Choosing 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.

National Donate Life Month – Becoming A Donor

For the month of April, PCHA will be focusing on the theme of National Donate Life Month. In the second post of our series, Jennifer Weiner, an adult CHD patient, shares why she feels passionately about organ donation and how to sign up as a donor.

 

A while back, I got a letter from Jesse White, Illinois’ Secretary of State. It’s not like we’re pen pals, but when I renewed my driver’s license the state sent a friendly thank-you for preserving my organ donor status. Back in 2006, I signed up on the First Person Consent Registry, and I love getting that letter every four years. I love showing it to my family, saying, “Go to this web site and sign up” (Go to this website and sign up http://www.lifegoeson.com/)!  I love the reminder that I made an active, conscious decision to help someone else.

To me, signing up on the registry, promising a part of ourselves to a stranger, is one of the most amazing yet simplest ways of tying us all together. This ad, which caught my attention back in 2007, has stuck with me 10 years later and demonstrates that idea perfectly.

 

I remember when I turned 16, the First Person Consent list didn’t exist. I, no doubt about it, signed the back of that very first driver’s license. Even then, organ donation was something I felt strongly about. I wanted to make sure everyone knew my wishes; I insisted my friends and family follow through with donation under any circumstances.

When the registry came out, I read all the details and signed online immediately. The website explains that your status on the list isn’t available until after you pass, you can change your mind, and it’s legally binding, so even if your family disagrees with your decision, your wishes will be honored.

I’m sure by now you’re wondering if Jesse White’s letter asks for marketing help, but I swear it didn’t.  By my best estimation, this all started with me in 8th grade. My sister and I were prayer partners with Paige´ Wilsek – we went to Catholic School. I will never forget it. She was in third grade and suffering from cancer, which started as Leukemia and spread to her bones. Our church held a donor search to find a bone marrow match for her. The chances of finding one were pretty slim, because of her rare blood type. They never found a match. Paige´ died before she finished 4th grade. I remember how hard it was to go to her wake and funeral. I couldn’t stop thinking about all the things she would never get to do, the life she should have had. Her mother wound up comforting me instead of the other way around.

Typically, you’d think of an organ donation as a whole heart or a kidney, but, in reality, even one vital healthy piece can save someone’s life, like the bone marrow Paige´ never got. It stuck with me then, and hit closer to home when I was 17 and received a donation of my own.

In 1999, I received a pulmonary valve and conduit homograft. At first, I thought of it as some disembodied pulmonary artery sitting in a freezer somewhere. It wasn’t until someone asked me whether or not I was going to send a thank you letter to the family that it hit me. I was alive and healthy thanks to someone else’s final gift. I never did send a thank you, and still feel a bit guilty about that.  Perhaps the best way to say thank you, though, is to pay it forward. I want to give whatever I can in the end, in hopes that it will give someone else a second chance.

So for all of you that haven’t signed the First Person Consent Registry to become an organ donor, go to http://www.lifegoeson.com/ and sign up.

 

*Please note each State has its own policy/procedure for organ donation registration. Learn more about organ donation and the policy in your State,  or to register and learn more about  various types of donation, please check out Donate Life.

 

 

Jennifer is a graduate of DePaul University, with a degree in Elementary Education and an MA in English and Creative Writing from SNHU. She is a 35 year old adult congenital heart patient, born with Truncus Arteriosus, has had two repair surgeries, and is an ICD recipient. Jennifer volunteers for the Pediatric Congenital Heart Association, both nationally and locally, managing the PCHA Blog and IL Chapter Communications. She also serves on the steering committee of Chicagoland Cardiac Connections, an organization that provides support and resources for patients with cardiac devices, based out of Lurie Children’s Chicago.

National Donate Life Month – The Wait

For the month of April, PCHA will be focusing on the theme of National Donate Life Month. In the first post of our series, Bill Coon, professional author and speaker, shares thoughts on his wait for a multiple organ transplant.

 

I didn’t see the point in journaling yesterday. The day as a whole was very monotonous. My only visitor was my mom. She just sat in my room all day as I walked the halls of the CCU and worked on my homework.

