Patient Mentor Spotlight
PH Email Mentors are patients and caregivers from all over the world, standing by to help patients, caregivers and parents through one-onone, email-based support. Merle R. is one of those mentors, and she shares a little about herself now.
What’s your PH story?
It took me one-and-a-half to two years to be properly diagnosed. I wasn't feeling well, but my father had recently died and 9/11 had happened, so I thought it was stress. One of my daughter's friends, who works for a doctor, said to me, "You look like you need to see a doctor." So I did, and he ran all kinds of tests. The tests showed that the left side of my heart was strong, and I didn't have asthma, so he decided it was stress. Then my daughter begged me to see a cardiologist. The cardiologist had just come back from a seminar where he had learned about pulmonary hypertension. He sent me to a PH center where I went through all the tests again, and I was diagnosed with PH.
I was put on an oral medication, but it didn't work for me. I participated in several clinical trials, but nothing was working and my PH progressed quickly. One of my PH nurses suggested I try FlolanTM, the only other treatment available at that time. I've now been living with PH for 10 years and have been on PAH medications for more than nine years.
Why should someone email a PH Mentor?
Communication. To be able to vent if you need to, to be able to share your feelings, to ask questions about how you cope with PH. When I was new to the PH world, it was very scary. Support is so necessary, and being able to share or vent is so very important - and doing it with someone who totally understands what you're going through is better yet.
What's your best advice for others living with PH?
Learn how to smile; smiles are contagious. Having a positive attitude is also very important. Remember, even healthy people have "bad" days. You have to learn how to do things you enjoy, whether it's reading a book, watching a special TV program or movie, going for a walk if you can, knitting, having a hobby - something just for you.
Although PH is a very scary disease, it is a very doable disease with the proper treatment. And we must always remember that there is hope.
What does being a PH Email Mentor mean to you?
I am a person who needs people and needs to help other people. Since I can't always get out, the computer is my lifeline to the world. Being able to be a part of it, and hopefully being able to help someone along the way, is a plus for me.
Read Merle R.'s Patient Mentor Profile (Sign in required)
Disclaimer: PHA PHriends are available to provide hope and support to PH patients and caregivers. They are not intended to provide medical advice on individual matters, which should be obtained directly from a physician.