My story

The main symptoms I had were re-occuring pneumothorax (lung collapse) in both lungs. I had 11 of these and some surgery to treat them. I also had COPD in both my lungs and fibrosis both inside and on the lining of the lungs. I had both obstructive and restrictive breathing test-results. I have a tendency to get pneumonia, probably because of all the scarring in my airways and my lymph nodes in my armpits have been constantly swollen throughout all this time.

When I was diagnosed I was scared and was given outdated statistics and basically told that I had 10 years left to live from my first symptoms. As I had had severe symptoms for at least 6 years already I was terrified of the thought that I might die because of my daughters, who were only 10 and 7 at that time. But these statistics were old and today there are much better diagnostic methods, treatment and knowledge of LAM among health workers.

But of course it has been no walk in the park. The doctors have saved my life several times, and I am forever grateful for that. And exercising after heavy lung surgery is hard and painful but totally worth the hard work. I have also received physiotherapy to ease my breathing, and supplemental oxygen both in hospital and home. I have spent numerous hours in the gym to get back my strength and mobility.

It has been very challenging during the years with uncertain prognosis but my lungs are much more stable now than in the early years after having my children.

I eat healthily and am a vegetarian. I try to avoid too much sugar and I take vitamin/mineral supplements daily. I exercise regularly and do voluntary work at music festivals when I am stable and try to be as social as possible. In worsening periods when I am on supplemental oxygen it can be lonely at times because there is little energy left to be social. Then it is good to have social media such as Facebook to keep in touch with friends and family. I am allergic to most painkillers so to cope with chest pain I paint, sew and garden. Acupuncture and meditation have also helped.

My support includes a very good local doctor and my closest friends and family, who give me a great deal of security. Most of the time I try to cope without any help in my everyday life. My biggest challenge has always been to take things at a slow pace and to ask for help.

The LAM diagnosis has changed my life totally. I was on a career path working as an Art Director in advertising in the music/film industry but then I had to reorganise my life, mindset, and values – basically everything. It is not actually a bad thing. Life just took an unexpected turn. I have met a lot of wonderful people I would not have met otherwise, and I have learnt a lot of other things in life because of this. I am not what you can call a religious person, but I have evolved more on a spiritual path because of all this. No use ending up bitter; this is my life as it came to be.

I am still on the page that I try to ignore/forget that I have a disease in my everyday life. Sometimes that works for me and sometimes its slaps me in the face and forces me to sit down. As I told my doctor last year: "I try to find balance between taking things slow – and to actually have a life".

The advice I would give to someone newly diagnosed with LAM today is: Do not believe in old statistics! Ask around and get at least one second opinion. There is always more than one "truth". And never give up and never lose faith. Stay positive! I am optimistic about the new scientific research of immune-therapy and I am still hoping for a permanent cure for this disease.