Hospital Appointment

If you read the previous blog post 'London Trip And Going Downhill' you will know I had an emergency hospital appointment today. This is because on Wednesday I woke up feeling really ill, once again :(. Dad drove me up for my appointment this morning at 10:40am where I saw Sam who did my Lung Function tests. It's back down again to FVC 86%. So annoying after it improved while I was on Ivs!

Dr.Higton came and saw me afterwards and she listened to my chest and said it was quite crackily and that I need to get on with doing my physio every day! She decided to put me on some Rifampicin and Sodium Fusidate antibiotics to try and clear this cold and cough! They usually prescribe these tablets for 3 months but she said to just try a month and see how I go because last time Dr.Ho prescribed me with Rifampicin, I only lasted a week because I had an allergic reaction and came up with a rash on my hands and feet. 

                                                                                   

Me and dad then had to go down to the pharmacy to give in my prescription for my new tablets but that takes about half an hour to process so we then went back to clinic.

I brought along my Isleep machine to clinic as The Knight Foundation have funded me my very own machine so I can give the Brompton hospital theres back. So I took along my current one so they could set up my new machine with the same settings. The new machine is a bit different to the Isleep but it all works the same as it is a BiPAP. It is made by the same company as my puffer which is useful and it's much smaller and handy too :).

London Trip And Going Downhill

To begin with, yesterday I went to London! I went to the National Theatre with my college drama group to go and watch Port, by Simon Stephens. The play began at 2:15pm, so when we arrived in London we had just over an hour to go off and grab some lunch by ourselves. I went to McDonald's just by the London Eye (I'm a regular at this Maccy's from when I go to London for concerts) with my friend Sian, then Molly and a few of her friends. We got back to the theatre for 1:45 where we got our tickets and got into our seats ready for the showing. The play lasted about 2 hours, including an interval, where I had to make lots of observations as I have to write at live evaluation piece for my unit one AS Drama. However, the play was not as good as I had hoped. All of my drama group said the same. That there was not really a storyline to follow and nothing major happend. That was disappointing but it was still a good day out in London. 

                                          

Now for the rest. On Tuesday night I started to feel a cold coming along and have been coughing loads all week! Yesterday morning I woke up with the sorest throat, blocked nose and what felt like I was coughing my lungs up, not good :(! I went along to the trip but felt so rubbish. Us CFers struggle to breath properly anyway, but it didn't help at all having a blocked nose as well! I saw a photo a while ago when it was CF week which showed a way for you non CFers to see how we breathe. You should try it and then you'll see where I'm coming from when I moan about being breathless!

Anyway, as I was feeling so rubbish, I got home and went to bed at 8pm last night. I didn't go to college today either and mum rung Judith who said to come to the hospital tomorrow. The risk of saying no to Rifampicin maybe wasn't such a smart idea of mine. Off of ivs for a week and I'm already back up to hospital! Silly me!

I haven't done much at all today, Max came over to see me earlier with a McDonald's, he knows me too well! Love him! Then Alice and Charlie popped in when they came to pick Max up as his car is at the mechanics at the moment. So that was nice to see them all. Then this afternoon, I have literally been asleep in bed for about 3 and a half hours! Which is what I'm going to go back to doing now. I'll blog sometime tomorrow about how my appointment goes! 

No More IVs :D

YAY! You can probably guess from the blog title I have finished my 2 week course of ivs!

Mum took me up to Frimley yesterday for my appointment to see if I was any better as I had been on the ivs for the past 2 weeks. When I got there I did my lung function tests to find it had improved! Before the ivs my FEV1 was 1.75 litres and FVC 90% but yesterday they had gone up to 2.37 and 93! Which doesn't sound a lot but it was an improvement so I was happy! Judith came in and saw me just to say "well done look at those numbers" so she was pleased too.

Dr Higton came in and saw me afterwards to decide what we would do now. As I had improved, my colds gone and I'm feeling better in myself she agreed to just carry on with my normal medication and come back in 4 weeks to check if I'm doing okay. Which means no more ivs and is a bonus as she did want to try some Rifampicin antibiotics again as I still have a cough but I wasn't keen as I had an allergic reaction to them last time. So being a typical CFer I decided what was best for me instead of the doctor haha! Mum was laughing at me and said "you're such a risk taker. Happily saying you're 100% well when really you know you're not" but you have to take risks with your CF sometimes I guess!

After the hospital I went back to college and then saw Libby and went to the cinema in the evening. Then I had my final dose of Ceftazidime and mum took the gripper needle out afterwards. So I'm free from ivs again for a while!! :D

It's nothing to do with this blog post but I just have to shout out to my Alice Gee for passing her driving test today! Well done Gee!!

