Jaguars’ Josh Lambo to Wear Cleats for Heart Defects!

My Cause My Cleats 2018

 

 

NFL / #MyCauseMyCleats

Jaguars’ Josh Lambo to Wear Cleats for Heart Defects!

Jacksonville Jaguars Kicker and Pro Bowl contender, Josh Lambo, brings much needed attention to congenital heart disease with his My Cause My Cleats charity selection for 2018. This NFL tradition will place CHD in the national spotlight, this football season. Josh will wear his cleats, recognizing PCHA during games 13,14, and 15! By highlighting CHD, Josh and the Jaguars pay tribute to patients and families affected by the most common birth defect. 

My niece was born with a hole in her heart and is regularly challenged by her condition. The Pediatric Congenital Heart Association’s goal is to conquer heart disease and I strive to bring awareness to their mission in hopes that they can help my family and others overcome hardships in their health.

Click on the Instagram post below to see Josh’s video announcement where he shares about his niece Leah, who was born with a hole in her heart. “She had to have open heart surgery when she was three months old.”  He notes that it was a difficult time for his family, “it’s a stressful time in any one’s life.”   Josh shows his incredible compassion and his reason for supporting PCHA: “For any other families that have to go through that, I want to make sure that they are well taken care of.”  We are thrilled to hear that Leah is doing well now, loving life and doing great!!!

We thank the NFL, The Jacksonville Jaguars, and, especially, Josh Lambo for bringing awareness to congenital heart disease through their support of the Pediatric Congenital Heart Association. 

More coverage:
Jacksonville Jaguar News Release 
Bleacher Report Coverage

About Congenital Heart Disease (CHD) – CHD consists of problems with the heart’s structure or the way it works that are present at birth, including related lifelong consequences. CHD is the most common birth defect, affecting 1 in 100 babies born each year.  CHD is a lifelong disease requiring ongoing specialized care, there is no cure. There is an estimated 2.4 million people living with CHD. Twenty five percent of children born with CHD need heart surgery or other interventions to survive, yet as patients grow up, fewer than 10% of adults are receiving recommended care. Congenital Heart Disease is the #1 cause of birth defect related deaths,

About the Pediatric Congenital Heart Association –  The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.” We are accomplishing this through collaboration with patients, parents, providers, and partner organizations to improve quality and outcomes through CHD education, support, research and awareness. Visit our website at www.conqueringchd.org

For additional information, please contact our Director of Programs, Amy Basken, at abasken@conqueringchd.org.

Find us on social media:

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#GivingTuesday: Give Knowledge. Give a Voice. Give Hope.


Here are a few key ways to make an impact on #GivingTuesday:

 

Donate or Create a #GIVINGTUESDAY Facebook Fundraiser

Make every dollar matter when you give to PCHA by helping us put essential resources into the hands of hospitalized patients and families. Whether two days old, or twenty years young, having knowledge, a voice and hope is essential, particularly when in the hospital. Every dollar donated on today supports our care bags containing nationally respected educational resources and soul soothing comfort items.

Donate to our Giving Tuesday Facebook campaign HERE

Stretch your dollar – Create your own Giving Tuesday Campaign for PCHA on Facebook and challenge your friends and family to give, too!!

Not on Facebook? No worries, you can still donate through our website.



Echo the Owl Holiday Sale!

Due to popular demand we are extending our Black Friday Echo sale! Purchase by December 10th to receive your Echo in time for a holiday gift, and help us Conquer CHD! Get 25% off your purchase of Echo the Owl and we’ll also give one to a patient hospitalized due to Congenital Heart Disease.

Use promo code: ECHO25

when you head to our online store.

This adorable plush owl stands 8 inches tall. His fur is soft enough to melt anyone’s heart. The heart on his chest represents the community’s efforts to conquer congenital heart disease, making this a must for everyone you know who is touched by CHD.

 

 


Join PCHA in Washington D.C.!

Registration is open for the 2019 Legislative Conference in Washington D.C.! Join us as we unite our voices with The Children’s Heart Foundation and Adult Congenital Heart Association to educate our members of Congress about Congenital Heart Disease!

When you attend this conference you will:
– Learn about current CHD activities in Washington D.C.
– Learn how to effectively tell your story.
– Connect with other CHD patients and professionals.
– Share your story with your members of Congress.
– Inform your legislators about the need for research and data collection.
– Make a difference on behalf of those living with CHD!

