Cosponsor the Congenital Heart Futures Act of 2017 (S.477/H.R.1222)

 

 

We urge Congress to cosponsor the Congenital Heart Futures Reauthorization Act (S.477/H.R.1222). To cosponsor this important legislation please contact Max Kanner (max_kanner@durbin.senate.gov) with Senator Durbin’s office or Shayne Woods (Shayne.Woods@mail.house.gov) with Congressman Bilirakis’ office.


Congenital heart disease is the most common birth defect and the leading cause of birth defect-related infant mortality. Nearly one third of children born with CHD will require life-saving medical intervention such as surgery or a heart catheterization procedure. With improved medical treatment options, survival rates are improving with a population of 2.4 million and growing. However, there is no cure. Children and adults with congenital heart disease require ongoing, costly, specialized cardiac care and face a lifelong risk of permanent disability and premature death. As a result, healthcare utilization among the congenital heart disease population is significantly higher than the general population.

As part of these ongoing public health surveillance and research efforts, the Centers for Disease Control and Prevention recently published key findings that report hospital costs for congenital heart disease exceeded $6 billion in 2013.

Congenital Heart Disease is common and costly, and attention to the needs of this community is critical.

 

Original Congenital Heart Futures Act

First passed into law in 2010, the bipartisan Congenital Heart Futures Act was groundbreaking legislation authorizing research and data collection specific to Congenital Heart Disease.  This law called for expanded infrastructure to track the epidemiology of CHD at the CDC and increased lifelong CHD research at the NIH.

Since the enactment of the Congenital Heart Futures Act, Congress has appropriated $11 million to the CDC for these activities. The Congenital Heart Futures Act also urged the NHLBI to continue its use of its multi-centered congenital heart research network, the Pediatric Heart Network (PHN) that help guide the care of children and adults with CHD. Together, these efforts have improved our understanding of CHD across the lifespan, the age-specific prevalence, and factors associated with dropping out of appropriate specialty care.

We are excited that the reauthorization of this important law will allow the CDC and NIH to build upon existing programs and focus on successful activities addressing this public health need.  First re-introduced in 2015, the CHRFA did not get passed during the 2015-2016 Congress.  It was reintroduced in February of 2017 with some changes to the language to help forward movement of the bill, but the basic intent of the legislation is the same.

 

Key Aspect of the new Reauthorization Bill

The CHFRA continues these important activities and builds on them by:

  • Assessing the current research needs and projects related to CHD across the lifespan at the NIH.The bill directs the NIH to assess its current research into CHD so that we can have a better understanding of the state of biomedical research as it relates to CHD
  • Expanding research into CHD. The bill directs the CDC to continue to build their public health research and surveillance programs. This will help us understand healthcare utilization, demographics, lead to evidence-based practices and guidelines for CHD.
  • Raising awareness of CHD through the lifespan. The bill allows for CDC to establish and implement a campaign to raise awareness of congenital heart disease. Those who have a CHD and their families need to understand their healthcare needs promote the need for pediatric, adolescent and adult individuals with CHD to seek and maintain lifelong, specialized care.

This comprehensive approach to CHD – the most prevalent birth defect – will address a necessary public health issue and lead to better quality of life and care for those with CHD.

If you have any questions about this legislation, please contact our Director of Programs, Amy Basken, at abasken@conqueringchd.org.

Together, we will CONQUER CHD!

 

American Stroke Awareness Month – Terese’s Story

For the month of May, PCHA has been focusing on American Stroke Awareness Month. In the 4th week of our series, Terese Quarino shares her experience with stroke.

 

I remember the day, like it was yesterday…. The Wednesday before Labor day weekend, I called my cardiologist to say I felt some funny beats in my heart, but no other symptoms.  He said he would send me a holtor monitor overnight to wear for 24 hours. I did exactly what he told me to do, and when I received a call from him late on a Saturday night, a holiday weekend, I knew something was up!  He told me to pick up two medications at the pharmacy that night, start taking it, and that if I have any fast heart rates, go straight to the ER.  I agreed.  If I didn’t see him in the ER, I would see him first thing Tuesday morning in his office.  He explained everything  to me on the phone, but it came out of the phone like Charlie Brown talking  (Mwa-Mwa-Mwa sound).  I hung up the phone and didn’t tell my parents anything, except that I needed to pick up the medications and be at my doctors office Tuesday morning.The rest of the weekend went fine and we went to my cardiologist office Tuesday morning.

