Jenny's Story: PH and Lupus, Fibromyalgia and Sjogren's syndrome

In August 2010, Jenny Klick of Winter Springs, Florida found herself out of breath – she couldn’t even walk to the bathroom. She attributed her symptoms to smoking and her limited airway disease. However, she wasn’t quite sure and went to the doctor anyways. Her doctor ruled out upper GI problems and sent her to a pulmonologist who concluded she just wasn’t taking her Advair correctly. Still out of breath, Jenny goes to a cardiologist. He performed an echocardiogram where he determined Jenny may have pulmonary hypertension. Like too many patients, she was already in respiratory failure and immediately went to the emergency room. 

In order to confirm pulmonary hypertension, the cardiologist performed a right heart catheterization. However, Jenny’s doctor could not complete the procedure because her pressure was too high. Nonetheless, Jenny finally had a diagnosis – Class IV PAH due to the lupus that never really caused her too many problems. 

Though the diagnosing cardiologist noted she would eventually pass away from the disease, he didn’t faze her. Having several other chronic illness including lupus, fibromyalgia and Sjogren’s syndrome, Jenny understood she could not be cured but knew she could continue life with the positive outlook she’s always had. Once Jenny was placed on Revatio and Tracleer, she was released from the hospital and began to feel a lot better and continued life as usual.  

A few weeks later, Jenny made an appointment with Dr. Tarver, a well-known PH specialist in Orlando. Like many patients, Tracleer was beginning to affect her liver and began taking Tyvaso instead. Jenny began feeling better and stopped thinking about her new diagnosis. As Jenny describes, living with PH became her “new normal.”

It wasn’t until Jenny came across an issue of Pathlight did she realize how devastating the disease could be. Soon after, she attended her first support group where she met other patients and caregivers. Months later, she became a support group co-leader and is now in charge of scheduling guest speakers for the group. Jenny loves her role citing “everyone in the PH world is eager to lend a hand and tell their story.” Jenny’s involvement in the PH community extends to her participation in PHA’s 10^th International PH Conference and Scientific Session last summer. There, she met more supportive individuals who directed her to PH Family, a community-operated Facebook page. She remains active with the community on Facebook, PH Central, and goes to the PHA website frequently. Jenny is also a Tyvaso Peer Mentor for United Therapeutics’ Peer Network.

Though Jenny has been fortunate throughout her journey with PH, in January she was hospitalized for a week with a serious respiratory infection. Since then, she reports feeling like “a typical PH patient” as simple task like going up stairs is now very difficult for her. Her doctor concluded her limited airway disease decreased the effectiveness of Tyvaso so her dosage was increased from 12 puffs to 15 puffs though the average dose is 9 puffs. However, her heart rate is still out of control and hopes to find a solution soon. 

It is important to mention Jenny has a strong faith in God and has kept a positive outlook throughout the last couple of years. Though she lives with other serious chronic illnesses, she admits PH has been another beast and is thankful for the support she has received from her family and friends. Her husband especially has been a great caregiver to Jenny and has worked to learn as much as he can about PH. He even called family and friends to talk to them about her new diagnosis so she wouldn’t have to. Jenny knows she is “very blessed to have support and understanding” from those who care about her. She is also thankful for PHA and wishes for a day when she can receive the same great support for her other illnesses. 

By Imani Marks, Patient & Caregiver Services Intern

Based on an interview with Jenny Klick