 It seems the longer I wait for my transplants, the more I begin to think about the life of my donor.

 What are they doing right now? What will cause them to die? If they are driving in a car when they are killed, where were they going? Were they happy when they died? Will they find inner peace before they pass? Or did they just finish fighting with a loved one and will never get a chance to say they were sorry? Is my donor a good person? Do they have many regrets from their past? What are their future aspirations that they want to accomplish but will never get a chance to complete? Do they have a family? Are they alone? Will they be scared when they pass?

 My mind races with these questions on monotonous days. I find it shocking to believe that my donor’s life is so rich at the moment. They have no idea what is to come in the near future, nor do they have any idea as to whom I am and how horrendously awful my life has become in a matter of three and a half months.

 Like always, I am trying my hardest to push those thoughts aside. I try to look for the bright spots in my life, but I still can’t shake the thoughts.

 I hate monotonous days.

I wrote those words from my hospital bed in Chicago on Thursday, September 24, 2009. The very donor I referenced would save my life exactly twenty-seven days later when he or she would gift me their heart and one of their kidneys.

A photo from the hospital illustrating Bill’s neck post-procedure.

I truly believe that one of the largest misconceptions of organ donation is that the recipient’s life goes back to normal the second they exit the hospital with their clean bill of health. While the physical transition is incredibly quick, the mental transition from experiencing “the wait” is one that takes years to overcome. However, please know that I use the term “overcome” very lightly. For the realization that a stranger must die for you to live is more humbling than the realization of your own mortality. The realization causes you to answer a barrage of interpersonal questions. You spend your days in the hospital (and months, if not years) post-surgery questioning why you were saved. You ask yourself, time and time again, Why did the universe choose me over my donor? These questions, of course, can never be answered with any absolute certainty. However, they do force you to reevaluate your life and begin making decisions that not only honor the miraculous gift you received, but also the life of your donor.

The memories that you develop from “the wait” only deepen your new sense of responsibility to live a good life post-transplant. While I have many memories from “the wait” there are two that changed me the most. These two memories find a way to rise from my subconscious in the moments of my post-transplant life where I begin to stress about petty obstacles. It is as though my brain, in a beautiful way, reminds me that as long as I have my health and my loved ones, there are no problems that cannot be easily rectified and resolved.

The memory I would like to share with you is of a ritual that I had each night of my 70-day wait for a new heart and kidney. My doctors told me that I would be notified of a perfect match via a call to a tiny, white-yellow phone that rested on a nightstand at the head of my hospital bed. In turn, while I waited for the phone to ring, I began to obsess over the fantasy of hearing the tone. Consequently, each night I went out of my way to make sure I was ready to answer the phone at any hour of the night.

Prior to bed, I would take my food tray and set it next to the right side of my bed near my hand. I would then reach over the bed and grab the phone. After stretching the phone cord, I would neatly place the phone atop my food tray. Next, I would place a pillow on the left side of my body because I developed a tendency of banging my left arm against the bed rail while I slept. I would then turn the lights off and I would begin to pray. I would begin to beg for God, the universe, for anybody or anything to save me. I would then transition to the final part of my ritual where I would lie in bed for hours feeling absolutely terrible that I had, technically, just prayed for someone else to die.

This memory is a perfect microcosm of “the wait”. Though you spend your days in organ failure feeling miserable, for the most part, you are rarely left alone. The time spent with others is typically discussion surrounding your medications, upcoming appointments, procedures and what life will be like once you receive your organs. In the rare hours when you are left alone, you spend those hours thinking of the donor. The donor never leaves you before and after they become a part of you.

It is with this in mind that I would like to encourage everyone to become an organ donor. In doing so, not only will you save a life, but also you will be loved and honored each day after your passing by the recipient of your generosity.

Bill just moments prior to his second heart transplant.

 

 

Please use this link to find your state’s donor registry and become an organ donor today.

 

 

Bill Coon is a two-time heart transplant recipient, kidney recipient, HLHS survivor, author and professional speaker. His book, SWIM: A Memoir of Survivor has been read by thousands internationally and has aided countless individuals in overcoming the mental battle of a chronic illness. Click here to learn more about Bill.