As soon as I arrived, I had an EKG, an echo, and blood work done.  It was determined that I was in heart failure. My heart rate was at about 300 beats per minute.  I met with an electrophysiologist and my cardiologist to determine what would be the best course of treatment.  We decide cardiversion would be the best route. Since I had already eaten breakfast that morning, we would have to wait until the next day.

Wednesday morning, my doctors started with a TEE (Trans-Esophageal Echocardiogram) to see if there are any blood clots that they could see before they performed the cardioversion.  When they didn’t find anything, they moved forward with the cardioversion. After the procedure I was feeling great.  The doctors decided to keep me overnight, until my Coumadin was at a therapeutic level. One of my parents always stays with me after any procedure or surgery.  I told my parents I was fine, and they could go home. Twelve hours after my procedure I had  stroke.

My nurse was in the room, checking on me, and I could not speak. Then my arm started to bend, and it went behind and arched my back. Next, I could not feel anything in my hands or feet.  The nurse left the room, and I remember thinking to myself, “why is she leaving me?” But looking back, I realized she pushed a button before she left. Seconds later, a rush of doctors and nurses came to my rescue.   If it was not for their quick response, the lingering symptoms from my stroke may have been worse.

After my stroke, I had cognitive, physical,and speech therapy, which I’m truly thankful for. I will be honest, I struggled with it! But, step by step, I got through it! I still struggle with how my stroke impacted my everyday life. My handwriting is horrible, it’s significantly worse than before my stroke.  I also have a hard time with recall. At work, when I need to speak at a meeting, I would jot down notes to prepare. Now, if I just write it down, I may not remember what I need to say, so instead I type ord for word in the note section of my phone, so I can read it.  All these issues add up to big issues.

Having a stroke has changed my outlook on life. It has taught me to live everyday to the fullest! My experience with stroke was quite a scary time for me, and I will never forget  how it felt!

 

 

 

Terese was born with Tetralogy of Fallot in 1973, which was repaired in 1974 at Children’s Memorial Hospital in Chicago, IL. In 1992, she had her second open heart surgery, and mitral valve replacement. Terese’s other medical conditions include a lumpectomy in 1990, and multiple treated aneurysms. She also started dealing with rhythm issues, and still is to this day, which required a cardioversion in 2007. Twelve hours after her cardioversion, Terese suffered a stroke. She has also had two ablations, and had a pacemaker implanted in September 2014.  Since then, Terese’s medical history has been further complicated, in recent years, by being diagnosed with Lupus (SLE) in 2013 and Shrinking Lung Syndrome in 2015. In her free time, Terese loves spending time with her family, friends, and her puppy, Payton. She also enjoys swimming and listening to great music.  She lives each day to the fullest!

 

 

 

American Stroke Awareness Month – Molly’s Story

 For the month of May, PCHA will be focusing on American Stroke Awareness Month. In the 3rd week of our series, Alison Ogden shares the story of her daughter Molly’s stroke at age sixteen.

 

Molly awoke for school on November 5, 2012 as if it were any other Monday in her Sophomore year of High School.  But life suddenly changed that morning, as her mother, Ailson, found her collapsed and unable to speak.  Even though Alison knew the signs of stroke, she didn’t recognize them in her physically fit, distance running 16 year old. Fortunately, the first responders did. The local hospital determined Molly had suffered a massive stroke following a dissection of her carotid artery.  After a scan was performed it was confirmed that Molly had a clot in the brain.  She was transported to a larger hospital where she would spend the next month and undergo a series of procedures designed to save her life. 

