Mental Health – Catherine’s Story

As we continue the Mental Health Series, Catherine Paour, shares her story with PCHA. Misdiagnosis and a CHD discovered later in life has forced her to face anxiety and urged her to spread awareness. 

 

 

Lots of prayer, purpose and passion has prepared me for a whole (hole) new way of life! I kept asking myself, “What is holding me back from living a life I would love?” I was always struggling and complaining that my lack of energy and stamina was really in the way of me pursuing my dreams after working full-time for the last 35 years and being a single mom to a child.
I’ve been a heart patient since the age of 12, when I was first told I had a heart murmur. I can visualize that appointment perfectly.  At 23, I failed my new hire physical at a local Medical Center, and required a Cardiologist to clear me for employment. In 1997, as a newlywed, I had a Trans Ischemic Attack (TIA), or a mini stroke, and thought I was going to leave my new husband a widower.  I had a baby in 1999, and I was surprised I survived.  In 2002, after a few years of unbelievable stress, when my baby suffered Shaken Baby Syndrome in the care of a licensed day care provider, I begged my Cardiologist of the last 20 years to “dig deeper.” I explained that I simply couldn’t breathe, couldn’t carry my baby, or get groceries from my car to the kitchen. I got resistance everywhere I turned, from being called a hyperventilator, to a hypochondriac, to just plan ole lazy, until finally I was diagnosed with Heart Failure at Urgent Care of all places. Yippee. At age 42? WHAT? How come my cardiologist hadn’t told me this?
 As time went on I was getting worse, shortness of breath, debilitating edema, my legs felt like concrete pillars, my digestion was horrible, my heart was pounding outside my chest, passing out, visual disturbances, wheezing like crazy and missing out of so much of life – it was never-ending. I ended up having not 1, not 2, but 3 Cardiac Ablations, with an additional 3 Cardioversions thrown in here and there. The ER knew me all to well. I was also on a home oxygen tank for a bit, and felt like a fool walking around work with a tank on wheels –  that was not fun. My lung function was always about at 52% with no known cause. My heart failure had no known cause. I thanked God everyday for my Handicapped Parking Placard, and my parents still ran circles around me. I finally bought a used electric scooter to take my son to places like amusement parks and zoo’s, and I excluded myself from anything physical for the last 15 years. This also meant loosing friends and countless opportunities.
And then I found my SPARK!!! I started working with a Certified Life Coach, and I came away with better than I could have ever expected. I made a commitment to my self-care, to “be bold,” and to seek out a new cardiologist after over 30 years.
Within a week, my new cardiologist sat with me in a hospital recovery room, after a TEE, and asked me if I knew or had ever been told I had a giant hole in my heart. He described it as an Atrial Septal Defect – something I have lived with my entire life, undiagnosed!!!!!  My mom and I were shocked, and I accidentally loudly answered “ uh… NO?”
I very quickly was scheduled for Open Heart Surgery at a top notch hospital to repair the hole. The surgeon said the hole was the biggest they had ever seen, and he specialized in this. He said I had a huge atrial aneurysm and the septal wall was basically non-existant. I didn’t have two chambers, just one big “swamp”. The hole measured 6 cm x 3 cm.
I was hoping to have a new found life, and love for it, but I find myself really struggling emotionally with the after effects and the bureaucracy of what I have been through in this experience. Three weeks after a succesful surgery, I went down hill fast and ended up in the ICU for a week with massive heart failure. My EF was at 10%. I had extremely low blood pressure, extremley high heart rate, every tachycardia there is, AfiB, blood clots, plueral effusion. It was terrifying, but I managed through it, finding hope in my future, the Lords breath breathed into my lungs, and my sense of humor.
From there on out, I wasn’t able to return to work. I finally made it to Cardiac Rehab four months later, but  broke my tailbone sitting on an exercise machine. So I’ve been compensating for months and months, and my body is in pain from head to toe. Yet I continue to find the joy in hopefully having a healthier future, and I can’t tell you how hard it is to have every Dr. I see still to this day say, “You’re lucky to be alive”.
I’m back into working with a life coach, writing two non-fiction books, doing some public speaking and podcast interviews.  However,  I still deal with the severe anxiety about my “ex” cardiologist and how my CHD could it have been missed all this time, my fear of what would have happened if I didn’t make the bold move to go to a new Cardiologist, and WHY is my “ex” cardiologist deemed as meeting the gold standard of care in my case.
I also struggle with anxiety regarding my workplace leave of absence, disability plans and managing a less stressful life moving forward. The systems and lack of education in CHD is so prevalent in my community, and I don’t know how anyone thinks they can can endure so much trauma and bounce right back into a very stressful workplace. I’m scared. My short term disability is over, my long term disability has been denied and currently being appealed, Social Security Disability has not made a determination and my place of employment can no longer hold my position, and I am facing termination. Another surgery  is on the horion as well, as soon as authorization is received.
But there is hope, I have faith. EARLY DETECTION is key. It is also important for adult patients to find medical professionals who know how to appropriately diagnose CHD and handle adult congenital patients, without making them feel like they’re just neurotic!

