Your browser is no longer supported

For the best possible experience using our website we recommend you upgrade to a newer version or another browser.

Your browser appears to have cookies disabled. For the best experience of this website, please enable cookies in your browser

We'll assume we have your consent to use cookies, for example so you won't need to log in each time you visit our site.
Learn more

Living with lung disease

  • Comment
Pauline Adam is a 42-year-old former nurse and mother of one. She has a genetic lung condition called Alpha-1-Antitrypsin Deficiency (A1AD). This condition is rare, affecting about one in 3,000 people in the UK. Ms Adam lives in Edinburgh and is a long-time supporter of the British Lung Foundation (BLF). She is a former organiser of her local BLF Breathe Easy support group, but is currently not well enough to attend group meetings. She is mostly confined to a wheelchair and is reliant on constant oxygen therapy.

Abstract

 

VOL: 99, ISSUE: 23, PAGE NO: 66

Rachelle Laurence, is Press and Public Affairs Officer, British Lung Foundation

 

 

Pauline Adam is a 42-year-old former nurse and mother of one. She has a genetic lung condition called Alpha-1-Antitrypsin Deficiency (A1AD). This condition is rare, affecting about one in 3,000 people in the UK. Ms Adam lives in Edinburgh and is a long-time supporter of the British Lung Foundation (BLF). She is a former organiser of her local BLF Breathe Easy support group, but is currently not well enough to attend group meetings. She is mostly confined to a wheelchair and is reliant on constant oxygen therapy.

 


 

Ms Adam first started feeling breathless when she was working in operating theatre management and was on her feet all day. Sometimes in theatre she would check her own oxygen saturation level as well as the patient’s - hers was usually lower. She made herself give up smoking but this made no difference to her level.

 


 

She was devastated when eventually diagnosed with A1AD and told there was no cure. Her only hope is a lung transplant. Ms Adam had to give up her career, which was a devastating blow, and went from being a nurse to a patient.

 


 

For years she had assisted surgeons carrying out thoracic surgery but never dreamed that she would one day need lung surgery herself. Her oxygen tank weighs more than 12 kilograms, so she cannot carry it herself. The only way she can leave the house is by using ambulatory oxygen. However, this is not provided by the NHS.

 


 

It would make a huge difference to Ms Adam if she had access to ambulatory oxygen as she cannot even visit her local corner shop without fear of running out of oxygen. Short trips and holidays are out of the question.

 


 

Ms Adam has been on the transplant list for five years and could receive an emergency call from Papworth Hospital in Cambridge at any time if a donor becomes available. She has to reach the hospital within four hours of the call, so cannot venture more than 45 minutes away from her home. She carries a mobile phone and a pager, which is linked to the hospital.

 


 

So far, Ms Adam has had four ‘dry runs’ where she has been flown to hospital in a helicopter but the transplant has not gone ahead. Often it is difficult to find a suitable match, which is very disappointing and demoralising for Ms Adam, her family and friends.

 


 

She recently lost a close friend who had a lung transplant two years ago. The friend visited Ms Adam after the operation and was fit and healthy. However, during a winter check-up, an infection was found and her condition deteriorated dramatically.

 


 

This has not put Ms Adam off having a transplant, although it has made her teenage daughter very worried. Ms Adam stays focused on the future and looks forward to the day when she can attend her Breathe Easy group meetings, visit her friends and get back the life she was used to.

 


 

British Lung Foundation

 


 

The BLF was set up in 1985 to find ways to improve the outlook for people with lung disease. Often the first contact that members of the public have with the BLF is when they, or their relatives or friends, have been diagnosed with a lung illness and are desperate for information. The BLF offers an extensive range of information booklets, leaflets and fact sheets.

 


 

The Breathe Easy Club

 


 

A key area of the BLF’s work involves providing practical support to people with lung disease through the Breathe Easy Club - a national network of voluntary local support groups. There are 115 Breathe Easy groups around the country.

 


 

They consist of people of all ages who have lung conditions, and also their carers, families and friends. Groups meet once a month and invite a guest speaker, often from the medical profession, to give a talk. The chance to share experiences can be a lifeline for many group members, some of whom rarely leave their homes other than to attend meetings.

 


 

Lung disease can be very debilitating and many group members are housebound or are dependent on oxygen therapy. They stay in touch through their group newsletter.

 


 

Breathe Easy Week

 


 

Lung disease can be very isolating. Many patients often appear ‘normal and healthy’, and people can often endure a large amount of negative stigma surrounding their disability.

 


 

To help combat this stigma, make lung disease more visible and campaign for better lung health services, the BLF is staging ‘lung marches’ across the UK on Saturday 14 and Sunday 15 June 2003, during its national awareness week called Breathe Easy Week (14-21 June 2003).

 


 

During each march, a petition will be presented to a local MP. This will list the names of local people who believe that everybody in the UK should have the right to the lung health care services they deserve, including ambulatory oxygen and pulmonary rehabilitation.

 


 

Health professionals in particular are being encouraged to sign the petition and inform patients and friends who might also like to participate. The petition can be downloaded from the BLF website (www.lunguk.org), where people can obtain more information about marches in their area.

 


 

FURTHER INFORMATION THE BRITISH LUNG FOUNDATION
78 HATTON GARDEN, LONDON, EC1N 8LD;

 


 

TEL: 020 7831 5831;

 


 

 


 

BLF PUBLICATIONS CAN BE OBTAINED BY CALLING THE 24-HOUR LEAFLET INFORMATION LINE ON 020 7831 5831, EXTENSION 3. A LIST OF LEAFLETS AVAILABLE CAN BE ACCESSED VIA THE BLF WEBSITE; LEAFLETS CAN ALSO BE DOWNLOADED. HEALTH PROFESSIONALS CAN E-MAIL THE BLF DIRECTLY VIA THE WEBSITE WITH ANY QUERIES.
  • Comment

Have your say

You must sign in to make a comment

Please remember that the submission of any material is governed by our Terms and Conditions and by submitting material you confirm your agreement to these Terms and Conditions. Links may be included in your comments but HTML is not permitted.