Tuesday, 29 January 2013

Blog Makeover, IVs & Kalydeco!

As you can see, my blog as had a makeover! I was fed up of the old layout and finally found out how to do a few things to make it look a bit nicer :)

On to the important stuff! Last week I began to feel a bit better, however still had high temperatures and was struggling to breath when walking around. Over the weekend it seemed to improve which was good. I went back to hospital today with the hope of coming off IVs but no such luck! My lung function was pretty much the same as last week so Dr Ho said one more week on IVs should do it as although I've had two weeks on the Coly I've only had one week on the Timentin so he reckons that's starting to work but if we stop it now, I might go back to how I was and we certainly don't want that! I am annoyed as it means it's three times a day so I can't go back to work :( However the children in my class sent me lovely letters and pictures saying they missed me which made me burst in to tears! I'd had a bad morning and that had cheered me up completely! :) I can't wait to go back.

Even BIGGER and BETTER news, I had my sweat test done today and bloods in preparation for Kalydeco! They're hoping either next Wednesday or the Wednesday after I'll be able to start Kalydeco :):):):):) Very exciting, cannot wait. So watch this space with my updates ;)

Wednesday, 23 January 2013

CF picked the wrong lady to mess with ;)

Hey all! 

Despite all the tissues, coughing, phlegm, IVs and nebs I actually think I'm on the mend! I went back to hospital yesterday and they popped me on another IV as I'd reacted to 1 so stopped it and its not enough to only be on one IV! So stated on the Coly but now I've started Timentin which I haven't had for over a year so I'm hoping it'll do some good :) 

Only problem is the Timentin is three times a day which is a pain as I'm now also back on my month of Cayston (neb) so I've got tonnes of things to do, how exciting.. I'd do anything to go back to work, I miss it loads and I can't watch anymore day time tv or I'll cry! 
My lung function had increased when I went back yesterday, by half of what I had lost which was a surprise. I am determined to get back the other half by next Tuesday and come off IVs! Still getting quite breathy when walking about and doing things but I am able to do more which is a promising sign :) 

So lets hope my next blog is me coming off IVs! Apparently Kalydeco should be coming in the next few weeks so keep checking to see if I've got if and how I'm doing :) I need it now so much, it's so close I can almost touch it..just needs to come quicker! I'm very impatient ;) 

I've made a list of things I want to achieve this year, especially after Kalydeco when I will feel more well to achieve some of them. Some are silly little things and some more important so we'll see what happens and if I can manage to do them all! 

For the next week I'll be doing my 6+ nebs a day, IVs 3 times a day, physio (which I really do need to step up on) and hopefully this chest infection will realise its not wanted and will leave! 

Friday, 18 January 2013


This past week has been such a struggle for my poor little lungs. I've barely been able to walk around the house and even the small tasks of having a drink or eating leave me out of breath. Tuesday I was at hospital which I explained in my previous blog post and went on to IVs. Yesterday morning I woke up with a VERY high temperature of 39.4 and was just shaking and shivering, being sick and a complete mess. Mum stayed off work to look after me because my chest was so bad I couldn't get drinks or my neb or anything. 

I took the usual nurofen and paracetamol but it took 4 hours to get my temperature to around 37.5 which is still up a bit. For the rest of the day and night it just wouldn't stay down and I swear I've not felt this bad since I had my awful spell in Nov 2011 which I've blogged about before. 

My lungs feel exhausted, my whole body aches and although I'm a positive person it's sometimes hard to always stay positive when you feel this bad..surely everyone's allowed to moan sometimes?! 
Luckily I've had some lovely friends texting me and calling me as daytimis so boring I might go mental! Everyone always says a pj day laying on the sofa doing nothing is ideal but I swear when you have no choice it's horrible, I'd do anything to be going out!
And to make matters worse there's lots of snow now so I'm praying Tom can get home from uni okay and the trains aren't cancelled so I might get a chance of seeing him this weekend (we do 1 weekend at his uni and 1 back at home). If I can't see him ill probably end up crying! Already been in tears this morning because I can't see my family tomorrow (we'd planned a meal out) and I'm just so fed up of feeling so crap! 
I rang hospital to tell them I'm even worse than when they saw me on tues and Judith said ideally they would keep me in but there still aren't any beds :( so if I feel worse I have to go to A&E. I have a hospital appointment for Tuesday so we'll see what happens then. 

Anyway, I'm off to do some more relaxing as there's nothing else to do! 

Tuesday, 15 January 2013

IVs & narrowly escaping a hospital admission!