 

 

 

Catherine Paour was born and raised in Torrance California, and is the youngest of 3 children. She was born Frank Breech, which caused multiple orthopedic complications throughout her early years, that has limited her well into her adult years.  She suffered with heart issues all her life and had a cardiologist for over 30 years. Her ASD went undiagnosed until the age of 55. Today, Catherine is very open to sharing her story with a hint of humor to help others who may have to experience similar circumstances and to offer hope and healing about facing open heart surgery to repair a CHD. She is certified as a Vibrant Happy Women Meet-up Coach and continues to find ways to turn her pain into her purpose.

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 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: A Q&A on The Love of Reading with Members of the CHD Community

For the month of March, PCHA will be focusing on the theme of National Reading Month. In the 2nd post of our series, PCHA asked members from across the spectrum of our CHD Community to tell us what they love about reading. Sharing with us this week, about what reading has brought to their lives, are Megan Setzer from the perspective of her son Caleb, born with Hypoplastic Left Heart Syndrome, Alison Connors, mother of two heart warriors, McKenzie and Archer, and Carol Raimondi, an Adult CHD patient with Congenitally Corrected Transposition of the Great Arteries.

 

PCHA:  Why do you love to read?

Megan + Caleb: I’m still learning to read. I love being read to. I like feeling like I’m part of the story.

Alison: Reading is a great escape for me. When I read I am able take time to myself to decompress. Life can be stressful and having that outlet is so important. Reading is probably the most important skill you learn besides math.

Carol:  I love to read because it relaxes me. It allows my mind to focus on the story, and take me to wherever it is set. I can be in a place where the characters are, and that lets me temporarily forget any stresses or worries I have going in my life. 

 

PCHA: Where’s the best place to settle in with a good book?

Megan + Caleb: Anywhere. My favorite place is to snuggle into my bed and look at books before I go to sleep at night.

Alison: The best place to read a book is anywhere! A good book can be read in the loudest place imaginable, because once you start reading you are taken to a different place anyway!

Carol: I love stretching out in bed when I read. Being somewhere with little distraction is key!

 

PCHA: What’s the best part of your favorite book?

Megan + Caleb: Everything! I don’t really have a favorite.

Alison: For me, I like to read historical biographies of famous figures, like Abraham Lincoln, Che, Jackie O and Benjamin Franklin. Reading about the lives of historical figures and about our past customs in American history is a favorite of mine.

Carol:  I really don’t have one favorite book. Anytime I can relax and read for an extended period of time makes me happy!

 

PCHA: What character, from any book, do you most identify with?

Megan + Caleb: There is a small part of all the characters that I can identify with. I am strong like the Super Heroes that I read about and I’m silly like the funny creatures in the Dr. Seuss books.

Alison: When reading historical biographies I don’t necessarily identify with the characters I read about, but one thing about reading about someone’s history is that the past does sometimes repeat itself so I can see how America and the world hasn’t really changed as much as we all assume it has. Technology has changed but as human beings we are still fighting over the same things, fighting for the same things and uniting about the same things. It’s very interesting.

