PCHA: At the Heart with Jess

PCHA was founded by everyday people, joining forces for change.Together, we make a greater impact on the CHD Community. During heart month, we’re highlighting our staff members to share how PCHA has impacted their CHD journey and what they think makes us special. Today, we’re getting personal with Jessica Chenevert, our Marketing Coordinator.

 

 

What do you love most about working for PCHA?
I love being a part of something that really makes a difference. I get to be a part of shaping the future landscape of CHD. I get to work with people that I admire and inspire me every day. Because of our shared experiences, our work culture isn’t like a typical 9-5 job. We’re a family.
What do you think makes PCHA different from other CHD organizations?
We are a one stop shop for all things CHD.
PCHA is the only CHD organization that provides invaluable resources, offers support to families throughout the lifespan, and advocates on a national level.

How does your experience with CHD help you relate to the families PCHA serves?
When I had my son Barrett, we didn’t know there was anything wrong with his heart. We felt so blindsided after a normal healthy pregnancy. It felt like I was thrown head first out of an airplane, spinning in a downward spiral, unable to catch my breath, and helpless to do anything but fall. I think that trauma is very real for so many CHD families out there, and the fact that PCHA is made up of families who have been where they are is crucial, in order for us to effectively fight for and support those families. We’ve slept in those hospital chairs, we’ve made those life or death decisions, we’ve struggled to pay the bills, we’ve lost our insurance coverage, we’ve celebrated every little victory, and we’ve been inspired by the families who came before us.
How did you discover and come to work for PCHA?
I found PCHA at my son’s bedside, while he was inpatient in 2014. Shortly there after, I saw they had a legislative conference in Washington D.C., where families are able to share their stories with congress. I initially disregarded it as something interesting but that I couldn’t do. Then, I saw it again, and again, until I said to my husband, “I think I want to do that, I think I can.” So I organized a T-shirt booster for “Team Barrett” shirts and raised enough money to pay my way to the 2015 conference. I got bit hard by the advocacy bug, fell in love with PCHA, and emailed Amy the following week to see what  I could do to be more involved. I volunteered for the next 3 years and eventually officially made it on staff.
How has your involvement in PCHA impacted your perspective on your journey with CHD?

I am constantly learning new things all the time. The opportunity to be involved in national conversations with other parents, patients, providers, and government officials has opened my eyes to what it really means for patients and families to walk this road, and it allows me to better serve them. It’s also opened my eyes to what it means for my family, as we continue down this lifelong path, from the neurodevelopmental consequences my son faces and the tools he needs to be successful in every aspect of his life, to transition into an independent adult responsible for his own care. 
As PCHA’s Marketing Coordinator, you’re on the front lines interacting with families every day. What is your favorite tagline PCHA uses and what makes it so meaningful?

My absolute favorite tagline we use is “Together, we are Conquering CHD!” It speaks volumes to me because you can interpret it however it to applies to you.
I am Conquering CHD every day as a patient or parent of a child with complex medical needs.
My child is Conquering CHD by continuing to grow, learn, and survive.
Our family and friends are Conquering CHD through their endless love and support for us.
Too many of my friends are Conquering CHD by simply waking up every day without the children they lost to this disease and carrying on their legacy and living their life for those children.
The dedicated and passionate CHD providers are Conquering CHD through their love and commitment to their work and CHD families.
PCHA is Conquering CHD through education, support, research, and awareness.
Together, we are Conquering CHD!

If you won $20 million dollars in the lottery, what would you do with the money?
If I won the lottery I would be speechless for the first time in my entire life! Besides the practical stuff like paying off any debts and putting a portion into savings, I would do a couple of fun things! Firstly, I would donate to my favorite charity: PCHA! Second, I would donate to the Heart Clinic and the CVCC unit of Children’s Minnesota, where my son receives care. Then, I would love to take a vacation, travel around the globe with my husband and son, visiting as many places as we can. Nolan and I have both been to Australia (separately), we would love to go back together. I also want to visit Sweden, specifically the town where my great great great grandfather lived before journeying to America in 1885 to found Lutsen, Minnesota.

via GIPHY

 

The Gifts that Life Brings

Hello PCHA! I hope everyone is enjoying the holiday season. In the spirit of giving, here are a few short anecdotes on the most memorable gifts that life has brought us. Happy Holidays!!! 