She was then transferred to an inpatient rehabilitation hospital in a neighboring state where she would spend the next 2 1/2 months.  She returned home on February 12, confined to a wheelchair and still unable to say more than a few words.  She started out-patient therapy right away.  Her determination and drive, along with her positive attitude and faith, kept her focused on recovery.  She returned to school on a part-time basis in April while still spending many hours in therapy each week. 

By taking a full load of classes, working closely with the help of a para-educator and devoted school staff, she graduated with honors, on time, with her class in May of 2015!

Molly has attempted college classes, but, because of her aphasia, she found them to be extremely difficult.  She still struggles to regain communication, her right hand and foot don’t work the way she would like, but she is determined to continue therapy and still sees improvement.  Molly brings joy to every situation she is in, including the volunteer work that she loves.  She is open to talking about her situation and feels that spreading awareness of the signs and symptoms of stroke is important. While caring for Molly, Alison has been inspired by her attitude. She has learned from her daughter to look for the best in all people and to live life to the fullest each and every day.

 

 

Alison grew up in Kansas City. She and her family, which includes her husband, Brad, daughter, Molly and son, Graham, has recently moved to central Oklahoma, where they live on a cattle ranch. Alison is a recruiter for Jos A Bank and feels lucky to work from home! Her husband owns a home restore/remodel business, with which Alison also assists.

Action Alert – Remind your Senators to fund CDC Efforts

DEADLINE: Friday May 12

Act Today!

Ask your member of Congress to Sign the Durbin-Grassley FY2018 Congenital Heart Disease Appropriations Letter.

It might be hard to look beyond the health care issues at hand, but there are other important Congenital Heart Disease issues that need our attention in Washington D.C., as well!

Each year, we need to make sure that Congress continues to fund the congenital heart disease public health research and data collection at the National Center for Birth Defect and Developmental Disabilities (NCBDDD), with-in the Centers for Disease Control and Prevention (CDC). This budget process is called Appropriations.  Senators Durbin and Grassley have drafted a letter to the Appropriations Committee asking them to support funding for the CDC program to better understand and treat the lifelong needs of those living with congenital heart disease.  They are seeking as many Senator’s signatures as possible.

Email, call, or tweet your Senator or their health staff and ask them to reach out to Max Kanner (Max_Kanner@durbin.senate.gov), today!

 

Luke Toth

In October of 2008, our heart hero, Luke, was born. We were fortunate to know about Luke’s congenital heart defect (CHD)tetralogy of Fallot—at our 20 week ultrasound. At one week old, Luke had a heart procedure (BT Shunt) and spent his first 23 days of life in the hospital. This was a temporary fix until he could have a full repair. At 9 months old, Luke had his first open heart surgery to correct his heart defect. His surgery was on Wednesday and by Saturday afternoon, we were home. We could not believe how amazingly well Luke did.

For nearly 4½ years Luke strived as a “normal” child with regular visits to the cardiologist every 6-12 months. Suddenly, he was admitted to the hospital with stomach flu. Doctors determined that many of his organs had completely shut down due to severe dehydration. The medical staff immediately started re-hydrating him. Luke showed signs of improvement the next day and looked like he was on the road to recovery. The staff monitored him regularly over the next couple of days to check how well his heart was working, but they didn’t find any problems.

Then, on the third day, Luke’s good health took a turn for the worse. Just as they had done the day before, the medical staff performed some tests, but this time, his chest x-ray showed his lungs filled with fluid. When they did a special test called an echocardiogram (echo), which is an ultrasound picture of the heart, the technician, by chance, started looking at the outside of Luke’s heart first.  Usually, an echo is performed by focusing on the inner workings of the heart. But, on this particular day, when the tech happened to check the outside of Luke’s heart, the doctor saw a spot that had never been seen on any of the previous tests, including Luke’s earlier echoes after his heart repair.

This chance finding led to more tests that showed his left pulmonary artery, the blood vessel that takes blood away from the heart to the left lung, had completely closed and was not supplying his left lung with blood. The doctors were astonished, especially considering all of Luke’s heart repairs took place on his right side!

