Cardiac Devices – Terri’s Story

Often times, CHD patients face issues with the rhythm of their hearts. In some patients, this can mean additional treatment is necessary, with either medication or a cardiac device. In this week’s post, Terri Elliott, an adult CHD patient, shares her experience with an arrhythmia that led to her receiving an implantable cardioverter defibrillator. or ICD. 

 

My name is Terri.  I am 61 years old, a wife, mother (of 1 daughter), grandma of 5, and a Licensed Veterinary Technician.  I was also the 1992 Hunter Jumper Champion in my state!! (…my cardiologist was not happy about my jumping fences on a horse, of course, until I WON!! LOL!)  I live an active/fulfilled life, despite living with CHD, arrhythmias, and a lovely ICD which I have named affectionately “my friend”.  My original defibrillator was named “Sparky”, it was replaced with a larger one and we are trying to bond!! I was diagnosed as a child with a VSD, Pulmonary Stenosis, LTGA, and a “blue baby” which I had surgery in 1960 (yes, with ether!)!  I have been told that I am one of the oldest complex congenital heart patients in Michigan). My childhood was difficult with much bullying to endure.  Funny (but sad story), the kids in my school teased me so unmercifully, that I told them that I would “give them my bad heart if they didn’t stop”!  Well, you can see how that would turn out (and did), so I did not have any friends, as they were then afraid of me.  As you can see, having CHD was not an easy feat, as a child.  More of this at another time.

Living with arrhythmias can be challenging.  Mine have caused me several trips to the hospital.  They feel as if my heart is racing like the “Top Thrill Dragster” at Cedar Point, OR  it skips beats like a “cell phone with bad reception”.  Either way, intense! Medication helps to control them, and if I don’t “listen” to them, (which I can usually hear or feel 80 percent of), I barely know they are there. That seems to be a learned trait.  There are times, however, that arrhythmias can make me feel like I will “pass out”.  Those are the difficult ones to deal with.

As for my defibrillator, well that is a totally different situation.  My defibrillator was placed after I had sudden cardiac arrest (due to v-fib) in 2009.  I was on life support, and when I woke wondering what happened, I was told that I needed one for “insurance”.  At that time, I had heart surgery to put in a shunt and implant the device.   Having a defibrillator is challenging, but also frightening at times. With my first defibrillator (“Sparky”), it was placed in my abdomen.  I did a lot of exercising and fractured wiring a lot!!  Funny story – My first fracture – I thought was my brand new smart phone!!  I remember wondering why I got the stupid smartphone in the first place, since it chimed relentlessly, and I could not figure out what was wrong!  The problem was that it was not my smartphone at all!!  It was ME!!  I had fractured wiring.  Surgery is always needed when something like that goes wrong.  But in “my friends” defense, it is always there to protect me.  It can deliver many joules of electricity to my heart if needed to save my life.  I have had 3 defibrillators, so far, and my current one is an advanced version of a sub-cutaneous unit.  I am one of the lucky ones in that none of them needed to “fire”.  Patients like me live in fear, have challenges, pain, can be limited, and sometimes breathless.  But, I for one, am positive, strong, determined, full of love, am caring, and even defiant!!

Don’t be afraid of your defibrillators!  They are there to help and possibly, keep you alive!!  That’s a lot of power in one little box!!  I have a lot to say after this many years living a life of CHD!  That, my friends, would need a bit more time and space to cover!  Another time and place!  Happy if this helps even one person!

 

Terri Elliott is a Licensed Veterinary Technician of 28 years who lives in Oxford, MI with her husband, Mike and their 2 dogs, “Madison” and “Charlie”. She holds an Associates degree in Veterinary Technology and is currently earning her B.S. in Business Health at U of M. She enjoys travelling and summer activities, especially golfing, horseback riding and swimming. Mostly, she enjoys spending time with her 5 grandchildren, daughter and son-in- law. She is a volunteer chairwoman at the Michigan Congenital Heart Walk and enjoys speaking at hospital heart events. She has just been accepted and trained as an ACHA Heart to Heart Ambassador.

Recap – Patient Engagement Tools

Take a look back at our Patient Engagement Tool posts.

 

The Care Partnership Pyramid

It is often difficult for parents and loved ones to know what to do in caring for their child during hospital stays, and it can often be a difficult topic to discuss. Christine Martinenza, RN, has implemented this month’s Patient Engagement Tool, The Care Partnership Pyramid, at Nemours/Alfred I. duPont Hospital for Children, which aims to help foster conversation and understanding in how to best allow for parents and medical staff to work as a team.

