Thursday, 21 February 2013

bye bye IVs!

IVs finished on Tuesday, yay, and got my line out today! My lung function was back up to what it was over Christmas which is good news, and almost up to my best reading in a year. Nobody could shed any more light on the bleeding, as nothing has really changed apart from the return of staphylococcus. After not growing it for around a year and stopping flucloxacillin in August (I thought I stopped it in October, but nevermind!) I have had 2 samples with a heavy growth (December and pre-IV). Sake. Dr was fairly insistent that I don't start back on fluclox though because of the bother I have with thrush, so we're just hoping at the moment that I'll manage without it.

I was really impressed with my numbers today because I've had some pain and a bit of a cold over the last few days but must not be on my chest this time.

I even managed to gain 0.7kg which is unheard of on IVs. I always seem to lose weight on them but I didn't have so much nausea this time so managed to eat like a complete pig and James kept buying me jelly babies and cakes, as did mum!

Next week we are hoping to have our house valued. I'm dreading it because our ability to buy it is based purely on how much they say it's worth :/

Work is going reasonably well. Feel a bit bored again and can't wait for the kids' exams to be over cause I'm sick listening to the pieces (regardless of how well they play them)! I'm anticipating a distinction and a merit for my grade 1s, although if the 2nd was to get distinction too I'd be over the moon! Only other exam this time round is a prep test, which doesn't get graded :)

BTW, stuff getting an epidural put in! I'm watching a midwifery program, apologies, and that looked painful.

I'm feeling pretty good at the moment, emotionally, and I am seriously enjoying seeing some sunshine :D

Tuesday, 12 February 2013

Lots on my mind - bare with me

Sorry for this, it's going to be boring, but I feel I need to write it down because it's taking up too much mind space.

I'm sure you can imagine with having had a few episodes of haemoptysis (coughing up blood) recently it's been on my mind a lot. For the first few days this time it scared me - not because it hasn't happened before but because it was more than I've experienced - but now I'm less bothered. For 3 days I hardly slept, thinking about it constantly, worrying it was going to happen again and just generally freaking myself out. Wondering what it means for my health.

The fact is I still don't really know what it means for my health. All I know is it's just "one of those things" that sometimes happens in the lungs of people with CF and that I haven't had enough blood to warrant an embolisation (woop! :/ )

Anyway, I thought it had come from my right lung because I had some pain/tightness in there, but during a physio session in hospital I shifted old blood from left side, swiftly followed by more fresh blood. That confirmed for me it's my crappier left lung. In particular, the crappiest bit of my crappier lung! Thinking back to the 2 weeks ago when this all started, I remember feeling a pop at the bottom of my left lung when I went to bed during the day, followed by bit of a gurgle. It made me cough but I didn't think much more of it because sometimes things pop and gurgle and that's that.

What also came back to me was the blood from when I had the nasty cold, that I thought was sinus blood, but now I'm convinced it wasn't. I think I had a small lung bleed during the night while asleep, but there was so much gunk in my chest blocking it from rising to my mouth that it just sat there. I know this now because of the amount of crap that came up before the blood! Duh!

Anyway, tomorrow is the start of my 2nd week of IVs. I did feel a bit better before starting them after a week on oral septrin, but I decided just to stick to the plan of having IVs anyway. From Thursday til yesterday I thought I'd made a mistake because I wasn't shifting a single thing from my chest. I was just getting tight as heck and wheezy during physio, barely even coughing at all. I don't like to take any antibiotics unless I need them so I was getting annoyed with myself. This morning however was like a mass exodus from the lungs so maybe it wasn't such a bad idea after all, just needed time.

Friday, 1 February 2013


I'm sorry this video is on its side, stupid phone couldn't rotate it and neither can any of the video programs on my laptop. Anybody got any ideas? Also, I tried to embed it but it was having none of it. Technology does not like me at the moment.

Ok, so that's a quick update that I made on Sunday 27th Jan. On Monday I felt even worse than I did on Sunday and took myself back to bed, only to cough up pure blood after 45 minutes, forcing me to cancel all but one of my lessons cause I didn't want a repeat performance infront of anybody, especially kids! Tuesdays lessons were also cancelled as I trailed my butt the 3 hours to clinic (living on Arran has a lot to answer for!! It only used to take me half hour) to be asked to go back next week to be admitted to start home IVs. I can't go home straight away because of levels and I ain't traipsing back and forward by boat all week.

So, I made it 12 days between clinic appointments lol. In that time my lung function dropped about 10% (not too shabby), my sats dipped a little but the biggest kicker was losing 2.3kg in under 2 weeks. What?! To some people it might not be much but when you're only 4ft 10 it makes you look quite skinny. My mum was so funny "What do you mean you've lost 2.3kg? How is that even possible without trying? They must've measured you wrong!" I think she's forgotten what CF is lol. If I lose another kg I'm right back to where I was in April, which is skinniest I've been since I was 15. Ah well.

So I've not done any running this week. My Dr asked if I think I'm doing too much, and at the time I said no, because I don't think I am, but then that got me thinking about what I actually do. I walk the dog 5 days out of 7, usually for an hour minimum. I sing in a choir and smaller singing group, as well as sing in my own time. I work for myself, which involves long Friday and Saturday every week as I drag my ass 3 hours over to mum and dads on a Friday, and then back on a Saturday, with 15 piano lessons in between lol. There's housework to do and last few weeks we've been stressed with so much other stuff happening. I don't think it's too much but maybe my body thinks would certainly explain why I'm so exhausted.

Hey ho, onwards and upwards as they say! Hope all you lovelies are well.

PS I have good news, but I want to wait til it's absolutely finalised before I share, so keep an eye out!