November 2010 is a month I will never forget. This was the month when I was rushed to hospital with severe back pain and came home diagnosed with lymphangioleiomyomatosis, a disease I’d never heard of before.
I was 39 with a 3 month old daughter, Cassandra, and a son, Bailey, who was just about to turn two.
When the registrars broke the news to my partner, Steve and me, I knew something was wrong. However, I didn’t expect to hear what they told us straight out: I had an extremely rare disease, LAM, that affects one in a million and only women, no one knows why, there is no cure and the doctors were not sure how long I had to live. As I was in a severe stage of the disease, a double lung transplant was the only remedy for longevity.
I remember sitting there in stunned silence thinking this was a bad dream. I was confused about how I had gone into hospital with chronic back pain and come out with a rare, incurable disease and on oxygen 24/7.
As no-one could answer our questions, of course we did what every other woman diagnosed with LAM does and surfed the internet, only to feel more depressed and scared.
The weird thing was that I had never had any symptoms. When I fell pregnant with Cassandra, I had felt short of breath, but this was put down to my suffering from anxiety and being pregnant. So I went along doing things as I always did, but just feeling a bit more short of breath during my pregnancy.
Luckily, while he was on the internet Steve came across LARA, a wonderful support group formed by women going through this disease. They provided me with so much support and gave me the courage to be strong and focused and not to worry about the future; but to live for the now. Talking to other women with LAM gives you hope and helps you realise that you are not alone with this disease.
Yes, each day is hard for me and yes, I worry about what the future holds and if I will get to see my children grow up. However, I am also hopeful because there is a strong network of determined women out there campaigning for research and the hope of a cure.
I am lucky to have a supportive and loving partner, and a great family and friends who got me through those early days and everyday since.
I just turned 40 and have started back at work part-time along with my oxygen. Yes, it is a challenge, but I just remind everyone who asks or stares at my nasal prong, that I am still KATE; it’s just that now I use oxygen to help me breathe. It helps that I love my job as a social worker.
I am not sure when I will need a transplant. I am being monitored at the moment and only time can tell. Meanwhile I try to make the most of each day, enjoying my children, friends and family and focusing on what is important!!!