 

Transition Top 10 to Remember

As the seasons change, new milestones come and go.  This can be an especially trying time in the life of an adolescent with congenital heart disease, especially as they are undergoing the major transition of leaving the nest and going off to college, joining the workforce, or just moving far from home.  Dr. Aaron Kay, Director of the Adult Congenital Heart Disease Program at Indiana University Health, has the following Top Ten list to help ease the transition.

 

 

Comprehensive Single Ventricle Road Map

When a family learns their child will be born with a Single Ventricle CHD, they are thrust into a world of uncertainty. It is sure to be a daunting and overwhelming experience. The plan for care of these patients has not typically been clear. As outcomes have improved, providers have been able to imrove their plans of action. In PCHA’s first Patient Engagement Tools Series post, Michelle Steltzer, Nurse Practitioner from Lurie Children’s Chicago, shares their Single Ventricle Roadmap.

 

Cardiac Devices – Jarvik: For Smaller Hearts

PCHA’s next series introduces the various Cardiac Devices involved in the treatment of Congenital Heart Disease and the associated conditions. In the first post, Dr. Adachi tells us about the Jarvik for small hearts, a ventricular assist device used to help pump blood through the body. 

 

At our institution, we are working to create a smaller, implantable ventricular assist device
(VAD), specifically designed for small children. This device is called the Infant Jarvik VAD, named
for Dr. Robert Jarvik, the inventor of the first successful total artificial heart.

Why do we need this device?

In the world of pediatrics, most VADs are pulsatile, which means they pump like the heart.
However, these sometimes fail. This is why most adult VADs are now continuous flow pumps,
meaning they help push blood through the body using an impeller. Currently, there are no
pediatric continuous flow devices available for our smallest patients. We are hoping to change
that with a small, AA-battery- sized device.

It is more challenging to make a smaller pump with a favorable performance. After failing to get
FDA approval two years ago, Jarvik made significant design changes, and I came on board to test
the redesigned device in animals as a preclinical trial. The data we collected was much more
favorable than the previous testing, resulting in approval for a clinical trial by the FDA. The
Pumps for Kids, Infants and Neonates (PumpKIN) trial has just begun with seven major pediatric
heart centers in North America, including Texas Children’s Hospital, ranked #1 nationally in
pediatric cardiology and heart surgery by U.S. News & World Report.

Currently, hospitals across the country have limited options on the types of patients they can
support. For example, at Texas Children’s, we implant about 20 to 30 VADs each year. In many
of these cases, we have to use an adult device in a child, which inevitable causes patient-device
size mismatch. If the Jarvik infant pump becomes available, that may change device support
paradigms, leading to more potential candidates who can benefit from this implant at hospitals
nationwide.

 

 

Dr. Adachi has written extensively regarding surgical, morphological, and physiological aspects of congenitally malformed hearts. His clinical and research interests also include pediatric heart failure and mechanical circulatory support including ventricular assist device and total artificial heart. He is also studying cardiac cellular and sub cellular differentiation prior to and following application of mechanical assistance. He also has an interest in pediatric lung transplantation. For better preservation of donor lungs, he seeks to develop a pediatric-specific lung preservation device for deployment in the lung transplant program at Texas Children’s, which is the largest in the world.

Patient Engagement Tool – The Care Partnership Pyramid

It is often difficult for parents and loved ones to know what to do in caring for their child during hospital stays, and it can often be a difficult topic to discuss. Christine Martinenza, RN, and Janie Klug, MSN, have implemented this month’s Patient Engagement Tool, The Care Partnership Pyramid, at Nemours/Alfred I. duPont Hospital for Children, which aims to help foster conversation and understanding in how to best allow for parents and medical staff to work as a team.

 

Many infants born with congenital heart disease (CHD) are transferred to the Cardiac Intensive Care Unit (CICU) immediately after birth or diagnosis for stabilization. As the mothers are still recovering from the delivery, many babies will undergo their first of many surgeries. Following surgery, these newborns are at risk for life threatening complications, require minimal stimulation, and around the clock medical care. It is very common for the medical team to ask families to remain hands off during this critical stage. The period of time spent in this phase of care is variable and for some can be several days to weeks. As the baby heals, the medical team is able to lessen sedation, remove lines and tubes, and gradually increase the amount of stimulation. This process of de-intensifying support can be lengthy and sometimes unpredictable leading many families to describe it as a roller coaster of emotions. Continue reading

Be #CHDWise and be a part of our Give a HOOT about CHD Campaign!

