Ther­a­pies and trans­plants of­fer new hope to lung fi­bro­sis pa­tients

The Irish Times - Tuesday - Health - - Health / Wellbeing - Sylvia Thomp­son

Edna Powell (71) was di­ag­nosed with lung fi­bro­sis (also known as id­io­pathic pul­monary fi­bro­sis) nine years ago. It’s a chronic con­di­tion in which the lungs be­come pro­gres­sively scarred un­til they can work no longer. “I felt tired and breath­less, but, ini­tially, I thought it was part of the age­ing process,” she ex­plains.

Powell is an ac­tive per­son who liked walk­ing and swim­ming but no­ticed be­ing par­tic­u­larly breath­less when walk­ing up steps or on an up­hill slope. She was di­ag­nosed with the con­di­tion fol­low­ing a thor­ough phys­i­cal check-up which in­cluded a CT scan and X-ray.

“I was pre­scribed med­i­ca­tion to slow down the con­di­tion but I had on­go­ing in­fec­tions and my lungs grad­u­ally started to har­den up,” says Powell. It got to the stage that she needed to use oxy­gen at night or when she was out and about. She was ac­cepted on to the wait­ing list for a sin­gle lung trans­plant.

“I got the call that a lung was avail­able and I was very lucky that the donor lung was suit­able for me and I was able to have the trans­plant. It is a very daunt­ing ex­pe­ri­ence but re­ceiv­ing a do­nated or­gan is the best present you’ll ever get.”

Re­search

Af­ter a two-week stay in hospi­tal, Powell re­cov­ered slowly at home and grad­u­ally re­turned to swim­ming and walk­ing and part-time work as a psy­chol­o­gist.

She has re­ceived great sup­port from her lo­cal branch of the Ir­ish Lung Fi­bro­sis As­so­ci­a­tion and be­lieves there is a great need for fur­ther re­search into the con­di­tion, which re­mains rel­a­tively un­known.

“I knew that both my mother and my aunt died from the con­di­tion so there must be a ge­netic com­po­nent to it. There is a new regis­ter now for peo­ple with lung fi­bro­sis which should im­prove things.”

The Ir­ish Tho­racic So­ci­ety is the na­tional or­gan­i­sa­tion of health­care pro­fes­sion­als car­ing for peo­ple with lung dis­ease. At the launch of the new na­tional regis­ter for pa­tients with lung fi­bro­sis, Prof An­thony O’Re­gan, con­sul­tant res­pi­ra­tory physi­cian, said that new ther­a­pies mean more hope for those with the con­di­tion.

Re­fer­ral

“Treat­ing lung fi­bro­sis has changed dra­mat­i­cally in the past decade with novel ther­a­pies and an in­creased rate of suc­cess­ful lung trans­plants. Early di­ag­no­sis and rapid re­fer­ral to treat­ment is now more cru­cial be­cause as lung fi­bro­sis pro­gresses, pa­tients’ needs be­come more com­plex.”

Eve­lyn Cooper (77) was of­fi­cially di­ag­nosed with lung fi­bro­sis in Septem­ber 2016. “I was taken aback when it was dis­cov­ered. A scan the pre­vi­ous year had shown a shadow on my lung but my lung func­tion test was okay then,” she ex­plains.

Cooper has many con­di­tions in­clud­ing di­a­betes, arthri­tis, tin­ni­tus and polymyal­gia. “Ini­tially, my re­ac­tion was, ‘not some­thing else!’ Some­times, my breath­less­ness gets very bad when I’m walk­ing but I’m not tak­ing any med­i­ca­tion for lung fi­bro­sis at the mo­ment.”

Cooper is a re­tired nurse and says that the con­di­tion isn’t very well known. “I be­long to the Dublin branch of the Ir­ish Lung Fi­bro­sis As­so­ci­a­tion. We meet ev­ery month. I be­lieve we just have to ac­cept things as they arise. If I have a bad day, I rest up and read and watch the tele­vi­sion. I can still drive and get out and so­cialise and I help my daugh­ter with my grand­chil­dren who I love spend­ing time with.”

Edna Powell and Eve­lyn Cooper

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