Pulmonary arterial hypertension: Kath Graham’s story
Before last September, Kath Graham, 52, was collapsing almost daily and spent much of her time in a wheelchair.
She had severe idiopathic Pulmonary Arterial Hypertension (PAH), a chronic and debilitating condition that affects the blood vessels in the lungs, leading to heart failure. Sufferers feel breathless and lethargic.
Kath began to have regular fainting episodes at the age of 33, following the birth of her second daughter Rose, now 19. At the time, Kath’s GP referred her for tests but they didn’t detect any abnormalities.
Over the next 15 years, Kath continued to have dizzy spells. When she was 49 she fainted ‘three or four times’ in a week, and had swelling in her ankles. “When they did a heart echo they saw the right-hand side of my heart was enlarged. An angiogram showed that there was a lot of pressure in my lungs; the cardiologist recognised it as PAH.”
Doctors told Kath she was in end stage, meaning they expected her to die of the condition.
She needed to have a continuous infusion of intravenous (IV) medications. “It meant having a small pump, which I carried around on an elastic waistband. I had to prepare an infusion in a sterile environment twice a day and put that into a syringe attached to the pump which then infused the drug continuously through a permanent line fitted by the hospital.
“I didn’t have a choice because at that stage I was collapsing every few days. Just climbing out of bed, I would collapse and pass out so I had a sort of love/hate relationship with it. I knew the IV drugs were helping to keep me well until I could get a transplant but they also made me quite sick.”
Kath says the medications, designed to widen the blood vessels, made her skin red and blotchy. She also suffered from nausea, though she’s keen to point out that not everyone gets the side effects.
Heart and lung transplant
I got better and better every day and I pulled through
On 30 September 2013, Kath received a heart and lung transplant. She’d been waiting for the transplant for two years. Kath’s husband, Rob, a financial consultant, had a year off work to care for her and to ensure he was available when the transplant call came through.
“He didn’t want to be stuck in London when I got my transplant call,” says Kath, who’d already had to ‘walk out’ of the job she enjoyed as a primary school teacher.
At first the new heart was not working as well as it should, and Kath was in a coma for the first week following the transplant, but gradually recovered. She says: “I got better and better every day and I pulled through.”
Looking forward to the future
Six months on, she’s enjoying a better quality of life. “I couldn’t really walk very far before I had my transplant; I was using a wheelchair I could potter about a bit and walk a few hundred yards maybe but I had to walk very, very slowly and if we were walking anywhere further I’d use a wheelchair.
“Now I’ve got up to walking about three miles and I’ve got much more energy. Before I had to do just one thing in a day, because that’s all I could manage. I am still recovering but life is so different.
“To have that pump removed was a huge, huge thing. I am on medications now, but it’s nothing like having an IV drug and carrying it around all the time. With tablets you can put them in your bag and take them out.”
One of the best things, says Kath, is being able to have a long soak in the bath, and a proper shower. “I couldn’t have a shower properly because I couldn’t get the line or pump wet and had to bathe around it; I couldn’t just lie in the bath. So in those first days being able to stand under a shower felt absolutely wonderful – and does still,” she says.
She and husband Rob are now looking forward to a week’s walking in the Lake District, and hope to travel abroad in future.
Read about Professor Nick Morrell's research into PAH