The best Christmas present I received in recent years was family abandoning our usual Christmas traditions and coming to visit me after I was re-admitted to the hospital. My Mom having brought Christmas dinner to the hospital, gifts from my family, neurosurgeon and nurses alike and still being able to watch Christmas Eve service on TV. I was just grateful to have family and a good medical team.

– Erica Thiel; MPS I Hurler Scheie Syndrome w/aortic valve stenosis and insufficiency and Mitral valve stenosis and insufficiency, 35 years old.

One of the best gifts I have ever received came in a small blue paper bag with handles.  The contents escape me, except for the full bag of chocolate candies. What this gift represented was a reminder that I was not alone. That in one of the most challenging series of events in my entire life – placing my newborn baby first into a helicopter, then into the hands of doctor to perform life saving heart surgery – when all of my being was being poured into my baby, someone was thinking of me.  That is a gift I pay forward every single moment that I can.

– Amy Basken; mom to Nicholas, almost 14 years old, now.

The best Christmas gift my husband and I ever received was our baby twins coming home from the hospital. One has a CHD and the other is heart healthy but because of both the CHD and other complications, odds weren’t great for survival. They were born in mid October. One came home in late November and the other came home a couple of weeks before Christmas and we were finally all home together. The road ahead was/is still long, but it was magical.

– Meredith Rasmussen Atkinson; mom to Mirabel and Sofia Atkinson, 14 years old, now.

The best gift I have ever received was a Newfoundland puppy. I was in the hospital after my fourth open heart surgery, and my parent’s friends, who were breeding Newfoundlands, just had a litter of puppies. They told me that I would get to bring home a puppy when I got out of the hospital. Just knowing that when I got home I would have a brand new puppy, kept my spirits high, and provided a huge distraction from my current situation. I am forever grateful to that family for gifting me such a beautiful dog, and ultimately, a great friend. 

– Lauren Wells; Ebstein’s Anomaly, 24 years old.

 

 

 

November Recap – Grateful Hearts

Throughout the month of November, we took a look at everything we have to be grateful for, through the hard times and the good. And we discovered that we have so much to be grateful for in this crazy thing called life! 

I just want to make a quick note to the PCHA community, next week you won’t find our usual PCHA blog. Keep an eye out for something special this December and be sure to check back. In the mean time, we are posting tons of great material, so be sure to stay up to date! 

 

A Journey Shared – Joseph Burns

The Gift of Life – Sara Engstrom

Angels in Scrubs

Always Enough – Rebeka Acosta

Angels in Scrubs

In times of hardships, it can often be difficult to maintain gratitude. This week, Heather Speakman shares with PCHA how hardships can often teach us the most about gratitude.

It’s the Eve of Thanksgiving and I can’t help but feel overwhelming gratitude to the team of people that take care of our sweet Madison. I know that there are a few hundred stories and posts of a very similar sentiment but I’ve never been one to let someone else tell my story. So here’s my version

To all of the Doctors, NP’s, and PA’s, I see you.

Image result for gratitudeYou’ve explained procedure after procedure, making sure I understand what’s going to happen. You’ve stopped what you’re doing to comfort me when my daughter’s heart rate dropped to 50, assuring me why it happened and how you’re going to fix it. I’ve gotten update after update and I see the look on your face when you wish it was better news. I see the hope in your eyes that she will get better and that you will get her in my arms no matter what. I see how tired you are but no matter how busy it is you make sure everyone is taken care of, often hopping from room to room with coffee in hand. I see that you’re up all night and you still greet me with a smile and ask how I’m doing. I’ve heard your voice on the phone in the middle of the night asking for consent, I know it can’t be easy to ask for permission in a time like this but thank you for being kind. I’ve heard you say, “Are you coming in soon?” knowing that you have to sit me down and have a really hard conversation about what another blood clot could do to my daughter. You’ve greeted me at the door because you couldn’t wait to tell me the good news that she’s going to come off Ecmo. I’ve high-fived you in rounds because we made it over a huge bump in the road. You’ve made it easy to report back to family what the plan is for the day and what it means so I can remember it easily. You’ve looked me in the eyes and promised that you will tell me when it’s too much because I didn’t want to be that mom who put her baby through unnecessary procedures if the result was going to be the same. You’ve also given me the look that says you’re up for the fight and you’ll do everything in your power to save her.

