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JENNIFER WEINER

Jennifer is an adult CHD patient, post repair for Truncus Arteriosus. She received her first pacemaker in 2014, 15 years after her last open heart surgery. Currently, among many adult patients, there is a misconception that surgery is a cure; complications necessitating a pacemaker came as a surprise to Jennifer, and it took a while for her to agree. Chicagoland Cardiac Connections Day helped alleviate her fear.

Now 34, Jennifer is a graduate of DePaul University with a degree in Elementary Education and most recently completed her Masters in English and Creative Writing. She loves reading, traveling as much as possible, and chasing around her nephew. Much of Jennifer's time, though, along with her involvement in Chicagoland Cardiac Connections, is spent volunteering as a coordinator for Mended Little Hearts of Chicago to help other patients like herself.

MAX KOTH

As a young adult, Maxwell has been an inspiration for patients, families, and peers. Max has turned the combination of his story, and experiences with his work ethic, and communication skills to share with the community a combination of inspirational and emotional public speeches. Speaking a patient's perspective, Maxwell gave a speech to Doctors, and medical personal at the American College of cardiology conference downtown Chicago in 2016. He has also shared his story at Carthage College in Kenosha Wisconsin, and at the CCC event day in 2014.

Maxwell is a twenty-year- old college student majoring in both business management and finance. Having congenital heart disease, he became comfortable with the hospital atmosphere from a very young age; although he didnt receive his ICD until the age of eleven. He puts a strong emphasis on patients striving to live a normal life, while simultaneously being conscious, accepting and educated of the condition that they have. Maxwell enjoys mentoring younger patients to aid them in overcoming their fears by giving them giving them motivation, and confidence. Maxwell currently is currently the fundraising chair, and new member trainer in his fraternity. This allows him to make connections while assisting younger students go through the same transition into college as he did. While allowing him to work with his business background in order to build upon a collective goal.

Maxwell was born with a host of irregularities, including Double outlet right ventricle, transposition of the great vessels, ASD, VSD & pulmonary stenosis, and VSD disclosure. Later at the age of eleven he developed Ventricular tachyarrhythmia and received an ICD defibrillator.

My story began from the day I was born. At the age of six months I received my first heart surgery. During that surgery I was given an artificial conduit. Also during that surgery, I unfortunately had a stroke, paralyzing me on my right side. Through physical therapy I was able to regain function of my ride side, but interestingly enough I am now left handed. Fast forward some time at the age of two I was given a gortex valve. And for the next nine years, I lived to be what I considered the most normal life that I knew. I was just like every other kid growing up, of course there were yearly doctor visits, and the need to take medications. But I played sports, went to school, and lived care free just like every other kid. Until about fifth grade. For me, this is when things began to change, quite drastically. I would have these unexplained 'spells' as I would call them. At any time that I became nervous or startled I would feel extremely abnormal. Light headed, heart racing, my adrenaline rushing, my reality would be warped, I would feel as if I was in a dream, as the room around me would begin to slow. What I didn't know at the time is that what I had experienced was actually tachycardia. And at the end of the school year I was hospitalized for ten days. My conduit was replaced with a larger one, and I had received an ICD defibrillator. For me this was an all-new experience, I couldn't remember my surgeries in the past, at the ages of six months or two years old so this experience at the age of eleven truly opened my eyes, and changed my perspective in quite a good way actually.

Roughly six months after my open heart surgery life returned to normal. I did become more conscious of my condition, I had become more educated and more in tuned to how my body felt. However, for the most part I was back to a normal lifestyle in fact, the next five years were some of the best years of my life. Playing sports, attending school, making friends and so much more. Things once again changed my junior year of high school. And of all places I was at my homecoming dance, I was having a great time and then I felt as if someone had punched me right in the back. I turned around to see who it was, but there was no one there. And then it happened again. My whole body was jolted. My legs became erect, my muscles tightened and I was forced into the air. I then realized. I had been defibrillated. So I found myself walking to the office. I told them to call 911 I then called my parents, but they didn't have cell service.

Hospital downtown. I stayed for just a few days while they ran tests and they had decided to replace my ICD and put me on a beta blocker and for the most of my stay I was just monitored under the influence of the beta blocker. There I met some incredible doctors which had started my journey in starting the Chicagoland Cardiac Connections from just a simple conversation about an idea to what it is today. This would be fiasco of an event had the greatest silver lining due to me being able to have so many great experiences and connections with so many people from the opportunities that the CCC has given me.