Carol: I tend to identify with any female lead character. Someone who has obstacles to overcome time and time again, but stays strong and shows perseverance. 

 

PCHA: Do you have a favorite author or genre? What do you like about that style?

Megan + Caleb: Dr. Seuss is my favorite author, because his books are funny.

Alison: Historical biographies are pretty much all I read. I figure I’d like to learn something while I am making the time to read. Abraham Lincoln is probably one of the most interesting people I have ever read about. How he ran the country, how he united with his rival, his views on leadership, and work ethic really impressed me. As a person you are always evolving, so whenever I can learn something from reading, I feel accomplished.

Carol: I tend to vary on the genre I read. Sometimes I will read medical non-fiction, as I enjoy learning about disease management and how others have handled living with chronic illness. Other times, I prefer to go the exact opposite and stay light by reading fantasy books. Anything with a vampire or werewolf will suffice! It is nice to escape reality and let my imagination go wild!

 

PCHA: Have you ready any books involving characters with CHD? How’s they hold up to your own experience?

Megan + Caleb: I have read the book, Zipline…It’s about a girl who had a heart surgery, and she is all better now.  Unlike this character, I have had multiple heart surgeries.  I also have a hard time keeping up with my friends when they are running around the playground.

Alison: I have not yet read any books involving characters with CHD! I will have to look into that! Every CHD story is different, which probably why CHD is not as well-known as I would like. Having over 35 different types, so many different outcomes, and sometimes having multiple CHDs really makes every Heart Family’s perspective completely unique, but I think each of us, whether your child’s ASD closed by itself or whether you child is on his/her 4th surgery, we’re all the same. We’re shocked, worried parents who strive to give our children the best life possible, and we’re not alone in this CHD heart journey. Heart parents and patients are pretty passionate people, so I think I would definitely relate to a book with a CHD character.

Carol: I have read several books with CHD patients as the main character. In some cases, I have identified completely with the feelings they have shared, to the point where it hits too close to home, and I need to put the book down for a few days. In other circumstances, I felt like the CHD patient did not give a good representation of what life is like with heart defects. It was either overdramatized or made to seem like it wasn’t a big deal. I prefer a happy medium between the two.

 

PCHA: What’s missing from bookstores? What book would you like to see on the shelves?

Megan + Caleb: I don’t know what’s missing from the bookstores, because most of my books come from the school Book Fair, in the mail, or are on my tablet. I love it when the Book Fair comes to my school and seeing all the different types of books that they have!

Alison: We lost my husband’s Mother, Nicky, suddenly last year. She was a fiction writer. She worked hard for her kids, and, when they were grown, she worked hard for herself. She went to Columbia College in Chicago and worked there as well. She was the coolest person to have as a Mother-in-Law; every time I talked to her she challenged my thinking, inspired me to be a strong woman, and always gave my husband a hard time, which was fun to see! I always thought we would have more time with her. I would love to see her works put into a book. She always talked about having so many works, pages and pages of unfinished work, a life unfinished. Maybe one day, as a family, we can make that happen. I would love to sit one day, open a book by Nicky Chakalis, and read it to the next generation of our family. For me, that’s what is missing on the bookshelves. 

Carol: I would love to see more books geared towards teens on living with chronic illness, whether CHD or not. I think this an important age group that needs as much information as they can get.  What book would I like to see on the shelf? A manual for life with CHD, from pre-natal diagnosis through adulthood, with chapters specifically for family members, friends, spouses and health care providers. That’s not asking too much, right?

