Friday, 29 March 2013


What a mental week!

On Friday (22nd) we woke to our power going off and on every couple of minutes before shutting off completely...and staying off. No doubt most people saw Arran on the news and the absolute state of the place from the snow. Where we live is over the other side of the island from what was shown on TV and is more sheltered, so although we had loads of snow, we didn't have the 10ft drifts to contend with.
On discovering the island still had no power on Saturday morning, James and I decided to head off the island to stay with my mum and dad. We had spent Friday night staying with friends who have a wood/coal fire so we could get a heat and spent the night playing monopoly by candlelight while drinking wine. Delightful haha.

Anyway, we took a visit back home on Tuesday to see our cat (who is being looked after by our neighbours) and found out our power had come back on via generator on Monday night, but that our boiler had given up! ARGH! By the time we left again we had got the hot water working but still had no heating. Fingers crossed it's working again when we go home tomorrow.

My exam pupils sat their exams yesterday and seemed to do really well! Couldn't be more proud of them, they really had worked so hard. I can't wait to see their reports and hope they are pleased with whatever grade they get.

On Wednesday I managed to get an appointment with physio up at the hospital, because despite all the physio I was doing in the 12 days since my clinic appointment, I was still barely shifting a thing and it was really starting to annoy me. On top of that, I was still coughing up blood every few days and seemed to bring one on during physio on Sunday night. I don't know if the bleeding has subsided or not as the longest I've gone without is about 6/7 days since January so I'm keeping my eye on that and hope to at least last 8 days this time. Who knows. Anyway, back to the point! My physio appointment went well even though we didn't manage to shift anything. She said she couldn't hear or feel a thing moving, and I could've been convinced there was nothing there if it weren't for the X-ray telling me otherwise, as well as the weird tickly feeling at the top of my chest. We decided I need to be back on hypertonic saline but because I can't tolerate the 7% I  have to dilute it to 3.5% and hope it works. I also got an AD belt to try but can't decide yet if I think it's worth the bother, considering I'm using PEP and various nebs anyway. I'm finally starting to see some progress since then though and on physio's request sent her a disgusting picture and she thinks I have bronchial casts. Yum :/ Words cannot describe the taste....sorry, but I've honestly never tasted anything that made me want to throw up more.

I swear my life isn't all disgusting!!! Lol.

My sister is coming home tonight so I think we are going to get a Chinese take away and maybe a wee cider or something, but I'm completely knackered and working tomorrow morning so it'll not be a late night.

I would really love to get off to somewhere hot and sunny...

Friday, 15 March 2013

the bigger picture

After spending all of Wednesday feeling anxious about clinic on Thursday it turned out to be the most productive visit I've had in ages.

For the first time in a year I saw a consultant. What a difference it can make having a different pair of eyes.

I was immediately sent for a chest X-ray because of the bleeding which was worse than my pre-IV X-ray. I also had a "bad" X-ray in October so there were a few there to compare it to. My right lung in particular is full of mucus plugs blocking off the lower airways and it's like trying to unstick glue. Even with the help of a physio there was no movement what-so-ever. The weird part, though, was that my lung function was actually up. Only slightly, but still up. I don't know sometimes.

I'm always being told "you're lung function is fine" even though I can clearly see and feel that it's been dropping. Finally, someone took the time to look backwards and see that in fact my lung function, although not horrendous by any means, was not "fine" - I'd lost about 15% in a year. On a good day. So because I complain of tightness a lot and not managing to get anything up during physio but ending up in a wheezy mess instead, he decided to try salbutamol through nebuliser, and although it felt like I'd inhaled water (honestly thought it had been completely useless), it put my lung function up to a figure I thought I'd never see again. Stoked. He changed my steroid inhaler to a better 1 too.

That does mean that I've come full circle on the asthma front - having had it as a kid, for it to bugger off, then come back. I don't mind though, now that it's been confirmed it's there, it can be treated.

As for the bleeding, nobody knows. I'm not allergic to my aspergillus, my bloods were fine, so I just have to hope it was maybe very irritated airways or something.

It was a weird atmosphere...relaxed but intense.

So I left on a bit of a high for a change. I went to visit a couple of very good friends last night for a catch up as I don't see them nearly enough with living on Arran. It was great to get some girly chat, as I don't have anywhere near enough female friends on Arran who are around my age. Or who I know well for that matter.

Anyway, I don't really have much else to say, just wanted to write what had happened at clinic because it finally feels like something good happened.

Monday, 4 March 2013


Frustrated is a bit of an understatement.

Yesterday was a bad day. I don't remember the last time my chest felt so crap. It was like someone had poured glue down into my right lung, I just couldn't get a deep breath in it was so tight. I did everything I could to try and shift the stuff that was stuck - nebs, inhalers, physio, fluids, taking the dog a walk - all of which worked a bit eventually but it wasn't straight forward. Literally 1 minute into my walk with Fionn I started having haemoptysis and coughed so much that I vomited. Nice. The rest of the day I had super gross sounding cough and continued to have blood, in varying amounts, til about 5/6pm (after it starting at lunch time).

I'm annoyed cause it's a big change for me but I feel like I'm the only person taking it seriously. The fact it's "normal" in CF patients doesn't matter to me. I want to know why it's happening and I want it to stop! I don't want to become part of the group of CF patients for whom coughing up blood becomes a regular and normal thing. It's not normal, end of.

I'm also frustrated because it puts me off doing the things I love. I don't want to sing for fear of setting it off again. I don't want to go for a walk/run because it'll probably start it again too. I know I need to do these things to keep my chest in working order, but it seems counter productive if it's going to cause bleeding, after which I'm not supposed to do much physio, and certainly not allowed to use my PEP, and nebs aren't advisable either. Point?

On another note, it's less than 3 weeks til the Arran Music Festival. I'm singing, playing piano solo, accompanying singers, and just generally running about like a headless chicken for a night! I'm hoping it'll be a fruitful first festival for me and maybe result in some more work. Fingers crossed.

So, I'm off to get dressed and take Fionn a walk before going a rehearsal for the festival and taking a few lessons later.