Jacqui is 35 years old, married and the mother of two. A quite normal situation for a woman in her 30s. But Jacqui is living with a disease far from normal – pulmonary alveolar proteinosis (PAP). And it reared its ugly head at the worst time possible.
Jacqui was 28 years old, newlywed and the mother of a three year old girl. She was living an active life swimming and travelling a lot and was now looking forward to becoming a mother for the second time. But seven months pregnant her life changed.
“I kept getting out of breath. Everyone thought it was because of the pregnancy, but I sensed it was something else. And then one day I collapsed at my daughter’s nursery. They took me to hospital – and I didn’t get home till after I had the baby.”
Jacqui went through several tests that confirmed that something was very wrong. However, because of her pregnancy the doctors couldn’t do much about it. So in the end they sent Jacqui to a maternity hospital, where she was put on bed rest.
“It was horrible. At the same day the doctors told me that I most likely had a rare lung disease and that I was to have a premature baby and have a caesarean. It was a little too much to cope with.”
Jacqui gave birth to a little baby boy seven weeks early. The first few months were like living in a blur. Her breathing got worse and worse, and she was coughing all the time.
“Getting diagnosed with PAP was a huge change in my life. It was an extremely hard time with many ups and downs. At some stage I hit rock bottom. I got counselling, but it still took me a very long time to learn how to live with PAP without the disease dictating my life.”
After having two whole lung lavages Jacqui was prescribed medication (GMCSF) for six months and it helped. When she had her next lung lavage nothing came out and it looked like she was going into remission. So for a while Jacqui felt great. But then a year down the line her oxygen levels fell again and before she knew of it she could hardly move up and down the stairs in her home. As a consequence the family moved to a one floor bungalow.
“It wasn’t only me trying to find a way to live with PAP. My husband Paul had to get used to living with my unstable health. It was difficult for us both and we had a couple of rough years. Paul couldn’t understand what was going on with me and why I could be fine one day and in poor health the next. And I couldn’t tell him anything because I didn’t understand either. But we stuck together and today our relationship is stronger than ever.”
It has been seven years since Jacqui got diagnosed with PAP. Although the years have been full of ups and downs Jacqui now feels that she is in control of the disease. She bought an oxygen reader to keep an eye on her oxygen levels, and has portable oxygen so she can do normal daily activities. She has medication (GMCSF) every day, and for the past two and half years Jacqui has had her lungs washed every six weeks by whole lung lavage. All of this helps Jacqui to maintain a somewhat normal life.
“I do things at my pace and don’t push myself. I resist letting PAP get the better of me, so I live life and smile. I go out with friends, I travel to far destinations with my family and I do as much with my kids as possible. My children know that mummy needs rest and help. But there is nothing odd about that for them, because for them it is the everyday life. They both are very helpful – like Paul, family and close friends. They are fantastic at being there for me when I need it.”
Especially two things have made it possible for Jacqui to maintain a good quality of life: Her portable oxygen means that she can go out and always have oxygen with her when she needs it. And her planning diary helps her to maintain a social life by organizing things to make sure she has time to rest between the social arrangements.
“The more I can plan things the better. For example I stayed in for four days last week to gain strength to go away on a weekend trip with Paul. It was great – we walked around, went out at night and had a lovely meal. And I managed. I know my body now and know how to make things work.”
The next big thing is a trip to Australia. At the moment Jacqui is planning the trip thoroughly, making sure that she will have energy to travel and to enjoy the holiday with her family.