Mental Health – Courtney’s Story – A Mom’s Perspective

As PCHA continues  our current series, Courtney Kile  shares with us how her experiences as Heart Mom to son Sully impacted her mental health.

I still remember the first time it happened. The surgeon had come in to tell us that the open heart surgery performed on my 3-day old son, was an outstanding success.  I remember looking at the surgeon calmly and saying, “Thank you very much,” and I turned on my heel and nearly sprinted down the hallway.  My mom and step mom followed close behind, calling my name, but my brain wasn’t computing her words.  I grabbed the door to the lactation room at the end of the hall and swung it open to close myself inside.

Then I completely and totally lost it.

I sat on the sterile vinyl chair, hugging myself, sobbing, and I think I even drooled a little.  I’d been holding in all these emotions, trying to process everything that happened in the last 30 hours and once I knew he “safe”, I couldn’t hold back anymore.  Little did I know, this would be the start of a near constant internal battle.

My son Sully was born in November 2011, seemingly healthy.  Just 36 hours later, local doctors discovered a Congenital Heart Defect and he was airlifted to the larger, metro hospital.  The 3rd day of his life, a team of doctors and surgeons operated on his 6lb. 8 oz. body. After a spectacular recovery from his first surgery, we handed him off to the surgeons again just 6 months later.  That surgery was also a screaming success.

I considered myself a pretty together person.  I felt like I handled stress well and had healthy coping skills (scarfing a king size Reese’s is a healthy coping mechanism, right?).  As time went on, I noticed myself beginning to change.  When we were getting ready to leave the house for any reason, I would retch and gag, and sometimes even vomit.  I would get sweaty and nervous, and I had no idea what was going on.  If I wasn’t with Sully, I would think of all the horrible possibilities that could happen.  I would replay these scenarios in my head until I would end up in a crying ball on the couch.  What was wrong with me?  Everything was fine, but I just couldn’t figure out what was going on.  I was too scared to talk to anyone about it.  I have a job that keeps me in the public eye.  What if they thought I was crazy?  What would my family think?  I knew it wasn’t normal to need a gallon of Pepto just to go and get groceries.   I’d dealt with a mild form of anxiety all my life, but never like this.  This was different.

Right after Sully turned two, a friend a mine sat me down for a frank discussion.  Being a mental health practioner, she’d seen this before.  She told me that she wanted me to talk to my doctor.  I tried to blow her off, but she pushed further.  Then she said it, “I think you have PTSD.”

Umm… what?

I was stunned.  I wasn’t in the military and hadn’t been through a war.  How could I possibly have PTSD?  There had to be another explanation.

Even though I thought my friend was way off base, I decided to call my doctor.  After talking to my doctor and being referred to a therapist, it was confirmed; I had Post Traumatic Stress Disorder (PTSD). The diagnosis was hard to swallow.  I blamed myself for not being able to control my emotions and thoughts.  I felt crazy.

Then, I started talking to other parents who’d been through the same or similar situations.  It was during these conversations that I realized that I wasn’t alone.  All these other parents had feelings like I did.  Though none of us had been deployed to a warzone, we were on the frontlines of our own; battling for our children’s lives. We’d waged war against catastrophic medical conditions that threatened to kill our children; and sadly, some of those medical conditions took the lives of some sweet warriors.

With a newly restored hope, I decided to talk more about PTSD and mental health.  There is such a stigma surrounding mental health issues.  The world is judgmental, that’s a fact, but we cannot stand silent in battle alone.  We need to talk about it.  We need to let the masses know that this is a real struggle that stems from healing wounds.  Seeing your child hooked up to 20 IV racks, with chest tubes, and a ventilator, is not something you can easily get over.  When you face the mortality of your child, you change. It is something that rocks you to the very core of your being.

The biggest thing I’ve learned since my diagnosis is self-care.  I can’t be the mom Sully needs unless I take care of myself.  Admitting you need help can be tough for people, but it is a necessity.  You can’t do this alone. Do not be ashamed.  We are in this together.