This chance finding was the missing piece to the puzzle. Suddenly, everything made sense. When the team was hydrating Luke, they were giving him enough fluid thinking that both pulmonary arteries were working and sending fluid to both lungs. In actuality, all the fluid was going to one lung instead of two.  Because the fluid in his body had nowhere to go, Luke almost lost his life.  This chance finding saved his life.

Since then, Luke’s body has been running on one lung and will continue to do so. His heart doctor says that is 100% okay.  The part that gives us the most chills was when his cardiologist told us, “I always knew Luke was a special boy, but this diagnosis happened on accident. He showed us something that we have never seen before with the heart. We didn’t know a working artery would close itself off to protect the body. Now that we know this we can look for it, and your son, without a doubt, will save many lives. ”

Since this day, Luke’s case has been in many research studies to help other heart patients. We share Luke’s journey in hopes of helping other CHD families and spreading much needed CHD awareness to help in Conquering CHD!

 

American Stroke Awareness Month – The Asher James Foundation

For the month of May, PCHA will be focusing on American Stroke Awareness Month. In the 2nd post of our series, learn about the Asher James Foundation, founded by Jen DeBouver after the loss of her son Asher.

 

In October 2012 our whole World changed. The outcome of our son’s life was about to change. On October 5th our son Asher looked like a beautiful, somewhat healthy baby boy who was recovering from his heart surgery. He had been doing well when it came to his heart related procedures. He had gone through a fetal intervention, months before being born, a cath procedure at hours old, and then his heart surgery. He had a few minor hiccups along the way, but for the most part was doing well with recovery, so we thought.

On October 6th, Asher was red and puffy. My husband questioned the doctors as to why he was so red and puffy, but they didn’t really have an answer. It was the weekend, not much was really done to get one. By Monday, we really had no answers until finally they told us he had blood clots. The clots were in both jugular veins, and both arms.

It’s funny how dates stick with you. October 8, 2012. The day my son got his death sentence. When they told me he had blood clots, that is exactly what I thought because I didn’t really know much about them. What I thought I had heard was that they were deadly. And. They. Are.  I had no idea babies could get blood clots.

We met with the Hemotologist and she started him on different blood thinners, but she explained to us that there were no medications for children, especially infants when it came to blood clots. She reached out to colleagues across the country to find a treatment plan for Asher. Adult medications was the only option. We began treatment and it seemed to be working.

And then it wasn’t. The clots would redevelop.

Sadly, on October 23rd, Asher would lose his battle with these blood clots. Asher was a fighter and SO strong. He battled these clots for over 2 weeks. He inspired me with how much he fought, so before we even left the hospital, I had decided, in my shocked, grief filled state that I wanted to start a foundation in his memory. I wanted his fight against blood clots to continue.

So a few months later, Asher James Congenital Heart Disease & Thrombosis Foundation was created. I knew I didn’t want another parent to be shocked that their child could get blood clots. I wanted them to receive information while they were in the hospital of signs and symptoms of a blood clot. We started working with groups that deliver care bags to CHD patients and supplying them with our signs and symptoms cards.

Asher James Foundation has worked with Ann and Robert H. Lurie Children’s Hospital on spreading awareness in children’s blood clots by sponsoring Children’s Blood Clot Awareness Day. We have also been to Washington D.C. to advocate on children’s blood clots.

 

Each year for Asher’s birthday we hold a softball event where we play Chicago style softball against our local PCHA IL group. It’s a fun day remembering Asher, spreading awareness, and collecting things to donate to the CHD and blood clot patients in the hospital. We usually sell stuffed giraffes and donate one with each purchase. This year we are doing a book drive to collect giraffe themed books to donate to the patients. Asher would have been going to Kindergarten this year, and I’m sure he would have loved reading books.

 

A lot of research has been done in the past 5 years and treatment in children’s blood clots has come a long way. There are better treatments and survival ratings than when Asher was in the hospital. We had the privilege to meet with researchers at the University of Iowa to learn about some of the advancements.

If you provide care bags to hospitals where children could be at risks for blood clots and would like to add our signs and symptoms cards, please reach out to us and we would love to send you some. www.asherjamesfoundation.org.

