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Patient story

Sandy Wolter

"When you go into a hospital and they know nothing about the medicine you’re taking, make sure they call your doctor immediately and do not let them tell you that you cannot use it while there. Speak up and speak out—it could save your life!"

Hello, my name is Sandy and I have PH & scleroderma, diagnosed in 2004. I live in Florida. I want to ask a question about the Tyvaso I take, and a recent experience I had at my local hospital. This past week I was in the hospital for bronchitis, and I took my Tyvaso with me because the hospital didn’t have it. The hospital knew nothing about the medicine, and I had to fight with the Pulmonary Department to take it. I spoke with the head of the department, and he told me that they wanted to add my Tyvaso to a nebulizer with their meds. It was a scary thought for me, so my husband and I showed them a book on Tyvasco’s use, and how it works. Lucky for them, they got a lesson on a new drug for PH, and then agreed to allow me to take it how I wanted. When my Pulmonologist Dr. Robinson came he said they should have called him first thing and he would have okayed the use of it in the hospital much sooner. He said that he would speak with the Pulmonary Department and write a note on my chart so that the confusion didn’t happen again.

When you go into a hospital and they know nothing about the medicine you’re taking, make sure they call your doctor immediately and do not let them tell you that you cannot use it while there. Speak up and speak out—it could save your life!

I do have a question about my experience. Is there a way to get more info out to the hospital? I’m afraid that no one else will speak up about this. The hospital is the North West medical center in Margate FL. Things are hard enough in my life and to have to fight to take your meds in the hospital is an unnecessary stressor. Is there more that can be done so a patient will feel more secure when away from home and in the hospital?

I want to bring this to the attention of the entire PH family. Thank you for your time and I hope to hear from you.

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.