As my parents child, I was always told from the beginning that I was no different than anyone else. I was treated the same. Never did I feel like a sick kid. Or have the need to feel sorry for myself. I know my parents did worry for me, and I know they always did keep an eye on me to make sure I was safe and healthy or that I wasn't pushing myself too hard. But what they showed me, was pride for their son, this made me confident, I saw my differences as a good thing. And setting off into college the idea of being on my own, having to order my own medications, making my own doctor appointments and monitoring my own health at a whole new level was a nerve-racking concept to me at the time. And the influence such things like drugs and alcohol even made nervous, let alone my parents. I am currently a junior at Carthage College in Kenosha Wisconsin. In my academic career, and as student things were always pretty normal for me, I did well in school. In fact, because I became part of the Chicagoland

Cardiac Connections, I was able to practice my relationship building and my public speaking skills. Which has been a tremendous advantage for me throughout most of my classes. Actually, Last year I took a public speaking course in hopes to do well on my speech at the ACC convention in April of 2016 in downtown Chicago. Yet it turns out, that speaking at the CCC actually helped me for that class. As for disadvantages, I did have to deal with Anxiety issues I developed after my many hospitalizations, but thanks to my environment and activities that I took part in, I was able to overcome these issues. Throughout school I remain fairly active both academically and physically. from my experience this is the most disputed, and vague topic to tackle within my realm of the medical field, as a patient. I was fortunate enough to play many sports, including, basketball, baseball and all the sports I played with my friends growing up. The guidelines given to me by doctors were always vague, of course. No contact sports, but other than that it was up to my parents' discretion, and as I got older it became my responsibility to determine if an activity was too physically demanding. I was a runner for most of high school. Being a runner truly helped build my confidence; It gave me an outlet to have the experience of being normal, feeling strong and capable. However, I ended up finding solace in golf. It was of course less physically demanding, and it is something that I'll be able to keep up with for the majority of my life. I am still quite active, as through my experience, and perspective growing up, I realized that sports allowed me to grow, and to build relationships with people in such a unique way. I truly consider myself very lucky in the sense that my experiences have shaped me into the person that I am today, and that although I live with my condition each day, I am excited for what the future brings to me.


MATTHEW JAZWINSKI

Matthew has been an inspiration to many, and music has allowed for him give back to the hospital that has helped his heart. Matt founded his band Pulsebeat in January of 2014 when he was invited to perform at the Chicago Dance Marathon - a benefit for Lurie Children's Hospital. Since then, Pulsebeat has performed at over 45 events and dance marathons for the hospital across Chicagoland and Northwest Indiana.

During the summer of 2016, Matt and his band opened up for Colbie Caillat and Gavin DeGraw at Eric & Kathy 101.9 the MIX "Concert for the Kids" kick off events for the annual Eric & Kathy Lurie Children's Hospital Radiothon, at MB Financial Park.

Matthew hopes that through his music, he can bring awareness to and help connect people to the life saving work of Lurie Children's Hospital. He was born with a congenital heart defect called Tetrology of Fallot and at age three received his first pacemaker. The doctors help his heart have a healthy rhythm, and he in turn is able to provide rhythm, through his music, to the world.


RYAN ALESSE

Hello, my name is Ryan Alesse. I am currently 20 years old and I am a patient with an ICD. This is my story.

Back in May of 2009, I was at a Boy Scout meeting helping set up new tents to inspect them. After my partner and I set ours up, we decided to race to kill some time, being the energetic 13 year olds that we were. After the race, I was short of breath and could feel my heart racing. Trying to catch my breath, I sat down on the cool blacktop. As I struggled to try and slow down my heart rate, I realized that I was going into cardiac arrest. A parent at the meeting then called 911 and I was soon picked up by paramedics and rushed to the nearest hospital. During that night, my heart stopped and I was resuscitated with an AED. After I was stabilized, I was transferred to Children's Memorial Hospital. I spent a total of nine days at Children's Memorial doing various tests and being monitored. All tests came back negative. With no actual diagnosis, it was decided I would have an ICD implanted and be put on a beta blocker.




