Going to clinic and being seen regularly by medical teams is now something I'm very used to. Since going onto the transplant list I've had appointments 2-3 times a week, at the moment it almost seems like a full time job. It takes me 1.5hrs to get up, take medication, nebulisers, inhalers, mum helps me to get dressed and washed, I sort out medication I need to take with me for the day whilst she fills up my liquid oxygen cylinders which allow me to leave the house. A 20 minute appointment could mean we're out of the house almost 3hrs due to the time everything takes, how slowly I have to do things and how much equipment I need.

Today I had clinic to check on the oxygen and carbon dioxide content in my blood and also to check how I'm getting on with my ventilator. I have blood taken from my earlobe because it's oxygen rich (arterial) there and this tells doctors how much oxygen and how much of the waste gas, carbon dioxide, there is in my blood stream, the more oxygen there is the better my lungs are doing, when the carbon dioxide is high it's a sign of how diseased the lungs are. We talked about how much I was dependent on the ventilator now, alot more than I was. This is not a good thing, it means my lungs are becoming less and less efficient and more diseased. On the postive note the ventilator is making a difference, I would be in a bad way without it now. My doctor can do nothing more for me on the ventilator side of things and he's going to have a chat with my transplant doctors and make sure they're aware of what's going on. Just a typical appointment really!

On Friday I'm hoping to make it to the NHS blood and transplant roadshow in Manchester. The new organ donation campaign has taken to the streets in a bid to get the 96% of the population that believe in organ donation to prove it and sign up to the organ donor register. There will be local press attending the roadshow and provided it doesn't actually snow (!) the turn out should be good. I've been asked if I'm happy to be interviewed at the roadshow, last time I was interveiwed by local press my story made quite an impact and as result 3000 people in the North West signed up (you can view that article here).
Will keep you posted on that one!
Rachy x