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

As we continue discussing mental health this month, Courtney Kile shares with us how her experiences as Heart Mom to son Sully impacted her mental health. Please note that this was originally posted in the summer of 2017.

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.

The Unexpected Defibrillator

Growing up with CHD and constantly facing your own mortality is a very scary reality. For many warriors, anxiety can arise from the myriad of worries. Today we’ll hear from Danielle Sikorski, a heart warrior who shares her personal experience and how she tries to mitigate some of the stresses her daily life. Please note that Danielle is not a mental health professional.

For a long time, I’ve had short episodes of non-sustained ventricular tachycardia. They never caused any problems for me. As a twenty-year-old and thirty-year-old, I spent most of my time as a healthy young adult with CHD. Then suddenly one morning, I had a visit to the ER and the doctors suggested that I get a defibrillator. At just thirty-seven years old, I needed a defibrillator. Who would have thought, definitely not me.

I was born with coarctation of the aorta, a bicuspid aortic valve, VSD, and ASD. I survived four open heart surgeries, bacterial endocarditis, a heart attack, and multiple arrhythmias. Despite going through all of that, I had yearly and six month doctor visits. I take heart medications and go for monthly blood tests as ongoing maintenance of my heart condition and have had no major heart problems since my last open-heart surgery at 15 years old. That was until January of 2016. I can tell you a whole different story about my health at that point since that is when the heart problems returned.

As I got ready to go to work one morning, I stressed myself out. The stress triggered an arrhythmia that caused my heart to speed up very fast. I got scared. I quickly went downstairs and sat on the couch. My brother ended up taking me to the ER when my heart rhythm did not slow down. When I got to the ER, they said my heart rate was at 190 bpm. The ER could not slow my heart down with medication, so they cardioverted me and then sent me off to another hospital to get a defibrillator implanted. Cardioversion is when they shock your heart with an external defibrillator to get it back to normal rhythm.

When I first got my defibrillator implanted, I was in shock.  I was not ready to have a defibrillator. I thought to myself, “I’m not old yet. I still have to accomplish things in my life before my health declines. Why go to such drastic measures to protect my heart?” I know the doctors were just trying to protect me and do what they thought was best for my heart,  but still I reacted in anger. Even after the defibrillator procedure, I thought to myself “Was that all a dream? Did that really happen to me? Do I really need this defibrillator?” I felt almost guilty for having one, like this shouldn’t have happened in the first place. I blamed myself for getting stressed out that morning and thought I could have done something to prevent it. I thought maybe the arrhythmia was just a rare occurrence and would probably never happen again. Of course, now I realize that I was wrong and really did need my defibrillator.

It has been three years since I got my defibrillator implanted and I have had two shocks from my device. After each shock, I became fearful and anxious about what would happen to my heart in the future. Of course, I was scared of the possibility of future shocks. I decided to get an ablation to decrease the chances of getting shocked and having to come back for office visits.  Ablation is a heart procedure where they thread catheters to your heart and burn off the cells that are causing the arrhythmia’s. If you have ever had an ablation before, you know they are not fun. I suffered from extreme anxiety just before the procedure. After the procedure, you have to lie flat on your back for many hours before you can move around or get up from your bed. This is to prevent bleeding at the sites where they inserted the catheters.

After the ablation, I found out that the doctors ablated seven different areas in my heart that were found to cause arrhythmia. Knowing this, I am glad that I had the ablation, in that the more cells they burned off, the less chance I have of being shocked by my defibrillator and a lower chance of needing ablations in the future. During the procedure, they found scar tissue in my heart from a previous heart attack.  That scar tissue is from one of my open-heart surgeries I had when I was a teen.  It was surprising to hear that something that happened years ago can cause more damage years later. As CHD patients we are never permanently fixed and will need to maintain and watch our health.

