I had a right heart catheterization and was diagnosed with Idiopathic Pulmonary Arterial Hypertension: a lung disease affecting the pulmonary arteries. The disease causes your heart to work twice as hard to oxygenate and pump blood through these slowly closing pulmonary arteries and eventually leads to heart failure. I am so lucky to be here.
I felt so isolated and searched for others with this rare disease. Over the years online I have met many wonderful patients who welcomed me to a heart warming community full of other Pulmonary Hypertension patients. I wasn’t alone anymore! If I’m going to have an incurable and deadly lung disease I might as well meet some best friends though it!
Every two years Pulmonary Hypertension Association has a conference. Patients, Care Givers, Doctors and Nurses come from all over to speak and learn about Pulmonary Hypertension. It’s also a good way for patients to meet each other in person and truly connect.
Two years ago the conference was held in Dallas, Texas. I was blessed enough to have another Pulmonary Hypertension Patient that couldn’t go want to pay for me to go. I was beyond happy and counting down the days! The night before I was supposed to get on a plane I woke up swollen on my whole right side from the face down. I found out I had a blood clot in my neck. I was transferred to UPenn and that’s when a doctor had to break the news that I wouldn’t be making it to the conference. He told me the placement of the bloodclot could easily cause a heart attack if I got on a plane. I was beyond heart broken. I didn’t know what to do with myself knowing I should’ve been getting on a plane to Dallas. That whole hospitalization was so hard for me especially seeing videos and pictures of everyone meeting each other and having a good time. I was the girl who never made it to conference.
It’s been another two years and this year the conference will be held in Orlando, Florida. I am determined to go this time! Unfortunately I barley support myself. I hate to ask for it but I need financial help and some wonderful Doctors, Nurses and Friends I’ve been pushing me to make a Go Fund Page so they can help out with that being said I’m here and listened to you all! This conference will help me learn about my disease, participate in studies and meet those people I’ve connected with. There is airfare, hotel, and conference registration to consider which is 175. I never thought I’d make a go fund me for this but so many people have already wanted to help get me there I decided I should. Thank you so much to anyone that read my story. If you can donate anything I’d be so grateful. Even if you can just share this page I’d be so appreciative. Thank you again from the bottom of my heart,
- Orlando Melendez
- Whitney Carullo
- wilfred Melendez
- Nicole McClelland
- freddie melendez
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