Monday, December 30, 2013


I've been a little slow on updating because my hospital appointment was on Christmas Eve last week so we were busy preparing for Christmas after.

Mum took me there for my appointment at 9:40am. First I saw Jackie and she did my obs and lung function. Unfortunately, even after two weeks of Iv's and physio I still had a cold and the lung function had only improved by 9% so was up to 58%. So I was expecting to have my Iv's extended for another week.

Dr. Ho came in a while after and spoke to me about my lungs. He said the Iv's are obviously not clearing the infection and are just making my lungs less infected when on Iv's but as soon as they finish the infection fights back again. He said Iv's may not always be the best for an infection and it could simply be to do more physio and try and fight it. So instead of an extension on my Iv's, he stopped them and told me to go back to my Bramitob instead of the Promixin in my puffer. Then everyday an hour before physio, to do my DNASE nebuliser and when I do my physio treatment he told me to use hypertonic saline in the BiPAP machine instead of normal water. I wasn't happy about this as hypertonic makes me loose my voice but I agreed to try it anyway. 

After my hospital appointment, mum took me back to work but I was only working until 4 as we closed early for Christmas.

When I got home from work on Christmas Eve, I had a really bad headache and my voice went all croaky! I couldn't blame it on the hypertonic saline as I hadn't even started it yet. So I took some tablets and tried to feel better as we had people over for Christmas drinks. Once I had the last dose of Iv's, mum took the port needle out and I went and had a bath as I still wasn't feeling well. Any CFer knows how good it feels to be able to have a proper bath once the port needle is out! After my bath, everyone had left so the five of us watched some telly and then went to bed ready for Christmas.


On Christmas morning, for the first year ever, we didn't get up early! I woke up at 8am but mum said the night before we weren't getting up until 10am. So I went back to sleep, although I heard mum up anyway but I couldn't be bothered to get up haha! At about 9:45am I had been awake for a while so was about to get up when Abbi texted me anyway asking if I was awake. So we got up, woke George up and took our stockings into mum and dad's room to open as we do this every year. In my stocking I got make-up, Shake Away milkshake vouchers, Disney trivia game, chocolate and lots of little bits. Then once we had done our stockings, we had to get three Disney trivia questions correct each before we could go downstairs.

Before opening our presents, I did my puffer and we all had some breakfast. By this point it was about 10:30am haha! Usually we are all done opening by then! I got lots of cool presents; hair dryer, katie price book, clothes, perfume, ted baker bag, ted baker bath set, Tinie Tempah Demonstration signed vinyl, sweets, Disney CD, Just Dance 2014, Pyjamas and lots more. Then we did our main presents and I got a gold Iphone 5S!! I was spoilt! Thanks Mum and Dad :D.

We then showered, tidied away all of our presents and had our roast turkey dinner which was lovely!! After this we played games all evening which ended up going on until about 12:30am!

On Boxing day we had the family and boyfriends round; Grandma, Grandad, Uncle Tim, Auntie Selina, Chloe, Adam, Max and Adam (Abbi's boyfriend). George was working until the evening so Ben didn't come round either. Before all the family arrived I did my presents with Max and he got me my birthstone Pandora ring and lots of other little bits which was lovely. Then when the family arrived it was lunch and then more games! Including Just Dance, Table football and then back to the board games! It was a great day but over so quickly!

On Friday, I booked it off work so spent the day with Max. We went shooping in Basingstoke Sales in the morning which was a bit of a disaster as we didn't really end up buying anything! Then we went back to his for the afternoon/evening and spent it with his family

I had a great Christmas and Happy New Year to you all!

Sunday, December 15, 2013

Less than 2 months!

I haven't even been off of Iv's 2 months and I'm back on them again! Brilliant :(! 

On Tuesday I had an appointment at Frimley at 11:40am. So mum came and picked me up from work and drove us there. I was already feeling rubbish and had been since the weekend as I have a cold, plus my cough hasn't been great again so I was expecting my lung function to be rubbish. But that was also because I have not been doing physio as much as I should be.

When we arrived Jackie did my obs and my lung function. Like I say I was expecting my lung function to be rubbish but was very shocked when my results read just 49%! That's the lowest it's ever been. Mum said the cold probably didn't help that but still I wasn't happy and knew I'd be told I needed Iv's.

