Wednesday, 27 April 2011


Hours in clinic and I feel truly knackered, my head and body feel like lead. I did lung function today, the last lung function I did was half way through my last admission when I was still reasonably ill and it was 22% I hate to think what it was at the beginning of that admission, today I reached 23% Its not a great really a significant rise, but I did have a nasty bleed since then and I was very poorly for a very long time. I have to say today I felt really good, Well as good as I think I can, so I think this is going to be my lung function when well now, where as before when well I could reach 30%. I'm not bothered much, Its just a number, I feel good and I'm not going to let that drag me down also my Sat's are reasonably good when resting, so I can now have my 02 off whilst resting now. Although at the moment I'm so knackered I need it on.

Were planning to keep with the permanent IVs as I really don't think we can risk coming off them and having a drop like last time, I just don't think my lungs could cope with my infection getting so out of control as last time.

We talked about the use of my by pap and whether I was at the stage to use it at night, which I don't think we are and my doc agrees, but as soon as I feel myself dropping and I want to try it I have to go in over night and have some blood gases done. I'm just so happy I feel stable and I can avoid that for a while. Its good to know this options there when I need it though.

So after clinic we had to pop into Exeter to the bank and a quick trip to monsoon, where I brought all my wedding jewellery :-D so happy about this. Now I'm at my mums chilling until Stu picks me up later as hes got stock take. I'm probably going to nap on my mums bed, she only has one room at the moment as shes renovating a whole bungalow to have an upstairs, a hard job but its looking amazing so far, she's good with that sort of thing and interior design. Anyway Bye for now.


  1. I'm glad clinic went well :) I use a bipap at night for my muscular dystrophy and it really helps me, so please don't be too upset if/when the time comes that you have to use it.


  2. Very glad to read that you're feeling good! Long may it continue :)
    Dawn xx