Action Alert: FY2018 Appropriations

 

Email your Representative, today, and ask her or him to sign the Appropriations letter being circulated by CHD legislative champions Representatives Schiff and Bilirakis in support of congenital heart disease-related public health research and surveillance initiatives at the CDC.

There is a lot going on in Washington D.C.  While we haven’t stopped our efforts focusing on getting our Senators and Representatives to co-sponsor the Congenital Heart Futures Reauthorization Act, we need to take a minute to remind them to keep our existing funding in the budget to help the CDC do their important work.

 

Sending an email is simple!!

  1. Find your legislator’s contact information.
    1. Visit  www.house.gov
    2. If this is your first time reaching out, use the contact form on the legislator’s website to send your email.
    3. If you have identified the Health LA, or had a previous contact with your member or a member of their staff, please feel free to use the direct email address you were given.
  2. Copy and paste the sample email, below, and personalize:
    1. Include your legislator’s name
    2. Add your own personal story where indicated
    3. Sign with your name, city, state and contact info
  3. Send it!

—— SAMPLE EMAIL —–

Dear Representative xyz,

As you are working on appropriations requests for FY2018, I urge you to show your support for continued funding of essential congenital heart disease-related public health research and surveillance initiatives at the Centers for Disease Control and Prevention.

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.

Please show your support by signing the Appropriations Letter being circulated by Representatives Bilirakis and Schiff.  To add your name, please contact Shayne Woods with Bilirakis (Shayne.Woods@mail.house.gov), or Anthony Theissen with Schiff (Anthony.Theissen@mail.house.gov)
This is important to me because: (ONE-TWO SENTENCES)
Share your story briefly, here.

Odds are, someone you know has been impacted by the most common birth defect.

Join us as together, we are #ConqueringCHD.

Sincerely,
Your Name
Address

 

National Reading Month: You’re Here for a Reason

For the month of March, PCHA will be focusing on the theme of National Reading Month. In the 3rd post of our series, PCHA’s Jessica Chenevert talks with us about one special book. Read on to hear why You’re Here for a Reason holds a special place in her heart.

Barrett checking out his book

When I bought this children’s book, I had no idea that the first time I would read it to my son, Bear, I would be brought to tears. Never in my life has a book made me cry. The book is titled, “You’re Here for a Reason,” and it’s written and illustrated by Nancy Tillman. I decided to buy it, because I loved another one of her books, “On the Night You Were Born,” which Bear had received as a gift for his first Christmas. Not only does the book have a beautiful rhyming phrases, but it is written in a way that floats off the pages and can truly relate itself to your life. In my case, the words reached through the pages and spoke to me about Barrett’s journey with Congenital Heart Disease. The book, as far as I know, has no relation to heart disease and wasn’t written with a heart kid in mind, but every word I read applied to it perfectly.

Barrett is here for a reason. Every one of us is. Nancy shows her readers how each of us fits into life’s big picture and how this world would simply be incomplete without each of us in it. As we sat there after reading the book, I held my sweet, strong warrior and rocked him back and forth and thought it was such a perfect gift for children and families living with CHD.

One of the fun things I am able to do at PCHA is pick a quote and pair it with photo to create an inspirational design of sorts. Naturally, I created one using a passage from one of these great books and posted it on social media. To my great surprise, the author herself engaged in the post. I immediately reached out to her on my personal account about my love for her books and sent her a picture of Barrett.

Of course, she responded to those also, and I was overjoyed. A small interaction, but one that would stay with me. Little did I know it would not end there. Last September, I had the privilege of being honored at the Congenital Heart Gala in Milwaukee with the Heart Hero of the Year Award. Our Director of Programs, Amy, knowing my love for Nancy Tillman books, reached out to the New York Times best-selling author so that when I walked up to accept the award I would also have a copy of “You’re Here for a Reason” made out to Barrett, complete with a signature.

