Finding A Community
Last updated: March 2023
When I was first diagnosed with Postpartum Cardiomyopathy (PPCM) I was very confused, and I felt very alone and uncertain. When I searched for my condition on google, the prognosis was not great, and I could not seem to find any PPCM survivors to connect with. I was the first PPCM patient my cardiologist had ever treated, and I was assured it was a very rare condition. Seemingly alone, I focused on trying not to dwell on my condition. I put all my focus into gratitude – gratitude for my life and for my new twin babies.
My at-home support system
I relied heavily on my family who lived nearby for support. When I left the hospital, I was still on oxygen and I was wearing a defibrillator life vest. My doctor advised that I not be alone at any time so that if something were to happen to me, someone could call an ambulance and then stay with my babies. My family also helped me with grocery shopping and meal prep to fit into my new low-sodium diet, and with taking care of my new babies.
Time went on, and I recovered. My cardiologist had a good team and they worked with others who had more experience to ensure I received the treatment I needed. My body responded well to the medications and diet and my heart function returned to a low normal within a few months of diagnosis. I was grateful! But I was still afraid.
I knew relapse was possible. And while I tried not to think about it, those dark and terrifying “what if’s” would creep into my head at the worst of times. Often while driving or trying to fall asleep. “What if I go into cardiac arrest while I’m driving? Will there be any signs first? Will I be able to crash off to the side of the road to avoid hurting others?”
Finding an online community that understood my heart condition
A few years after my diagnosis I happened to come across someone in a twins Facebook group who also had PPCM, and she introduced me to other Facebook groups specifically for women with my condition! Having this new sense of community gave me hope. I was able to hear from women who had survived decades after diagnosis! I learned that there were women out there who were able to have additional pregnancies without relapse. I saw that there was hope.
Finding a strong community of people who understand exactly what you’re going through can be a huge help! Women are available to listen and empathize with you, as well as tell you when you may need to reach out to your cardiologist to discuss new symptoms.
The importance of finding a heart failure community
Throughout my diagnosis and recovery process, and even long after my physical recovery, having a strong support system both in and out of the heart failure community has been crucial for both my physical and mental health. I feel that the social and physical support offered by my family and friends aided in my recovery by allowing me to rest and heal physically. It also kept my mind more active by providing me with opportunities to talk to people throughout the day.
My heart failure community has been a tremendous support to me mentally in the years following my diagnosis. They help me to understand what is normal to experience physically and support me emotionally.
If you’ve recently been diagnosed with PPCM or even another heart condition, I strongly encourage you to seek support from your community. Whether that community be family and friends, or a group of strangers on Facebook who simply understand your situation – having that support system in place can help propel you through many challenges.
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