So on my annual review I was starting to feel yucky. Over the weekend it's got a lot worse..in the mornings it's been so bad, to the point where I've been having to have a break half way down the stairs as its so much of a struggle, really high temperatures and all achey. Mornings are always the worst, feels like my lungs have just given up and last night I was thinking I just give up..I do all my treatments but still end up like this. But then I thought no that's not the attitude I usually have so I focused on the fact I'll be getting Kalydeco soon :) 

I popped to hospital today as I felt so bad, had to get mum to wash my hair as I just couldn't manage. Got to clinic, sats were a bit down from last time but still 96 which is okay. I'd already had my atrovent which opens me up a lot, and considering I'd had that which makes a big difference my lung function was still only 1.16 which calculates to around 33% which isn't good! That's down a whole litre in just two weeks! 

My temperature was up to 38.9 which is very high so that made me feel quite loony as it always does! 
I saw Dr Higton who said she would keep me in but there are no free beds at the moment! So she said to go home on IVs and go back in a week to make sure they're doing good! Unfortunately all the IVs that the bacteria weren't resistant to are IVs I'm allergic to! Seeing as tazocin only gave me a high temp at day 10, we thought we would try it again. And colomycin gave me numb hands and face but that can be a normal side effect so she said to have a half dose of that and see how I go!

It's just so tiring having to breathe, any energy I have I end up using on that or thinking 'I feel better, I'll pop out for half an hour to waitrose to grab some food' and end up knackered! 

I've got to have time off work as my chest isn't up to doing much which is horrible as I hate missing work as I love it but luckily my work are so understanding...I'm very lucky! :) 

Anyway I'm off to have a sleep as I'm knackered! Lets hope these IVs do the trick! 

Thursday, 10 January 2013

20th Birthday & my Annual review

First of all, yesterday (9th Jan) I turned 20! I made loads of chocolate cakes and rice krispie cakes to take in to work which ALL went. 

My parents got my a bracelet from Tiffany & Co, but because my wrists are so small it had to be sent off to be made smaller so it wont come until 23rd Jan so I'll have to wait for that one ;)

On to the main thing, my Annual review was today. And on a day where I would have loved to have been at my best I feel horrendous! The past couple of days I've had a high temperature, body aching all over, coughing tonnes and just struggling to walk about as much..especially walking up and down stairs is more of a challenge!

This morning my lungs thought 'hey lets really throw something in the mix for hospital and make her cough up blood!' so that was thoroughly enjoyable..not. Luckily it was only streaks and not a full on bleed!
I went to hospital and saw Judith who filled out some bits & bobs. Rada did all my obs..sats were a little squiffy but then went up to 97 so that was ok. Heart rate was pretty fast but it always is when I have a high temp! Filled out more questionnaires about my health in the past year etc. Had all bloods done and a chest xray too. I must be poorly, I went up in the lift..and I HATE lifts! But there was no way on earth I could have walked up those stairs!

The dietician came in..low & behold she was really nice to me! I reckon maybe someone had had a word with her as I said I was upset last time as they nag and nag when I need to put on weight but when I've managed to put it back on and keep it on, they never praise or come to see me. So she walked in saying how happy she was etc... mentioned about in the future a peg would be good if I ever needed one as I cannot stand the supplements but we'll cross that bridge when we come to it, last time I managed to force myself to eat in the end and I really don't fancy a peg.

My physio said she wouldn't bother with the exercise test as I just couldn't do it. Talked to her and she gave me stretches to do for my chest and back as I was saying I get back pain and my posture is really bad. She also suggested getting a pilates dvd which I wanted to do anyway :)

Judith had another chat with me, all about the future and stuff. Then everything got a bit emotional when she said 'do you think about the future' and I said 'yes quite a lot, especially since Sammy passed away' and ended up bursting in to tears and being a blubbering mess! 

Hopefully by Monday I'll feel better or I'll be ringing hospital! 

Tuesday, 1 January 2013

Happy New Year and a trip to A&E!

Happy New Year to all my lovely followers and blog readers :)

I'm hoping 2013 will be a healthier year, especially with the news that Kalydeco is being funded as from today! I've just got to wait now until my hospital gets hold of it and then finally I can begin taking it :)

After all the excitement and rush of Christmas and New Years my body thought it fancied some attention so this evening during my IVs it decided it would react..giving me swollen tingly lips, numb hands, red rashes everywhere, really itchy and then my lungs joined in and it was harder to breathe. I was just going to sit at home and see if it passed but it got worse so mum took me down to A&E. They rushed me through and were really good; the triage nurse gave me an antihistamine and did all my obs.. sats were down a bit but nothing major. By the time I saw the doctor I felt better so he said to let CF unit know tomorrow morning and take some antihistamines for the next day. Fun fun fun, I like to cause a bit of drama now and again ;)