Volunteer Profiles

Merle Reeseman

PHA Support Line Volunteer; Online Support Group Chat Host; Local Support Group Leader; Special Event Organizer; PHAware Campaign Member; 435 Campaign Member

Merle Reeseman Offers Help and Hope through the PHA Support Line

Merle ReesemanMerle Reeseman is a super PH activist! She advocates for PH research by lobbying her U.S. senators and representatives. She leads three pulmonary hypertension support groups (Mercer, Penn.; Cleveland, Ohio; and Pittsburgh, Penn.), and on top of that, she decided she could do more by signing up to be a Support Line volunteer. She is one of the newest additions to our small but dedicated team of Support Line volunteers.

“I was new to PH when I learned about the Support Line,” she says. “It was comforting to know that someone else knew what I was feeling and had been where I had been.”

Merle’s own experiences have given her a perfect background for helping others. In the past, Merle has trained and taken courses on how to communicate with people and, perhaps more importantly, how to listen. Merle says there is a difference between hearing what someone says and really listening to their needs and concerns.

“Part of being a Support Line volunteer is being able to listen to and hopefully help those who are newly diagnosed and even some who have been around the block once or twice, to let them know they are not alone,” Merle says. “We do understand and we will laugh with you, or shed a tear or two; when patients know this, it helps.”

With each call Merle takes, she truly tries to connect with the caller. For instance, when she receives a call from someone who is newly diagnosed, who feels upset and hopeless, her goal is always to set their mind at ease, help them understand that there is hope, and show them that others know how they are feeling.

“I’m not sure those outside the PH community understand the importance of our volunteer Support Line program,” Merle says. “I mean, a patient talking with a patient — how unique is that? So many have said — and usually with a sigh — ‘you do understand, you know what I am going through.’ That concept alone is a relief as well as a release for them.”

Both on and off the phone, Merle continues to help fellow PH patients. She speaks out about PH through the media, both locally and nationally. She speaks annually at the Cleveland Clinic Symposium in November, and has spoken at numerous PHA patient education events.

Merle in her own words

What was your most fun or most memorable call?

Oh, there are many, but I guess the most fun call was from a lady who was newly diagnosed who said that PH was interfering with her golf game. She was 93 years old! She had a wonderful sense of humor. She wanted to know more about this disease and what to expect. We laughed about the golf issue; that just tickled my funny bone.

Can you describe a call where you believe you really helped another patient?

Once again, there are many but I can think of one. I received the call on a Saturday evening. A newly diagnosed patient was not having good results with her oral medication. She wanted to know when it would start working. She wanted to stop taking it, just give up and throw in the towel. She had tried to call her doctor, and then her pharmacy (turns out she had the wrong number), and because this all occurred during the weekend, no one was responding. Frustration took over.

She found the Support Line number and called. I was able to calm her down some. I asked who sent her medications to her, and I contacted that company (by that time she was too upset to make the call). I explained the situation [to her specialty pharmacy representative], and their nurse called and talked with her. At my request, the pharmacy called me back to let me know everything worked out okay. She would be staying on her meds and would call her doctor first thing Monday morning. I have little notebooks of the calls, and really, all of them are important.

 

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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.