 

 

Jen is a bereaved mom of 2, Olivia and Asher and a rainbow mom to Nina. Jen and her husband JD started Asher James Congenital Heart Disease & Thrombosis Foundation after losing Asher to provide support and awareness in children’s blood clots. In the past, Jen was the bereavement coordinator for Mended Little Hearts National and Mended Little Hearts of Chicago She decided to take a break to focus on her rainbow after all. She continues to do projects such as Grief: A Mother’s Project and currently the Rainbow of Hope Project. Each year she and her husband hold a softball event for Asher’s birthday, which includes collecting something (stuffed puppy or dog or books) to donate to CHD patients at Lurie Children’s Hospital. She also works with her sister-in-law to collect blankets for Olivia’s Blankets in memory of Olivia.

Jen is very open about her losses, and feels that by being open she can help others through speaking about their own loss or help others to learn how to be sensitive to those that have gone through a loss.

An Open Letter to Jimmy Kimmel

As many of you have seen, Jimmy Kimmel made headlines this morning, after his heartfelt monologue last night on Jimmy Kimmel Live. Jimmy shared the story of how his son Billy was recently diagnosed with Tetralogy of Fallot and Pulmonary Atresia and underwent open heart surgery, shortly after birth. The Pediatric Congenital Heart Association would like to take a moment to extend a kind hand of support  and compassion to the Kimmel Family, in an open letter by Amy Basken. 


 

Dear Jimmy,

As a card carrying member for more than 12 years, I’d like to welcome you to the club that no one wants to be a part of. Congenital heart disease (CHD) is a lifelong condition, and the journey is filled with storms and rainbows. But, let me reassure you, membership includes a fierce family of people who are at all stages on this journey and are ready to walk arm and arm with you.

Like you, I channeled all of my emotions into action. And let me tell you, it has made a difference. But you – in 12 minutes, you captured my 12 years of work! More about this later.

You are still at the beginning of your journey. Take care of yourself, take care of your family. Hug, heal and connect. There is healing power in talking with someone who has walked this path before.

Learn. Membership in this club requires learning a new language. As a parent, those first few hours were like drinking through a fire hose. For weeks I would recall a new bit or piece of information, or argue that I was never told something when, indeed, I had. Finding good quality resources can be reassuring and eye opening. There are the simple things to learn – CHD is a structural defect of the heart, present at birth or 1in100 babies are born with CHD. There are the more complex things – how to spell Tetralogy of Fallot with Pulmonary Atresia, how to say it ten times fast, or even how to explain it to someone else. Or that there is no cure, it requires a lifetime of specialized care, and what exactly that means for your child. Learn as much as possible but most importantly, advocate for your son’s care.

Ask Questions. Lots and lots of questions. I found that having several trusted experts including parents and other providers helped me to bounce around thoughts, ideas, concerns and dreams in a safe space. 12 years later, I still ask questions. Lots and lots of questions.

Once you’ve gotten to a place where you can breathe, really breathe, then you can channel your energy and passion to giving back. And boy do we need you. We need you to be relentless in your pursuit of the needs you identified in your 12 minutes:

  1. Awareness – Despite being the most common birth defect, it is still relatively hidden. And as a result seriously underfunded.
  2. Research – Federal funding for research dollars is essential. At the Pediatric Congenital Heart Association we helped draft and are now working to pass legislation specifically aimed at improving federal CHD research funding at the NIH as well as public health research at the CDC.
  3. Access to Health Care – on behalf of PCHA, my son spoke at a briefing at the U.S. Capitol about his CHD and the need for coverage of his pre-existing condition.
  4. Hospital Outcomes Transparency – you wanted the best care possible for your son, and certainly received that at Children’s Hospital of Los Angeles. Fortunately, you had access to resources who could understand the data and help guide you. Most families do not. At PCHA we have been working since 2013 to help promote public reporting of congenital heart center outcomes.

Learning your child has congenital heart disease is devastating. But there is hope. And we are here to help.

