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Margarita Soto: ASD, PAPVR, 1975

Hello my name is Margarita and I was born with ASD & PAPVR. Also known as, Atrial Septal Defect and Partial Anomalous Pulmonary Venous Return. I'd rather not include my age, but I had my surgery in 1975 at the Children's Hospital in Lima, Peru.

ASD repair was break through treatment in Peru in 1975. They saw other CHD kids at that same hospital die. They heard me cry that I didn't want to die like friends I'd made at the hospital.

They had limited understanding of what was happening to me and they had limited resources. I'm grateful that the Children's Hospital in Peru covered most of my surgery costs- as clearly my parents could not have afforded to have taken me elsewhere. I'm also glad for all the families and friends who donated blood for my surgery. I've always been reminded by my Peruvian relatives that their blood ran through my veins. It literally makes me feel like I carry a generation inside of me and it makes me feel loved and strong.

My ASD repair went fine and I had no further complications and lived a fairly normal life.

However, thirty-eight years after my surgery when walking on the streets of NYC with my 2 year old, I fainted. I thought it was because I was dieting and out of caution went to the hospital to check my head since I hit it on the sidewalk. The hospital found me in atrial flutter and there began my voyage of realizing I needed ongoing follow up care with an ACHD specialist.

My Dr. found a PAPVR which I never knew I had! We are monitoring it and hopefully no open heart surgery will ever be needed. In the meantime for the flutter I've had 2 cardio aversions and 1 ablation.

I'm a mother of 3 kids. All normal pregnancies and natural births. Despite my scar across my chest I was able to nurse all kids as well. Out of precaution I saw a cardiologist with my pregnancies for both me and the fetuses. I was such a champ that on my 3rd baby I even had a home birth.

Since I'm a parent now I can only imagine what they must have experienced. I'm grateful to my parents for treating me as normal as possible as a kid. I've always felt strong and like my heart didn't impede me in life. I saw when I got atrial flutter and needed procedures how much PTSD my parents had around my health.

I try to live a healthy lifestyle. I strive to eat grass-fed free range pork and meat and organic produce. I don't eat processed or fast food. I don't drink more than 1-2 glasses of wine or beer at a time as I feel my heart race.

I like to do zumba and bike ride. I'm not an athlete and struggle to keep at my exercise routine. I wish I'd developed the habits of being active as a child so that they can carry me in adulthood.

I've traveled to over 17 countries with kids. I live in NYC but also have a hobby farm in PA where we grow our own meat and over 100 varieties of vegetables and fruits. I'm an avid knitter and in our family we take Halloween very seriously. I'm an entrepreneur. My business gives me the flexibility to be around for my kids and to travel.

My energy has changed over the years and it terrifies me so I try to stay active and try to eat healthy. I don't take life for granted.

I love that my ACHD Dr. listens carefully to me and never rushes me. I like that whenever I have a question he and his staff call back right away and help!

I wish someone had told me about ACHD resources. Over the years since my surgery as a child, I'd see cardiologists, out of caution to make sure I was ok. No one ever told me to be followed up by an ACHD or that arrhythmias are common with CHD adults.

I currently do not take any medications right now, but have used blood thinners when in flutter. I use my Kardia app regularly to give myself ECG's and monitor how I'm doing. I'm amazed at the advances of CHD and am thankful to science. I think we should share our stories openly so that we can help many more. We should support politics that supports science and verifiable facts.

I love my Kardia app and gadget. I make doing ECG's on myself with Kardia a regular practice and have caught myself right away when I have arrhythmia. By using Kardia I don't have to take blood thinners or aspirin.

I’d like to end with my favorite quote, "Pon la meta, y despues ves como" (Set your goals and then you will figure out how).


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