 

I’m happy to report that Sully is almost 6 years old now.  He is starting kindergarten in the fall. He’s happy, healthy, and the joy of our lives.  As for me, I’ve learned tips and tricks to manage my anxiety and panic.  Don’t get me wrong, I’m not perfect.  There are still times that leave me in a nervous mess, reaching for my inhaler.  But those times are few and far between. Every day I choose to take care of myself and not let PTSD control me.

 

 

 

 

 

Courtney Kile hails from Duluth, MN.  She is the mom to an amazing CHD warrior named Sully and wife to Robert.  Courtney and her husband run Project Heart to Heart, a Minnesota based non-profit serving families who have children born with Congenital Heart Defects. She is a paralegal by trade and uses her skills to help CHD families.

Patient Engagement Tools: Comprehensive Single Ventricle Roadmap

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

 

Patient Engagement Tools: Comprehensive Single Ventricle Roadmap

Congenital Heart Disease (CHD) impacts about 40,000 newborns a year in the United States. Single ventricle defects are a complex subgroup of CHD, affecting approximately 5 out of every 100,000 newborns. In addition to normal pediatric and adult primary care needs, these patients are impacted by frequent follow up, complex testing, screening, re-interventions, surgeries, consulting providers, and care throughout a lifetime. This care not only impacts the patients, but the entire family system, including siblings, parents, grandparents, and extended family. The Comprehensive Single Ventricle Roadmap is a novel idea stemming from the persistent questions families have brought forward trying to understand the process of single ventricle disease over time and its neurodevelopmental effects.

Speaking from my personal experience as a younger sibling of a single ventricle patient, this kind of guide has been desperately needed for many decades. The first “blue babies” were given options for a better quality of life, and as research and outcomes have improved, these patients are now living into adulthood. Since arriving at Lurie Children’s Hospital in 2016, I am pleased to see the transformation of the idea evolve so promptly into a formal patient engagement strategy (available in English and Spanish) under the guidance of our entire team. I am specifically incredibly grateful to Dr. Kiona Allen and Amelia Aiello who agreed with this vision, making it a reality for patients and families.

Fontan Roadmap

https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/single-ventricle-roadmap.aspx

Guiding Families Through the Journey

Now that you have been introduced to the roadmap, imagine yourself learning about the diagnosis of single ventricle CHD prenatally. The typical excitement and thrill of learning you are on a road to being a parent of a healthy new baby is not the same joy for parents and families faced with an incurable single ventricle disease. The stops along that road and the topics you’ll discuss are critical, important, costly, and personal. The unknowns, outcomes, and trajectory of this road trip are overwhelming to comprehend. Emotions and fears are often high, breaking down the normal anticipatory excitement and joy.

The Comprehensive Single Ventricle Roadmap is not a pathway any parent eagerly seeks out; yet, it is essential to living life with single ventricle disease. It requires thoughtful planning in an already busy family life schedule to organize the daily care that must be performed seamlessly within the diagnosis and treatment of single ventricle disease. This population is only several decades old; thus, the unknowns within single ventricle care are many. Investigating the latest research outcomes is an essential part of the journey — this includes understanding and coping with the lack of care options. Medical science and care have often not evolved fast enough to benefit children with single ventricle disease. Discussions with families about the surgical and other milestones on the journey are not easy conversations. The unique framework of the roadmap provides a visual guide, allowing families a way to understand the disease process. It also allows for valuable transparent discussions about opportunities for positive coping, hope, and fostering resilience along individual family’s pathway.

The Roadmap is not a “cookie cutter” framework meant to fit every family’s story completely; no two patients (and families) will have the same journey. However, it helps families visualize and more fully understand what care throughout a lifetime looks like, and allows families to anticipate major milestones in a specific time span of a child’s life, such as the newborn surgery. Identifying this point in time allows for transitional discussions regarding navigation in and out of acute and chronic care. These conversations often raise questions about the acute issues currently present for the patient and allow opportunities to explain our other patient engagement tools. For more helpful tools follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/home-monitoring-program.aspx

Typical questions from families during the newborn surgery period include:

  1. How will I be able to care for my newborn after surgery?
  2. What is home surveillance monitoring and will I be able to breastfeed?
  3. What if I need to go to the ER or another health care provider?
  4. What does follow up look like in the HeArT clinic (High Acuity Transition Clinic) and the pre-Glenn visit?

