Clare Adams, 45, from Widnes, Cheshire, has been told she has only weeks or months to live after catching influenza while on holiday in Marmaris, Turkey, in summer 2023. The flu triggered a rare and incurable lung condition called pulmonary veno-occlusive disease (PVOD), a severe form of pulmonary hypertension.
Diagnosis journey
After returning from Turkey, Adams experienced severe breathlessness, heart palpitations, and fatigue. She was initially treated for influenza and later suspected of having long COVID. Despite tests and scans, doctors could not identify the cause until November 2023, when she was diagnosed with pulmonary arterial hypertension (PAH). In May 2025, further investigation revealed PVOD, a life-threatening cause of pulmonary hypertension.
According to the NHS, pulmonary hypertension is high blood pressure in the lung's blood vessels, which can damage the right side of the heart. Influenza does not directly cause PAH but can trigger dangerous lung complications.
Devastating news
Adams said: “It was more of a relief that I knew what was wrong with me. But the biggest shock was when the doctor told me that I couldn’t have children. I don’t have any children myself. That was the hardest thing to deal with.”
By May 2025, her condition worsened, and she was given a life expectancy of a few weeks or months. Despite this, she refused to accept the prognosis: “It was obviously a big shock to the system but I just refused point blank. I thought, I’m not letting you decide when I die.”
Treatment and hope
After consulting a specialist, Adams was prescribed epoprostenol, a medication that widens blood vessels. She hopes to receive a double lung transplant to extend her life. “We have had very slight improvements over the last 12 months and along with a massive one stone loss, I'm fighting my way to get a double lung transplant,” she said.
Adams is now in a wheelchair and on oxygen 24/7, wearing a mask because her body cannot retain oxygen. Despite the challenges, she remains determined: “I wouldn't say it's been like a massive fight, but it's been a steady fight of continuously just laughing through everything, working on my mindset and watching what I eat.”
Raising awareness
Adams is writing a children’s book titled My Auntie to explain her condition and raise disability awareness. Inspired by her nephew, who broke his kneecap playing rugby, she co-wrote Auntie Cra Cra and Frankie Go to the Park. She said: “It's really just a book to tell people that even though I look different, I can still do the same things as what a normal auntie can do.”
