We live in Houston Texas, and my daughter’s name is Shaye. She is 9 years old, and was diagnosed with pulmonary hypertension (PH) back in February 2010. Shaye had been having symptoms of dizziness, heart palpitations, fatigue, nausea, chest pain, and headaches and was diagnosed back in 2007 with extreme anxiety and ADHD. She was put on Focalin XR for her ADHD, and stayed on it for approximately 2 years until she began telling us that it made her symptoms worse. We immediately took her off of it.
When we took her to the doctor and asked about her symptoms, we were told it was due to her anxiety and it was extreme. In February of 2010, she fell at school and the doctor sent her to the hospital for x-rays of her back and chest. We were called and told to take her to Texas Children’s Hospital right away. The doctor there told us he heard a murmur and he was going down to look at the x-rays. He came back and said her heart was enlarged, they wanted to run more tests, and they were going to admit her.
The cardiologist came in and talked to me and said he wanted to do an EKG, which she failed. They did an echo and the next day told us they suspected PH. We had never heard of it before, and really thought it was something that could be fixed with medication or something. They sent her home and a couple weeks later she had to go back for a heart cath. The heart cath showed her pressures were in the severe range. She is now taking Tracleer as well as Coumadin. She has been having symptoms, but the Tracleer just started, so we are hopeful that it will work.
In this short time, all of our emotions have run so high. Our hearts are heavy, but with the support of the PH family, I have learned so much I don’t know what we would have done had it not been for the PH website and all the support from other parents and families that are and have gone through this same journey. I do believe there is hope. She is seeing an awesome team of doctors at Texas Children's Pulmonary Hypertension Clinic. I was awarded a scholarship for the PH conference in California in June and I am looking forward to going to the PH conference this year and am ready to take it all in and be an advocate, not only for my daughter, but all the other PH patients out there and spread the knowledge of PH so that other parents can hopefully catch it sooner.
We can fight this. We can spread the word with our stories and words of encouragement; the more people that know the better. Knowledge is everything!