Until 2021, Rosemary enjoyed a healthy and active lifestyle. However, in her 50s, she began to notice swelling in her legs and toes, along with general weakness and decreased energy levels. She initially attributed these changes to ageing, her shift to a desk job, or possibly lingering post-COVID symptoms.
Eager for answers, Rosemary visited her GP in February 2021, where she underwent several inconclusive tests, leading to a recommendation for an echocardiogram (ECHO). At this point Rosemary didn’t fully understand what an ECHO was for and believed losing the weight she had recently gained would improve her condition; unaware that her weight gain was actually caused by fluid retention. After losing weight, she still felt unwell, and in September 2021 returned to her GP who followed through with the earlier recommendation of an ECHO Cardiogram. This revealed that Rosemary had an enlarged heart that had shifted within her chest cavity. “It all kicked off from there.”, says Rosemary.
Having returned home after the ECHO, Rosemary’s doctor called that same evening instructing her to go to hospital to be admitted under a cardiologist.
Rosemary and husband Gerry feel let down by what happened next.
At the hospital, Rosemary was given a blood pressure drug that had no effect, in fact her condition declined. Rosemary was moved to ICU because her condition had become unstable and further tests were conducted during the five days in ICU. “They did every study under the sun, they thought because of my breast cancer history, it was likely cancer somewhere”, describes Rosemary.
While in the ICU, following a VQ Scan, one of the ICU specialists suspected that Chronic Thromboembolic Pulmonary Hypertension (CTEPH) was the most likely diagnosis for Rosemary’s symptoms, but the medical team treating her was uncertain. Rosemary was discharged without any clear answers. A week later, during a follow-up appointment, she was prescribed a different medication and advised to return in six months for her next check-up.
“They sent me home and I couldn’t do anything. I couldn’t leave the couch. It was a terrible time, the kids would go to school, Gerry would go to work, and I’d sit in the chair all day because I couldn’t get up. I couldn’t get up to get water or to eat. I had to wait until they came home to tend to me. I was quite certain I was dying”, says Rosemary.
As a former registered nurse, Rosemary put this time to good use and started researching CTEPH, where she first discovered Pulmonary Arterial Hypertension (PAH) and the five groupings which fit her symptoms. Many of the articles mentioned Dr John Feenstra. “I found out he was at The Wesley Hospital and Prince Charles Hospital, and thought I need to see this guy. I printed my research about PAH and Dr Feenstra and took it to my doctor”, recollects Rosemary. Her GP did not hesitate in organising a referral.
In December 2021, a year after she first noticed early symptoms and 3 months after her condition had become serious, Rosemary finally met the the Prince Charles Hospital’s PAH Team and got the diagnosis and treatment she desperately needed.
Pulmonary Arterial Hypertension is a serious condition characterised by high blood pressure in the blood vessels of the lungs. Unlike regular blood pressure measured in the arm, PAH refers to the pressure inside the vessels within the lungs, which can only be confirmed through an invasive procedure. This elevated lung pressure causes patients to feel short of breath and, if left untreated, can ultimately lead to right heart failure and death.
The diagnosis came as a shock to Rosemary as she had always lived an active lifestyle, “I always noticed, when I’d let my fitness slip a bit, that my heart and lung fitness would always bounce back once I started pushing myself a bit. I always believed my heart and lungs were my ace in the hole”, explains Rosemary.
The Prince Charles Pulmonary Hypertension team commenced her on specific PAH medication, and she saw improvements within days, including an increase in energy levels and a decrease in fluid retention.
“4-5 days later she was a different woman, we had her back”, exclaims Gerry.
The timing of her PAH diagnosis and subsequent treatment allowed Rosemary to regain some of her independence and mobility just in time for Christmas. She was able to actively participate in the festive celebrations with her husband and kids. “I could sit up and open a Christmas present in the lounge room with the family. I tear up just thinking about it.”
Rosemary has recently commenced participation in a clinical trial through the Wesley Research Institute.
“This trial is providing early access to a new treatment for patients with pulmonary arterial hypertension. If this additional therapy is successful, we’re hopeful that it improve the quality of life for patients like Rosemary, by opening up the vessels and improving the blood flow to the lungs”, Dr John Feenstra
Rosemary and Gerry cannot speak more highly of Dr Feenstra and their experience with pulmonary hypertension clinical trials thus far.
The PAH therapy she is receiving alongside the trial is making a significant difference in her quality of life. Although her breathing and energy levels are still affected by walking up even slight inclines and by hot weather, Rosemary has regained a sense of normalcy and is no longer bound to a chair. Rosemary has her independence once again and is getting back to her active lifestyle through an exercise program developed by the PAH physiotherapist at Prince Charles Hospital.
We are hopeful that Rosemary’s capabilities continue to improve and look forward to seeing the study’s outcomes.