Friday, 18 October 2013

Week of changes and trying new things

So this week has been a bit of a mixed up thing in terms of things I do for my health... probably shouldn't have tried changing things all in one go, but ni! That's what I tend to do!

Firstly Monday I did a drug challenge to change my DNAse nebuliser to a different drug through an inhaler. Quicker, easier to manage/transport/clean etc... the challenge involved taking pre dose blows (no change from week before, phew!) then taking the dose in small chunks with oxygen level checks and blows to check that I didn't have any adverse reaction to the drug preventing me from continuing. That all went well... my oxygen sats actually went up by 1% at the end (doesn't seem a lot, but the higher the better!) and my fev1 (how much air I can force out my lungs in 1 second) had improved a teeny tiny amount. The overall reason for this drug is to help shift the gunk out my chest, and it certainly started doing that immediately! So... Now being Friday, I've been doing it for 3 further days at home, and it is helping to shift the nasty gunk out, so I'm hoping it continues long term and isn't just a random shifting spell! My other concern is that I did actually take part in the clinical trials for this about 8 years ago, and ended up having to pull out the study because of repetitive headaches... as I'm more prone to them now anyway, I'm really worried that it's something that will benefit my chest, but could cause daily headaches... nothing is ever straight forward with a CF body!!

Next new thing was on Tuesday I gave reflexology a try. I had a very nice lady come into my home for a session of reflexology on my feet (not sure if this can be done on other body parts but she was specific about working with just feet!) She explained how different parts of feet correspond to different body parts, even down to things like intestines and 'lady parts' ;) She warned that I might feel a bit odd the rest of that day (which hit me about 6pm and Glen thought I was completely out of it and not acting right at all!) but I should just judge and see how my body responds to it over time. I'm not sure what I was expecting, or how I should feel if it has benefited me, but I think I might give it another try next month, see how it goes. If it can help my achy back and relaxing issues then it's worth trying for a couple of sessions!

Lastly, I had my flu jab on Wednesday... very important if you have (or have a lot of contact with someone with) CF. Any extra bugs and germs could cause big problems through the winter, so every October I always make sure I have mine. As I work in a hospital they obviously offer them to staff... benefit of having it done at work rather than home GP- they give out lollies, time away from desk working AND I didn't have to stand in a really long queue with other poorly based people at the surgery! Score. I have now got the obligatory achy arm (gradually improving) but hopefully it should be enough to keep me from anything too nasty this year... now the challenge is to get Glen to have his!

I've rounded off this week with a shopping trip with mum, and below is a rather fetching pic of me playing with stuff in Primark!!

Saturday, 5 October 2013

My brain is frazzled!

So it's been quite a week for me.

Had my transplant assessment. 3 day trip to Pappy. On one respect it was quite nice going in knowing it was only going to be for 2 nights, and also as I wasn't under my normal CF team, I was left very much to my own devices. The nurses who I normally have to fight tooth and nail to let me do my meds let me be, I had no annoying late night or early morning iv disturbances and my time in the room wasn't being interrupted by people stopping by to 'have a chat'. On the flip side, there was a LOT of scary and in depth information given which has taken a while to sink in.

My stay started with a day of tests. I met the tx nurse coordinator Tracey who gave me a timetable of what should be done and when, as well as a tick list (I love lists, she must have known!) so I could keep track of what needed to be done before I left on Wednesday. Then followed what seems like my entire body's worth of blood taken by Rosie... my body was obviously liking her as she got blood from both hands (my left pretty much acts like there isn't blood flowing in it normally!) I also had an echo and an ECG, then extended lung function tests with Andrew including going in the 'tardis' and playing bowling with my breathing! Then I had a 6 minute walk test and I was done for the day. Essentially my lung function hasn't changed in the past few months (good as no decline, but any improvement is always preferred!) The walking test I did ok at, but my sats dropped even on extra oxygen so that shows that although I am physically capable of doing things, it is putting my chest under a lot of stress. Easy remedy, use more oxygen!! After this, my day was done, mum headed home and I was left to find something to watch on tv and mull away the few hours before sleep. Luckily my room had good www connection so I could play about and watch videos etc.

I slept reasonably well considering I was in hospital... it makes such a difference not being on IVs (or under my normal team) and I followed up a reasonable sleep with nothing happening on Tuesday morning, so I read a magazine, did some sewing,... generally killed time until lunch (and mum) arrived. After lunch I was taken over to the tx centre for my afternoon of serious talks. We spent a very in depth 2 hour chat with the nurse who went through a lot of info about the surgery itself and a LOT about the post tx life etc. This 'chat' frazzled my brain, and I did get to a point a couple of times where I wanted to run out (stagger!) and get air, but I stayed put till the end. After I told my mum this and she agreed that she felt the same in places. I had to try to relay this info to Glen that evening but it was hard, and I'm sure I didn't tell him half the stuff that was talked about. I guess even if you've been told this stuff before, you're never going to be ready to face stuff until it happens.

Wednesday mum went on hollibobs so Glen came to rescue me. We spent the morning waiting in the tx centre to see the surgeon (who was the guy that did my peg so had a nice catch up with him) who went through more detailed info about the surgery and facts about survival rates etc. After this I had to hang around to get my port accessed and do a 1st dose IVs as it was decided to go home on a course to try to nip my 'pre bug' feeling in the bud before it took hold into full blown infection. Eventually we got away, and by the time we were home (and good dog fuss later) I was dialling the local Indian for some yummy foods.

Thursday/Friday I was home alone as Glen had gone to a games convention. This time alone I tried not to do too much thinking as I had no-one about to tell me to buck up if i got myself in a state. Needless to say, I was relieved when Glen came home Friday night.

The end result of the assessment seems to be that the individual members of the team would be happy to list me (dependant on the blood work coming back ok), but on the flip side, they're happy to leave this decision making until my next review in January. This means I have a couple of months to get my mind around everything, and can have my holiday without any major worries about delaying things beyond a point that the drs are happy with.
Judy actually awake and looking at the camera!