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.

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.

Find us on Social Media:

Facebook twitter-button instagram-icon

 

 

 

 

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.

Donate Life Month – An Extraordinary Miracle of Science

For the month of April, PCHA has been focusing on the theme of National Donate Life Month. In the 5th post of our series, Dr. William T. Mahle shares a physician’s perspective on the miracle of organ donation.

Some children, including those with congenital heart disease, can develop progressive weakness of the heart.  This results in heart failure.  Heart failure is usually evident by the inability of the heart to meet the body’s demands.  For children, this might be seen in difficulty keeping up with their peers or in its more severe form, difficulties with breathing or feeding.  A number of medicines may help in these conditions.  However, in some cases, the heart failure is so severe that a heart transplant will need to be considered.

 

A heart transplant is an extraordinary miracle of science.  This measure is only undertaken when there are no other good options.  This is because there is only a limited number of hearts available for children.  Moreover, immunosuppression medication, which helps turn down the natural immune system, has some limitations.  With regular use of immunosuppression, rejection of the heart can be avoided.  However, these medicines can increase infections and lead to other complications such as diabetes and cancer.  Therefore, while heart transplant provides a lifesaving option for some families, and has continued to improve since its first introduction in 1967, it should truly only be considered when surgical and medical therapies are exhausted.

 

In evaluating a child for a heart transplant, the transplant team first and foremost asks if it is the best option for the child.  In addition, there are some other medical conditions that may prevent the safe use of a heart transplant.  These might include severe damage to other organs such as the kidney or liver.  Therefore, a complete heart transplant evaluation is done on every child who is being considered for this procedure.  Over the course of one or more days the family meets with a number of specialists including social workers and heart transplant coordinators to make sure they fully understand the transplant process and that it is their desire to proceed with transplant listing.  If the medical team and the family both agree to a heart transplant listing, the child is placed on a national wait list.

Children are prioritized in the order of how great their risk might be of deterioration before a heart becomes available.  In the U.S. there are 3 listing stages:  levels 1A, 1B, and 2.   Fortunately, with many advances in medicine and surgery, the great majority of children listed for heart transplant are able to survive and receive a heart transplant and do well afterwards.

 

We have always stressed to the family how important it is to acknowledge the sacrifice that the donor family has made.  Typically in the setting of some unexpected tragedy, the family of a child or young adult must decide whether to donate organs.  In that decision they have placed a hope that something good might somehow come out of a tragedy.  This miracle is never lost on the heart transplant recipient or their family.  They understand the enormity of this life saving procedure.  Care of a transplanted heart requires strict adherence to a daily medication regimen and medical follow-up.  Fortunately, with continued advancements in science, this has allowed many children to graduate from high school and college and go on to find work and pursue other dreams of adulthood.  While the barriers to successful long-term survival after a heart transplant still exist, there are many efforts to improve the outcome for these patients.  Solid organ transplant is among the greatest advances of modern medicine and organ donation month gives us an opportunity to reflect on the sacrifices that are necessary to make this possible.

 

Dr. William T. Mahle is a pediatric cardiologist currently serving as Medical Director, Heart Transplant Program and Medical Director, Clinical Research at Children’s Healthcare of Atlanta and Marcus Professor of Pediatrics at Emory University School of Medicine in Atlanta, Georgia. Dr. Mahle is committed to research in the field of pediatric cardiology and congenital heart disease. His academic interests have focused on perioperative care with a particular interest in neurodevelopmental outcomes. He serves on several national committees including National Heart Lung and Blood Institute (NHLBI), Pediatric Heart Network (PHN), American Heart Association’s Cardiovascular Disease in the Young (CVDY), and United Network Organ Sharing (UNOS). Dr. Mahle is a member of the Pediatric Congenital Heart Association’s Medical Advisory Board.

Donate Life Month – Choosing to give the Ultimate Gift

 

For the month of April, PCHA has been focusing on the theme of National Donate Life Month. In the fourth post of our series, Emily Inman shares the story of the day her family decided to give the gift of life, after her mother’s unexpected passing.

