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
- 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.
- 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.
- 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.
- 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.
- 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.