porchy12

There is no cure for the disease, but chemotherapy can keep it at bay, so I think I'll be having chemo for the rest of my life. As long as it works though, the sickness is a small price to pay!

The surgeon I am under has plans to carry out a reconstruction of my airways, but that can take a long time to carry out, as we need to get the disease at bay before he will do it, otherwise it will just destroy my airways again :(

When I was first diagnosed, they gave me 2-4 years, which was really upsetting to hear.

After doing a lot of research online, and getting information from specialists in London, we don't actually know! Chemotherapy is used to 'treat' this, but it works differently for each person, so we will keep on trying different drugs to find the one that works for me.

If we do, I MAY have a normal life expectancy, but we won't know for sure for a long time.

Plus, my airways are so bad, the parts that the tracheostomy can't reach are at risk of collapsing completely.

But hey, I'm still alive right now! :)

No, it's an immune disease, and chemotherapy is an immunosuppressant, so it should stop the damage, but it is all about finding the right drug and dosage that works for you.

Pretty badly!

Because of the tracheostomy, I need a suction machine and a nebuliser. The nebuliser is mains powered only, and the suction machine is heavy and has a small battery, so going out isn't really something we can do easily.

We sometimes have friends come over to visit, but most of them have kids and busy lives, so it's not so often that happens.

Thank you!

My life may not be as long as others, but as long as I am with my family, I will always be happy :)