A few months ago, I had another arrhythmia that sent me to the ER. My heart rate was racing at 165 bpm. It just kept beating like that for hours. I was cardioverted again, this time with my defibrillator and had yet another ablation. This time the doctor targeted the area that was causing this specific arrhythmia. I don’t know what triggered the arrhythmia, but I think it could have been one of three things: stress I was experiencing at work, a bad cough or the cough medicine I was taking at the time of the arrhythmia. One ablation was not enough, and during my follow up appointment with my doctor, I found out that it’s not possible to get rid of all the cells in my heart that can cause arrhythmia. What a bummer. I now knew that this was a problem I would live with for the rest of my life. My case was a more complicated one. I saw a new electrophysiologist for a second opinion.  I wanted to find out if there is anything else they can do to prevent the shocks and ER visits in the future. I wish to be prepared for them should they happen again.

The doctor seemed very optimistic about my condition, but again, they cannot guarantee any outcomes because there are still cells in my heart that can cause arrhythmia. They turned off the pacing of the lower chambers of my heart because I have a good heart rhythm on my own without the pacing. The doctor said that the pacing could even trigger an arrhythmia and that they might be able to get me off the anti-arrhythmic medication if I do well in the future.

Many thoughts go through my mind about my heart condition, about what happened in the past, and about how to proceed in the future. Since I’ve had the shocks, I’ve gotten over feeling bad about the defibrillator. Instead, I feel grateful that it is there to save my life. I was still getting worried and anxious about the future and am struggling with uncertainty. I wonder if any shocks or ER visits will happen again. I wonder if I can pay my medical bills or get financial aid and if I will be able to keep my health insurance. I wonder what will happen when I find a new job. All these worries can be a headache. My life would have to include some changes going forward. I think someone who has been healthy for a long time, like me, could only react with anger and fear. It was a loss of good health. Even if my heart was fine most of the time, on a rare occasion, my heart was not okay and needed that protection in case my heart ever decided to go into a dangerous arrhythmia or cardiac arrest. This was something I had to adjust to mentally and emotionally. When I first got my defibrillator, I was going through the stages of grief. It was a big change and big changes can have an emotional impact on you.

I learned that some things in life are just beyond our control. We need to just let go of those things. Instead we need to focus on the ways we can take action to fix the problems that are within our control. When faced with such a serious health problem, it’s only normal to have feelings of worry, doubt, and depression. I will always have CHD, but that doesn’t mean that I should let it control me and my life. We all want to live happy normal lives like people without a chronic condition. We all want to work, spend time with family, take care of them, enjoy hobbies, and go on vacations. We all must continue to live normal lives while dealing with any medical problems that come our way throughout the years because of our CHDs.

Health issues can add stress to our lives because not only do we have every day responsibilities to take care of, but we also have the responsibilities of our health conditions and medical problems. We have to do something to help us keep everything in balance or else it can overwhelm us and potentially cause new issues, such as the stress I experienced that caused my first arrhythmia.

Creating balance in life truly does help. If we focus for too long on a problem, it’s easy to become depressed and anxious. We cannot avoid the problems all together though. It is important to spend time learning about our conditions so that we can better advocate for ourselves and come up with challenging questions for our doctors. This helps us to be able to share any health concerns we experience. Education and support can help get rid of feelings of anxiety and depression. The more we know about our conditions, the more we discuss them with our doctors. This helps us to reduce anxiety.

I was happy that I met with another electrophysiologist about my arrhythmia issue. It gave me more time to talk and ask questions. I have more peace of mind about everything that happened to that point in time. I also got reassurance that the medical professionals would be there for me if anything were to happen with my heart or my defibrillator in the future.

For me, it was also important to allow time away from the problems. I take care of my own sense of well-being and perspective on life, which is helping me to have less anxiety. I try to do things that bring joy into my life, like focusing on my hobbies or spending time with family and friends. I give myself permission to do these and to feel good about doing them. Seeking support and being part of communities like the Pediatric Congenital Heart Association (PCHA) has helped me to get my mind off my own problems and focus on helping others. Heart support groups like PCHA, along with volunteering for non-profit organizations,  such as my church community, have helped me maintain my work-life-heart balance.

Our conditions, symptoms and the traumas we have been through cause scary and negative emotions and reactions. We could end up with anxiety and depression, grief or Post Traumatic Stress Disorder (PTSD), some of the more common mental health problems people with CHDs face.

