Patient-to-Patient Support Line Volunteer Profile

Rita OrthRita Orth

Diagnosed: 1999
Patient-to-Patient Support Line Volunteer since: 2006

For years, I thought my difficulty breathing was because I was overweight and needed to exercise more. However, in 1999, I was diagnosed with PH. I was overwhelmed and fearful, so I began looking into resources at PHA. During the first few months of being diagnosed, calling the Patient-to-Patient Support Line helped me through my toughest times. My outlook on my diagnosis changed, and I felt a new hope.

About six years ago, I decided I wanted to become a Support Line volunteer because I was very passionate about helping patients and giving them the same support I was given years ago. I’ve been living with PH for more than 13 years. Prior to that, I was a nurse. My role as a Support Line volunteer has allowed me to continue to help others.

As a Support Line volunteer, the calls I receive deal with a multitude of issues and a variety of emotions. Sometimes I’m crying with the patient; other times there is a lot of laughter and gratitude. I believe my role as a Support Line volunteer is to alleviate the fears and anxiety of patients.

PHA asked me about my experiences as a Patientto- Patient Support Line volunteer, and here’s what I said:

Why should someone call the Support Line?

There are many reasons a patient should call the Support Line. If you feel you need more information about PH, need a shoulder to lean on, can’t seem to find anyone else to relate to, want fears to be taken away, need support, or encouragement … you should call! Maybe you are a family member who doesn’t understand PH or why your loved one looks normal, but is actually very sick … Call in!

Have you ever had a memorable experience on the Support Line?

One time I was on the phone with an individual who was a bishop of a Mormon church. He was a very nice man but was having a hard time adjusting to getting help, as he had just been diagnosed with PH. It became clear how overwhelmed and depressed he was. After he was on the phone with me for a few hours, his entire demeanor changed. Being a Support Line volunteer, you hear many times how grateful someone is, but hearing it from this man saying, “You don’t know how grateful I am” was one of my most memorable experiences.

Did you ever have a caller who affected you emotionally or brought you to tears?

One time I had a caller who was a woman in her early 30s. She just had a child and lived near me. The woman was just diagnosed with PH and was absolutely devastated. I tried to lift her spirits on the call, as well as speaking to her husband who was also upset. I invited them to my support group meeting, and after attending the meeting, they told me, “You’ve given us hope; thank you.”

Do you ever feel like you saved someone’s life?

I’ve told individuals that back when I was diagnosed with PH, there was only one therapy. Now there are twelve. I tell them PH is not a death sentence. I also suggest they see a medical professional who has had patients with PH in the past. I stress that it’s important to find a doctor who knows how to treat PH. I tell them to ask the current doctor, “Do you treat anyone with PH?” After giving one individual this advice, he switched to a new doctor the same week we spoke on the phone!

What’s your best advice for others living with PH?

There is hope. I believe the cure is around the corner. Additionally, PHA has so many resources to offer to help you as you live with PH. Join a support group!

By Rita Orth, PH Patient, and Danica Sun, former PHA Volunteer Services Intern

 

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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.