Your voice matters and together, we are #ConqueringCHD  

REGISTER HERE


 

Connect with your Local State Chapter

Help improve the lives of those with congenital heart disease and their families through direct support and education – meeting families where they are.  Through local activities like peer-to-peer support, care package distribution and educational materials, we are working directly with patients, families and medical professionals impacting one life at a time. Get


Finally, Celebrate all we are doing, together, to Conquer CHD!

Always Enough – Rebeka Acosta

In our last post on the series of gratitude, we hear from Rebeka Acosta. Rebeka recognizes how there are so many people to be grateful for, and how those people form a community and help you through the frustrations of life. 

Gratitude turns what we have into enough. -Unknown

At the end of any given day, when the dragons have been slayed, I crash into a puddle of physical and emotional exhaustion. Special needs parenting is hard work and it is terribly easy to let it swallow you whole. There are far more places to hide and wallow than there are rainbows to jump through.

And that is precisely why it has to be enough.

Oh, let me be a part of the narrative

In the story they will write someday

Let this moment be the first chapter.

Where you decide to stay

And I could be enough

And we could be enough

That would be enough

-Hamilton the Musical

It took me a few years to truly welcome the joys and pains of parenting special kiddos. I suppose it is easy enough to find gratitude in the things that make life easier, but as the child of a social worker and teacher, I am always drawn to my fellow humans. No matter how quick the moments come and go, I’m always trying to find the bright spot.

Every year as the holiday season begins, I love addressing cards to friends and family. As I sat at the kitchen table late one night last week, with the dogs curled at my feet, one of the boys appeared in tears. My initial internal reaction was frustration. Everyone was finally in bed. It had been a long day. Couldn’t I get just one hour of peace to address these cards?!

I took a deep breath. Ten minutes is enough, I thought. It will just have to be enough.

He crawled into my lap even though he had far outgrown it. He whispered quietly and asked who the cards were for. We spent the next hour talking about each person and adding a few to the list. This morning I revisited the pile of cards and sitting on top were the five my kiddo had requested, with a sticky note telling me why they were important.

Dr. K: for being my first doctor and teaching Mommy to take care of me

Dr. Becky: for saving Kato’s life (his dog)

The Apple Store: for cheering for me and teaching me to code

Dr. J and my Boston team: you helped me live

Inspirada (our neighborhood): for being my home

May you each find gratitude in the connections you forge and mountains you summit. May you slow down and find the bright spots in the simple moments. And may it always be enough.

 

Rebeka Acosta lives outside Las Vegas with her husband, two heart warriors and
two Great Danes. A researcher by nature and healthcare finance coordinator by
training, she enjoys keeping up with congenital cardiac literature and always
reviews insurance claims line by line. She recently passed the national exam to
become Nevada’s first Board Certified Patient Advocate.
Before relocating to Nevada, Rebeka was a founding member of the Washington
chapter of PCHA. She now volunteers on the National Steering Committee and
enjoys attending the annual legislative conference and transparency summit. She
is especially invested in advocacy for adopted patients and patients of color.
Rebeka welcomes connections at racosta@conqueringchd.org.

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.

Over the Counter Medications

As patients with pre-existing conditions, who may be on a list of prescription medications, it’s important to know which over-the-counter (OTC) medications are safe for CHD patients  Recently at an Adult Congenital Heart Disease Conference, Justina Damiani, Inpatient Cardiology Pharmacist at Lurie Children’s, shared her recommendations for OTC meds, for those everyday illnesses or aches and pains.
*Please be sure to also consult your own doctor and pharmacist before starting or ending any medication.

General OTC Medication Tips

Always look at the active ingredient.
  –  Some brand name products may contain medications that are harmful.
  – Also, watch out for multi-ingredient preparations. Many cough/cold medications contain pseudoephedrine or phenylephrine which, are not recommended.
  – Avoid medications with a “D” at the end of the name.
Always check the appropriate dose
Always check the maximum daily dosage

 

 

OTC Cough and Cold Products

Pseudoephedrine:

Similar to phenylephrine, pseudoephedrine is also commonly used to treat nasal congestion. These products are stored behind the counter at your local pharmacy and require an ID for purchase. If pseudoephedrine is in a combination product it is usually identified as the “D,” for example Mucinex D ® or Claritin D®. The reason the we recommend to avoid use is that pseudoephedrine commonly causes increases in blood pressure, heart palpitations, increases in heart rate and potentially cardiac arrhythmias.