Me, Gee and Max went out for her first drive earlier to celebrate!

Early night for me anyway as I'm tired!

Night people :) x

Failed Bloods :(

I didn't want to go for bloods.

Yesterday, Abbs took me back to hospital as I needed to have some bloods taken to check my Tobramycin levels were okay, as I mentioned in the previous blog.

I put my Emla cream on both of my hands and we left the house at 10am.

When I got to the hospital, Judith was there waiting to take my bloods. So I had to quickly take the Tegaderm (plastic sticker keeping the Emla on) off so she could begin. My hands are normally very good with bloods, but when Judith put the butterfly needle in my veins decided they were going to hide away so Judith couldn't get the needle in. So she said to try and warm my hands up a bit as they were so cold and then she would try again after.

About 15 minutes after, Nic one of the nurses came in to try. She tried on the same hand but a different vein and managed to get the needle in. But just as she was about to take the bloods the needle moved out of the vein. So that was failure number two!!

Nic tried again straight after, just above where she had put the needle before as she was sure this was a good vein. And as I won't let anyone take bloods from my arm because of previous times I hoped this time it would work! Finally the needle went into the vein and manged to stay! So Abbi passed Nic the tube to attach to the needle for the blood to come out but it was coming ever so slowly. Then just as I went to say 'is it even bleeding?' the needle popped out of the vein again! Spoke to soon Noni!!

Nic managed to get the tiniest bit of blood so went to find out if that was enough. I have to have my bloods taken again on Thursday, after a week of ivs, to check the Tobramycin levels again to see if my body is reacting normally. But I think I'm going to let mum do them from my arm as my hands are clearly no good at bloods anymore!

After about 10 minutes Nic came back and said the blood people (I can't remember their actual name haha) would do what they can with that. So I attached my Tobramycin IV and me and Abbs came home then I got ready for college.

At college, everyone was saying its meant to snow really heavy from 11pm that night! I hate snow so I was hoping it wouldn't! But on my way to the bus station yesterday it was snowing quite lightly. Then when I woke up today there was so much snow :(! Oh well atleast it meant another day off of college!

Max came over earlier this morning for a while as he had to drive James to college for his exam. Yet because of the snow nobody bothered to go to college so he just came and chilled here for a bit. But he had to leave at about 12 otherwise he wouldn't of been able to drive his car home due to the snow!

The ivs keep making me feel like rubbish or I become tired at random times, like I do now! So I'm going to go for a granny nap haha!

Have fun in the snow :-)

IV Time!

I went up to Frimley today for an appointment as I've been really unwell lately and was off college yesterday. As you can probably guess from the post title, I've put been on some IVs.

My weight was down a little so I saw Penny, the dietician, who has told me to drink 3 of my Fortisip shakes a day instead of 2 to get some extra calories into me! (These are weight supplements).

I also saw Jo, the physiotherapist, as I haven't been doing my Isleep properly lately so she was basically telling me I need to do it to get my lung function back up. Which I knew anyway but just haven't been good with it recently. Back to my normal routine as of today! Then she also told me that the CF unit have funded me my very own Isleep machine which is amazing news! So I can give the Brompton their one back now :-)!

Then I saw doctor Higton and asked if she could put me on some IV antibiotics (which means I'm ill as I never ask for these haha)! So she went ahead and sorted me out the ivs to begin today. So I'm currently sat in treatment room 3 having my test doses of Ceftazidime and Tobramycin.

Then the drug centre are going to deliver the 2 week course of ivs to home tomorrow so I can begin them properly.

Luckily I can do all the ivs from home as mum, dad and me are all trained to do them so no staying in hospital being an inpatient woo!!

Just means I will be back up on Thursday or Friday for some bloods to check my Tobramycin levels are all okay.

I'm just waiting for Abbs to come and pick me up and take me to Mcdonalds now :-)!

(If you don't know what any of the terms are look on the CF dictionary page)

Tandem Skydive

Those of you who know me will know, since 1997 my dad has been doing fundraising events from Bungee Jumps, to Skydives, to climbing Kilimanjaro!

In 2011 after dad climbed Kilimanjaro Mountain and raised a total of £10,410, I thought it was my turn to do something to help out all of us CF sufferers out there!

So on Saturday June 22nd 2013, me and my two bestfriends Josh and Wade will be doing a 10,000ft Tandem Skydive all in aid of the Cystic Fibrosis Trust.