Ezra on his 2nd Birthday

Giving parents words that can match the feelings they have for their children is Nancy Tillman’s goal in creating these books. Before I even knew about that, I had felt it. I had already decided it would be the book I wanted to gift to other amazing little warriors and their parents. Just one month earlier, I had given it as part of a gift from Barrett to his buddy Ezra on his 2nd birthday. Now, Barrett and Ezra were born roughly two weeks apart, they had all the same newborn clothes, underwent surgery at the same hospital, and were both living with CHD. Ezra’s battle had been particularly rough, but Ezzie’s mom and I liked to call them twins, because even with different defects, different struggles, and ultimately different outcomes…they were brothers on this journey.

This book has a special place on Barrett’s book shelf and in my heart. Each time we read it, I hope he knows how truly amazing and strong he is and how much he is loved.

 

 

 

Note from the Author:

Dear loving parents,

My own grandchild was born with a hole in her heart, so I know much of the struggle that you are going through.  She is well and happy now and that is what I wish for all your precious children.  I wrote You’re Here for a Reason to speak from your heart. I so dearly hope it does.  Your child is miraculous.

Blessings,

Nancy Tillman

 

 

 

 

Jess lives up the North Shore of Minnesota with her husband Nolan and their son Barrett “Bear” and their dog Bailey. Barrett was born with Transposition of the Great Arteries & Coarctation of the Aorta. With a background in several aspects of the medical field Jess. Joined PCHA shortly after Barrett’s Birth and subsequent diagnosis. Now a stay at home heart mom she strives to be an active volunteer as an advocate, committee member, and Social Media Coordinator for PCHA.

National Reading Month: It’s My Heart Book

For the month of March, PCHA will be focusing on the theme of National Reading Month. In the first post of our series, the Children’s Heart Foundation shares an overview of the It’s My Heart book, a resource for families affected by CHD. PCHA and the Children’s Heart Foundation are partnering to include the It’s My Heart book in every Conquering CHD Kit. 

 

 

 

Receiving a congenital heart defect (CHD) diagnosis is often an emotional, confusing and overwhelming time.

In 2003, The Children’s Heart Foundation (CHF) – along with a dedicated group of doctors, nurses and parents – set-out to address a dire need noted by patients with CHDs and their loved ones. Although doctors and nurses often explained things well, written materials were either too simple (pamphlets on how the normal heart works) or too complex (medical journals). There was a need for a resource guide with clear writing and illustrations on the most common kinds of heart defects, tests, equipment, surgical procedures and medications.

Published in 2004, It’s My Heart, was written in plain, understandable language. It provides descriptions of the types of CHDs, explanations of the various tests, surgical procedures and treatments for CHDs. This book also contains helpful “before and after” diagrams, a glossary of medical terms, and much, much more.

“Hours after my son was first diagnosed with a CHD at 2 days old, our nurse handed me a copy of It’s My Heart in the hospital. I remember being so scared and confused at that time; it felt as if everything was broken,” said Sally Powers, CHF Executive Board Member & Heart Mom to Sam.

“But that book was one of the first resources I had to help lift me up and move me forward on our journey with CHD,” Sally continues. “And that made me feel hopeful.”

Today, in its’ second edition, It’s My Heart is still a widely used resource book. CHF distributes this book to patients, parents, family members, healthcare professionals and friends of congenital heart defect patients worldwide.

It has always been a high priority for CHF to offer the book free-of-charge. Thanks to support from Medtronic Foundation, Northwestern University Dance Marathon 2011 and various grants, CHF has been able to continue to do so.

“I’ll always be thankful that The Children’s Heart Foundation knew the need for newly diagnosed parents to have that kind of easy-to-understand resource at such a critical time,” Sally said. “My son is 8 now and I still refer to It’s My Heart often.”

To order your free copy of It’s My Heart, please visit: http://weblink.donorperfect.com/Itsmyheartbookorder.
If you have any questions or to place an international order, please contact Rosemary at RWheeler@childrensheartfoundation.org.

 

 

About The Children’s Heart Foundation

The mission of The Children’s Heart Foundation is to fund the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects. For more information, please visit:www.childrensheartfoundation.org. Follow us on Facebook and Twitter.

