By Becca Atherton
I was diagnosed at birth with complex congenital heart disease that caused me to develop pulmonary hypertension. Now 24 years old, I’m transitioning from pediatric PH care to an adult facility. I’ve learned the value of support and resilience, and that this transition isn’t as simple as just knowing my PH type, or what medications I’m on. With new developments in treatment and care, more and more people like me are making our own path as we enter adulthood. For kids and families with PH, I want to offer some lessons I’ve learned along the way (so you don’t have to learn them the hard way!) and maybe offer some insight for those in the medical field or those who don’t know about PH and what patients go through.
First, I’ve found that parents are going to be the biggest support system you will ever have and they won’t leave you. You may be too sick to go to school for long periods of time and your friends slowly stop visiting you – I’ve been there. But your parents don’t leave your side. They are more than just advocates. They become your lifeline, comforters and your best friends. I can say for a fact that I would not only not be alive without my parents, but I would still be struggling with my self-esteem, depression, the guilt I feel of being a burden to my family or all the fears I have about how I’ll be able to live on my own and pay my bills when my parents are no longer here. For all of you working through depression, fear, guilt, low self-esteem or any other type of internal struggle – I’ve been there and, to be very honest with you, there are days where those fears, guilt and self-esteem issues come back in full force. You will not feel great every day, and that’s more than okay. It’s actually normal.
A Hand to Hold on To
I’ve learned in the past few years that there are real emotional reactions to having to transfer from pediatrics to adults, especially for those patients who like me were diagnosed at birth. Suddenly I’m the one signing on that dotted line before each procedure, a daunting realization and reminder of how precious my life is. I’ve learned that, although I may call in my own prescriptions and make my own appointments now, that doesn’t mean my parents are no longer involved with my care. Having an advocate and support system from parents shouldn’t stop just because you turn 18. These are people who know your medical history front and back and their expertise in your health should be seen as an asset to both the transitioning patient and the new adult physicians.
It isn’t “childish” or “immature” to insist on having a parent there to hold your hand during blood draws, IVs and other daunting procedures. I’ve had eyes rolled at me at adult facilities when I insist that my mom be present with me for specific tests. Nurses have tried to convince me that “that’s just not how it’s done here.” This isn’t an acceptable reason as to why I can’t have my much-needed support system in the room with me. If you feel this way, too, don’t let them convince you otherwise! This is your journey and you deserve to be treated with compassion and empathy – even if you are considered an adult and people expect you to just “deal with it.”
Resilience and Health
Resilience is the ability to recover from or adjust to misfortune or change. Throughout my life I have learned that resilience doesn’t just apply to the physical challenges that we as PH patients overcome. To me, resilience has meant making sure my quality of life is as good as possible. My family and I are not constantly waiting for the next medical crisis or living each day in fear of my health. This doesn’t mean I don’t take my health seriously, because I do. I follow my low salt diet, no-caffeine diet and stay off of the beloved roller coasters I used to love to go on. But I have learned that if you spend your healthy days worrying about when your next sick day is coming up, you won’t be able to enjoy the life you have fought so hard to keep. I’ve tried my best, as has my family, to move on the moment I check out of care – leaving the hospital behind both physically and mentally. Resilience and quality of life go hand-in-hand. Last year I was checked into Stanford Children’s Hospital for arrhythmia and fluid retention. And, while the concerns about my arrhythmias and talk of an ablation are still in my mind, I do my best to wake up every morning just glad to be back home and back to what I call a “normal” life.
Wherever you are in your medical journey, whatever you’re feeling or worried about – I’ve been there. And so have others like us! Yes, it is going to be a hard life with more ups and downs than anyone could ever imagine. But you can take these lessons that you learn from others in the PH community and create your best life. I can guarantee you, from one PH patient to the other, that things do get better. You will start to figure things out and learn great coping mechanisms along the way to help you. The most important thing to remember is that you are not alone!