Here are a few key ways to join the movement:


Hello Echo!

We enlisted your help to name our cute, cuddly, and wise owl and boy did you deliver! With over 70% of the votes – we officially have a winner! With your overwhelming support, the name of the official mascot of The Pediatric Congenital Heart Association is hereby named Echo and we love him – Thank you for your participation!

 

 

 


Purchase an Owl

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. We will also be adding these owls to our existing care package program through our state chapters so they will included in select kits we provide to patients and families impacted by CHD.

Comfort a loved one, spread awareness, or simply show that you “Give a Hoot About CHD!” Echo can fly right to your doorstep by purchasing him from our online store or directly from the voting page!

 

Color with Echo

Break out the crayons, markers, colored pencils, or paint! Add color to the page and bring Echo to life! Now available, a printable coloring page to print out for the whole family to color as they wish.

Click the image or click here to Color with Echo!

Want to submit your finished masterpieces to be featured on our Instagram? Great! Just upload a picture of your finished coloring page and email to Echo at Echo@conqueringchd.org


Success!

 

Our Give a HOOT booster campaign has ended but because of your amazing support we were able to sell 159 shirts to raise $1810 to directly impact the lives of CHD patients and families through our programs like public reporting, the guided questions tool, care packages, and the legislative conference. Shirts will be delivered 2-3 weeks AFTER the campaign closed on 11-15-17

CLICK HERE to check out the shirts and view the supporters

 


Use your Social Media talents as we work to reach new families!

It’s your month to shine and show your friends and family what it means to be #CHDWise!

This year has been a great year and our social media following has grown exponentially, allowing us to reach more families than ever before. We’re currently at 16,000 likes on our facebook page and we would love to be sitting at at least 16,500 followers by the end of the year! The more patients and families our message can reach, the greater the impact that we can have.

Join the Social Media Storm

During the month of November, you helped us cover social media with CHD facts and faces. Like, share, comment and tag using the hashtag #CHDWise.

KEEP IT GOING!

In the know – Help others understand the impact of CHD and what the Pediatric Congenital Heart Association is doing about it by sharing our memes.

Make it personal – Using the hashtag #CHDWise, share stories and photos about about how you and your family are #ConqueringCHD. This is all about sharing how Congenital Heart Disease impacts patients and families and how we, together, can educate everyone to be #CHDWise. Don’t forget to tag us on Facebook, Twitter, or Instagram!

Invite others – we can do the work for you – simply guide them to our media pages.  Ask them to like or follow us.  We’ll make sure they STAY engaged!  Click on an icon to find us:

Facebook twitter-button iglogocolor

Encourage your Members of Congress to be #CHDWise

Tell your representatives why they should give a hoot about CHD!  Ask them to join you in #ConqueringCHD by becoming cosponsor of the Congenital Heart Futures Reauthorization Act (CHFRA).  Click here to learn more and see if your lawmaker has already signed-on.  If they have, be sure to thank them for #ConqueringCHD!!


Check out what’s happening in your neck of the woods

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 connected to a chapter near you.

 

 


A Great #CHDWise #GivingTuesday

 

#GivingTuesday is a day that the world recognizes the importance of giving back.

This global day of giving follows Black Friday and Cyber Monday and encourages communities to contribute to their favorite nonprofits and help kick off the giving season!

It’s a great way for us to reach new audiences who may not be familiar with our mission. Our goal was to raise $6000 so we can give 1000 Echo Owls to patients and families who have been hospitalized due to Congenital Heart Disease and WE DID IT! And it’s all because of YOU! Between the generous #GivingTuesday donations and the recent “Buy One. Give One.” Owl purchases we have reached our goal of funding 1000 owls to give to patients with CHD – IN JUST ONE DAY!

There’s still time to help us send even more owls – your donation matters. Your Buy One. Give One. matters.

Donate here: https://app.mobilecause.com/form/D_3qgg?

Owls available for purchase here: https://pediatric-congenital-heart-association.myshopify.com/products/owl


Finally, Celebrate how #CHDWise you are and all we are doing, together, to Conquer CHD! Don’t forget to use the hashtag #CHDWise when you share your stories and pictures