February 28th is Rare Disease Day all around the world.
Today I am sharing with you a guest post – Lauren who has Lam -Lymphangiomiomatosis. Thank you so much Lauren for sharing.
“You have a collapsed lung”. I looked at my husband Chris, whose face went white. “What does that mean?” he asked. I was 36 weeks pregnant with my first baby.
The next few months are a bit of a blur: multiple chest drains, a caesarean (due to the lungs), another collapsed lung, two pleurodesis surgeries, a bacterial infection and a diagnosis of LAM. When most people should be celebrating the birth of their new baby, I was lying in a hospital bed while my mum was stepping into the role of primary caregiver.
I’ll never forget the day my surgeon came into the room and told me I had LAM. I had already heard whispers from the student doctors who speculated that it could be this weird disease I had never heard of. Of course, I had googled it and called my mum and husband in a mad panic. They reassured me that I was being ridiculous. Even the doctor who was prepping me for surgery said, “You won’t have LAM, its been on an episode of House with Hugh Laurie, that’s how rare it is”.
Turns out I have LAM.
Fast forward four years and here we are. It was my daughter’s birthday this month – it always reminds me of the hardest time of my life. I nearly didn’t make it through. After developing post-natal depression and post-traumatic stress disorder to then being told we couldn’t have any more children; it’s been a hard journey. It also took me this long to learn how to spell lymphangioleiomyomatosis. Most doctors still look at me blankly.
Hours of therapy, ongoing support from my family, husband, friends, LAM sisters and medication has got me through. I have also tried to adopt a positive attitude and I do try to find the light in the dark as much as I can. What I have learnt is that I can endure a lot of hurdles and can still come out the other side fighting. I am proud of the person I am today and I have learnt to accept that I wouldn’t be this person if it wasn’t for my LAM.
Although this time of year can be difficult, it is also a celebration because I am four years post diagnosis and I currently have stable lung function tests. That’s not to say I don’t have hard days, I do, but I’m so blessed to have an amazing doctor and I am thankful to modern medicine for slowing down my decline. It doesn’t come without its side effects: headaches, mouth ulcers and acne but the biggest issue I face is fatigue and generally feeling unwell. I am CONSTANTLY tired and at 34 years of age that’s a hard pill to swallow. This year I have decided to take steps towards slowing down my life and accepting that I can’t do it all.
I have been told the next 5-10 years will be a good indicator of how my LAM will progress. I try not to think about it too much because it makes me anxious, but it’s always there. Ticking in the back of my mind. Will I see my daughter grow up? Will I grow old with my husband? Will I need a lung transplant? Will I get to keep travelling? Will I be able to do the gardening?
I don’t have a crystal ball and even if I did, I don’t think I would want to know the answers to my questions. All I know for sure is; every year that my daughter gets older is another year that I have had with her and for that I am truly blessed.