 

 

My mom had just gone back to work after taking off another long stint under the Family Medical Leave Act. She worked the 3pm – 11pm shift as a secretary at a trucking company. This meant I was back spending my evenings and parts of my nights at my grandparents. I didn’t mind. Grandma spoiled me. But I was used to having my mom around since she took off so much time under the FMLA. I was waiting for a bone marrow transplant. I didn’t have a match because I’m an only child, and, as luck would have it, no one in family was closer than a half match. I had just undergone several rounds of chemotherapy, steroid treatments, and an experimental stem cell transplant. I was still in reverse isolation and unable to attend school and activities.

I admit, it was a little scary not having her there even though I was at Grandma’s. She would call me during her lunch break to check on me and what not. On this particular day, the phone didn’t ring. Fifteen minutes into her lunch break it still didn’t ring. I knew something was wrong. I asked my Grandma if I could use the phone to call her. She said no. I defiantly used Grandma’s bedroom phone to call her office. One of the office ladies made up some story about how she couldn’t find her. Now I definitely knew something was wrong. About 5 minutes later the phone rang. Grandma picked it up. I deviously picked up the phone in Grandma’s bedroom to listen in on the conversation. I couldn’t believe my ears: “Mrs. Vasquez, we found Patty passed out at her desk. She was rushed to the hospital. You need to get there as soon as possible.”

The next couple hours were a complete blur. I don’t know if they were a blur from all the commotion, from my young brain trying to block it out, or from all the cancer drugs I was on. The next thing I remember is walking off of the elevator and down the hall to the ICU at the hospital. My dad, who was an over-the-road truck driver at that same company, was sitting there still wearing his Carhartt and covered in dirt and oil, with his hands over his face. I had never seen him cry before. And there he was. Beet red and crying like a baby. The nurse came in and explained to me that she had a brain aneurysm. She was basically brain-dead by the time she got to the hospital. We walked over to her room. I peered in the glass and she was laying there lifeless. Tubes, wires, and equipment were everywhere. If I close my eyes, I can still see her laying there with the breathing tube in her mouth. I said goodbye to her. And I thanked her for being the best mom I could ever ask for.

Grandma took me home, gave me all of those cancer drugs no child should ever have to take, and put me to bed. Behind the scenes, the pediatric cancer doctors we were working with at the University of Wisconsin-Milwaukee flew down by helicopter and harvested her stem cells in case I never found a bone marrow match or the experimental stem cell transplants didn’t work. The doctors then pulled the plug. Patricia A. Inman passed away March 1, 2001.

My mom helped to organize multiple blood and bone drives not only in hopes of finding a bone marrow match for me, but for finding matches for all others out their searching for their continued gift of life. We learned that what made it so hard to find me a bone marrow match was that I am of fifty percent Hispanic/Latino origin. My mom made it her mission to spread awareness about minority blood, bone marrow, and tissue donation, and to register as many people as she could to donate.

She then became an organ donor and her heart, both eyes, both kidneys, both lungs, liver, and pancreas were all donated. They went to recipients ranging in ages from 7 to 73. The mom of the 7-year-old boy who received one of her kidneys sent us an update on his condition right after his transplant. I was elated to read it. He was doing well and his prognosis looked positive. He liked to play baseball and couldn’t wait to be back out on the field. She asked if I would mind sharing something about my mom. The 73-year-old woman who received her heart also reached out and asked if I would mind sharing something about my mom. I shared that she is dancing in heaven knowing her organs went to so many people. She devoted her life to giving back, and now her afterlife is devoted to giving back as well.