 

Join fellow advocates in D.C. and email Congress!

As you read this, more than 180 fellow advocates are on Capitol Hill meeting with their Members of Congress as part of the 2017 Congenital Heart Legislative Conference.  They are asking their lawmakers to support research, data collection and awareness activities related to congenital heart disease (CHD). This includes recruitment of co-sponsors for the recently introduced Congenital Heart Futures Reauthorization Act of 2017.

We need you to participate from home!

Help us bring the voice of CHD to Washington by sending an email to your Members of Congress.

It’s as easy as 1, 2, 3!

  1. Find your legislator’s contact information.
    – If this is your first time reaching out, use the contact form on the legislator’s website to send your email.  Visit www.senate.gov or www.house.gov.
    – If you have identified the Health LA, or had a previous contact with your member or a member of their staff, please feel free to use the direct email address you were given.

2. Copy and paste the email below – adding your own personal story.

3. Send it!

You did it!  If you successfully connect with your legislator or their office, let us know you made contact by completing our online form available here.

This is a very exciting day and a great opportunity to work together to Conquer CHD!

__________

Sample Letter:

Subject: Support Congenital Heart Disease Research

Dear Senator/Congressman [Fill in name here],

I’m writing to urge you to support federal research, surveillance and awareness for congenital heart disease (CHD).

Every 15 minutes, a baby is born with congenital heart disease, the most common birth defect and leading cause of birth defect related infant death.  Even for those who receive successful intervention, it is not a 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.
Continued federal investment is necessary to provide rigorous epidemiological and longitudinal public health surveillance and public health research on infants, children, adolescents and adults to better understand congenital heart disease at every age, improve outcomes and reduce costs.

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.
  • Provide $7 million to the CDC and $2 billion over FY2017 to the NIH in fiscal year 2018; if including in your appropriations request, sample language is available
  • Join the Congenital Heart Congressional Caucus (for House Members – contact Shayne.woods@mail.house.gov)

If you would like any additional information please contact Amy Basken at abasken@conqueringchd.org.

Thank you-
[Your Name – your city/state]

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

Congenital Heart Disease Legislation

 

In February, 2017, the Congenital Heart Futures Act Reauthorization Bill was re-introduced in the Senate (S.477) and House (H.R.1222) by legislative champions:

  • Senator Dick Durbin (D-IL)
  • Senator Bob Casey (D-PA)
  • Representative Gus Bilirakis (R-FL)
  • Representative Adam Schiff (D-CA)

Current Cosponsors (Updated 5/23/17)

Senate Cosponsors – Date Cosponsored
  • Whitehouse, Sheldon [D-RI] – 4/7/17
  • Stabenow, Debbie [D-MI] – 4/7/17
  • Klobuchar, Amy [D-MN] – 4/7/17
  • Baldwin, Tammy [D-WI] – 4/7/17

House Cosponsors – Date Cosponsored
  • Pocan, Mark [D-WI] – 3/28/17
  • Connolly, Gerald [D-VA] – 3/28/17
  • Soto, Darren [D-FL] – 3/28/17
  • Evans, Dwight [D-PA] – 3/28/17
  • Holmes-Norton, Eleanor [D-DC] – 3/28/17
  • Murphy, Stephanie [D-FL] – 3/28/17
  • Swalwell, Eric [D-CA] – 3/28/17
  • Loebsack, Dave [D-IA] – 3/28/17
  • Stivers, Steve [R-OH] – 3/28/17
  • Webster, Daniel [R-FL] – 3/28/17
  • McMorris-Rodgers, Kathy [R-WA] – 3/28/17
  • Abraham, Ralph [R-LA] – 3/28/17
  • Guthrie, Brett [R-KY] – 3/28/17
  • Bost, Mike [R-IL] – 3/28/17
  • Mullin, Markwayne [R-OK] – 3/28/17
  • Nolan, Richard [D-MN] – 3/29/17
  • Fitzpatrick, Brian [R-PA] – 4/3/17
  • Collins, Chris [R-NY] – 4/4/17
  • Velazquez, Nydia [D-NY] – 4/6/17
  • Ros-Lehtinen, Ileana [R-FL] – 4/20/17
  • Sessions, Pete [R-TX] – 5/3/17
  • Griffith, Morgan [R-VA] – 5/19/17
  • Ellison, Keith [D-MN] – 5/23/17

Are your legislators on the list?

