Italia

Well hello there! Or should I say Ciao! That's right, I am back from Italia!

We had a fantastic time, we stayed in Sorrento which is close to Naples. Its a beautiful place and we would go back again. Even the people are beautiful, I hate them haha! There are lemon and orange trees everywhere, they make a nice alcoholic drink called Lemoncello with the lemons and that's coming from someone not a fan of lemons!

My CF has being very kind to me lately, before our holiday I was going to the gym 2-3 times a week and walking Alfie almost daily and whilst on holiday I have felt good too. My chest always feels better on holiday anyway as I think the heat dries it up so I cough less but it means once I get home there is alot of think mucus to come up! I had an outpatients appointment today and my fev1 is 42% and my weight is 54.5kg, I'm surprised I'm not about 60kg with the food I ate on holiday! I must admit I did get sick of pasta and pizza though and will be eating other types of food for awhile! So I got a thumbs up from the doctor, yeay! I also had a ultrasound this morning to look at my liver, its standard I have a scan every 2 years. I had to fast from last night and the scan took about 20 minutes.

I wasn't very impressed with Thomson with regards to my oxygen, they got really funny about my letter saying I had changed the date on it (which I had to save time and effort, I didn't realise it would be a big deal!), so I had to get another letter signed by my doctor which isn't exactly easy, Pete had to do it by fax at work to get it in time. They then didn't send me anything to confirm the oxygen was arranged so I had to call them, they claim to have emailed me.... When we checked in we couldn't be sat next to each other, we had the aisle between us, turns out needing oxygen gets you no extras or special treatment! When I got on the plane I checked they were aware I needed oxygen and they told me they had been told I 'might' need oxygen! So I got dumped with this stupid tank that required a white mask with a bag on the bottom of it, not the nasal cannula I had been promised when I spoke to the extra needs department! I had to sit straight else the bag kinked and got cut off, I felt like I couldn't breathe with the stupid bag and of course I looked an idiot! Luckily the seats behind me were free so Pete and I were moved to them so my tank could have its own seat, which begs the question why we were not seated there in the first place?!

Anyway I complained to the rep when we arrived and she made sure they knew I needed oxygen for the whole flight on the way home and would like a nasal cannula which thankfully they arranged! Again we had an aisle between us, the seat next to me was free for my tank which was lucky as it's not nice having the tank by your feet. This tank only gave you oxygen when you breathed in through your nose which was slightly annoying but alot better than the mask!

I was really tired in the airport on the way home, how much walking do you have to do in airports?! I'm seriously considering asking for a wheelchair next time so Pete can wheel me around!

We went to look around Herculaneum and Pompeii (both destroyed by Vesuvius in 79AD) the Sunday before we came home which was amazing, you can't believe the house you are stood in or the mosaics you are looking at are nearly 2,000 years old. Pompeii is massive, it was home to 20,000 Romans so we only got to see a small section of it really. I struggled walking around with the heat, dust and uneven floors but it was worth it!

We also hired a car for the day and drove on the Amalfi Coast, we got upgraded to a convertible Fiat for free which was good! Those roads are so scary, Italians are crazy drivers and the roads are narrow and bendy! It's a great drive though and very beautiful.

We spent the rest of the time relaxing by the pool, I of course sit in the shade. The heat makes me feel unwell and I'm very pale which people like to point out to me and make fun of all the time. Yes I don't tan, yes I am pale but I have accepted it, it's how I was born and I am not ashamed of it. I don't know why people have a problem with paleness, everyone is obsessed with getting a tan. I am pale and proud!

I've made a video of photos from the holiday as there are so many, the song is 'Torna a Surriento' (Come back to Sorrento), what other song could I have had?!

Ancient Nebulisers

I had outpatients today and had to have my annual bloods done. This meant I had to fast from 9pm last night (not really sure why I have to do this!). They then took 15 tubes of blood from me, I have no idea what they are all for, I know one is to check for clotting and some are to check vitamin levels etc. It took her three attempts to get blood from me, they can't be taken from my port, again not sure why! First she tried in the crook of my arm, then in my right wrist and then my left wrist where she was successful. She said often when people have fasted it makes it harder to take blood, she thinks it might be because they are dehydrated. Anyway we got there in the end!

I also had an ultrasound to check on my liver etc, I have one of these about every 2 years. I had to wear a gown which I have never been made to do before, but it turned out better as no jelly then got on my top or bra. The stuff gets everywhere because she moves the scan thingy over your ribs and back and you end up covered! It doesn't hurt, infact it tickled when she was doing it over my ribs. The only time it hurt abit was when she was ramming it under my ribs to try to get a picture of something, but it wasn't exactly painful.

My fev1 is down to 36%, I can't believe it! My stats are 97% which is good and my weight is down abit at 53.3kg, not surprised really, my appetite has been abit poor lately. I have come to the conclusion that my appetite just goes whenever I am stressed or excited. Because I don't feel unwell the doctor said to just see me in 4 weeks and to call them in the meantime if I start to go downhill. I might just be having a bad day or it could be because I have missed two days of nebs...

Yes you read it right! I-neb nebulisers require disks for them to work. The disk has so many cycles on it and each time you use it, it goes down one, when you get to zero you need another disk otherwise it won't work. I use 5 cycles a day, 4 for my tobi (each tobi dose requires two cycles on the I-neb) and 1 for my Dnase. So a disk with 120 cycles lasts me just over 3 weeks. I have to call the company when I need new disks, can you see where this is going....? In all the moving house madness I didn't realise I had gotten very low and on Saturday I noticed I had 2 cycles left. Whoops! I left the company a message to pick up on Monday and some more disks arrived on Tuesday. But that left me the weekend and Monday with only a Porta-neb to use and one chamber when Tobi and Dnase should be done through different chambers as one stops the other working.

This is me not looking very impressed using the stupid porta-neb to do my Dnase, it took about 20 minutes. I then gave the chamber a good wash and used it to do my Tobi the next day. When you do tobi through this ancient machine, you have to sit with a tube going out of the window which isn't very long, so other people do not breathe it in. Well it took over half an hour to go through, I got bored of sitting right next to the window looking like I was smoking a bong and turned it off in the end. You don't get these problems with the I-Neb! Anyway I decided I wasn't doing it anymore, it takes the mick, no wonder people never used to be compliant with their nebulisers! So I threw the thing back in the cupboard and I hope it never makes a re-appearance anytime soon!

I went out on Saturday night and had a great time. Then went to my Nana's for lunch on Sunday, I was so tired, I just wanted to sleep! Pete's cough is not going, infact it seems to be getting worse, I am terrified of catching it. I have a weeks worth of Amoxicillin in 'Gemma's pharmacy' cupboard which he is taking. When I was on it I had 1g (1000mg) three times a day, I've given it to Pete and even though the instructions say the average dose it 250mg a day with severe infections at 500mg (what the heck are my infections then?!), since the tablets are in 500mg that is what Pete is having three times a day. If it is an infection it should hopefully clear it up and before anyone lectures me on giving someone else my medication, Pete was put on amoxicillin for a manky toenail he had and my dad was put on it for sore tooth, they give it out for anything and everything! Just call me Doctor Gleave..!

We are having a house warming party on Sunday! I hope I don't get too stressed! If it goes OK we might have one for family towards the end of May, this one is for our friends.