 

 

 Emily Inman is originally from the Chicagoland area, and is an only child from a large Latino family. She was diagnosed with a very rare form of bone marrow cancer, called aplastic anemia, when she was 10-years-old. Emily needed a bone marrow transplant, but never found a match. She received several experimental stem cell transplants that ultimately saved her life. Emily’s mom, Patricia, passed away from a brain aneurysm while Emily was still undergoing treatment. She grew older, entered remission, and eventually went back to living a “normal life.” Emily received a B.A. in Journalism & Mass Communication and Global Health Studies from the University of Iowa. She stayed at U of IA and got her Masters of Public Health in Community & Behavioral Health, as well as Health Communication with a concentration in Cultural Compentency. Emily is now serving her second term with the Illinois Department of Public Health AmeriCorps. She serves as the food access for an organization that conducts homelessness prevention and intervention in the South Suburbs of Chicago.

Donate Life Month – The Call

 

For the month of April, PCHA will be focusing on the theme of National Donate Life Month. In the third post of our series, Kathleen Sheffer, a heart and lung transplant recipient, shares her memory of the harrowing moments that came after the fateful call.

 

I didn’t stress about packing absolutely everything I needed because I believed it would be a dry run. Calls for transplants are never actually rehearsals, but they’re referred to as dry runs when, for whatever reason, the organs are determined unviable. Most transplant patients I knew had had at least one—one friend even entered the Operating Room (OR) before the surgeon called it off. I figured it was a rite of passage: I would go through the motions today, but I still had a long time to wait. Just 28 days on the list of transplant candidates and they had a match for me? Impossible!

 

I had imagined this phone call several times a day for the last month. After one too many heart-stopping calls from numbers with my center’s area code, I called my nurse coordinator to ask what sort of an introduction I could expect. She patiently talked me through the questions the caller would ask me and said they would make it clear immediately that this was not your standard appointment-scheduling phone call.

The phone rang at 7:50am and as soon as the first words were out of his mouth, I knew the man on the phone was calling to offer me organs. He rushed through the script, stumbling over some parts. I eagerly confirmed I did not have any cold symptoms and had not eaten since the night before. I informed him that I was a two-hour drive away from the hospital and he promised to have a bed ready for me at 10am. It went exactly the way my nurse coordinator had described it.

 

My heart was racing too fast for me to think clearly about what I wanted to bring. I shoved a few books and art supplies in a bag, grateful to my parents for handling the backup of medical supplies, so I could focus on the important things, like updating Facebook and locating the henna ink. My dad returned from work and my younger sister, Monica, was woken upstairs. Our house was filled with hurried footsteps and phone conversations. Excitement, fear, and confusion reigned. I stood trembling in my newly converted downstairs bedroom. Taking the stairs was out of the question so I dictated clothing requests to Monica, in a routine we’d cemented into the foundation of our relationship. After 21 years together as Monica, Kathleen, and Chronic Illness, it became her implied responsibility to get up and walk across the room to retrieve the scissors I wanted from the shelf two feet away from me. Three weeks later I headed up a different set of stairs to retrieve her shoes and wallet in an attempt to restructure our roles around my new health status.

By 8:40 we were in the car—breathless and jittery, each convinced we’d forgotten the most important item on the packing list we never finished making. The drive to Stanford was less than two hours, but it felt like traffic moved slower than ever specifically to heighten my unresolved panic. I was excited, impatient, and afraid. My heart had not stopped pounding since the phone rang. Normally my heart rate hung between 60-80 Beats Per Minute, but on July 30th it was consistently between 100-130 BPM. Once admitted, I leaned back in the bed that would transport me to the OR ten hours later, closed my eyes, breathed steadily, and relaxed. Still the screen read 122 BPM. My heart could not ignore the adrenaline pulsing through me, however much I tried to trick myself into staying calm. Somehow my birth heart knew this was our last hurrah together and was giving me every bit of strength it had left.

 

The level of respect I have for the organs that kept me alive for 23 years contributed to the grief I experienced in the aftermath of my surgery. Don’t get me wrong—I have railed against my tangled heart and poor excuses for lungs enough times to exhaust my most understanding confidantes. It appeared to me that the entire world had great lungs they took for granted and that it was my fate to watch them squander them, often at my expense. I noticed other students smoking more frequently on my college campus when temperatures dropped. Cold air irritated my tight airways, making it harder to breathe and often triggering asthma. I would shed hot, angry tears as I gulped frigid smoke on my way to class, huffing and puffing up the unrelenting Berkeley hills. No matter how hard I tried to find some divine purpose for my illness, it was impossible for me to reconcile the injustice. My bitterness made me feel alone among 35,000 students—and all the more bonded to my deteriorating insides.

