She could poke her leg and the fluid would push it back to its swollen shape.
“I could barely walk. I was breathing fine, but my legs were on fire,” she says.
After being told by one doctor that she would need a lung transplant or she could die within two years, Carol got a referral to Toronto General Hospital and Dr. John Granton, Head of the Pulmonary Hypertension Program.
She was diagnosed with pulmonary hypertension (PH), a rare lung disorder where the arteries carrying blood from the heart to the lungs are narrowed. This makes it difficult for blood to flow – resulting in increased pressure in the blood vessels, more strain on the heart and less blood supply to the lungs.
Diuretic treatment helps reduce pressure in the blood vessels by removing excess liquid from the body.
“They wanted to hospitalize me right away and put me on intravenous diuretics,” says Carol. “But I had a three-week-old baby at home. I begged them to find another way.”
The team agreed to put Carol on oral diuretics – two different types that she had to take three times a day. The alternative was successful. “I lost 36 pounds of fluid in less than a week,” she says.
The diuretics (which she is still on but at a lower dosage), along with two oral PH medications to reduce blood vessel pressure, have now seen her stable for several years, though with some limitations.
“You lose a lot of independence,” says Carol. “I take the kids to the park, but I can’t run around with them. I can’t do some of the things other parents are doing with their children, which is mentally hard to accept, but we focus on the things mommy can do.”
Carol says the combination of medication and care she receives at TGH, where she is currently involved in PH-related drug study, along with some fluid and salt restrictions in her diet, has her feeling better and increasing her muscle mass with the help of a personal trainer.
“They’re awesome, all of them, and not just in the pulmonary clinic,” says Carol. “They make you feel comfortable and less scared. I know them now, they’re amazing. If it weren’t for Dr. Granton and the team at TGH, I don’t know if I’d be here.”
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