We must learn how to deal with these emotions in a healthy way so that we can continue on with our lives on our terms. Finding balance within ourselves and our lives, along with the right attitude, education and support can heal us emotionally and give us strength. Looking back at my diagnosis and all I have been through medically, I am amazed that I am still alive and well.  It is amazing what medical technology can do today. I am grateful that it exists along with all the medical professionals who are working hard to provide good healthcare so that I can still be here today. I remain hopeful to live a full and long life. But without the medical technology and  medical professionals, this would not be possible.

Provided below is a list of activities that I have tried and have found to be helpful when faced with feelings of anxiety and depression.  Most of the time, when I am aware of how I feel and I am proactive about changing how I feel, I start to feel positive and happy again knowing that while my CHD can sometimes bend me, it can never break me.

1. Gratitude Journal – Focus on the positive by writing down three things each day that I did that were positive and then reflect on those three things

  1. Adventure Blog –My high school friend,Cortland Grzy-Mader, gave me the idea to start a blog and write about adventures that I had planned. The adventures can be as simple as reading a good book, cooking a new recipe,or visiting someplace new. Once I was finished with my adventure, I wrote about it in my blog in my free time.
  1. Yoga / Exercise – Yoga strengthens and stretches your muscles and makes them more flexible as you place your body in different positions. Sometimes yoga is done with a focus on breathing. I always feel more relaxed and calm after a yoga workout. Exercise in moderation can be good for your heart and help you to be active but always check with your doctor first to make sure how much exercise is safe and healthy for you.
  1. Prayer / Meditation / Meditation Apps on your phone – Faith and prayer can give you a sense of hope, meaning and purpose for the future. Meditation helps to slow or stop the negative thoughts in your mind and shift your focus to breathing and more positive thoughts. This shift in focus can give you a sense of peace and calm.
  2. Visiting communities and support groups – A great way to meet others that you can relate to is through support groups, heart groups or church. There are a lot of CHD and heart-related groups on Facebook where you can post messages and get to know others with similar heart problems. There are also groups that you can meet in person by volunteering at different social, awareness or fundraising events such as PCHA and the Adult Congenital Heart Association (ACHA).

6.Visit friends and family –When you get outside of yourself and focus on others, your problems don’t seem as scary anymore. My friends and family help me to set aside my issues. They also support me emotionally through all of my difficulties.

  1. Seeking treatment from a therapist or counseling professional. If negative feelings persist and nothing else seems to be helping, a licensed professional may be able to better help you sort out your feelings and find an appropriate treatment plan for you. If you are feeling sad and alone or depressed and anxious, don’t be afraid to reach out. Many workplaces offer employee assistance programs and health insurance may cover certain therapists or mental health services.

Note: I am not a mental health professional and I am only speaking from my own experiences with CHD and mental health.

Danielle Sikorski is from the suburbs of Chicago, Illinois. She was born with coarctation of the aorta, a bicuspid aortic valve, VSD, and ASD. She survived four open heart surgeries, bacterial endocarditis, a heart attack, and multiple arrhythmias. She has a mechanical aortic valve and a defibrillator. Danielle will be starting a contract position as an Administrative Operations Specialist. In her free time she likes to volunteer with Toastmasters, PCHA and church, exercise, read good books and spend time with friends and family. 

Action Alert: Tell your Senator to Sign-On

In December 2018, the Congenital Heart Futures Reauthorization Act became law.  The law authorizes, or allows for, $10 million in research, data collection, and awareness activities at the CDC over the next 5 years.  This is 2.5 times the current funding of $4 million.

Therefore we need to strongly advocate for full funding of the $10 Million in the budget for Fiscal Year 2020, or FY2020.

We recently asked you to engage your Representative.  Now it’s time to ask your Senator to sign their name to the Dear Colleague Letter that is being circulated in the Senate.

 


Email your SENATOR, today!  (Remember, you can email their staff, too)

Here’s how:

1. Find their contact information

You may have it on a business card

You can visit Senate.gov to get the phone number. You can call and ask for the email address of the Health Legislative Aide

2. Send a brief email – edit the final paragraph to represent your relationship to CHD

Dear xxx,

I’m writing to ask you to support our congenital heart disease appropriations request for the CDC. We urge Congress to provide, as authorized by the Congenital Heart Futures Reauthorization Act, full funding of $10 million in FY2020 to the Congenital Heart Failure program at the Center for Disease Control and Prevention’s National Center on Birth Defects and Developmental Disabilities to support surveillance and awareness activities to address the public health impact of congenital heart disease across the lifespan.