 

I waited in room B201 for ten hours. More and more friends arrived throughout the day: it was a festive occasion. We played card games, listened to music, drew henna tattoos on each other, and laughed a lot. The anticipation electrified us all. Amidst all the excitement, my donor was constantly on my mind. I knew that the hours I spent waiting were some of the worst hours in the lives of my donor’s loved ones. I smiled and celebrated new hope gifted to me by a stranger whose friends and family were simultaneously learning of a loss that brought grief into their lives forever.

 

Every breath I take for the rest of my life is only possible because my donor and their family chose selflessness in intense suffering. Though I may never know them, we navigate the same waters. My ship has been rocked by grief more times in my 23 years than in some lifetimes. I know how a rediscovered handwriting sample can take your breath away and how a number on the calendar can spoil an entire week. I know that the pain can be just as strong five years after the initial loss. My hope is that someday I can share some fragment of the joy their gift brought me with the wave-beaten voyagers my donor left behind.

 

Soliciting friends to witness my advance directive, I forwarded my mom the informal list of final wishes I wrote in a bleak period in college. It includes important things like what kinds of trees to plant in my honor, instructions for how long to keep my Facebook profile active, and various demands for the party that will be thrown in lieu of a funeral. Waiting outside the doors to the OR with just my parents, I apologized for some of the more outdated references. In the two years since I started planning for end-of-life, much like my peers do their wedding days, my prized possessions have changed and friendships have evolved, along with my social media passwords. During what could have been our final moments together, my mom and I talked animatedly about where to direct donations in the event of my death. Organizing like this is one of our practiced coping mechanisms: our theory is that once we do everything that needs doing, we can return to a state of denial and escape our worries. I’m not going to pretend it’s incredibly healthy, but it works for us.

 

 

My experience in the OR was surreal: I waited hours, watching as nurses, their backs turned to me, carefully arranged metallic-sounding instruments. Behind me, my gentle anesthesiologist tended to his assigned tasks, initiating conversations from time to time. He let me choose the Pandora station: after a few seconds of intense deliberation I settled on Blind Pilot and was pleased that the only complaints coming from our small group were about his lack of a paid subscription and not my selection. The idea that this might be the last playlist I listened to added a whole new level of pressure to a decision I normally leave to more musically literate friends.

 

I asked for a pen and paper because drawing had lowered my heart rate while I waited upstairs. I sketched the scene before me, channeling my focus into the pen and away from the useless worries welling up around me. Seeking images of strength and wisdom, guardian angels appeared in my agnostic mind, like deceased wizards from a connection of simultaneously cast spells. My silly grin went unnoticed as I convened with my wise, witty, and spirited angels: I needed Michelle’s charming practicality, Amelia’s stubborn assuredness, and Sarah’s fiery perseverance. I could feel their presence and hear their voices. My only concern as the team started the infusion to put me to sleep was for those who waited outside the room. I knew I would have no memory of the hours that would pass slowly for my family and friends. I felt lucky to be the patient and have nothing left to do—just lie there and trust my body not to give up. My body has an impressive record of defying odds without my awareness, so I embraced unconsciousness with confidence.

 

If you would like to sign up to be an organ and tissue donor, pleae visit https://www.donatelife.net/ 

 

 

 

Kathleen Sheffer received a heart-lung transplant on July, 1, 2016 at age 23. She employs writing and photography to document her healing process and raise awareness. Born with Transposition of the Great Arteries and Idiopathic Pulmonary Arterial Hypertension, Kathleen is now able to channel her drive into exercising and taking anti-rejection medications on a rigorous schedule.