When Dr.Higton came in and saw me she said straight away that she thinks Iv's would be the best option to get me well for Christmas. (Just in time though as the Iv's would finish on Christmas eve!). But I didn't want to be on more Iv's after less than two months. So she said we could try some orals for a few weeks and if they don't work I would then have to have Iv's anyway. But mum was saying how she was off work for the next 10 days so I may as well have the Iv's now as she will be at home to help me. So I decided to go with the Iv's although I was not best pleased about it. I told Dr.Higton I didn't want to be on lots of antibiotics though as I wanted to still be able to go to work and last time it tired me out being on more antibiotics! So I've got Ceft twice a day and Toby once a day which isn't to bad as they can be done at 6 in the evening so no late nights and 6 in the morning which means I can still go to work.

Once I had my first dose of each antibiotic, I rung work and told them I was on Iv's again and they said to not worry about coming back until tomorrow as it was already 3 o'clock, so me and mum went home.

On Wednesday, I woke up feeling rubbish because of this cold. So mum rang up work and said I wouldn't be in after all. But they were fine with it and have shortened my hours while I'm on Iv's.

So me and mum have been back on the physio to get my lung function up again and hopefully these Iv's shift this cold in time for Christmas day!

Friday, November 22, 2013

November :)

I'm getting worse and worse at updating my blog! I keep forgetting as it takes time and I can never find the time to sit down and do it!

I now have the time though as I'm off work ill today :(. I went to bed last night with a jacket on as I was freezing cold and couldn't warm up. Then woke up this morning feeling hot, went and washed my hair and came back to my room, I coughed once and then was sick! Brilliant :(! So now I'm back in bed with a stomach ache. 

Going back to when the blog was last updated takes us back to the end of October so I'll go from the Halloween party!! 

On Friday 1st November we decided to have a fancy dress Halloween party after Jenny jokingly asked mum if we could have a party a few weeks before. So mum invited her friends and I also had a few people over. However, it wasn't just your average fancy dress party, dad decided to go a little OTT with doing the house up! It took him ten hours! We couldn't see the original walls of the house as it was so decorated! 


It was a really good night and everyone enjoyed themselves. On Saturday it took dad just as long to clear up than it did to set up haha! 

On Sunday 3rd November me and my cousin Chloe went to watch the Radio One Teen Awards at Wembley Arena. It is for 13-17 year olds only so I decided I'd go to see what it was like as it was the last year I could go and because Tinie was performing so I couldn't miss it!! Of course Tinie was AMAZING! He closed the show once we had seen the awards and watched Jessie J, Rizzle Kicks, James Arthur, Icona Pop and Fall Out Boy perform. They were really good but I didn't properly get into it until Tinie came on where I just went crazy like I always do when watching him live haha. Everyone must have thought I was mad! Although everyone was pretty hyper especially when a thank you video of One Direction came on the screens. You couldn't even hear what they were saying as the crowd were screaming so loud! 

When dad came to pick us up it was really busy along the roads so me and Chloe just walked until we found where he said he was! When we finally nearly found him, we walked around the back of Wembley and saw loads of teenagers waiting for the celebs to come out. But decided it would be better to find dad as we had been looking for him for ages now. When we got in the car we heard loads of people screaming and when we pulled forward a car with blacked out windows pulled up behind us. The window went down on the car and somebody screamed 'it's Tinie Tempah' but I was too much of a wimp to get out and see him in case he didn't recognise me. But he liked my video on Instagram of me singing to Miami to Ibiza so must have watched that! 

Then on Monday 4th November Tinie's new album 'Demonstration' came out. I preordered it off of his website and when I did this it said he would be signing 100 random copies so I might receive one and guess what... When I got home from work on Monday and opened the album it was a signed copy!!! I was so excited. I instagrammed a photo and tagged Tinie saying 'you must have told them to send me one' and he commented a wink face so he must have done!

On Thursday 7th November it was Sian's 19th Birthday so I did my usual and let off a balloon for her to receive up in heaven. I watched it disappear right into the clouds. Xxx

It was also Tinie's 25th Birthday so I instagrammed him a photo and he commented saying thanks. It's like we are friends haha! 

