When Joan Nemeth could not climb stairs or vacuum her living room without getting out of breath, she knew something was seriously wrong.
Diagnosed five years ago with pulmonary hypertension, the Vernon resident was a non-smoker who had always enjoyed good health.
“I had no idea what it was, but I was under a doctor’s care and I expected a diagnosis,” she said. “One morning I woke up and I could not make it to the bathroom because I couldn’t catch my breath. I went to the hospital, but was told there was nothing wrong with me and sent home.”
After returning to her own physician, Nemeth was referred to a respirologist in Kelowna, who ordered tests that were sent to the lung clinic at Vancouver General Hospital.
“Within three days, I was sent there and given three months to live if I didn’t have treatment,” she said. “So I said, ‘OK, now what do we do?’ My daughter was with me at the time to take notes, and she fainted.”
Pulmonary hypertension is a disease in which the blood pressure in the arteries in the lungs elevates. This puts pressure on the heart and reduces the amount of oxygen that can reach the tissues of the body.
PH is an incurable disease that does not discriminate: it can strike anyone regardless of age, gender or race. The main symptoms are shortness of breath, fatigue, swelling of the feet and ankles and fainting. Without treatment, the average life expectancy with PH is less than three years, yet many patients spend two to three years seeking an accurate diagnosis. PH can develop due to another medical condition, but in many cases, it has no known cause.
Since 1997, seven PH-specific treatments have been approved in Canada, with several others likely available shortly. Thanks to these treatments, many patients live longer and healthier lives.
After an echocardiogram confirmed that she had PH, Nemeth was put on a course of treatment, and the standard is an unusual one: Viagra, taken three times a day.
“I felt better right away and I even went to England and felt wonderful while I was there.”
For Doreen Millar, health issues were not something unfamiliar, as she was born with a hole in her heart, which was repaired when she was 23.
“But I had been fine up til then. It came on gradually and one day I could not walk even half a block,” she said. “Because of my cardiac issues, I was being seen all along by my doctor.”
Her breathing problems became so severe, she was on oxygen all day long and was put on the transplant list.
Fortunately, a meeting with respirologist Dr. Robert Levy changed the direction her life and health would take. Levy is the medical director of the BC Lung Transplant Program and associate director of the Pulmonary Hypertension Program at Vancouver General Hospital.
“He said he could help me and I got in on a drug study, although it did not work out for me, but then I was put on Viagra and it took awhile before I felt better.”
For five years, Millar was on oxygen and during that time underwent her second cardiac ablation, a procedure that can correct heart rhythm problems.
Thanks to her treatment, Millar is now able to enjoy her daily walks — the only time she now uses oxygen.
“And yoga has been awesome and has really helped with my breathing,” she said. “I used to cross-country ski and cycle and now I walk 40 minutes a day and do yoga. My only regret is that I never got to ski with my grandchildren.”
Nemeth said she was given an excellent piece of advice: to stop and smell the coffee.
“So if I’m out for a walk, I take frequent stops to enjoy my surroundings and to ensure I don’t get out of breath,” she said.
She put that advice to good use recently when she travelled with her granddaughter to Ontario on an ancestry tour.
“We walked all over Gatineau, then Ottawa and up Parliament Hill,” she said.
Betty Ross is a retired nurse and a board member with the B.C. Pulmonary Hypertension Society who was charge nurse specialist in respiratory sciences at VGH.
“One of our mandates was to get some support groups going, so I wrote a letter to give to the girls at the clinic to hand out to patients,” said Ross, who is based in Kelowna.
She said PH is sometimes referred to as an invisible health problem, as people who have it often do not look ill.
“Getting a diagnosis is tough because people walk in and say they can’t do housework or go shopping and doctors just think there is nothing wrong with them, that it’s stress, so they are given a prescription for Valium and sent home,” she said.
Retired as secretary with the Vernon School District, Millar said even close acquaintances might not actually believe you are very sick.
And Nemeth said although she has the disabled sticker on her truck, people often assume she’s not ill and should not be parking in the reserved spot.
But she doesn’t let it prevent her from doing the things she loves, one of which is working at Walmart.
“Before I was diagnosed, I would be walking from one end of the store to the other when I was customer service manager and when I was diagnosed, my doctors said if you have to work, don’t work two days in a row.
“My boss was great and said I could be a greeter, sitting in a chair. Now, I just do whatever they need me to do. I can do anything.”
Both women are grateful for the support they get from family: Nemeth from her daughter and granddaughter, with whom she lives.
And Millar her husband, daughter and friends.
“My husband is amazing, he’s a great guy. And I’ve been so fortunate with the medical community as well,” said Millar, who in addition to seeing her GP on a regular basis also checks in at the Pacific Adult Congenital Heart Disease (PACH) Clinic in the Heart Centre at St. Paul’s Hospital.
All are hoping to increase the awareness of PH in the community, a difficult task for what is a rare disease.
“I want family physicians to think beyond the lungs because often they will say, ‘oh you have asthma,’” said Nemeth. “And with this disease, it’s so important to not be alone. When I couldn’t get a diagnosis, it was awful.
“But there is no magic bullet — you try everything to see what works, and you have to have a doctor who pushes for you to get tested and to get treatment.”
For more information on PH and for local support groups, please contact Ross at 250-861-1961or e-mail Br.20@shaw.ca