Early on, it was difficult to try and cope with my health issues. I felt alone, like no one around me really knew how I felt. With those feelings came depression and anxiety, feelings I still struggle with today. Some time after my hospitalization, my doctor told me about an event in Ann Arbor, Michigan that focuses on patients with devices. I went to this event and it was an eye opener. There was so much support and understanding that I never felt before. At this event one year I met Dr. Webster. There, we discussed the possibility of having an event around Chicago. It was then that Dr, Webster, the Koth family, the Kirl family, and my family collaborated to start up the Chicagoland Cardiac Connections.

The goal of the Chicagoland Cardiac Connections is very simple. Know that you are not alone. There is a whole community of patients, family, and friends that know similar feelings. We are here to support one another and to grow together as a community.

CHEERING ON - BY COLIN ALESSE (Ryan's Father)

My son Ryan was diagnosed with Ventricular Tachycardia in May of 2009. To date, the exact reason has not yet been identified. It had been just over two and a half years before I was able to write about Ryan and share my story in hopes that it will help someone else find comfort. During those first years I could not help but cry when I heard an ambulance siren or feel the deep panic when my sons phone number showed up on my caller ID.

Thursday, May 21, 2009, started out a normal day with our family of five; my wife Jennifer and our three boys Kevin, then eighteen, Ryan thirteen, and TJ, ten years old. Today would test our scheduling skills. Home from work and school with just enough time to eat and catch up with the day's events. Tonight we have to be in three different places with each of the boys. So the plan gets finalized. Jennifer would take Kevin to Career Night at the High School. I will drop off Ryan at Boy Scouts, and TJ will go with me to our Cub Scout meeting. It's a big event for the cub scouts as this is our season wrap up and "Cub-apolis", an Indianapolis 500 race inspired race with seventy-five plus Scouts running laps in cardboard boxes all individually decorated. Weeks were spent planning, preparing and it was finally here. Will it go ok? Will the Scouts have fun? Are the parents going to behave? Sometimes competition brings out the best in some and the worst in others. As the evening unfolds, the excitement and fun is evident in all of the sweaty red faces. The Scouts are rewarded for their achievements and the leaders breathe a sigh of relief as the day comes to an end with out incident.
My cell phone rings and it's my friend Tim on the other end. Hey Colin you better come over to the Church parking lot. Looks like Ryan collapsed from dehydration while playing capture the flag. Be right there Tim. TJ we need to go NOW. Hurrying to the Boy Scout meeting I begin thinking of past events where we have had to keep a close eye on the Scouts from becoming dehydrated. It can easily happen during a day filled with fun. We arrive within minutes and find Ryan laying in the parking lot and looking much worse than I had imagined. As I begin talking to Ryan, my First Aid training starts to kick in without even knowing it. Legs are numb, skin is cold and clammy, and his heart is pounding. He had thrown up all over. I shout to Brian, "Call 911 we need help now." At this point, everyone realizes this is more than dehydration and Ryan is getting worse. The EMTs and Police arrive in minutes. I am pulled away from Ryan to begin to recounting what has just happened. Quickly it progresses to what seams to be a hundred questions. Does your son have a past history? Where has he been? Do you know if your son is taking drugs? This looks like he may have taken Ecstasy. You know, "E" is becoming a real problem with teens. No Ryan is not into that and we know his friends. That's not it. What is going on? Ryan is now on the stretcher and in the ambulance. We are going to take your son to Northwest Community Hospital and figure this out. Both the ambulance and I speed off. Please pick up, please pick up. No answer. The sirens wail on ahead of me. Is this really happening? What's going on? The ambulance makes it there well before I do and now I struggle to find out where to go.

Fear now begins to take its hold. I am frantically trying to reach my wife and son Kevin at the High School. Once, Twice, Three times. The calls go unanswered. Why won't you pick up? The school is notoriously known for being a cell phone dead zone. Tim, can you take TJ home with you. I am going to the hospital and I can't get a hold of Jennifer or Kevin. You got it. No worries take care of Ryan. Thanks.

Are you Dad? Yes, yes I am. That's my son. They begin cutting off his remaining clothes with a whole team scrambling around his bed hooking all sorts of instruments to his body. Your son arrested in the ambulance ride over, but the EMTs were able revive him. Again, I have to describe what lead up to this, past histories, drug use. What's going on?

