life life life

Today I had a follow up appointment at Brompton with Barbara (the doctor I usually see when I go up for IV check ups) and a trial for a new thing called Tobi Podhaler. I was asked to go up for 1pm to see Barbs before my trial at 2.15. I expect to wait a while to be seen when I'm up there as there are lots of patients in the hospital. But this time was unusually long. I hadn't seen Barbara by the time my trial came round, so did that first. I currently take Tobi through a nebuliser, but this is a new invention that allows me to take the Tobi medication through an inhaler instead. The whole process is quicker, more convenient, needs less maintenance of equipment and doesn't involve a big nebuliser. Overall, many bonuses! The trial was to make sure I didn't have any reactions or that my airways didn't tighten once I'd had it. Thankfully I passed it and now have a much quicker way of taking that medication :D

So then I went to wait again for Barbara and the nurses kept bleeping her. By this time it was about 3.30. Finally at about ten to 4, a nurse informed me that Barbara wasn't even in! Goodness knows why it had taken them soooooooooooo long to find this out. I was a bit annoyed that I'd wasted so much of my day waiting for someone who was never going to turn up. The nurses told me though, that another doc would see me quickly as I'd been up there most the day lol.

I saw a nice doc called Callum and explained that my lung function has still not improved, neither have my symptoms and he went to ask the head doc of the hospital what we should do. A little later he came back to say that I should stop my current IVs as they are clearly not doing anything and I will be put on the non-urgent list to come into hosp for an admission for IVs and really good physio.

Pretty gutted to be honest that after 3 weeks of IVs plus oral tabs that my lung function hasn't budged even 1% :( I'm moving house in a couple of weeks, which will be stressful enough. Now I will probably be ill for it and then once I've moved in I'll be straight back out the door to stay at hosp for 2 weeks. But what can you do 'ey!?! That's life at the end of the day. Just hope I will have the energy and patience to get through it all :/

2 weeks into IVs

On Monday I went back up to Brompton for an appointment and to see if I should stop IVs, as the two week course had ended. The good news was that thanks to the steroids I was on, I'd put on 1kg! :D So currently around 45.5kg. Other than that, there had been literally no change to my lung function or sats :( So I'm trying another week of the same IVs. I think I probably need to change IVs really, but might do that next week if there is no improvement again.

Spoke to the dietician about having a PEG put in and I now know more about it. I'm also emailing a woman who has had a few PEGs, so she is telling me her experiences and answering all my questions :) She's been very helpful! The dietician thought it would be a very good idea to have a PEG put in to help me gain and maintain weight, and they are hoping to put one in before Christmas.

Next time I blog, will probably be when I'm 21! I'm getting so old lol x