You can show your support, today by adding your name to the Dear Colleague Letter being circulated by Senators Durbin and Young.  You may do so by contacting Max Kanner (Max_Kanner@durbin.senate.gov) in Durbin’s office.

Here is a link to the sample letter: https://bit.ly/2Ue00kO

As a constituent and patient with congenital heart disease (parent of a child with CHD / sibling / friend) thank you, again, for your support!

Sincerely,

(your name)

Head and Heart with Dr. Creel

For the month of April, we are exploring mental health, and what mental health means for a CHD family.Today we’ll hear from Dr. Creel, a Certified Grief Recovery Specialist, as she shares her experience with CHD families.  

Fifteen years ago, when I first began my work in the field of working with heart patients, both young and old, I met with a family whose 7-year-old son and 12-year-old daughter both had to have pacemakers implanted. The diagnosis came fiercely and suddenly and the parents were understandably devastated, anxious and scared. I soon realized that as rapid as the diagnosis was given, there were major changes that the family were making, deciding to home school both children, selling their home and moving closer to the hospital, and mom deciding to quit her job were just a few. Not having much experience in this area I realized that this family’s world was turning upside down quickly, and it was quite obvious, to me anyway, that everyone in the family was feeling out of control, helpless and more importantly that mom and dad were trying to feel in as much control as they could by making personal choices and changes. Ironically both children were calm when they were not around their parents.

This was my first introduction to families dealing with heart conditions. As I realized then and I realize today day after day, after working with thousands of families, dealing with a medical diagnosis, whether it be preexisting, a new diagnosis, a fetal diagnosis, or a terminal diagnosis, the journey is a personal and very private one.

My role in working with families has been an incredible, fantastic, painful, exhilarating, enlightening and humbling experience, one I would not ever trade. Everyday I learn from my patients. I learn that it’s okay for my children and parents to be scared, that it’s ok for my children to not want to talk about it, that my parents need to talk about it, and that the fear of death and dying many times looms over head.

I have been lucky enough to see my heart children go through phases in their young lives, first seeing a child from the young age of 4 or 5 up to the wonderful young adult age of 18 and 19 and beyond. Within the past several years I have been privileged enough to be invited into the adult heart world and in the world of parents pregnant with a heart baby and I try and help all transition from one life to a completely different one.

Some of the issues I professionally experience are; Pre surgery concerns, fears of unknown, the number one question I get asked is about pain and scaring, I try and look to the family to see what kind of support there is, children that are sheltered or exposed and what a diagnosis looks like for these children .Post Surgery concerns. I look to see who will be available with recovery and will the child miss school, causing added stress. I also want the schools to have an understanding as to what is going on with the child. And ultimately I look at the communication pathway between child and parent.

There are certain age related pathologies I see with heart patients, From birth to 3 years I see parental concerns, adaptation into society concerns and concerns on the parents part of  the child’s future. From 4 to 7 years I see fear, anger, and feelings of being immortal. From 8 to 13 years I see anger, withdrawn behavior and confusion around having a heart condition. And from 14 to young adult I see sadness, fear, anxiety and worry.

With my heart transplant patients I see that most experience a state of confusion/auto pilot, along with the parents. Many times I see complete acceptance and a sense of appreciation with no pressure. With others I see a lack of acceptance, a sense of “living on borrowed time”.  I see unusual closeness and beautiful connections between mothers and sons and fathers and daughters. And many times I hear that there is a feeling of never feeling satisfied and always having to prove something, a pressure to perform for the donor family.