So all I ask is a little donation from you to help me reach my target of raising £1000 for the Cystic Fibrosis Trust.

To sponsor me visit www.doitforcharity.com/NaomiJ or see me in person.

Donating through the site is simple. My charity will recieve your money quickly and easily and if you are a UK taxpayer an extra 25% in tax will be added to your gift at no cost to you,

Or alternatively if you'd like to sponsor the boys visit either
www.doitforcharity.com/JoshuaP for Josh's page or
www.doitforcharity.com/WadeV for Wade's page.

Thank you so much for your support and bring on 22nd June!!

P.s I'd like as many people to come and support me by coming to watch the Skydive happen in June. So if you could come I would be extremley grateful.

Happy 2013!

Firstly I will start off by saying Happy New Year!

I have been so busy over decemeber with partying, Christmas, New Years Eve and my January exams I have not got round to updating the blog!

Well I'll start off with Sunday 23rd December...

On the Saturday 23rd December Me and my friends Libby, Lisa, Max, Tom, Greg and Tom all went to the college night at Pure Lounge Bar in town. I had work until 6 so it was all a big rush to get ready! But the girls came over and got ready and then the boys joined us for 'Pre-drinks' before we went. We had a really good night and partied into christmas eve together as it didn't finish until 1am. Here are some photos :).

 

Then I spent Christmas Eve daytime recovering from Pure and watching Home Alone 2 with dad.

Christmas day was really good! We got up and opened our stockings at about 8am (the only day I will get up early voluntarily!) but unfortunately, mum got called out to a homebirth so we didn't see her until the afternoon :(. After opening our stockings, Me, Abbi and George went downstairs and opened all our presents with dad. I got so many presents including Nike Blazers, Clothes and lots of other bits. Mum even got me a tambourine for a joke as I asked for one after seeing Robbie Williams Live. My main present was a Bose wireless bluetooth sound system for me to listen to in my bedroom and take to parties! It is really small but goes so loud!

Once presents were done, dad went out and walked Maddy. So we made ourselves a christmas fry-up. Then got dressed and ready to go to Uncle Tim and Auntie Selina's house to see them, Chloe, Adam, Grandma and Grandad. We got to Tim and Selina's house at about 1:30pm and then Mum came at around 2pm. Then Selina cooked us all a lovely traditional christmas dinner which was lovely!!!

After dinner we all exchanged gifts and I recieved some more lovely gifts. I had a great day playing games and spending it with family.

Boxing day I had to work 9am-2pm unfortunately, but after work Grandma and Grandad came over and mum and dad cooked a roast beef dinner. It was lovely but as I was so tired I went for a nap (lazy hehe). When Abbi and George got home we played more games and Abbi's boyfriend Adam joined us too.

On the 27th we all went over to Uncle Mark & Jo's house. It was great to see everyone again and I spent most of the afternoon playing games with my cousin Jed. We went cow racing up and down the hall way on his and Billy's new cow space hoppers. Ofcourse I lost everytime, Jed was just to good!

Jo cooked us all a lovely buffet and after that we opened more presents which was good! We got Jed a scooter which he absolutely loved! After presents we ended up playing 'The Cube' board game which was so good it lasted until it was hometime.

On the 28th, Me, George, Mum and Dad all went up to Winter Wonderland in Hyde Park as mum had booked for me and George to go ice skating. It was so Christmas and cute! I loved the Ice skating as I haven't been in ages after quitting my figure skating I used to do. After ice skating we went into Topshop sale in London and I spent all of my christmas money! It was such a lovely way to end Christmas!!

NEW YEARS EVE :D

On New years eve, I spent the night with the boys; Josh, Wade, Jack, Jay & Lee at Josh's house as his mum had a party. It was such a good night, one of the best parties in ages! And let's just say we are not doing Jaiger and Whisky shots again, ayy boys ;)! Think everyone was sick except me for once woo!!! It was a great way to end 2012 with my favourite people and I started off 2013 hungover with mum, dad and a Mcdonalds... Lovely!

Last Thursday I stayed at Libby's house as I hadn't seen her since Pure, so that was a really nice evening. Love you Libs xoxo.

This week I have had my Media and Psychology exams which were okay, well the Psychology one was. The media one was so difficult and I felt really ill anyway so wasn't in the mood :(. I have had a really bad cold since New years eve and its got worse this week. So mum rang the hospital yesterday and I am either going to be seen tomorrow or Tuesday. Time for some IV's I think. I've got away without having any for almost a year now so I've been pretty lucky!

I also have something else to inform everyone on which I am so excited about, but will dedicate a new blog post just for it :D