He's crashing again. It's like I am seeing a medical program on TV as I watch my son intubated, followed by CPR, and injections. Everyone, CLEAR. Dad we need you now. The nurse grabs me by the arm. Dad you stay here by his foot and keep taking to him. You don't let him go and we will do our part. Keep talking, he needs to hear you and let him know it's not time for him to leave. The doctors continue doing CPR, assisting his breathing, and increasing the levels of the defibulator with each shock. He's flat lining and nothing is working. I was just cheering my youngest son to win a race, now I am cheering another son to live. Ryan you need to fight. You can do it. I am here with you. Keep listening to me you can do it. Fight Ryan. Fight. Twenty minutes' pass. The nurse calls out, "I got a pulse. He's back with us. It's getting stronger." You did it Dad. He heard you. Great job. I am shaking uncontrollably at this point. Relief. Ryan is stabilized. I have to get a hold of Jennifer, still no answer. Finally, I get through. What? Where are you? At the hospital? Are you sure he's ok? Just get here quickly.

My wife arrives and again the story gets repeated. Now the doctor joins us and giving us even more details. We need to transport your son to Children's Memorial Hospital so they can figure out what caused this. It's decided that my wife will go in the ambulance with Ryan and I will follow. Ok. Now where is the rest of the family. Hurried calls are placed to my Mom, Kevin, and Tim. I need your help. We don't know what exactly is going on. We'll call you as soon as we find out something more. Now almost midnight, I managed to call my best friend and tell him what has been going on. I totally break down and am sobbing in the car while driving. I have no idea how I made it down to Children's Memorial hospital without getting into a car accident. Arriving at the hospital I head to the ICU where the doctors began trying to figure what caused Ryan to go into cardiac arrest. At two thirty in the morning, Dr Raj sat on the floor at our feet as we listened to him explain what had happened and what they are going to do. Looks like Ryan is stable, but we are going to keep a close eye on him. How unbelievably compassionate Doctor Raj is looking up at us assuring they will do everything they can. My wife and I hold each other and look at our Son. Is this really happening?

In the days that follow test after test are performed each one coming back negative. Great news, but what caused this? After nearly a week in the ICU, it is determined that because Ryan had a recorded EKG showing his heart beating at over 300 times a minute, the best course of action is to have an Implantable Cardiovertor Defibrillator, ICD, surgically connected to his heart and start a course of medicine to allow him to heal and lower his heart rate. Ten days and finally Ryan is released from the hospital with medicine, rules, and follow up visits scheduled. More information and events have transpired then we could possibly absorb. So much information is readily available on the internet. Finding out as much as possible about the functions of the heart, causes of arrhythmias, potential reasons, brings a level of comfort and control. Seeing Ryan alive, smiling, and looking perfectly fine except for the four-inch-long scar on his chest quickly snaps me out of dwelling on all that has happened. It is clear early on that there will be no way I can be with Ryan at all times so we make sure he can answer any question about his condition.

In November 2009, Ryan is at a youth group meeting when I receive another call. Colin the ambulance is on the way. Ryan is awake and talking but his ICD went off. We follow the protocol taught to us and call the cardiologist and then go to the hospital. One of the he EMTs recognized Ryan from May and they are able to catch up on what has happened since then. Ryan is in control with the help of his ICD. It is confirmed as an appropriate shock. We are released from the hospital after checking that the lead wires are ok and the device is working fine. We decide to have genetic testing done with hopes that it would reveal why. No luck. Negative. Ryan continues to amaze us how strong he is physically and mentally. Ryan is not the typical baseball playing type of boy. His interests were always more artistic in nature and he started planning the Alto Saxophone in junior high. Marching Band in High School is his love. In July 2010, during summer training for Marching Band, his ICD goes off. Again, we are back in the ICU to see what is going on and why Ryan keeps having arrhythmias. More tests. All negative. Ryan's medicine is switched up to include a calcium blocker along with a beta blocker. With this new combination and the ICD, it is our best bet.