Many times I wish the family would be extra careful in what they say and when they speak about their child’s condition. Little ears can have big curious thoughts and those thoughts can be very scary when they are misunderstood or not explained.  The psychological perspective with illness and children is that children should be told about their illness on the level they can comprehend. Many parents know if their child worries or gets anxious and this needs to be taken into consideration when speaking to a child about their condition. Some parents forget that a child thinks in child thoughts and are not quite at the adult level of understanding as bright as child may seem. I also encourage my families to never use the word defect. I had an adult patient whose kindergarten teacher told him he had a heart defect and even as an adult he thought he was defected on some level. It was only after we spoke about the impact of this word that he understood that cars, planes, inanimate objects have defects, not people. The relief on his face was priceless.

I find many of my adult patients have hidden dark thoughts of fear of death. More than many of my adult patients and parents of heart kids have a looming feeling that
“the other shoe is about to drop”.  I hear “everything is going so well, it feels strange”. I find that there tends to be depression and anxiety, which many times are 2 sides to the same coin, which often occur within the same time frame, around the unknown and the fear of being out of control. And the desperate need to be in control of something, of anything because it soothes the anxious mind. One out of every 2 people who has had a heart attack experience symptoms suggestive of depressive disorder during or slightly after recovery. Many times the depression and anxiety tends to be contagious and parents and patients have to be aware of their fears and feelings when around others because of this contagious air.  Many times there is an indifference, a guarded or defensive sense with issues around trust and vulnerability. For my adult patients, they know that they look or feel different, that they are no longer “healthy” which causes low energy, low interest in things causing depression and anxiety.

I also find that being in a space of having a child with a heart condition or having a heart condition is a very lonely place. It is a country that unless personally visited, cannot be explained or created in the mind of the visitor.

I stress the importance of clarity through communication, how important it is to talk about fears, and confusion and anger, regardless of the age, or the relation to the patient. Many times the more we speak about something, the more we look at it from different angles, the less threatening it can become. (This is one reason therapy is so vital in some situations). I speak about post traumatic stress disorder and how triggers of fear, confusion and anger (i.e. going to the doctors office, hearing that someone died of a heart condition, your child having a cold and you think is so much more than a cold, siblings worrying about medical appointments), can put you ten steps behind, but the importance of being aware of these triggers and managing them is what counts. I stress the importance of self-respect and respecting all the feelings that come with having a heart condition and the importance of respecting an emotionally heavy heart.

I stress self-care and the incredible importance of taking time to take time. And knowing what feels good because my families and patients for sure, know what doesn’t.  I use my term “strength-o-meter”, in that you have to ask yourself how do I feel today, do I have the strength to accomplish things and to function for myself or my family, for my child or is it a day of relaxation and self care? I stress the importance of speaking with others who have, or will be experiencing, the same journey. No one likes to feel alone or isolated.

But ultimately, and one of the most important points to be understood by everyone I see, is the importance of the balance between illness and health. Balancing the good thoughts with the bad thoughts, the good times with the bad times and the fears of the unknown with clarity and control, this is the key in managing life in and of itself. Acknowledging that one can be  off centered but find their very own balance that works so life can be fulfilled, enjoyed and a life worthwhile living is what I always want my patient, young or old, to hold onto.

 

Beth Creel holds her PhD in Clinical Psychology and is a Certified Grief Counselor.  She has been with the Childrens Heart Center for 15 years where she works with individuals dealing with cardiac issues.  She works with parents who are pregnant and are dealing with an unborn child with a heart or other medically compromised condition, children with preexisting cardiac conditions, newly diagnosed heart patients, emotional issues around upcoming cardiac procedures and death and dying concerns. Dr. Creel also works with adults and children dealing with cystic fibrosis and addresses the complications this illness poses on all levels. In addition Dr. Creel also counsels families dealing with gastrointestinal conditions such as Crohn’s disease, Ulcerative colitis and Celiac disease. Dr. Creel received her combined Master’s degree and PhD in Clinical Psychology at the California Graduate Institute in Westwood, California and received her BA at California State University Northridge. Her background has always been advocacy and education of individuals and families struggling with medical and mental health issues.  Dr. Creels approach in working with families is to identify what the family/patient understands about the medical issue, setting realistic goals for coping and then identify post-traumatic triggers and how to effectively deal with this state of mind. Dr. Creel also has a private practice, The Grief and Recovery Institute where she concentrates solely on grief and loss.