I’ve had to call your name quickly before you left her room to tell you that I think it’s time, she’s tired. With tears in your eyes, your hand holding mine you slowed your breath and regrettably agreed. My heart wasn’t the only one breaking, yours was too. You’ve come to visit, paying your respects and giving your condolences, telling us that she fought and fought hard. You’ve empowered me, reminding me that this is OUR journey with Madison, no one else’s.Image result for gratitude

To the CICU nurses, I see you.

No matter how many times that pump goes off or the monitor beeps you’re there. You’re always asking me if I’m okay, even if you’re not our nurse that day. You’ve seen our baby post op and assured me that there will be ups and downs in the next 24 hours. You’ve let us in the room even when you weren’t ready because you knew we could handle it. You’ve kicked us out so we can get lunch and promised to call if anything changes. I’ve seen you on your hands and knees checking chest tube drainage, making sure she’s not too sleepy or not too agitated on her pain meds, changing countless dressings on her lines. You’ve been able to get IV’s in places like her head, and feet. You’ve hugged me and told me to go home after a surprise phone call in the middle of the night. Telling me that you’ll take good care of her. I’ve seen you try not to laugh when we’re being goofy and super inappropriate and eventually you break down and participate. I hope you know that we love it when you talk to us and ask questions about our life outside of the hospital. It makes me feel like there WILL be a life outside. I love that you talk out loud when you’re trying to figure out why she doesn’t look right, it gives me comfort to know that you’re not afraid to tell us when something is “off”. Although I must say, you have pretty good poker faces. There have been times where you come to us with a problem but you never come without a plan. I’ve seen the look on your face when you have to come in after the doctor just gave us bad news. Even still, you ask if you can get us anything. I wish you could see the look on your face when I ask for vodka and Xanax, I never said it was for me ;0). You’ve told me to get my kisses and love in before each surgery or procedure. You’ve celebrated victories with me, big and small. I love that you come to say hi, even if you’re busy. You’ve greeted me with a smile and a full report if I missed rounds. I’ve laughed with you until my cheeks hurt.  You let me hold my baby girl after 28 days on the ventilator because you knew I needed it. I’ve seen you work hard in other rooms when it wasn’t an easy day and cover each others lunches sometimes jumping from one room to another.

You’ve talked to us about Madi’s prognosis and helped us ask the hard questions. I’ve seen you love on her like a proud auntie or fairy godmother. You’ve protected our privacy fiercely, drawing curtains and adding a sign to the door. You’ve done some impressive acrobatics hopping up and down from counters so Erik and I could switch spots, despite the ventilator and a few dozen lines in the way. I’ve seen you check on me from your desk, making sure I was comfortable as I held my baby girl in the middle of the night for the last time. You assured me that it’s no trouble at all to put her back in bed if I needed to rest.

You volunteered to be her nurse on the hardest day of my life, one of the many reasons why I think about you every day. You brought clothes from home because you didn’t know if I had anything to change her into. You’ve granted me every wish on my sweet girl’s last day on Earth, minus the Xanax and vodka. You’ve laughed with me and let me cuss like a sailor, giving countless hugs and allowing me to be whatever I needed in that moment. I’ve seen the tears in your eyes as you placed Madi into Erik’s arms so we could say goodbye to our brave, strong girl.

To the “Special Teams” I see you.

I’ve seen you talk to my daughter in your baby voice and call her peanut.  You’ve checked setting after setting on her ventilator, rooting for her every step of the way. You ask me how she’s doing, even though you already know she’s having a great day. You always smile and say hi when you’re walking down the hall or offer a wave from a distance. You’ve done trial after trial to make sure she’s ready to be off the vent.

You gave Madi her first and only Christmas tree, decorated with bells and Beads of Courage, it will stay up year long at our house. No matter how many times we had to switch places to hold her, you were always there with a smile and saying “no problem at all.”

You come and chat with me to let me forget about how tough this can be. I get to tell you the dumb thing I did that week. You’ve listened to me happy or sad and remind me that it’s okay to not be okay. You ask if we’re eating and sleeping. You’ve offered meal vouchers on nights when we didn’t want to leave. I’ve seen you after a rough weekend and distract me with a funny story. You promise that if you come visit it’s not because someone called you to check on me.