Not all stop points are anticipated. A couple examples of unplanned cardiac triggers across a lifespan include a 12-month-old s/p Glenn with moderate to severe AV valve regurgitation failing to thrive on medical therapy. Because of the cardiac issues, this patient moves into the blue circle entitled additional procedures. This may include potential re-operation for valve concerns before the anticipated next surgery in the journey, the Fontan operation. A second example is a 15-year-old s/p Fontan with arrhythmias requiring placement of a pacemaker/AICD that moves into the additional procedures post-Fontan for arrhythmias not responsive to medical management. Lastly, a 40-year-old s/p Fontan with failing function requiring listing for transplant that moves into the additional procedures post-Fontan and in essence trades one disease state for another (single ventricle physiology for transplant).

Striving for Anticipatory Guidance and a Successful Transition to Adult Care

One goal of the roadmap is to provide cardiac anticipatory guidance for families on the normal developmental milestones in life (marked by schoolhouses and graduation caps) and indicates the need for continued cardiac neurodevelopmental screening. The roadmap creates a framework to discuss difficult topics, potential complications, disease trajectory, issues that develop because of single ventricle physiology, and new cardiac concerns. When new issues develop that require attention, we have open conversations with the family that outline goals, medical options, surgical palliation and outcome statistics. Included in the conversation is a diagnosis review utilizing images that are tailored to the child’s individual anatomy to explain the current anatomy and potential next phase of the child’s journey.

The second goal of the Comprehensive Single Ventricle Roadmap is to foster developmentally appropriate health-promoting behaviors as our patients transition to adulthood to enhance the longer term quality of life. In the early-late teen and adult years, decision-making shifts from primarily parent-driven to patient-driven. This can be challenging for all involved. The milestones on the roadmap visually guide patients and families along the valuable process of each child’s maturation, identifies opportunities for transition of care from parents to patients, and highlights ongoing surveillance monitoring of the many consequences of Fontan physiology to achieve the ideal outcome with the best quality of life. This process is individual for each patient and evolves over time. Success is achieved when coordinated, developmentally appropriate, and psychological supportive care creates patients that advocate for themselves in adulthood and maintain the most positive health promoting behaviors in lifeTo see more on developmental Milestones follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Documents/developmental-milestones.pdf

Lurie Children’s Hospital has a creative way of facilitating this transition within the Single Ventricle Program. The pediatric single ventricle clinic overlaps monthly with the single ventricle adults being seen in the Adult Congenital Heart Disease (ACHD) program. This allows for collaboration, a slower transition, and a formal hand off of care over time instead of a more rigid fixed timeline. To learn more on our website, follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/index.aspx

 

 

Michelle Steltzer has 20 years of nursing experience in fields from oncology to pediatric cardiology. She received both her bachelor and master’s degrees in nursing from the Univeristy of Wisconsin-Madison.

Michelle had a critical role in the development of the first home surveillance monitoring program for pediatric cardiology patients way back in 1999. She then worked collaboratively with the Joint Council on Congenital Heart Disease Quality Initiative while employed in Boston. Michelle expanded feeding protocols within congenital heart disease to include breastfeeding.

In addition to having worked at Boston Children’s Hospital and Children’s Hospital of Wisconsin, Michelle now works as a pediatric nurse practitioner at Ann & Robert H. Lurie Children’s Hospital of Chicago. Growing up with a sibling with a CHD, Michelle learned by experience and by watching her mother just what services were lacking for CHD families.

 

American Stroke Awareness Month – Terese’s Story

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

 

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

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

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

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

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

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

 

 

 

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

 

 

 

American Stroke Awareness Month – Molly’s Story

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

 

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

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

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

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

 

 

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

American Stroke Awareness Month – The Asher James Foundation

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

 

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

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

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

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

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

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

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

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

 

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

 

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

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

 

 

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

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

Donatel Life Month – A Tribute to Triston

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

 

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

 

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

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

 

 

 

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

Donate Life Month – Choosing to give the Ultimate Gift

 

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

 

 

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

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

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

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

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

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

 

 

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

Donate Life Month – The Call

 

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

 

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

 

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

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

 

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

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

 

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

 

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

 

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

 

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

 

 

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

 

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

 

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

 

 

 

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

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.