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.
November 2010 is a month I will never forget. That was when I was rushed to hospital with severe back pain and came home diagnosed with lymphangioleiomyomatosis, a disease I’d never heard of.
I was 39 with a three month old daughter, Cassandra and a son, Bailey, who was about to turn two.
When the registrars broke the news to me and my partner, Steve, I already knew something was seriously wrong. However, I didn’t expect to hear what they told us straight out: I had an extremely rare disease, LAM, which affects only five women in a million. “No one knows the cause, there is no cure, and we are unsure how long you will live”. As I was already in a severe stage of the disease, I was told a double lung transplant would be the only way of extending my life.
I remember sitting in stunned silence thinking it was a bad dream. I was confused by going into hospital with chronic back pain and coming out diagnosed with a rare, incurable disease and needing to use oxygen 24/7.
As no-one could answer our questions, of course we did what everyone in our situation does these days and surfed the internet, only to feel more depressed and scared. The weird thing was that I had never had any symptoms. While I was pregnant with my second child, I had felt short of breath, but this was put down to anxiety and pregnancy. So I had continued as usual.
Luckily, Steve came across the website of an Australian organisation formed by women like me who are living with LAM. Those women have provided me with warm support. They have given me the courage to be strong and focused. Rather than worrying about the future, I have learned to live for the present.
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 a cure for LAM.
I am VERY lucky to have a supportive and loving partner, and a great family and friends who got me through those early days and every day since.
I am now 43 and still working part-time as a social worker with the help of 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.
I will need a transplant in the near future, but at present I am just being monitored. Being on a trial drug seems to be keeping me stable.
If there is one thing I have learnt from living with LAM during for the past four years, it is that this disease affects everyone in different ways. We must be hopeful and not give up, regardless of our situation. I do my best to make the most of each day, enjoying my children, friends and family as well as my work, and focusing on what is important!!