On Saturday 9th November me and Max went to Wade's house as his mum had organised a surprise party for him as his birthday was also Thursday. It was a good night and really good to see the boys and Wade's family. 

The follwing Friday (15th November) was Lisa's 18th Party in Newbury. I went with Max, Greg and Tom and we met the others there. It was good to see the college group and Lisa of course!

Then finally on the Saturday me, Mum and Dad went to the Ideal Homes Show at Earls Court. It was so busy! We got a few christmas presents for people and I got to meet Amy Childs as she was doing signings at her stall. 

Sorry if I bored you but I hadn't done an update in a while!


Saturday, October 26, 2013

A little bit of good news!

As you know the ivs finally finished on Tuesday!

Me and mum went up to the hospital for my appointment at 11:40am where Sam came and did my weight and lung function and finally... I'm at the weight I've been working towards for about 3 years! 50kg!!! It was back when I was at the Royal Brompton when I was about 14 that Dr.Rosenthal told me I had to get up to 50kg or I'd need a feeder. Well I've done okay without one this many years so I won't be needing one of those!

The lung function was 75% so only 1% more since last time. But it's good that it's staying up in the 70's!!

Dr Higton then came in and said she was really impressed and to keep the physio up and she'd see me in 4 weeks time.

Yay all good news!! 

Sunday, October 20, 2013

Home Sweet Home

Yay I'm home!! Well I have been for a week tomorrow but have only just got round to blogging so sorry for the late update!

Last Monday morning, I was woke up at 8am by Julie with my breakfast- a fry up! Although, after having fry ups every day for nearly a week I was not very excited to eat it.After my fry up I got up and did my medicine and DNase ready for when the physiotherapist comes round at about 11. I was expecting the doctors to be round at 9:30 so I played Mario Kart until then but there was no sign. My Tobramycin was due at 10am so I couldn't even go for a bath yet. Once that was finally finished at 10:30, I went for a bath and did my hair and put on a little bit of make up too make myself look less rough in the hope that I could go home. 

The physio (I forgot her name as there is so many) came about 11:15 and we did a session on my BiPAP machine with percussions and managed to clear my chest. 

The doctor then finally came around at 11:30 and had a chat with me. He told me he had spoke to Dr.Higton and ideally they would like me to stay until Wednesday as it was better medically, but it was up to me if I wanted to go home. I explained to him that I could do everything I was doing here at home and that the lung function had improved which is what they wanted to monitor over the weekend. He then said he didn't want it to go downhill again when I got home so I explained that no physiotherapists were even in at the weekend so I did the physio myself which obviously had an impact as my lung function was 74%! Of course with my explanations and knowing my own health he allowed me to go home.. wooooo!!

Judith came in at about 3 o'clock, once mum had arrived, and did an order for my home Ivs to be delivered  However, they wouldn't be delivered until Tuesday morning so I would miss my evening dose of meds. On Tuesday we waited in for the IV order to arrive which was due to come between 10-12. At 12:10 there were still no sign of Ivs so mum gave the company a call and they said they didn't realise the driver was running late so would get back to us. At 12:30 they called back and said they were trying to track the order so would call us again when they knew. (Bare in mind by now I have also missed the morning dose of meds). We didn't hear from them again, so at 1:30 mum called up feeling quite cross and explained the order was over an hour and half late and that now I have missed another dose. They explained the order had been lost and it would now not be with us until 5:30 as it comes from Cheshire. Mum was really cross that one, we had to wait in and delay our plans and two, that I had missed yet another dose!

So we went to town and did a bit of shopping and then came back in time for the delivery. Once it came we attached an Iv and mum changed around the times of the meds so I would be able to go to work.

On Wednesday, I went into work and saw Sarah who did a risk assessment to check it would be okay to come to work and that I wasn't putting myself or the children at risk. Luckily, it was all fine and I was back to work on Thursday. It was a lovely welcome back, the staff all cheered and I had babies cuddling me and shouting my name. I received a lovely get well card signed individually by each baby and staff member. 

I over did it a bit on Thursday though and got back into the routine too quick and managed to tire myself out! After work, I had a driving lesson and then a hair appointment and by the time all this was done I found myself in bed thinking what a busy day!

It feels good to be back on my toes and well again though. The Ivs finish on Tuesday and I've got a clinic appointment then to check I'm all okay. So will update you when I know! I've got to go back and do my apprenticeship work now.

