“I was pregnant when I learnt I had pulmonary hypertension. I was told my only hope was a heart and lung transplant,” says Sue, from Coventry.

She says: “I left hospital a different person. Just getting up from a chair left me breathless and exhausted and my husband had to do everything for me and our three children. The future looked bleak, but I refused to accept that I would not see my children grow up.”

Pulmonary hypertension (PH) is a rare incurable condition where the walls of the arteries supplying the lungs thicken and stiffen or are blocked by blood clots, resulting in pressure on the right hand side of the heart. The symptoms include severe breathlessness, fatigue, blackouts and heart disease. Life expectancy averages six to seven years.

Initially Sue was put on the blood thinner Warfarin while awaiting a heart and lung transplant, but she researched alternative treatments. “I found a trial that involved taking Iloprost, which dilates the blood vessels from the heart to the lungs, using a nebuliser, which allows drugs to be breathed in as vapours. I fought and got on it,” she says.

“The drug eases the breathlessness, though side effects including headaches, joint pain, sickness and stomach upsets,” she says. “But it worked well. I built up some stamina until eventually I returned to part-time office work. It was a huge milestone,” she says.

She used nebulisers for 13 years and three years in, Sildenafil was introduced, which relaxes blood vessels and increases blood flow. Sue responded even better to the combination of both drugs.

Finally work left her too exhausted and she had to leave. “I sensed I was going downhill again and my doctors suggested I started receiving my vasodilators intravenously. I felt it was a step towards the end but I would do anything to spend more time with my family,” she says.

She has been on a 24 hour IV pump for three years now. “Initially it was  hard, especially as my husband died during that time, but for the last year I have felt better than I have for years,” she says. “Now I can do housework and cook – slowly – and even home maintenance. If I have energy I use it, though I am exhausted the next day.”

Sue says: “I have been very lucky. Each person's body responds to PH differently, and I just happened to have the golden ticket. 

“PH treatment options have grown and I have grown with them. I thought I was doomed and now I am looking forward to my 50th birthday.  I would advise new PH patients to stay positive.”