Star’s Story – Pulmonary Hypertension

We have a 9-year-old daughter, Zoe, who up until September of 2012 had always been healthy, active and full of energy. At last year’s first soccer practice, Zoe was having trouble keeping up. Her face was red, her eyes and mouth were a pasty white; you could see her struggling to take a full breath.

Because, I am a home health nurse, I took her vitals and recognized right away that her blood pressure was elevated, oxygen levels were low 90’s and high 80’s, pulse was rapid, etc. During this whole episode, she was talking and wanting to eat. Her vitals soon resumed to normal.

We took her to our local doctor who told us her heart sounds were not normal and that an appointment need to be made with a pediatric cardiologist as soon as possible. Zoe continued to have mild episodes as described above, so we decided to take her to a pediatrician who was unable to find anything wrong. The next week, Zoe’s oxygen level dropped to the 80’s at school, so we took her to the pediatric group again.

There we saw a nurse who was immediately alarmed and called in the doctor that was working late sick call. They listened. When we left that night, the doctor told us what she believed the Zoe’s diagnosis would be: Idiopathic Pulmonary Hypertension.

Two days later, we were at Arkansas Children’s Hospital, where Zoe was prescribed medication to help combat her illness. Day’s later, it was suggested to us that we contact Caring Voice Coalition to see if they would help alleviate some of the financial burden of the medication.

My husband and I have talked about miracles and just truly believe CVC’s assistance was our Christmas miracle. We know in some ways that we have been fortunate – years were not wasted getting a diagnosis for this horrible disease, as it is for so many. We were put in the right place at the right time to see doctors and nurses who truly listened to what we were saying happened to Zoe at times, even though they could not see it happen in the office setting. They, like CVC took the time to care enough to listen and find a way to help.

“Thank you” is not enough to describe what we feel and think, but please know we will never forget or fail to see the significance of CVC’s gift.

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