-Cardiovascular-Adult.htm (Blue Book)

https://www.disability-benefits-help.org/social-security-disability-locations (SSA offices nationwide)

https://www.ssa.gov/disability/disability.html

 

 

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

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.