I’d like to introduce you to the Pediatric Congenital Heart Association. A “one stop shop” for education, support, and advocacy, everything I’ve been talking about. They are there through all the stages, from learning to doing. I urge you to get, and more importantly, stay engaged. Join the thousands of other patients, families, care providers, doctors and surgeons who recognize the need for learning, sharing and support.

Welcome to the club. Although we are worlds apart, united in the most undesirable way, together We Are Conquering CHD.

Amy Basken,

Heart Mom
Co-Founder and Director of Programs – Pediatric Congenital Heart Association
On behalf of our national volunteers and the 2.4 million people living with CHD and their families that we represent.

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American Stroke Awareness Month – What is Stroke and Its Warning Signs

 For the month of May, PCHA will be focusing on American Stroke Awareness Month. In the 1st post of our series, Sydney Taylor, PCHA Virginia’s ACHD Board Director, shares life-saving information defining stroke and its warning signs.

 

May is American Stroke Month, and for a good reason. According to the National Stroke Association, a stroke occurs every 40 seconds and is the 5th leading cause of death in the United States. Strokes and heart attacks are often discussed together, but are actually very different. Commonly known as a “brain attack,” a stroke happens when blood flow is cut off to any area of the brain. This lack of oxygen results in death of brain cells, which can lead to all sorts of issues. The extent of the damage done largely depends on the size and type of stroke. People may experience only temporary weakness following a stroke, or they may be permanently disabled or pass away.

There are two categories of stroke, ischemic and hemorrhagic. Ischemic strokes are the most common type of stroke, accounting for approximately 87% of strokes. An ischemic stroke is caused by a blood clot cutting off blood flow to an area of the brain, and there are two subtypes of ischemic stroke – embolic and thrombotic stroke. An embolic stroke occurs if a plaque or clot travels to the brain from another part of the body and gets stuck in a blood vessel in the brain. During a thrombotic stroke, a blood clot forms in an artery in the brain. These types of stroke are most often caused by hypertension (high blood pressure) and/ or cardiac dysrhythmias, such as atrial fibrillation. A transient ischemic attack, or TIA, is a temporary loss of blood flow to a part of the brain. A narrowing in any artery that carries blood to the brain – whether it be due to a clot, plaque, or arterial defect – can cause a TIA. Forty percent of individuals who experience a TIA will have a stroke, and almost half of all strokes occur within just a few days of a TIA.

A hemorrhagic stroke occurs when a brain aneurysm or a weakened vessel in the brain leaks or bursts. Hypertension is a risk factor for an intracerebral hemorrhagic stroke, in which a vessel bursts and blood leaks into the brain tissue, causing cell death and malfunction of the affected area. Another type of hemorrhagic stroke is called a subarachnoid hemorrhagic stroke. This occurs when there is bleeding between the brain and the surrounding tissues. Taking blood thinners is a risk factor for this type of stroke, which may apply to individuals living with CHD.

Warning signs of a stroke can include any sudden numbness or weakness of the face, arms, or body (particularly on just one side of the body); dizziness; difficulty walking, seeing, speaking, or understanding; confusion; or headache with no obvious cause. If you or your child experience any of these symptoms, call 911 immediately! Here are a few good ways to assess symptoms:

  • Have the individual hold their arms out straight, palms up and eyes closed. If they are unable to keep        both arms at the same level, this may indicate a stroke.
  • If you are out ordering dinner and instead of a salad they request a shoe, this warrants immediate              intervention.
  • Ask the individual to smile. If one side of their face droops, they may be having a stroke.

Almost 2 million neurons are lost every minute that a stroke goes untreated, which contributes to the extent of damage sustained. From the onset of the stroke, providers only have three hours to administer thrombolytics (“clot-busting” medication) for successful treatment. Of course, any strange or unusual symptom should be reported immediately.

Some people with CHD may have many risk factors for stroke. It is important to speak with your healthcare provider about your risk, follow their recommendations, and continue to get appropriate care to keep your heart and brain healthy!