Phenylephrine:

Phenylephrine is commonly used to treat nasal congestion during the common cold. This can be purchased as a single ingredient product or in combination with other medications. If it is a combination product there is usually a “PE” on the label. While this is very effective in treating nasal congestion, it also can cause unsafe increases in blood pressure. Although rare, it can also worsen heart failure or induce cardiac arrhythmias.

 

Ibuprofen (Motrin)/Naproxen (Naprosyn):

Ibuprofen can be safe to use in certain people. Definitely talk to your provider if you are interested in using this for yourself, or your patient. Ibuprofen is often used for pain control and to treat fevers. This drug can be very helpful for both of those indications. The reason it can be considered unsafe is that it can hurt the kidneys. This is more of a concern in patients who already have underlying kidney issues.  This medication is commonly used in patients with cardiac disease unless you have baseline kidney issues or you were told to avoid it by your doctor.

 

 

Heart Safe Cold/Flu Products

 

Coricidin HBP (High Blood Pressure) is recommended for anyone greater than 12 years old.

 

 

 

 

 

The below chart lists the Coricidin HBP products available for  various Cold and Flu symptoms, as well as products suitable for day or nighttime.

 

 

Often, heart patients experience symptoms outside of cold and flu, such as gastrointestinal irritation. Below are some tips on OTC medications for these issues.

 

OTC GI Medications

• Abdominal bloating/gas
– Simethicone
• Constipation
– Miralax
– Senna
– Docusate
– Bisacodyl
• Nausea
– Calcium carbonate (Tums)
– Do not use Pepto-Bismol or any product with bismuth subsalicylate

 

Herbal Products

Another option to give careful consideration is the use of Herbal products. While the category name may sound safe, the product may not always be so.

• What supplements or herbal products should I avoid?
– List may change based on daily prescribed medications
– Ask your physician/advanced nurse practitioner/pharmacist before
starting any herbal products or supplements

 

Medication Optimization Tips

Get to know your pharmacist!
– Is there a local pharmacy that has “down” time or a counseling room?
– Do not be afraid to ask them questions
Use the same pharmacy to fill all your medications
– Occasionally a specialty pharmacy will need to be used
Request refills for prescriptions about 7 days in advance
Remember the new year
– Insurances often change
– Co-pays renew in January
Can you get a 3 month supply near the end of December?
– Prior authorizations may need to be renewed around this time!
Medication storage
– Keep away from direct heat or humidity
• Store OUTSIDE of bathroom
• Away from direct sunlight
– Avoid extreme cold temperatures
– Store in an easy to remember location
– Store medications away from children – locked up?
• Remembering to take your medications
– Take medications same time everyday
– Use pill boxes
– Use an APP on your phone
Medisafe – Pill & Med Reminder
CareZone – App

 

Additional Notes: Tips in case of Medication Changes by Other Providers: 

Keep an updated medication list with you at all times
Ask your pharmacist for counseling on all new medications
Ask your pharmacist to verify or double check your medications if
they look different when you pick them up
Call physician/advanced nurse practitioner for any changes in
cardiac medications by outside providers

 

Final Thoughts

Try to use single-ingredient over-the-counter products
– Ask about proper dose, including maximum dose per day allowed
Ask your pharmacist/physician/nurse practitioner about any new
herbal products
Use medication reminders for taking and reordering
Know when to call physician/nurse practitioners
Get to know your pharmacist!

 

Recommendations courtesy of : Justina Damiani, PharmD, BCPS

Justina Damiani is a clinical pharmacist at Lurie Children’s Hospital and primarily works in the cardiac intensive care unit. She received her PharmD from Purdue University. She completed two years of residency, the first at the University of Georgia followed by a pediatric pharmacy residency the University of Michigan. She enjoys running, yoga, and spending time in warm weather.

 

 

 

 

The Gift of Life – Sara Engstrom

In the spirit of Thanksgiving, we are continuing our series on gratitude. This week we hear from Sara, a CHD warrior who shares how gratitude has played a role in her life. 

At six months old, I was diagnosed with Shone’s complex, a myriad of heart defects that impacts each patient differently. My defects include a bicuspid aortic valve, parachute mitral valve, persistent left superior vena cava, and an aortic coarctation. When I was 8 months old, I had a closed heart surgery to repair the coarctation.  I am grateful for my pediatrician, who could not feel the pulses in my feet and was immediately alarmed. Without her, I do not know how long it would have been until the coarctation was discovered. Each year since my surgery, I have followed with a cardiologist who specializes in CHD in order to keep tabs on my valve function and stability. My first cardiologist made the largest impact on me in my childhood, sparking an interest in medicine at a young age. Being exposed to the hospital environment all my life, I have decided to pursue a career as a pediatric cardiologist, something that I would have never considered if it weren’t for my CHD.

