10th Feb - And she is doing fine....

Tuesday 10th February 2010

Today I finished my IVs, I am not happy.

My lung function is still 36% even though I have made a real effort to exercise everyday to try help the whole process. Might as well not have bothered! My weight it also down a tiny bit to 54.1kg but apparently my bmi is 'just' acceptable now but I shouldn't let it drop any lower. I am still going to try to put abit more on, how long is it taking me to put on like 4 kg? Its stupid! I lost it in about a month and now its like 3 months and I have put 2kg on, a dieters dream! My theory is, the more weight I have on, then if I do lose some because my chest gets worse then it won't be as dramatic and the dietitian won't be onto me. Also if I do go ahead and get pregnant, I assume I need as much weight on me as possible, so I might as well start preparing just incase.

I told the doctor I was not happy with my lung function situation, it has gradually gone down and nobody seems bothered. He seems to think, as long as it is stable then I'm OK. Well I disagree! He told me that infections will cause my lung function to decrease, its inevitable and keeping me stable and no massive drops is what they want to avoid. Well this is just great, I feel like they have given up on me. Apparently they have sent my sputum to Bristol to see what my scedosporium fungus is most sensitive to (this means they grow some of the fungus from my sputum then see which drugs are most likely to kill it), the results haven't come back yet, so for now I stay on the voriconazole.

He also asked me if Pete and I had talked about pregnancy after our meeting with the other doctor. I told him we were disappointed, I was upset and we didn't know what we were going to do. He said the Doctor had given me the right advice but there were people with lung functions like mine who had done OK, infact there was one lady who'd had a baby 3 years ago and she was doing fine, it didn't seem to have affected her, however I might not be so lucky. I don't really know how if they have no idea how they think I do! I asked him if I would need to do anything to prepare myself like put weight on, he told me I'd need to talk the dietitian about that but all they would do is make sure in was in tip top condition and put me on folic acid. Shouldn't they be keeping me in tip top condition anyway?!

So that was it, home I went. I have to go back in two weeks, they want to keep a close eye on me. God knows what my lung function will be in 2 weeks, I really dread to think. The worse thing is, that I thought it would have gone up. I'm hoping it was higher really and I didn't blow as hard as I could have because I had a terrible headache, seriously, I though I was going to pass out after blowing into the machine as this pain shot through my head and I felt all fuzzy. Not nice! I wouldn't have another go, so I am hoping that's what the problem was.