You’ve allowed me to speak freely and openly without judgement. I’ve told you how hard this has been financially. You’ve provided resources and help when I was ashamed and embarrassed, assuring me that something like this can cripple a hundred thousand dollar savings account. You’ve called us to tell us someone adopted us for Christmas, I was so relieved.

You were there when I had to tell my thirteen year old daughter that her sister wasn’t going to come home, you listened as I apologized to her for what’s to come. I’ve seen you make Madi’s hand and foot prints, asking Tristyn if she wanted to help.

You’ve given me the power to be an advocate for my daughter, helping me make some really tough decisions. You’ve rallied the troops and packed her hospital room so I could read this very blog to all of you, that moment was incredibly special and I’ll cherish it always.

We’ve prayed together after our sweet angel gained her wings. You’ve helped usher my family and I out of her room, telling me we could stay as long as we wanted but you knew I couldn’t take it anymore. You’ve promised to stay with her until she had to go.

I’ve heard your voice on the intercom so I can come back to see my baby. You’ve given me a red sticker everyday and make sure I’m not full of icky germs. The occasional chocolate is a really good plus. You’ve stocked carts and given me bottles and labels galore.

I know that there are many more angels in scrubs and business casual gear that we don’t see but we appreciate you and everything you do to make sure our daughter is taken care of.

I am constantly telling my friends and family how amazing you all are. Sometimes they even ask for you by name. We pray for you everyday. Being in the cardiac ICU is rough and I hope you know that we appreciate and love you. You’ve become a special part of our extended family and made this journey that much easier.

I expected to grieve the loss of my amazing daughter but what I wasn’t expecting was grieving the loss of her amazing medical team. We miss you all so much.

Thank you doesn’t even begin to cover it but this thankful, grateful mama is going to tell everyone.

Heather Speakman has been married to her high school sweetheart Erik for 13 years and has 4 children, Tristyn Gage, Hayden and Madison. Madison was born with a heart defect called hypoplastic left heart syndrome with heterotaxy and 3 other defects. She lived for 41 days before she succumbed to complications of her heart defects and passed away on November 30th, 2017. Since Madi’s passing Heather has helped raise awareness for congenital heart defects. Heather is an avid blogger, and blogs as a way to help cope with her grief and shares her feelings in the hopes that people will know they’re not alone.

Delbert Collins

Our handsome baby boy Delbert was born at the Children’s Hospital Colorado in December 2017. Del was originally diagnosed with aortic stenosis but after he was born doctors were able to determine it was actually hypoplastic left heart syndrome (HLHS). He spent his whole life in the hospital, and during this time he went through 11 surgical procedure, 5 of which were open heart. At 2 months old he suffered a stroke leaving him without 40% of his brain function. Even through all of this he continued to fight. Delbert won his fight on Father’s Day 2018 and became one of the most beautiful Angel’s our family will ever know. He was so strong and fought so hard, and we will forever miss him. I hope he brings as much happiness to heaven as he did to us while he was here.

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

 

 

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

CHD365 – Recurring Giving Program

Welcome to CHD365!

 

 

 

 

 

 

 

 

 

CHD365 is our recurring giving program.  Your contribution through this program helps us to give knowledge, a voice and hope to hundreds of thousands of people impacted by congenital heart disease.

 

WHY GIVE A RECURRING DONATION?

Recurring donation benefits both you and PCHA. Here are just a few examples:

  • Convenience: A recurring gift is deducted monthly from your bank or credit card account.  You don’t have to think about. You can easily change the amount or discontinue the donation at any time.
  • Stability: A monthly donation provides consistent funding to our education, support, research and awareness programming all year long. By giving consistently, throughout the year, it helps with budgeting.  Not only is it predictable for your check book, but it helps us when planning our activities.
  • Access: By joining our CHD365 program, you will receive exclusive updates and opportunities throughout the year. Get in-depth insight into how your money is making a difference in the lives of others.

 

How do I join CHD365?

It’s easy! Start by clicking the image below. This will direct you to our donation page.  As you make a donation, simply select recurring.  That’s it!!

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: