When every breath is precious

Dr Joyce Barclay, consultant respiratory physician, heads a team from the Royal Oldham Hospital who treat people with a range of conditions which affect their breathing. One of those people is Jill Mayers. She told her story to reporter Marina Berry to highlight the work of the Breathe Easy support group as it celebrates its 10th anniversary.

Jill Mayers relies on a round-the-clock supply of oxygen to help her breathe.

At just 44 she is unable to go anywhere without her supply.

At home, she is hooked up to an oxygen machine by a tube which pipes the life-saving gas into her nose, and if she goes out she must carry a heavy portable tank which gives her a couple of hours of freedom.

Jill’s condition is down to an often-misdiagnosed condition which mainly affects younger people.

She was diagnosed with emphysema due to alpha-1-antitrypsin deficiency nine years ago after her family begged her to go to the doctors.

The mother-of-two recalled: “I was a smoker, and to be quite honest I didn’t notice that my breathing was getting worse because I had had asthma as a child and was used to being short of breath, and it got worse very gradually.

“I worked for my sister-in-law from an upstairs office, and my husband used to carry things up to the office for me because I got breathless.

“Then one day she called round in the morning when I had just got out of bed, and she was almost in tears.

“I was blue — but I always was in the mornings, and I weighed only 6st 10lbs.

“But I still didn’t think there was anything wrong with me.

“It didn’t stop me doing anything because I didn’t have a lot of hobbies.”

Jill added: “Before I knew it she was back and knocking on the door with nicotine patches and a bagful of build-up drinks, and begging me to go to the doctor.

“I went because all my family was telling me to go.”

Jill, who lives with her husband Glyn and two sons in Shaw, spent four days undergoing tests and was given an inhaler to help her breathe.

She was referred to the chest clinic at the Royal Oldham Hospital, and then sent to see a specialist at Wythenshawe Hospital.

Jill’s weight loss was put down to her inability to eat properly, because she felt like she was choking.

Then the specialist dropped a bombshell, suggesting she was the ideal candidate for a double lung transplant and possibly a heart transplant,

“It was a big shock. I got in my car and first thing I did was light a cigarette,” she said.

“I thought if things were so bad, then what was the point in me trying to stop smoking.”

Jill refused the transplant. She was 35, and her sons were aged 16 and nine.

“There was a 20 per cent chance I wouldn’t get off the operating table, and I felt it was too big a risk,” she said.

Jill’s lung function improved after she stopped smoking.

She gained weight, and six years ago went on an eight-week pulmonary rehabilitation course and was put on oxygen — without which she said she would have had no choice but to consider a transplant.

She relies on a scooter to get around outdoors and can walk only short distances. “I can sit and natter away for ages and I’m fine, but if I tried to vac the floor I would be on my hands and knees in no time,” she explained.

Despite her limitations, Jill is very positive, and puts some of that attitude down to her involvement with the support group Breathe Easy.

The group offers support to people with chronic obstructive pulmonary disease (COPD), which is an umbrella term for most lung conditions.

It meets in the afternoon on the first Tuesday of the month from March to November — not in winter, when people with lung problems often fall victim to infection.

Jill said it had been a big help to her, and explained: “We don’t spend the whole meeting talking about our illnesses, but you do get to meet people who are going through the same as yourself.

“Sometimes the information you get when you have just been diagnosed is a bit technical and overpowering, and it’s nice to be able to talk to other people with the same condition.

“There is a social side to the group, and people can see there is life after being diagnosed with lung disease, even though it might be a different kind of life.”

Jill added: “A lot of people with lung disease are frightened of being breathless, but with pulmonary rehabilitation techniques you can carry on.

“People can come along and not be worried about being breathless or people looking at them.

“It’s surprising how many people need oxygen but won’t take it with them when they go out because they are conscious of being stared at.”

Dr Barclay was involved with forming the group a decade ago, and she has been invited as guest of honour at Breathe Easy Oldham’s 10th birthday party tomorrow.

The party takes place at the Honeywell Centre, Hathershaw, and members will present Dr Barclay with a £500 oxygen testing device to use with her patients at Oldham Chest Clinic.

Jill said: “Dr Barclay is a fantastic campaigner for people with lung disease. I can’t praise her enough.”