Wednesday, April 15, 2009

Walking 95 miles for lung recipient's charity: LAM Action

By Alison Anderson PerthshireAdvertiser.co.uk

BRAVE Methven woman Audrey Ferguson is well on the road to leading a normal life again after undergoing a life-saving – and initially unsuccessful – lung transplant last August.

She says a miracle pulled her through the ordeal – a miracle fuelled by the faith and prayer of family and friends.

Now Audrey (36) can look forward to the future. Understandably, however, walking the gruelling 95 miles of the West Highland Way would be a step too far for her, but she will be cheering on the 21 walkers who are undertaking the trek later this month to raise money for the charity LAM Action.

LAM (lymphangioleiomyomatosis) is the rare, incurable lung disease which began to affect Audrey when she was still in her teens.

The disease causes the lungs to waste away, and affects only women. There are believed to be only 120 LAM patients in the UK.

“I’m really touched that my friends are making this gruelling trip to raise money for such a worthwhile cause,” said Audrey. “Just because this terrible disease is so rare, it’s no less life-shattering for patients and their families.”

The walkers – most over aged 50-plus – set off from Milngavie on the outskirts of Glasgow on Monday, April 20, and walk the 95 miles of the West Highland Way in four days to arrive at Fort William on April 24.

Their two-pronged aim is to raise money for LAM Action to help fund much-needed research and also to raise public awareness into the disease, which often goes undiagnosed by the medical profession.

Audrey endured several years of major health problems before she was diagnosed as a LAM patient in 1997, aged 24.

“I had about 10-14 lung collapses until I was operated on in April 1997 to stick my lung on to my rib cage.

“A biopsy taken during surgery diagnosed that my condition was LAM.

“Not much was known about LAM and there was no LAM Action at that time.

“My condition gradually deteriorated. I was on oxygen for 16 hours a day then more or less all the time for two years until my transplant in August.

“I tried not to let it affect me too much, but I obviously had to adapt my lifestyle.”

Audrey was desperately in need of a lung transplant, and after eight false alarms, a suitable donor lung became available.

“I am very appreciative of the donor family for allowing the transplant to go ahead. I hope the family can take comfort from the fact that good and hope for so many people can come out of their tragedy.”

The transplant in the Freeman Hospital, Newcastle, and its aftermath were worrying times for Audrey, her husband Adrian and other family and friends, and because Audrey only had one lung transplanted, she still knows her other lung is affected by LAM.

“The operation itself went well but there were a lot of complications.

“The new lung just did not work and for the first 24 hours it looked as if I would not pull through.

“But miraculously the lung did start to work after a second investigatory operations.
“We are Christians and people were praying for me all over the world so I believe it was a miracle.”

After that life-saving second operation, Audrey remained in Intensive Care at the Freemantle for 25 days and it was to be early October before she arrived home, with still a long recovery process ahead of her.

“Adrian and my mum and dad, Anna and John Campbell, stayed down in Newcastle for the full seven weeks. It was a worrying time, but when I started to make progress it came quite fast.

Audrey even had to learn to walk again as well as gradually increase her lung capacity and general strength. Her recuperation continues and life is creeping back to normality: “It could be two years before my lung reaches full capacity but at the moment I can live a pretty normal life.

“We’ve even booked a summer holiday, our first for quite a few years!”

Audrey would be delighted if a cause and/or a cure could be found for LAM. “LAM arises from a defective gene but no one knows what causes the defect.

“And LAM Action are involved in ongoing drugs trials, but it is difficult to get funding for research because it’s such a rare condition.

“Since LAM Action was set up doctors and consultants know much more about the condition and patients are diagnosed quicker.”

The charity also provides valuable support networks, which Audrey asserts certainly helped her. She hopes people will rally round to sponsor the West Highland Way walkers, who aim to raise £2000-plus for LAM Action.

To sponsor the walkers visit http://www.justgiving.com/overthehillwalker and to find out more about lymphangioleiomyomatosis go to http://www.lamaction.org.

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