 

National Stroke Association. (2017). Signs and symptoms of stroke. Retrieved from http://www.stroke.org/understand-stroke/recognizing-stroke/signs-and-symptoms-stroke

 

 

Sydney Taylor is a Congenital Complete Heart Block survivor, and has received pacemaker therapy since she was 15 hours old. She is the Adult CHD Board Director for the Pediatric Congenital Heart Association of Virginia, and received her BSN from Shepherd University in May 2017. She enjoys coffee and a good book, hiking and kayaking around the beautiful Shenandoah Valley area, visiting national parks, and making friends with any and all dogs.

Donate Life Month – An Indestructable Spirit

For the month of April, PCHA has been focusing on the theme of National Donate Life Month. In the 7th and final post of our series, Melissa West shares the story of her son Peyton’s journey through a heart transplant.

 

 

We were told at 35 weeks pregnant that Peyton would have a heart with only the right side functioning and that this was called Hypoplastic Left Heart Syndrome. There are many variations in the degree of severity. Peyton’s was a 9 out of 10 on the scale of how severe his was. We were given the option to take him home and do nothing, or begin a series of 3 open heart surgeries to get the right side doing all the work as efficiently as possible. The surgeries would need to occur between birth and 5 years old, followed by many follow up procedures, as well as a lifetime of medications. We chose the surgeries.

Peyton struggled through all three and had to have 2 other major surgeries along the way. His first open heart was at 1 day old and the other at about 5 months. The third was right before his 5th birthday. He almost did not make it, and, as a result, sustained brain damage, another life sentence. But our, at the time, now 5 yr old, struggled through, and, heroically, did this every day to relearn every skill from eating, speaking, crawling, toileting and walking all over again. Imagine waking up right before your 5th birthday and having no idea why you can no longer move your body or communicate with your family, but remember what life was like when you could. Peyton is smiles and odd jokes 98% of his life and rarely complains about how he feels.

This past December 29th at age 13, we went in for Peyton’s regular 6 month cardiology appointment, and he thought he was feeling fine. But the doctors told us the right side of his heart, the only side that was functioning, was failing. And we would soon find out that it was failing fast.

By February 3rd, we were admitted until a matching heart was available for transplant. We were told on March 4th Peyton was teetering on the edge and they were running out of options. This was a true reality that he may not make it to transplant… Somehow, by the grace of God, on March 8th, when someone else lost a loved one, we were granted the amazing gift of another chance at life for Peyton. On March 10th Peyton’s surgery was completed, and he has been doing unexpectedly well. But he has a long road ahead. We were ready to leave just two weeks after the transplant, just staying the weekend for one more lab number to increase, when we experienced the first hoop.

Peyton developed a cough, and by Monday night was rushed back to the CICU. He had fluid building up, and though tests showed very low rejection, he visibly was not well. Slowly he started to recoup. After two more rough weeks, we finally got to head to the hotel. We have now been here for two weeks and are learning the new normal of wearing a mask whenever we leave and taking extra germ and hand washing precautions. We have lots of weekly outpatient appointments to check on his heart and therapy to rebuild his strength and skills that were lost during his time of being so sick in the hospital.

He has traded one heart condition for another and a lifetime of medications and autoimmune issues. We know that the first six months is an up and down battle, and the first year even can have a lot of roadblocks. But the alternative would have been much worse, so we are all in. He takes over 40 pills each day to fight rejection and keep his heart and body in working order. He struggled at first, getting nauseated by them, but now he just takes them like a champ and moves on with his day.

This boy is amazing, and most days has had a huge smile and loves to joke.  He spends his time loving food right now, because of the steroids he takes, playing video games, and exploring the city in our 9 mile radius of Children’s Hospital, where we must stay for about three months. Thank goodness that radius includes a zoo that he enjoys tremendously.

Peyton knows he has been given multiple chances at life and is so appreciative and determined to make sure that the most recent gift of a whole heart is utilized to the fullest. The small town we live in has been tremendously supportive and helpful in making sure that all of our needs are met while we work to get Peyton in the best shape possible. We have been truly blessed by the outpouring of love and support, as well as a tremendously generous gift of life from the Donor’s family. Without their ability to be so generous during a heart wrenching moment in their life, Peyton wouldn’t be here today, and for that, we are truly grateful.

