‘The most rewarding part of being a PHA support group leader is seeing what a vital service we are providing to patients.’
Debbie Kittel of Gahanna, Ohio, recently started a Pulmonary Hypertension Association support group at The Ohio State University, where she has been the pulmonary arterial hypertension (PAH) nursing program manager for the past five years. Although she spent 30 of her 36-year nursing career in the ICU and cath lab, PH patients hold a special place in her heart. Debbie and her husband Bill have two sons, Russell and Eric, and two labs, Chase and Marley. Debbie enjoys walking the dogs, art, crafts, traveling, reading books and cooking. Her biggest love is baking. She enjoys making sweet treats for family, friends, neighbors and the support group.
By Debbie Kittel
I have connected with many patients on a personal level as I care for them during their journey with pulmonary hypertension (PH). My fellow PHA support group leader, Tiffani Brown, inspired me to get more involved. Throughout the pandemic, I saw how isolating it was for her to be home, unable to work. Because of her parenteral therapy, she was at high risk of serious COVID-19 complications. It was heartbreaking to watch such a young, lively, bubbly person stay in bed all day.
I tried finding ways to get Tiffani out of the house (mostly by walking my dogs), and I can’t believe the difference in her morale and mental health. While walking the dogs and talking to Tiffani, I realized how much a PH support group was needed in our area. Patients need a mental health outlet, and our support group has given many the push they needed to be more social. Tiffani helped set up our group and inspires me to help other patients like her. She has given back to me as much as I have given to her.
Another motivation to start a PHA support group was the misinformation about PH on social media. I want our patients to know what we advocate for and what we don’t. I want patients to understand the medications, what a half-life is, how you can still live an active life with PH, and how to keep yourself out of the hospital. After one meeting, I was totally hooked.
The response to the OSU support group has been overwhelming and our group is growing like wildfire. Participants talked about how vital it was to meet others with pulmonary hypertension (PH) and discuss the issues they face. Patients stated that Our group takes a very positive approach to PH and patients say it helps them recognize they can live a full, active life. Healthcare providers are present at every meeting, which helps our patients know we are committed to helping them achieve their best life.
We have quite the robust agenda coming up. This year, we meet quarterly, but in 2023, we plan to meet every other month. Some of our next topics include traveling with PH, home oxygen therapy demonstrations, pulmonary rehab and exercise, working with PH and disability options, research studies, diuretic management, and how to keep yourself out of the hospital. We’ll also have some open discussions to answer everyone’s burning PH questions.
Informational and fun
During a recent meeting, patients modeled stretchy belts they use to hold pumps, new waterproof dressings and their favorite SQ site devices. Real patients sharing innovative ideas to manage life with PH encourages patient attendance.
At the following meeting, our hospital pharmacist spoke about how to manage PH medication side effects. Patients shared home remedies for nausea, diarrhea and other side effects. We set up a fundraiser with “We Wear Periwinkle for Pulmonary Hypertension” t-shirts so we can fund our big event this year, a low-sodium Thanksgiving meal on Nov. 3.
A dietitian will discuss low-sodium diets, reading nutrition labels and ideas for lowering sodium in your diet. Recipes will be available for everyone to take home. Our low sodium Thanksgiving meal also can be viewed virtually.
For me, the most rewarding part of being a PHA support group leader is seeing what a vital service we are providing to patients with a rare disease. Patients, family members and friends are so enthusiastic about our group because they feel a need to meet and socialize with others who share their concerns. and issues. The support group provides a safe space for that.
I am proud of how big the group has grown and how quickly it has taken off. I never expected so many people to want to join and support our PH patients. Even nurses and other health care providers want to come and share their expertise. It’s been a team effort.
My inspiration comes from my patient and fellow PHA support group leader, Tiffani, as well as the remainder of our PAH team. Scott Visovatti, M.D., the director of our program, supports many initiatives to improve the lives of our PH patients. Elie Homsy, M.D., teaches me something new every day. Laura Mudd Pietrykowski, PharmD, helps me manage transitions and side effects to improve the quality of life of each patient.
They are all so dedicated and make my job a whole lot easier. It truly takes a team to manage the complexity of PH, and I’m proud to be part of that team.