 

Megan Setzer is a mother of a child with Hypoplastic Left Heart Syndrome. With a background in Social Work, it has become her passion to provide support and resources to those impacted by CHD.  Shortly after her son’s birth in 2009, Megan chartered Mended Little Hearts of Winchester as a way to connect area families and to offer support and resources. Under her leadership, the group was honored with the 2012 MLH Group Excellence Award and it continued to grow its network. In 2013, her group expanded geographically and became Mended Little Hearts of the Shenandoah Valley, serving families in the Shenandoah Valley of Virginia and Panhandle of West Virginia. She was elected as the Mended Little Hearts National Board Director in 2013, where she served until December 2016. She is currently serving as a Board Director for the Pediatric Congenital Heart Association.Megan has a Bachelor’s of Social Work from James Madison University, graduating in 1999.  She worked for almost 10 years as a Medical Social Worker, and is now employed in the health technology field as a Clinical Advisor, specializing in care transitions. When she is not volunteering, she is kept busy by her husband and two boys. She loves to read and crochet.

Alison Connors is a mother of three children: McKenzie, Jackson and Archer. Her oldest McKenzie and youngest Archer both had open heart surgery for congenital heart defects. McKenzie and Archer have been in the care of the PSHU team at Advocate Children’s Hospital in Oak Lawn, Illinois since birth. Alison has been married since 2009 to her best friend Christopher, and she recently went back to work as a 1:1 teacher’s aide for children with special needs. She and her family have a busy life, but she has a passion for volunteering and believes that there is healing power in taking part in something that is bigger than yourself. Having two children with CHD threw Alison onto a path she never expected to be on, but a path her family is very grateful to be on. It’s an honor for Alison and her family to share resources, give hope, and support to others who face the same situations that they have.

 

Carol Raimondi is an adult CHD patient and nurse, living with Congenitally Corrected Transposition of the Great Arteries.  She has had 4 open heart surgeries in her 40 years, as well as a pacemaker since the age of 6. After spending a large part of her childhood in and out of hospitals, she developed a passion for nursing. She went to school to become a cardiac nurse. Carol’s many hospital experiences helped her as a nurse to better understand what her patients were going through and  to care for them with that much more compassion and empathy.

Due to worsening medical issues, Carol had to give up the profession she loved. That did not stop her from being a patient advocate, however. She joined her local hospital’s’ Patient Family Advisory Council, which she now co-chairs, and shortly thereafter she joined Mended Little Hearts Chicago(MLHC) as an adult CHD liaison. She then expanded her work in the CHD community by starting an adult and teen CHD group within MLHC and became an  Ambassador for the Adult Congenital Heart Association. Currently she sits as the Pediatric Congenital Heart Association of IL(PCHA-IL) Vice President and State officer, after a recent transition from MLHC. Her proudest moments are when she is advocating and raising awareness for the CHD community, both on Capitol Hill in D.C. and locally.

A Letter To My Son

PCHA wishes all dads a Happy Father’s Day! We’re happy to share this letter written by Nolan Chenevert, who celebrates his second year as a dad to his son Barrett “Bear”.

Dear Barrett,

I remember so vividly how excited I was when your mom first told me that I was going to be a dad. I also remember how excitedly terrified I was the first time I held you. You were now something that I had to take care of, care for, and teach (thankfully, Mom is here to help!). I was officially a dad, your dad! My heart was so full and my mind was racing with all of the possibilities that your future held.

After a very moving and exhausting day (especially for mom!), things turned around quickly. You turned blue, were having trouble breathing, and they wanted to transfer you to another hospital. It was like I had just been repeatedly punched in the gut. I ran the three blocks to where they had taken you. I stopped in the hallway outside your room and froze. You were right there, but I couldn’t go in or talk to you, I couldn’t do anything for you. I’ve never felt such an incredible feeling of being so powerless. A team of nurses and doctors had your incubator surrounded and when I was finally able to see you, I noticed all of the tubes, wires, and tape that now covered your body. I just sat there in that hallway, trying to convince myself that this wasn’t real, that you were going to be just fine, that your mom and I were going to be taking you home soon. Your plane had finally arrived and it was time for you to get on it, without me.