If not email them, today!!!


Here’s more information about the CHFRA:

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.

Here is the complete text as introduced in the House on 11/5/15. There are differences between how the bill in the House and Senate are written, based on key factors in the political process for each.  This is anticipated to be reconciled later on in the bill passage process.

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

If you are interested in becoming an advocate for this important issue, visit the advocacy section of our website which contains information about signing-up, as well as tools to help you be an amazing advocate.

Together, we will CONQUER CHD!


Sample email:

Send an email, today!
Sending an email is simple!!

  1. Find your legislator’s contact information.
    1. Visit  www.senate.gov or www.house.gov
    2. If this is your first time reaching out, use the contact form on the legislator’s website to send your email.
    3. If you have identified the Health LA, or had a previous contact with your member or a member of their staff, please feel free to use the direct email address you were given.
  2. Copy and paste the sample email, below, and personalize:
    1. Include your legislator’s name
    2. Add your own personal story where indicated
    3. Sign with your name, city, state and contact info
  3. Send it!

—— SAMPLE EMAIL —–

Dear Senator/Representative XYZ,

As you are working on appropriations requests for FY2018, I urge you to show your support for continued funding of essential congenital heart disease-related public health research and surveillance initiatives at the Centers for Disease Control and Prevention.

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.

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.
This is important to me because: (ONE-TWO SENTENCES)
Share your story briefly, here.

Odds are, someone you know has been impacted by the most common birth defect.

Join us as together, we are #ConqueringCHD.

Sincerely,
Your Name
Address

#CHDAware – CHD Awareness Week 2017

There are a few key ways to help us raise awareness:

Be a part of our Crowdfunding Campaign!

CHD Aware: Raising Awareness to support our Conquering CHD Kits!

It couldn’t be easier simply click here, or text CHDaware2017 to 71777 to donate or become a fundraiser yourself.

Help us reach our goal of $10,000 to get 400 of our Conquering CHD kits into the hands of those in need. These kits offer critical information and a personal connection for people with CHD of all ages and their families, through individualized care packages.

  • $10 puts our canvas bag into the hands of a parent who just learned of their child’s diagnosis
  • $25 allows us to provide a complete kit of educational materials and comfort items to a family whose child is in the hospital
  • $50 helps us educate 5 medical providers about the needs of patients with CHD and their families

Become a fundraiser yourself – post to FB, text your friends, send an email.  All the tools you need are right there on your phone! Any fundraiser who raises over $100 dollars will receive a free PCHA Conquering CHD t-shirt. That’s just 10 friends donating $10!!

You can even share this graphic to engage your friends and family:


Be a part of our Social Media Campaign!

#CHDaware: Raising awareness of CHD

February 7-14 is Congenital Heart Disease Awareness Week. What are you going to do to spread the word about the most common birth defect?

Several of the Pediatric Congenital Heart Association programs help educate parents, physicians, and lawmakers in turn spreading awareness all year long.

However, during the week of February 7-14, the entire community comes together to help others understand how common birth defects are,  the need for research, and access to quality care.

We have created a series of social media graphics that you can use to help us reach those outside of our community. Share them, tweet them, pin them, make them your profile pic.

Make it personal – add details about your story, your experience.  Include a message about the importance of research funding or encourage others to advocate.

We can do the work for you – 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 linkedin iglogocolor

Where are the graphics?

During CHD Awareness Week, we will post a new graphic each day for you to share, tweet, pin…

Here’s a page banner to get you started!

 


Join our Booster Campaign – Buy a t-shirt!

#CHDaware: Raise awareness buy wearing our Heart Infographic!
Check out our booster and get your shirt, today!  Shirts will be delivered 2-3 weeks AFTER CHD Awareness Week, so you can spread awareness all year long!!