Nana

Started IVs yesterday, i'm on Tobramycin and Ceftaz like usual. My lung function is down to 37%, weight is 56.8kg, not sure if that's down/up, not really interested! Got a headache yesterday and woke up with one this morning which paracetamol doesn't seem to be shifting, hoping it will settle down, really can't face having headache for 2 weeks.
I'm taking ondansetron for sickness, certirizine to try prevent me getting sore, puffy eyes and i've also started a 5 day course of aciclovir to treat a coldsore that popped up to say hello on Tuesday morning.

The nurse came from calea this morning to do my tob levels, this is to check the levels of tobramycin in my blood after the first dose, as too much tobramycin can make you loose your hearing.

Found out today that my Nana was admitted to hospital last night, she is currently having chemotherapy as she has terminal lung cancer but her platelet count is very low (it should be 150 and I think my mum said it was 39) so she is having a transfusion. It's bad enough that we know her cancer is terminal and her treatment is to give her longer, but now she might not even be able to have anymore treatment so it's very worrying, my Mum said they will find out next week. So fingers crossed the news isn't bad next week as so far my Nana hasn't had good news and I think she deserves some.

My Nana, Mum and I when we went to London for my Hen Night

Awaiting permission

I had my hearing test on Monday, you sit in a room facing the wall with some ear phones on. Then you hear beeping noises of different frequencies and have you have to press a button when you hear them. They become fainter, lower in frequency etc. to see how far you can go I guess and the nurses plots it all on a graph type thing. This is all abit difficult to do when people keep slamming doors outside and walking past!

I will admit at some points I could not tell if there was a noise or if I was just imagining it, but she said to press the button if I heard the faintest noise so I did! She showed me the results and said they were normal so I should be OK to start my tobi nebs again but she would confirm with the doctor and call me tomorrow (Tuesday) as the doctor had gone home by this point.

So Tuesday arrives and it gets to lunchtime and no one has called me, so I call them. I am quite eager to start my tobi nebs to try shift this cough I have before it gets any worse, I was nearly sick yesterday morning from coughing so much which is not normal for me. They said they couldn't find the nurse and would get her to call me back, I also booked my next outpatient appointment whilst on the phone. The doctor had said he wanted to see me in 4 weeks which according to the nurse is the week starting the 27th April, I told her that was 6 weeks. Anyway my appointment is in like 3 weeks now as 4 weeks worked out on the bank holiday Monday. I don't want to leave it too long since my lung function still isn't great and the doctor made it clear he wanted to see me sooner rather than later because of all the treatment I have been on recently, for a start I need liver blood tests because I am on voriconazole.

So anyway, it got to about 3pm and the nurse had still not called me back. So I called again only to be told she was out on home visits! Argh!!! I asked the lady to ask the doctor about my hearing test, apparently the doctor has not been given the results and will get them off the nurse tomorrow and call me tomorrow (which is now today). It's now 11.15am and still no call, I bet I end up having to call them. It is so annoying!! I might do my tobi anyway. I know they are busy and it probably just slips their mind, but it's so frustrating that I have to keep calling, I feel like I'm annoying them and you get someone different answering the phone every time which doesn't help!

Secret carpark space is not so secret!

I finished my IV's today. My secret carpark space at the hospital was taken! The horror! I had to park on the main road carpark and walk across and I bumped into a certain lady off the cf forums who recently had a transplant so that was nice. Don't worry we were outside and I didn't cough on her!
I had loads of bloods taken for various things, I had to fast from midnight last night for them. My arm is all red and sore but no surprise there, the staff were baffled and at a loss what to do. The doctor called a dermatologist who is going to have a think about what I could do. He did suggest maybe using some really absorbent dressing like what they use on old people's bed sores or something, to absorb the weepiness. Its so bad the gauze was drenched and you could literally squeeze the moisture out of it. They said they will order in whatever they think can help me.
My weight was 56.5kg and my fev1 was 44%. So not great but better than before, the physio said we will see how it goes because sometimes it can improve after the IV's finish, which is true and I do feel like my chest is better. I shall resume my swimming and gym sessions to try bump it back up.
I told them about my side effects and they said my might give me a lower dose of colomycin next time, the nurse thought I had been crying when she saw my puffy eyes. I can't remember if I mentioned my puffy eyes but they basically got really puffy and are really dry.
I didn't have my hearing test again! I am going back on Monday for it. Apparently it was too busy so they didn't have the time and since the room isn't soundproof it can affect the results if loads of people are making noise (banging doors etc.)

I went out for lunch with my dad and had like the best lunch ever. I had Yorkshire puddings for starters (we are in Yorkshire afterall), then a toasted sandwich with chicken and stuffing soaked in gravy with onion rings on the side, then for dessert a jam roly poly pudding with custard. Yes that's right I ate it all! My dad said he doesn't know where I put it.