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Two major heart surgeries, multiple procedures, and dozens of doctor appointments later, you’re here doing exactly what I imagined you would be doing. Your first day of life gave me such a wide range of emotions that it might seem like the days since would be boring, but every day is its own wild ride. I get significantly less sleep than I ever imagined I would have, but I can’t wait for my first hug in the morning. I shake my head when you get into one thing after another, but I love the smile you get when you’re having so much fun. I get to pick up toy cars and dinosaurs just to get them thrown right back out again, but you are learning to help. All of the trade offs are worth it, because you are here.

Today, I feel the greatest pride when I get to show you off and brag about how great you are doing. Being a parent is a feeling that is unparalleled by anything else I’ve ever experienced.

Throughout my life, I have always looked forward to celebrating Father’s Day with my dad.  We would always get together with your Grandpa and spend the day trying to do things we thought he wanted to do to celebrate him. I have nothing but happy memories of Father’s Day, both as a son and grandson, but now as a dad. Last year was my first Father’s Day with you and I’ve determined that it isn’t just about being celebrated by others for being a dad. It is just another day to celebrate the fact that I get to be your dad.

I couldn’t be prouder to be your dad. I love you!

Dad


12004727_10106681235387660_8976356233192569832_nNolan lives in Duluth, Minnesota with his wife Jess (Volunteer Social Media Coordinator for PCHA), their son Barrett “Bear” and their dog Bailey. Barrett was born with Transposition of the Great Arteries & Coarctation of the Aorta. Nolan is an elementary school teacher currently teaching 4th Grade. Nolan enjoys baseball, golf, playing guitar, kayaking, and spending time with his family.

A Thank You Note to Our CICU Nurse

Nurses are an integral part of CHD care, and we are so thankful for them! During National Nurses Appreciation Week, in conjunction with our Mothers Blog series, we share a letter from a mother to her child’s nurse.

To the nurse who taught me how to be a new kind of mother,

We raced through the CICU doors, but I stopped short as we entered the room I was told contained Nicholas. It was just an hour earlier when I kissed my son goodbye, as he was placed in an isolette for helicopter transport to another hospital. To save his life. Just two days earlier, I had been snuggling, nursing, talking to my seemingly healthy newborn. This is how I knew motherhood to be. And in the blink of an eye a heart defect was discovered, and he was suddenly critically ill.

Walking into an unfamiliar room a hundred miles from home, I didn’t see my baby. What I saw was a myriad of tubes running from foreign machines to a motionless body, suspended on a platform, highlighted by an overhead warming lamp. I didn’t hear my baby. Instead, I heard a cacophony of pumps and beeps contributing to the artificial environment.

Nick Hospital

When I saw nothing but a surreal science experiment, you saw my son. You saw hope and potential. So, you loved him, talked to him, sang to him. And then you taught me to do the same. You taught me how to talk to him as if he could hear me. You taught me how to caress his forehead and hold his hand. You shared your hope with me, and taught me to do the same. You were the mother he needed at that moment, the mother I never imagined I would have to be, and you taught me how to be this new kind of mother, too.

Thank you from the bottom of my heart. Happy Nurses Day and Happy Mother’s Day. On that day, you were both.


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Amy is mother to Nicholas whose critical coarctation of the aorta was discovered through early CCHD screening research in 2005. The strength and support of the CICU team helped lay the foundation for a career in CHD patient advocacy. You can read more about Amy here.

Volunteer at PCHA!

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The Pediatric Congenital Heart Association recognizes the vital importance of volunteers to ensure that we can achieve our mission – to Conquer Congenital Heart Disease.  It takes a community coming together around education, research and awareness to make an impact!

Ready to Volunteer?  Complete our volunteer application, today!

There are many ways to get involved:

Administrative Support – Help with data entry, writing letters, licking envelopes, all the little details that contribute to the big picture of empowering families and Conquering CHD!

Blogging – By making us laugh, cry and touching our hearts, our team of bloggers makes it personal with their words and pictures about experiences so many of us can relate to.

Communications and Marketing – Help us create and communicate the greatness that is PCHA! From graphic design to campaign execution help us tell the story of PCHA.

Donor Development – As a non-profit, PCHA relies heavily on the support of our individual donors.  Help us work with our donors to keep them informed, engaged and supportive of the work of PCHA!

