by Keiron Mohamed, Program Manager, Patient & Caregiver Services
This information is reprinted from an article first published in the Winter 2017 edition of Pathlight. Pathlight is the official magazine of the Pulmonary Hypertension Association. Packed with medical information, personal stories, pulmonary hypertension news and tips for life with PH, Pathlight connects the PH community with valuable information for living with this rare disease. Become a member of PHA to receive this quarterly publication and other member benefits. Join PHA Today >>
PHA’s monthly patient telephone support line provides a safe space for patients to connect with others who are going through similar challenges. At PHA, we have many amazing people who volunteer their time helping those in need.
Many already know about the different resources available, (monthly patient telephone call, Patient-to-Patient telephone support line, email mentors, etc.) but not many know the smiling faces behind the support group phone line. It is our pleasure to introduce you to Carol Bowling, who has been leading these calls since early 2013.
When were you diagnosed with PH?
I was diagnosed with idiopathic PH in November of 2009. Like most PH patients, I had a long period of many symptoms before being officially diagnosed. I went from being an overworked, stressed executive to a chronically ill patient of a disease that the internet told me would take me in within two to three years. I never went back to work after my right heart cath as my life changed significantly. I was lucky to have a good medical team and the intelligence to not believe everything that I read on the internet. In October of 2010, when my PH became more difficult to manage, I was diagnosed with stage IV non-Hodgkins lymphoma. I continue to do monthly chemotherapy to manage my cancer, and I manage my PH with IV Remodulin and Adcirca. I am blessed that I have been able to find my new normal and cross from surviving to living and believe I am living a good life.
When I was first diagnosed and lying in the ICU, my husband asked my pulmonologist, “When will we be able to travel?” Traveling is a very important part of my life. Since being diagnosed with PH, I have been on seven cruises. My husband and I have a great love of Disney and visit Disneyland and Disney World often. My favorite Disney character is the Fairy Godmother. How did you end up as the voice behind the support line? When I first joined the calls, it was run by PHA staff. After several months, I was asked if I would be interested in leading the calls. PHA felt that it would be beneficial to have a patient lead the calls with support from a PHA staff member. So far, it has been a successful combination.
Why should people join these monthly calls?
Our support group is unique, and each call is different. Since we get many newly-diagnosed patients or patients who have never spoken to another PH patient, I see our calls as a “calling card” to the PH community. Our calls are a safe place where patients who can’t get to another support group are always welcome. I am proud that we have had PH patients from 36 states, Canada and Puerto Rico. We have people in our lives who love us and try to understand what we are going through, but it is really nice to connect with someone else who truly understands what we go through day to day.
What would you like our readers to know about you?
I love leading this group. I am always excited to hear from the patients who join us each month just as I am excited to welcome new callers. I like to say, “Welcome to the family you never wanted to join.” I would advise all PH patients to reach out to other PH patients, and this call is one way to do so. Sometimes as patients we reach out because we need information, support or comfort, and sometimes we reach out because we can be supportive or provide insight from our own personal experiences. Our call is a give-and-take environment. You never know who you might help or who might help you until you call. For more information, please contact gro.noitaicossAHP@troppus.