Sunday, October 13, 2013

Good Lungs!

After a really boring physiotherapy filled week (well 6 days so far) my lung function has finally improved from 57% to 74% YAY! I am so happy! If this is just 6 days worth of physiotherapy and Ivs I'd like to know if my lung function is going to go up by any more for the next 8 days that I have left on Ivs. 

After writing my last post 'Ivs' back on Wednesday I later found out the Teicoplanin was carrying on for the next two weeks but for once a day instead which would be at 6am. This meant the Tobramycin couldn't be done at 6am as I can't have 3 antibiotics all at the same time one after another. All a bit confusing but basically I am on 3 different Ivs, 5 times a day. Ceftazidime and Teicoplanin at 6am, Tobramycin at 10am, Ceftazidime at 2pm then Ceftazidime again at 10pm. Then on top of all these Ivs, I have physio sessions at 11am and 3pm when Jo or another physiotherapist comes round and does some percussion while I breathe on my BiPAP machine. 

So when you think hospital is just a time to relax because you're ill, its not all that easy!

In between my 3pm and 10pm Iv and physio sessions I have been allowed home for a few hours each day which has got me through this week a little bit easier. 

Max came and saw me on Wednesday as he only had one lesson at college and he turned up about 1:30pm with a Mcdonalds for me (except I didn't eat it where I felt crap), then once the Ivs and physio were done we came home for a few hours. Dad then dropped me back in the evening. 

On Thursday Mum and Dad were both working and Max had a full day at college, so Abbi came and saw me for a few hours and we went out to Costa and Mcdonalds but I actually ate it this time! I only had a chicken mayo as dinner was waiting for me back at the hospital. Dad then arrived so Abbi left and he stayed with me until Eastenders had finished. 

Friday was the doctor's round and I was hoping to be told I could go home... but no, they said I had to stay until Monday as they want to check my Lung Function has improved. Which clearly it has! So Dad came and collected me after my 2pm Ivs. A different physiotherapist was on who only comes round once a day so I had to do my other session myself which I did in the evening. Max then came over in the afternoon, once he had finished college, and me and him went out to the Beach Arms Carvery which was lovely! Mmmm Roast Turkey, my favourite. After that we came home and chilled for a few hours before going back to hospital for my 10pm Ivs and for a Mario Kart Wii race!

Saturday Dad couldn't pick me up until 4pm after his golf lesson so I watched a movie until he arrived. When I got home I had a nice hot bath- well I say nice, anyone with CF who has a port that is accessed knows how difficult it is to bath without dropping your tube in or getting the dressing wet! Mum came home about 6:30pm and we ordered a Nandos Takeaway. All these fastfoods and takeaways makes me sound really unhealthy, but again anyone with CF will know how boring hospital food gets! I've had fry-ups every morning and I tell you, I'm bored of them!

Then there's today, Sunday, Dad picked me up at 2pm as Sweetie did the Ivs early so I could be at home for longer. The physiotherapists don't come at weekends so I did my BiPAP machine before dad arrived. So since being at home I have completed my Apprenticeship work as I have missed lots due to not being at the nursery this week and can't attend my training tomorrow and now I'm updating this for you people who are kind enough to read it! I've got to have more bloods done tonight, for the 3rd time this week, to test my Tobramycin levels to make sure everything is okay which mum will do before we head back to the hospital tonight. I'm driving us back tonight in my car as I haven't been out in a while!

I hope to be told by Dr.Ho I can finally come home tomorrow and finish the next week of Ivs here. So fingers crossed he says yes as my lung function has improved! I'll update you all tomorrow

Naomi :)

Wednesday, October 09, 2013


Last night wasn't too bad, I was started on Teicoplanin and I didn't react.. Woohoo! Dad came to visit me once he had finished work and brought me a Domino's pizza with potato wedges and cookies. Then he stayed and watched Eastenders with me. That's basically what my whole day consisted of, watching telly and laying in bed. BORING!

I woke up at about 4am having the worst coughing fit ever :(. At least it shows the antibiotics are already kicking in though! Then at 6am Sue came in and started me on some Ceftazidime and gave me another dose of Teicoplanin. 

