how quickly things change

Well, I'm home! Got home on Tuesday after being admitted to Gartnavel on Wednesday.

I had been in a lot of pain since the Wednesday before, and had made an appointment with my GP for the Tuesday (as I was working on the Friday at the only time they could offer) to check it wasn't an injury as I didn't fancy trailing my butt up to Glasgow if it wasn't CF related. Anyway, GP said I had pleurisy but that he wasn't giving me anything because the pain wasn't as intense. A sign, he thought, that I was getting better. I think deep down I knew I'd have to go to CF clinic because I was spending all day in bed, apart from getting up to teach, then coming home and going back to bed. I had just hoped to avoid seeing them for a bit longer.

Anyway, this didn't sit very well with me so I went up to clinic that afternoon and was x-rayed straight away and told I had a chest infection (which I later found out was a pneumonia) and sent home with 3 oral antibiotics and strict instructions to phone them if I wasn't getting better.

Next day the pain started to migrate so I phoned and they took me in. Boo. I've been on IVs just over a week now, due to finish on Wednesday, so I'm going back up for another X-ray to make sure chest is clearer.

Since getting home on Tuesday I've been using enshakes so that I don't have to force feed myself, as IVs make me feel sicky and very tired so I don't eat as much. However, they sent my blood sugars sky rocketing so I was told to go to clinic yesterday for an OGTT. It was fine, thankfully just my usual, so it must just be the drinks.

I had a bit of an uncomfortable conversation with 1 of the consultants about how I felt I wasn't being fully informed about what's going on with me. I got the impression he felt I was questioning their work practice, which I wasn't, I just wanted to know more but kept forgetting what I needed to ask, as they came into my room mid nebs etc so I wasn't fully concentrating, and they didn't say much other than "how are you feeling now?". Anyway, he explained that I'm on all the treatments I need to be on, that I'm not allergic to the aspergillus but that there had been a change in my blood work that showed I'm fighting it harder. Apparently it shows in my sputum more than they'd like but since I'm not allergic they are happy to leave it. I don't have any allergies at all so that doesn't surprise me, but I wanted to let them know that my chest has definitely changed symptom wise since this appeared. I have made this clear in the past but depending on which consultant I see, I'm not convinced it always goes in.

I also have managed to clear the pseudomonas. This, however, left me wondering what on earth infection I actually have. He didn't have any answers to that, just that my most recent sample was negative for pseudomonas, but said that seen as I had pneumonia they felt they had no choice but to have me on IVs and extra physio.

I saw a CT scan of my chest that was taken in August at the run in study in Edinburgh, which showed bronchiectasis and some scarring, and he said that my weakest area is the bottom left, where this damn pneumonia is.

The long and short of it is that my CF is kicking my butt a bit more than it used to. So I need to keep working at kicking its butt.

I know I'm still very well in CF terms, but a lot of things have changed in the last couple years and it does take a lot more effort to stay well, and I've lost the feeling that I may actually be invincible. Not literally, but I always felt that I was gonna be fine forever. Maybe I will be, maybe I won't, but Dr reckons that I should be fine provided I keep the pseudo away. Fingers crossed.


My boring life aside, I found out yesterday that a very close CF friend has been assessed for transplant and can't be listed due to the amount of scarring in his right lung. Freeman think he will die from blood loss during the operation. To say I was devastated doesn't even cover it, I was shaking all over when he told me over the phone and cried for ages. I'm close with his fiancee too and am really hating the feeling that there's nothing I can do. I hope he gets home to her soon, as he is going back onto the ward today when he gets back. He is very poorly now and we all hoped that transplant would be an option and he would have something to look forward to.


Hope you are all well x