Event Planning – “I wanted to plan a wedding, without the marriage part.” Attention to detail will ensure success for our events like our CHD Galas, dinner fundraisers and conferences.

Fundraising – Help us put the “fun” in Fundraising!  From Jamberry Nails to a birthday challenge help us raise much needed funds that support our vital programming including our Suggested Questions Tool for parents and Transparency Summit Series.

Grant Writing – This takes a special talent.  If you’ve got it, we need you!  Help us secure public and private dollars to support our key programs!

Industry and Corporate Development – Are you connected in the medical or business world? Please consider working with PCHA staff to grow relationships with industry and business partners to broaden our program support.

Legislative Advocacy – Whether it is calling, emailing, or visiting their lawmakers at home or in Washington D.C. the Pediatric Congenital Heart Association advocates are an amazing bunch!

Patient Education – Help us design tools and materials to empower patients and families that meet desired health literacy and diversity standards.

Social Media Ambassador – The impact of the passionate and engaged volunteers who like, share, re-tweet, post and tag has not gone unnoticed.  Our engagement ratio is higher than nearly all other CHD organizations out there!  Using social media to spread awareness and knowledge, indeed is a powerful form of volunteerism.

Volunteer Coordination – If you are a people person, than this is for you! Help us keep our many volunteers engaged and excited about PCHA and all that we do!

If you are interested in volunteering or would like more information, please complete the volunteer application, today!

Volunteer

Happy 2nd Birthday, PCHA!

Its our Birthday Birthday

We’re Celebrating!
Our 2nd Birthday and
Two Years Conquering CHD!

Look how much we’ve grown:
This list highlights our programs that have had a national impact in the last year, including the meaningful Summit on Transparency and Public Reporting** and our in demand Guided Questions Tool.Our programs work to:
Give Knowledge
  • Hosted Congenital Heart Legislative Conference*
  • Hosted Summit on Transparency and Public Reporting**
  • Participated in Hospital Site Visits
  • Presented at National Conferences
  • Launched Questions to Ask your Provider
  • Developed our Advocacy Toolkit
Give a Voice
  • Created Advocate Network Community
  • Supported Advocates to Contact Lawmakers
  • Visited Legislators
  • Informed National Policy
Give Hope
  • Promoted Federal Research Funding
  • Created Patient Centered Research Protocols
  • Shared Research Findings
  • Created Original, Inspirational Materials
  • Distribute Original Blog Posts by Parents and Patients

We need your help to continue to grow:
We want to continue these important projects, but we cannot do it without your help! Please donate to the Pediatric Congenital Heart Association to ensure we can continue to give knowledge, a voice, and hope as we work together to Conquer CHD!!

Donate Now

*The Legislative Conference was hosted in collaboration with Children’s Heart Foundation and Adult Congenital Heart Association
**Thank you to Ann and Robert H. Lurie Children’s Hospital for sponsoring the Transparency Summit

Unexpected Hero

Special thanks to Mark Gentle who agreed to share his son’s story with us. The following photo was also shared with permission.

Carter

He was scarred.  He was scared.  And now, he’s a superhero.

Carter recently underwent open heart surgery to repair a problem with his heart he has had since he was born. The surgery left a large scar down the front of Carter’s chest, along the center of his ribcage.   When the bandages were removed, Carter was devastated by the marks on his chest. So, dad posted a picture of his son, asking friends and family to show their love and support for Carter and his new look.

Carter was born with the most common birth defect.  1 in 100 babies are born with congenital heart disease (CHD).  One third of those born with CHD will require life-saving intervention or heart surgery at least once during childhood.  That’s thousands of children, each year.

Carter was concerned that he was going to look different.  What he didn’t know was that his difference was going to make such a positive impact.  In a few short days, Carter’s picture has received more than 1 Million likes and more than 75,000 shares.

Carter, you are not alone in this journey.  Thank you for sharing your struggles and making one of the largest impacts in CHD awareness history!

The Original Post Can Be Found Here. Please visit, like and share!