I will be having Ceftazidime 3 times a day at 2pm, 10pm and 6am and have one more dose of Teicoplanin tonight at 8pm. Then tomorrow I will be started on Tobramycin which will be once a day at 6am before the Ceftazidime. 

I've been up showered and dressed since about 10am and now I'm so bored! Luckily, Max is coming to visit me later though.

This blog post is pretty boring but was just a quick update of what IV's I'm on.

Tuesday, October 08, 2013

Hospital Admission. Booo :(

Today I came up to the hospital for my regular check up. Me and mum left our house at 7:30am to be at my appointment for 8:30am. The traffic on the M3 was so bad we only just arrived in time at 25 past! 

When we arrived the HCA (health care assistant) did my obs and my lung function. Unfortunately, my lung function was still down in the 50's at just 57% which is rubbish for me. I looked back over my results from when I first joined Frimley when I was 16 and they have only actually been in the 70's after a boost of Iv's I had!

Dr.Higton came and saw me after and asked how I'd been keeping and I explained that my cough has been a lot worse than usual and that I haven't been doing my physio like I should! She then showed me a graph of my lung functions and said it would be best to have some Iv's but in hospital so I also get my required daily physio! She said I have to stay here a minimum of a week to make sure I'm better to go home to finish the Ivs. Rubbish!

So me and mum went home and got some stuff for my stay and then we came back and Max came with us so he knows the way for when he visits me tomorrow. 

Mum and Max dropped me off and then left at about 1:15pm as Max had to be back at college for his lessons. So I had lunch and then went for a nap. Then Judith came in to access my port and the physio then came in at 3pm and we did a session on my Positive Pressure machine. 

Since then I have been on the phone to George for a while and am now updating this.

I'm not sure what Iv's I'm going to be on yet, a doctor has just been in to see me and said he will find out. I do know Dr.Higton wants to try me on teicoplanin again though as they were not sure if I actually reacted to it last time back in March or if it was because I was so ill. But i'll keep my blog updated anyway so anyone who wants to know can have a read.


Monday, October 07, 2013

Max's 18th Birthday Weekend

Yesterday was Max's Birthday and he finally turned 18 so I spent the weekend with him.

On Saturday Jenny and Kelly came over at about 5pm and we ordered a Dominoes and got ready for Max's Party. Mum and Dad dropped us there for 8'clock and they stayed at Max's for a while to talk to his parents and because they wanted to see him open one of his presents that Dad had got him as it may have come in handy that night. It was a pair of blue sunglasses but the end of the arms on the glasses were bottle openers, everyone at the party loved them and were coming up to Max every time they needed a beer opening! Dad got them because he said Max drank a lot of alcohol in Turkey, so they'd come in handy for his holiday next year haha!

After mum and dad left I finally spoke to everyone who Max had invited and we partied to celebrate him turning 18 on Sunday. Well it was Sunday by the time the party had finished, so we sang Happy Birthday at 12am and Max opened the champagne.. I say opened, he did it 'F1 style' and shook the bottle everywhere! The last half an hour of the party was when everyone actually bothered to dance even though Max's dad had set up the lights and speakers which were blaring all night!

When the party was over, me, Max and his parents cleared up the bottles and plates until Jane told Max off for tidying up as it was his 18th! So Jane and Chris tidied in the morning instead. 

In the morning when Max finally bothered to wake up (lazy!), he opened all of his presents I had got him and loved them all! I got him Nike Janoski's, McLaren 50th anniversary Links of London bracelet and pin, some tops, Uno as we played it all the time in Turkey and some Calvin Klein's. We then got up and had a fry-up which was lovely and waited for Max's parents and Sam to get back from Sam's football so that Max could open his presents from them. His mum and dad got him a driving experience to drive a Ferrari and Lamborghini! Exciting!

After presents, a few of Max's family came over for a piece of cake and to see Max obviously. We weren't allowed Max's karting birthday cake as it looked to good to cut up but Jane made a lovely sponge cake covered in Maltesers and chocolate fingers so we had that. 

Once his family left, Jane dropped Max and Chris at the pub and then dropped me back home for a few hours before we went out for dinner in the evening. 

They then came and picked me up again about 7:30pm and we went for a meal at coal which was lovely. 

It was a really good weekend and I think Max is 
glad to finally be 18! 

