Monday, 20 June 2016

Small update


I'm still up on MADU- but not for long yay :D Shall get to that... (keep up the suspense, ey).

Not a huge amount to report as still not really any change, but I am feeling over my highs and lows moment :) 

Last Thursday was my lung function, which had re-dropped to 33%. These things happen though. The new physio I am doing (the cough assist) seems to be going well, we are using hypertonic saline with it too. The hypertonic saline is a salty liquid, which draws water into the sputum to help it be less sticky and I should be able to move it easier. 

Friday was a good day for what I call "information gathering". For me, when things seem a bit out of my control, like they are now with not knowing what's going on with my body or why nothing seems to be working and not knowing when it will work, when I will be home etc etc; gathering as much information as possible from the docs, moreover Dr Orchard, helps me regain a feeling of control over the situation. Understanding the facts and figures, the plans in their heads, the results of all the tests, what I can be doing to hep myself and so on. Dr O came up to see me and was firstly apologetic that it had taken him this long to come up. I didn't feel he needed to apologise at all! He's an extremely busy man and seeing me twice a week up here is more than I expect of him; he is just such a kind person. 

So he talked me through, in detail, the results of my CT scan. This was great for me to hear as I haven't seen the CT scan, and even if I did, I doubt I'd know what I'd be looking at haha. He explained that at the top of my lungs there is a huge amount of "plugging". Plugging, is the name they use when the airways are clogged with sputum. Like a plug, they stop things getting through; so air isn't getting to these parts of my lungs, or is very restricted. It is these plugs that we need to get rid of. Chris also said that these won't have just come overnight, they are very likely to have been building for months and months, and now it is just too much and that is why I've had the big drop in lung function. He also said that the bottom of my lungs remind him more of asthmatic patient's lungs. I don't know a huge amount about asthma, but I think these parts are more inflamed. 

So "The Plan" was: to carry on with the IVs I'm on, add in a new inhaler called Spirever, which is another anti-inflammatory and the best part...... come off the IV aminopholin, YAY! This meant I wouldn't be attached to machines 24/7 and I could come back down to the CF unit as soon as they have a bed, hopefully early next week :D As soon as the last bag of IV ami was off I felt brilliant, being able to walk around my room easily without trying to drag a machine around and I could go toilet whenever I wanted to and without unplugging all my cables. Weird things give you a buzz in here lol.

It also meant I could leave the room and ward and get some fresh air. Al took me down in the wheelchair with oxygen and we just sat outside, it was so nice. Chris also said I should try and get out for a bit at the weekend, it would do me the world of good. How could I refuse haha. Especially as it was father's day on the Sunday. Of course, not all plans come together and to cut a long story short, on the Sunday, despite all the planning and reminding to the nurses and on call docs, it didn't go to plan at all and I ended up not getting out :( I was really upset, as you'd imagine, but these things happen I guess. No point dwelling on the negatives. My wonderful parent's brought up the meal we were planning on having and it was beyond delicious! My mama is literally the best cook in the world and she never fails to disappoint :D Bless my angel of a daddy too; once he heard that I wouldn't be coming out for the day he drove all the way here to drop Alex up (Sunday trains were messed up) so we could spend a day together just us two, then drove all the way home just to come up again in the eve. I'm so lucky to have such kind parents <3

I have also been blessed with lovely visits from friends and family. A couple of photos from visits, except the visit from my aunty and cousin where I was asleep the whole visit, whoops! Sorry Linda and Nai xxx

Me, my uncle Phil and cousins Tamsin and Emily

 Me and my friend's wonderful mama Paulina and her partner Clive

Today I have slept of most of the day. I had a trial of another nebuliser Bronchitol, which I used to take a few years ago. The trial didn't go well so we aren't going to use it. The nurse has managed to fix my Power Glide, which was starting to be really painful and the drugs weren't getting through it. I also did my lung function, which has gone back up to 36%. It keeps fluctuating from 33-36, so until it goes up again, I'm, not going to celebrate too hard; but so glad it hasn't gone down. Speaking of going down, I'm going back down to CF unit TOMORROW! :D 

We are still fundraising for my uncle's Great North Run in aid of The CF Trust, if anyone would like to support him and donate, just follow this link :)

Until next time xo

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