I have struggled with having a heart defect from time to time and it has taken a toll on my mental health. During the dark times, I must rely on my family and friends to pull me through. I am indebted to them for all of the support that they have given me. Some have been standing by my side since my surgery over two decades ago, and others more new to my life who have been the most understanding and patient friends I could ask for. My family members have stood by me, speaking for me when I was an infant, making sure I was getting the best care I could receive. It’s definitely not something I think about every day, but my livelihood and future were in the hands of my parents, grandparents, godparents, aunts, and uncles and because of them, I am where I am today, healthy and thriving. I don’t thank them all for the loads of support that I have received over the years. When times get hard and I’m feeling lonely, I know that I can count on the wonderful people in my life to keep me grounded.

Throughout my life, I have not met many others with the same defect as me, making me feel isolated in this battle. Last year, I wrote an article talking about my CHD. A few months later, I received a message from a stranger about her struggle with Shone’s complex! This was the first time I have ever been in contact with someone with Shone’s complex. I befriended her immediately. We got to talking and I realized we have so much in common. We both love to travel, try new things, and are pursuing careers in the medical field. I am beyond thankful that she reached out to me. My relationship with her has helped me realize that it is very important to not only share your story with others but also share similar experiences and stories with people who have been through the same.

Having a congenital heart defect has given me more gifts than I can count. I am grateful for my love of medicine that aroused as a result of CHD. I am thankful for the people who have supported me and held me up through my battle, and I am grateful for the opportunities and friendships that have been given to me throughout this journey.

Sara Engstrom is a senior at Wayne State University studying biomedical physics. She plans on applying to medical school in the future to pursue her dreams of becoming a pediatric cardiologist. She lives with Shone’s Complex and is dedicated to telling her story. She loves advocating for CHD. In her free time, she likes to play the clarinet, catch up on the latest TV shows, play with her German shepherd, and spend time with her family and friends.

 

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.

Patrick William Walker White

On September 20, 2018, at our twenty week ultrasound, we found out that our beautiful baby would not only be a bouncing baby boy, but also a heart warrior. It took two days and multiple scans to finally be diagnosed with Hypoplastic Left Heart Syndrome (HLHS). Basically he would be born with half a heart.The following days and weeks were filled with heart ache and fear of the future our baby faced.
In January, we relocated to Denver to be close to Denver Children’s Hospital and the doctors that would be treating our little boy. On January 30, we were unexpectedly told we would be delivering early. Eighteen long hours later, Patrick William Walker White made his debut after an emergency cesarean section. He was rushed away to have lines put into his belly button, so they could deliver life saving drugs.
At five days old, “Walker” had his first open heart surgery to place a BT shunt. This would help his heart pump blood to both his lungs and his body. After days on a breathing machine, Walker made great progress and was able to breath on his own. Soon after, he was moved to the CPCU or step down unit. He excelled in eating, which is not usually the case with babies diagnosed with HLHS. Despite the great work in eating, Walker could not breath on room air. Many more scans were done, and it was established that Walker would need a heart catherization procedure to place a shunt into his stent. During this procedure, at less than a month old, Walker’s lung was punctured, causing it to fill with blood. Due to the complication, Walker ended up in cardiac arrest and had to have a chest tube placed. Over the following week, Walker shocked the doctors and healed amazingly! We soon got to leave the hospital, after a total of 35 days.
We enjoyed time as a family around Denver, but it soon became apparent that Walker would need another procedure to place a second stent in this shunt. During the next months and a few short hospital stays, we found out his heart function was declining. Due to the decline in hearts ability to pump blood, the doctors decided his second open heart surgery was going to be performed earlier than expected. At 3 months and 10 days old our beautiful, happy boy was taken in for his second surgery. We were told to expect a short recovery, but it ended up differently. Walker suffered more damage to his lungs while on bypass, landing him in the hospital for close to another month.
On June 8, 2018, at five months old, Walker was finally able to leave Denver and come home to Albuquerque. He has been doing very well and continues to see a cardiologist and pulmonologist regularly. This is not the end of Walker’s journey, because there is no cure for HLHS. He faces at least one more open heart surgery and most likely a heart transplant at some time in his life. For now we love on our sweet boy and cherish every moment and memory.