Thursday, October 03, 2013

James' 18th!

On Saturday it was party time again at James' this time. He was 18 just after Lambo so he had a party a few weeks later.

Jenny came over to mine about 6 o'clock and I made us spaghetti bolognese as mum and dad were out at Auntie Mandy's. Once we were ready, Max then picked us up on his way home from work. 

When we got to James' his parents cooked us a barbecue but me and Jenny forgot their was going to be food so we didn't eat a lot. 

We then played beer pong, did shots and partied into the morning until we were tired as we all stayed at his. 

In the morning James' mum also made us some lovely bacon sarnies!

Thanks for a good night James, hope you enjoyed it :D! 

... And there's not even any photos of James haha!

Thursday, September 26, 2013

Panic over!

I went back to the hospital on Tuesday to get my port sorted out. Me and mum went up there in the morning as Judith said to come in early, but it took forever as there was so much traffic on the M3. 

When we got there Judith got the needle ready and cleaned the port area. She put the needle in and this time it looked like it should do when the port has been accessed. And it flushed all fine without any problems! Looks like the needle just didn't go in correctly last time!

 Panic over!! 

Sunday, September 22, 2013

Port blockage :(

Boohoo! Just been up to Frimley to have my regular port flush to stop it from blocking and guess what... It's blocked!!!

Hannah came in and did the normal procedure- wipe the area, put the needle in etc. But when she attached the syringe the saline would not go in! She kept trying but it would not budge and I ended up having a shower of saline all over me!  She went off to go and get Sweetie and I noticed the needle was placed differently so hoped when Sweetie had a go it would work. 

Sweetie came in and tried but again it wouldn't work. I thought maybe it moved after my skydive as I did say on the day that it had!

I've got to come back on Tuesday where Brenda is going to try but if it doesn't work then i'll have to have an x-ray and maybe a new port which means another operation!!! 

I'm off to see George in her new flat at uni now as it's my first Sunday off but what a downer to my Sunday the port blockage has been :(! 

Sunday, September 15, 2013

Toms 18th!

Last Night we went to Tom's house to celebrate as he turned 18 on Wednesday. It was such a great night seeing everyone as I don't see them every day any more as I'm not at college.

I don't really have much to blog about it, except some photos, but seeing as the blog is called Port, Pills and Parties it seems like I should have some posts about parties ;).

I hope you enjoyed it Tom! Enjoy the big 18!


I'm not sure whether I blogged a while back or not that Me, Max, Mum, Dad, Abbi, Adam (her boyfriend) and George were going on holiday to Turkey. But we've been now and had such a great time! 

We did lots of exciting things...

Sunshine boat trip around Altinkum where we stopped at 5 different beaches/small islands and had the chance to jump off of the top deck of the boat. I didn't jump though because when I did it last year, I couldn't hold my breath for that long! Bloody lungs!

Yesilkent Beach where we sunbathed and went on the double lilo in the sea. Max, George, Abbi and Adam also went on Jet-ski's too. I didn't because I took my antibiotics on an empty stomach and ended up being sick at the beach (eww). I sound so boring not joining in but I felt really ill that day.

Penguin beach where the 5 of us; Me, Max, George, Abbi and Adam went on the inflatable sofa that gets pulled along by the speedboat.It was so fun where it bounced through the big waves! Scary trying to keep a good grip on the handles though! Dad, Adam and George also went on the Ringos but regretted it after once they had been chucked off into the sea and kneed themselves in the face haha!!

Medusa Nightclub which was really busy! Not many English people were there but it was still a good night. Apart from the fact George got chatted up by Emre at Penguin beach before and then he found us in the nightclub haha!

Go-Karting, obviously we had to go for Max because it's his hobby and of course he won every time. It was really fun but I had a bad backache for a few days after! We went back here on our last day but I only karted once this time.

Aqua Park, this was really funny! Me, Max, Dad and George all held on to each others hoops and went down the slides together! We went speeding down until we got to the bottom and it was one big bundle into the water! We went on one slide with a big bowl inside and I ended up falling out of my hoop where I got tipped up!

I wont carry on going on as you can probably tell just from reading this, that we had an amazing holiday!! 

I'm back at work now, in the nursery, and am loving being there! I just can't wait for our next holiday!