Ryan has been seeing a therapist since March of 2011 and we are continuing to heal, grateful each day to have all of our children with all of life's ups and downs. In October 2011, we were able to go to a support group / conference in Ann Arbor, Michigan, the Young ICD Connection, and take another step forward. Next year Ryan hopes to tell his story and meet more people like him. In the beginning we were not sure that Ryan would have any kind of a future. Today, our doctors seem like family and check-ups are more like reunions. As a parent, I will always have concerns, but now they are pushed to the back of my mind by hopes and dreams; watching our son grow, learn to drive, graduate, go off to college, and beyond. I am so grateful for all those around us and those who we have meet throughout the years.

During 2011-2012 many of the life changing stories being told were collected by Helen McFarland, RN at University of Michigan Hospital and eventually published in a book, "ICD Connection: Living with an Implantable Cardioverter Defibrillator: A Collection of Patient & Family Stories". In 2012, Ryan spoke at the Young ICD Connection. That same year Dr. Gregory Webster from Children's Memorial Hospital was the keynote speaker at the event. Subsequently that day, we had lunch together and discussed needing to have a resource like the Young ICD Connection in Chicago. Later that year the Koth, Alesse, and Kirl families along with Dr. Webster began laying the foundation for what is known today as the Chicagoland Cardiac Connections, CCC, Chicagoland's first community for children and young adults with pacemakers and implantable cardioverter-defibrillators (ICDs). We continue to grow each year and help connect young patients to others like them.

This story originally appeared in the book, "ICD Connection: Living with an Implantable Cardioverter Defibrillator: A Collection of Patient & Family Stories" by Helen McFarland, RN and published by MPublishing, University of Michigan Library, 2013.


ABBY HACK

My name is Abby Hack. I am 17 years old and a pacemaker recipient. I first started having heart problems when I was just two when it was discovered that I had a minor atrioventricular block. For those of you who aren't cardiothoracic experts, this meant that the chambers of my heart weren't communicating properly. My condition was fairly unconcerning at the time so we held off initially putting in a device. After years of habitual trips to the cardiologists, my condition seemed to be improving to the point where there was barely any issue. This all changed the fall of my freshman year. I had just begun to take up swimming and was at my first real meet when I felt this sharp pain in my chest. Concerned and in a great deal of pain, I was unfortunately forced to stop my event and sit out for the rest of that night. After this occurrence, it was back to the doctor's office for lots of tests and check-ups. Already having to deal with the stress of a new school, the amount of school I had to miss for my appointments made this fall quite taxing and memorable. I was luckily able to finish my swim season that year without many more incidents but I was always a bit afraid to push myself for fear that I would have another incident. In early December that year, it was decided that a pacemaker would be the best option. I was immediately presented with an overwhelming myriad of brochures about what the procedure would be like and how to cope with my new device. After my surgery, I had to deal with the sling that would follow me around for a few weeks and the scar that would follow me around for the rest of my life.


On my 3rd or 4th follow up appointment, I asked my doctor if there was any way I could help kids with pacemakers. I wanted to do this to show kids that having a pacemaker didn't have to be something to be ashamed of and a scar could be an awesome thing to rock. I was then asked if I wanted to be a part of CCC and have been a part of it for over two years now. It has been awesome to be able to take part in connecting kids with others like them and to prove that pacemakers aren't only for old people. I have been lucky enough to almost entirely return to my normal life. I have kept swimming and am approaching my fourth year on my school's team. I had the awesome opportunity to travel to France this past year and even hiked in the Pyrenees Mountains. Having a pacemaker hasn't stopped me from achieving my goals and my time as a member of CCC has helped me demonstrate to others to reach for their goals as well.

KARI KIRL

Anyone who thinks heart disease is an obstacle to a child living life to its fullest hasn't met Kari Suzanne Kirl. She's an inspiration to our Chicagoland Cardiac Connections community, and proof positive of all the miracles today's cardiac devices can provide. Born with a congenital complete heart block, Kari has required a pacemaker since birth.

And as she's grown, she's required frequent device replacements — with surgeries every two to three years. Throughout it all, Kari has maintained her sunny disposition, infectious smile, and positive attitude that she can do all the things other girls do.


Last year at age 14, Kari played on her high school Junior Varsity golf team — placing second overall in her conference. She is trying out in August again and hoping to make varsity.

Kari is also headed on a mission trip this summer with the high school youth group at her church to Nicaragua. She also loves working with children, and is a volunteer in her church nursery. And like any teen, she loves pop music, movies, and hanging out with friends.



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