A Journey Shared – Joseph Burns

In the month of November we are focusing our attention on gratitude, and how despite all the hardships that life brings, there are so many beautiful things for which we have to be grateful. Today we hear from Joseph, a CHD warrior, studying to be a physician himself. 

 Throughout my life, I have been the recipient of numerous gifts which I will never be able to repay. I was born prematurely with a bicuspid aortic valve. My childhood was a series of constant doctor visits. It was during these early years as a patient that I developed an intimate relationship with my own pediatric cardiologist, Dr. Shailaja Nadkarni. Her presence in my life was the first of these gifts, as our relationship transformed from that of a patient and physician to student and educator to admirer and mentor. Her willingness to embrace my interest in congenital heart disease (CHD) undoubtedly set me on my current career path and her consistent support throughout my childhood and young adulthood was transformative in my choice to pursue medicine as a career.

In 2014 it became clear that I would need surgical intervention. The week of my operation was also the last week to accept my invitation to join the Class of 2019 at the Herbert Wertheim College of Medicine at Florida International University. It was during my surgery that I received my second profound gift—a chance at a healthier life afforded to me by the valve of an organ donor. This thankless, selfless sacrifice has granted me a new lease on my health and I am elated to be surviving and thriving post-correction. This anonymous gesture is one on which I reflect frequently, and I owe it to this donor to live my life to the fullest, not only for my own sake, but for his or hers as well.

During my recovery I spent time focusing on the compassionate pediatric cardiologist that I hope to become. My surgical scar lies across my chest as a reminder of that goal. I am proud of it. It ties me to my past as a patient, my present as a student, my future as a cardiologist, and the unspeakable bond that I will share with my patients and every child that has faced cardiovascular disease.

The third and most unexpected gift came to me in the Fall of 2017 when I applied for and was selected as the recipient of the inaugural Toti Mendez #23 Memorial Scholarship.

Toti Mendez, a sophomore pitcher with the FIU Panthers, was 20 when he died suddenly in 2000 from cardiomyopathy. FIU retired his jersey, number 23. His family established the scholarship and also dedicated “Harvey”, the school’s cardiac auscultation simulator in his honor.

Earlier this year, I had the distinct pleasure of meeting Ms. Maruchi Mendez, Toti’s mother. Though we had only a few moments together, it seems that we are inextricably bound by our experiences with heart disease and by Toti’s legacy. Her generosity and commitment to Toti’s remembrance that enables me to attend this institution and to chase my dreams to treat individuals like Toti and like me. Toti’s memory endures in my own work, including a dedication in my article “Disparities in Hypertrophic Cardiomyopathy: A Narrative Review of Current Literature” scheduled for release in 2018.

And so, for every encounter with Harvey, I am grateful. For every patient encounter in which I am prepared to recognize murmurs, I am thankful. For every child I will treat during my career, I am humbled. For every opportunity afforded to me during my time at this institution, I am privileged. Simply, if not for the contributions of the Mendez family and countless others, I am confident that my educational pursuits would be far more burdensome.

My journey is not mine. If not for the endless love and support of my family, friends, my donor, the Mendez family and every clinician who has treated and trained me, there is no doubt that I would not be in the position in which I find myself today. Now, as I begin interviewing for residency positions across the country, I realize more than ever that this has never been a plight of my own. Rather, with my story includes tomes of family support, of love and loss, of challenges and triumphs, volumes on the life of the donor who has granted me a second chance with my cardiac health and to the anonymous families who recognize a piece of their sons and daughters in me, who feel the magnetic bond of our scars, understanding that we are inextricably linked by our past, our present, and our future. I am elated to continue this journey as a physician, building relationships and transforming life for the welfare of all. However, this has never been a solo venture. My ambitions and my accomplishments, rather, are reflections of all of the generosity and support I have received while expecting nothing in return. It is this selflessness, this altruism that reminds me that I represent the hopes and dreams of countless individuals who have invested in my success. For this army of support and love I am eternally grateful and to have connected with a community of CHD warriors empowers me to continue to reach for my absolute potential in all that I undertake.

 

Joseph Burns is a member of the Class of 2019 at the Herbert Wertheim College of Medicine at Florida International University in Miami, FL. He is a native of Orlando, FL and is an alumnus of Stetson University. He is passionate about the arts and community engagement, having served as the Art Director of the Mammography Art Initiative and the Community Service Chair for the Panther Learning Communities. His interests include congenital heart disease and American Indian Health. He hopes to pursue a career in adult congenital cardiology.