The project I volunteer for has a newsletter which we can all contribute to and volunteers are responsible for organising it. I asked if I could do a article on cf and have spent the afternoon doing that, plus other various bits and pieces. I'm so glad the sun is making an appearance, it makes you feel so happy!

I've got my eye on you!

I've added a counter onto my blog, it would be quite interesting to know how many people read it! It was my dad's suggestion over lunch today, so thanks daddy!

Yesterday I had to be rescued by my neighbours, I took Alfie for a walk and when we came back I decided to be smart and reverse into my space... I got stuck, my wheels were spinning and there was a smokey smell coming from them. One neighbour saw me when he was taking his rubbish out and another heard my car screeching, so they helped push the car. It's because it's all on a slope you see and there is no grit available, so it's very tricky! Anyway I was rather embarrassed and decided to not go to the gym as I couldn't face trying to get out!

Alfie doesn't walk very well in the snow. We went around a lake and one side was OK as the sun had been shining on it, but the other side was all slushy and muddy and Alfie got a wet tummy, legs and mane (yes my dog has a mane!). So he was shivering, had a little sad face on and was walking very slowly, so I ended up carrying him! I need to get him some kind of all in one suit, but sadly I cannot find one....!!

I have stopped my tobi nebs because I want this ringing in my ears to go and I looked on the internet (never 100% believe doctors!) and it said it can cause ringing in the ears, so I'm going to be safe rather than sorry! Plus I might go crazy if it carries on!

I finally did go to the gym today, I haven't been for nearly two weeks! (my dad got my car out of the space for me, it did it fine for him, typical!). The gym was hard work, I had to overdose on my ventolin inhaler and I coughed alot which doesn't make me look very cool! I can't have weeks off as then it feels like I'm starting from scratch again. Choice of music at the gym today, UB40 greatest hits! Yes I must be getting old...!!

Here's a video of Alfie playing with his kong, he has figured out that if he chucks it off things then the treats are more likely to come out, however on this occasion he was not very successful. Yes I know... my dog is a genius :o)

Snowy Birthday!

For my birthday I went over to see my brother in Hull with my mum, we were not going to let a little bit of snow stop us! I then had a chinese takeaway foe tea because the Indian takeaway was shut! We also had to get it delivered because the car got stuck!

For my birthday I got some clothes from my parents, a new camera from Pete, some pj's (Is it me or are getting new pj's the best thing ever?!), some socks for my ipod (to put it in, not to wear on the ipod's feet...!), money and some earrings. I also got a cake made for me by my Nana which was delivered by my Auntie and Nana.

Pete and I made a snowman last night which we named Reg, unfortunately his head fell off about an hour after we made him. RIP Reg!

I called the hospital today as I've had a ringing in my ear for about 5 days, it also echoes inside my ear when I talk! I called the hospital because tobramycin can affect your ears and make you go deaf so I got abit worried! I was on tobramycin when on my iv's and I've started my tobi nebuliser since I finished my iv's, which is also tobramycin but in a nebulised form. The doctor says the tobi nebs can't cause ear problems as not enough is absorbed and he says some people can get a ringing from tobramycin iv's, I have to call back if it gets worse or I start to feel dizzy. By the way, is it wrong to find one of the doctors quite cute? I'm not naming which one, I don't know who reads this!

I have felt pretty rubbish today, I keep feeling light headed which I think is my blood sugars getting low. Last week the hospital rang to check up on me as when they took my bloods my blood sugars came back as 2.8 which is low so they wanted to check I was OK. I'm going to take them everytime I feel lightheaded (I've got a monitor thingy to prick my finger with) and then tell the dietitian when I see her next. Usually if I have some chocolate I start to feel ok. People with cf can get cf related diabetes, I'm not sure how it is caused but it's different to normal diabetes, it's classed as type 3. We get tested every year with a glucose tolerance test. One of my tests once came back as abnormal but not abnormal enough to be diabetic, I was classed as having impaired glucose tolerance, kind of half way there. So basically my sugars can go abit funny sometimes, however another test 6 months later came back as normal, so I think I'm just weird! I've also been feeling incredibly tired and achy. Sometimes I get sick of feeling ill all the time, why can't I just feel good and have a normal day?! Am I just a wuss who picks up on everything that's wrong with me? I don't remember feeling like this when I was younger, I feel like an ill person, I never used to think I was ill, it's not a nice feeling. It's even worse to know your probably always going to feel like this, most people get ill and then recover, yes I have iv's and feel better, but I never recover properly.

Heres some pictures from my birthday, on my new camera! In the first picture I'm wearing my new coat