Stephanie second open heart fund

As many of you know in September 2017 I was finally diagnosed with a congenital heart defect after getting told I had asthma all my life and that it was the pregnancy that was causing my heart to fail for the last 8 years I finally had an answer!! I was born with what they call it ALCAPA. It’s anomalous left coronary artery from the pulmonary artery. So all my life that side of my heart wasn’t getting adequate oxygen. The problem is kids typically don’t live past 2 years old if they don’t get it surgically repaired as a baby as there is a 97% death rate. The adults who have had it have went into cardiac arrest and died and they find it on the autopsy. I’m the only adult known to still be living and had open heart to correct it.. well we thought we fixed it all in October when I went through my first open heart surgery. After recovery I felt amazing I could work out with out being so short of breath that I wanted to die and I had energy and then March I started to feel like I was declining again. I ended up in the hospital that month for a week due to my heart rhythm going out of sinus rhythm and I was short of breath just getting out of bed. They had also found out that where he attached my artery is was leaking as it had split open at the suture. So after discharge I was getting more and more symptoms of feeling like my heart was failing again. Well I started having lower left leg edema which is a big red flag for me because it just had confirmed it was and I had never in the 8 years I’ve been dealing with my heart have I had that happen. After many test they had shown my heart ejection fraction rate is dropping at a significant rate. October it was 60% March 9th it was 55% and when I got my cardiac MRI done April it was 40%. It also showed that there is a perfusion problem with the left ventricle . So as much as my cardio team and along with other wonderful doctors who have looked at my case and were willing to help but it’s just to complex for NY. So they have referred to to the chief of pediatric cardiology at Boston children hospital and the chief of cardiology at Brigham women’s hospital. But being I have Medicaid the insurance company has been anything but easy to get them to cover me in Boston. They denied the first attempt and we are in the process of appealing it. I’ve had a few people tell me I should start a page as I am trying to figure out how I’m going to manage everything at home by myself while trying to focus on getting through the 2nd open heart and recovering and actually doing what the doctors say and maybe ask for a little help being I am the only source of income for me and the boys and right now paying for everything and travel expenses to Boston and possibly insurance not covering it, the disability income doesn’t even begin to only touch the cost of my rent. I wasn’t expecting to have another open heart surgery and I appreciate everyone’s support that I’ve been getting mentally and physically. It truly means the world to me. ❤️❤️