 

 

Melissa West is a married mother of three boys – 8,13 and 16. She has a background in office management and a degree in education. She most recently worked as a Reading Tutor in a middle school setting.  During different seasons of life , Melissa has been a stay at home mom, when necessary, as all three of her boys have had major medical issues. She takes her role as a dedicated mother very seriously, but Melissa also enjoys working to be a positive and encouraging example to others going through diffiicult times. She enjoys helping others find their own personal joy, regardless of the current situation. Melissa’s children have taught her that no matter what you are going through today, someone else always has it worse, and she believes everything we experience in our lives can help us grow stronger for whatever comes our way.

Donatel Life Month – A Tribute to Triston

For the month of April, PCHA has been focusing on the theme of National Donate Life Month. In the 6th post of our series, Charity Robert shares a tribute to the boy whose heart saved her nephew Jacob’s life.

 

October 21, 2015 is a date to remember for 2 very special families.  This date marks an event that would forever change the lives of many, yet also forever combine two families that live very far apart.  It’s a date that was not planned, not foreseen, nor marked on anyone’s calendar.  This particular date was meant to be, yet unknown to anyone.  You see, when someone is waiting for their future to open up, sometimes another person has closed it forever.  We don’t know when or how or who’s future will end, but we do know that when someone is on the organ transplant wait list, this is the inevitable outcome we have to hope for.  October 21, 2015 Jacob Kilby got the call.  Jacob received the news he and his family had been waiting for, there was a perfect match…..a match that Jacob desperately needed in order to glimpse a future for himself.  A donor heart was going to be transplanted this night so that Jacob could walk into his future.

 

Triston “Shorty” Taylor Green was born on November 16, 1995 in the state of Alaska.  Triston is known for having a “wild” side growing up, yet had a loving and caring side that won over hundreds of friends.  Triston decided to attend college at the University of Nevada where he lived his life to the fullest each and every day.  Many friends would call him by “T.Dog” or “Shorty”, as he was musically inclined, while others knew him by “907SquadGod” on social media for being a unique, individual music writer, rapper, and beat mixer.  Some of the memories I’ve heard contain the “fearless” ways he enjoyed his life, such as motorcycle riding while being chased by police, a move that won the heart of his beautiful girlfriend.  Triston had the handsome looks, the genuine love of people, and that bit of bad boy personality that many people find attractive!  I’ve heard that he listened to friends and encouraged everyone to be the best version of themselves, often quoting “Nobody can tell you how to be yourself, you are the best you.  Appreciate being an individual and do you!”  Triston called himself “The Man” often and on October 21, 2015 he became just that for Jacob.  Just 3 days prior, Triston Taylor Green passed away from an accidental gunshot wound.  Triston had previously made the decision to become an organ donor,  a choice that was made of his own doing, and one that has proven heroic.  Yes, Triston Green, you are definitely “The Man” in the eyes of Jacob Kilby and his family.

The event that took place on October 21, 2015 may not resonate with the everyday individual.  Organ Donation and all that it entails may not necessarily seem important or relatable at this time in everyone’s life.  It’s very difficult to talk about losing a loved one or to even think about the unimaginable trauma one might endure in a traumatic loss such as the life of Triston.  Believe me, the need for a life saving organ transplant is bittersweet when you have to hope for someone’s loss so that you may gain another year with your nephew, as I have had to do for Jacob.  Please know that if Triston had not thought about life after death, my nephew may not be here today.  I can only think that without the loving family and friends that created this unique young man, organ donation may not of been agreed upon by Triston.  On October 21, just 2 years ago 2 young men, smart beyond their years were joined together with one healthy heart.  My nephew has a future today and Triston will be loved, remembered, and treasured to infinity and beyond!

 

 

 

Charity Roberts is the youngest sister of Jacob Kilby’s mother, Mellissa Johnson. Charity became an active advocate and supporter of CHD and organ donation awareness when Jacob was awaiting his second heart transplant in 2015.