Just thought I'd post a video of a method of physio that I do. This can be done on my own or with percussion from someone at the same time.
It's a BiPaP machine and compressor linked up together. I take 8 breaths at a time holding each for 2 seconds. While I breathe in, the BiPaP machine pushes extra air into my lungs to shift the mucus. I then do a 'huff' where I take a big breath in and force it out again causing me to cough up the mucus. In the chamber I have hypertonic sodium chloride which the compressor activates to stop the breath in being so dry making it easier to cough up the mucus.
I usually do 5 cycles on each side or until I've stopped coughing up the mucus.
So... Where to start. I haven't updated the blog in 2 months. I've been really busy with work, hospital and my birthday etc.
I expect this post is going to be long, so sorry in advance.
Work-
I'm not sure if I mentioned it in any previous posts, but the company I was doing my apprenticeship with were not very helpful. Not the nursery. The company that got me my interview and helped me to get the job. I was left to try to complete the work on my own and was struggling big time. Anyway my manager got in touch with the Bright Horizons company, as they now own our nursery, and I'm now doing my apprenticeship with them and it's going really well. I go to lessons in Fleet every Monday and my assessor then sets me the work and she comes and visits me at the nursery to. She's really good and I feel like I'm actually getting somewhere now. The only thing is, whenever I sit down at the computer, I find myself completing and submitting my work and never finding any time to update my blog. So sorry for the long wait!!
Hospital-
Since my last appointment I had another hospital appointment on the 23rd April. It was so long ago I can't really remember what happened. Woops! Nothing bad as I would have remembered. The lung function had improved a little bit after the Doxycycline and Prednisolone. That day was also Abbi's 21st Birthday so me, mum, dad, Abbi and Adam (her boyfriend) went out for a meal at Ask Italian. George was in Disneyland with Ben that week so didn't come with us.
On 22nd May I had my hospital annual review. You have these every year at the hospital just after your birthday where they do lots of tests and talk to you about the future.
First was the glucose tolerance test (testing for diabetes) where you drink an absolutely vile sugary drink and then Judith takes regular bloods to see how your body responds to the sugar. Dad thought it was hilarious watching me drink the drink as it was so disgusting and took me about half an hour! But anyone who has done the test will know the taste and know where I'm coming from. I will find out the results of this in 6 weeks time. Fingers crossed its all normal though otherwise I'll be pricking myself as well as my enzymes every time I eat!
I also saw Jo, the physiotherapist, and we discussed my lung function over the last year. 2013 it was pretty stable in the 50s/60s but since 2014 it's been up and down where I have been rubbish with doing my physio regularly. I know I need to do it and I keep telling myself I will. We also spoke about me joining the gym. Abbi goes to the gym so I might start going with her. I've thought about maybe swimming to. As part of the physio annual review you have to do a step test. This is a test that has 5 stages where you have to step up and down off a small step in time with the beat on the cd. Each stage the beat gets faster and you have to try to keep up. At the end of each stage, Jo checks my heart rate and I rate how I am feeling on an exertion scale. I made it to the end of stage 5! I reckon I could have done more but my left leg was really aching for some reason!!
I also saw the dietician- not Charissa this time and I actually remembered her name for once. But I can't remember the name of the dietician I did see. Woops!! She was really impressed with my weight gain in the past year which I'm proud to let everyone know I'm past my goal of reaching 50kgs!!!
Judith then did her usual chat about the future. I was on my own for this as mum couldn't make the review due to work and some of the stuff we spoke about was private so I didn't want dad in the room for this bit. She asked me about transplant and having children etc. I do think about these things. But I'm not sure on my decisions until the time comes for transplant! I don't like to think about transplant and becoming that ill, it scares me. So I try to just be positive and think about now instead.
I find out the results of the review in just over six weeks, on the 8th July, so hopefully everything is still fine.
My Birthday-
I'm finally 18... YAY! My birthday weekend was really nice. Max took me out for a surprise meal at an Italian restaurant on the Friday. (I'm so forgetful that I can't remember the name of the place, sorry max)! The meal was really nice. We both had our usuals.. I had spaghetti with meatballs and Max had Carbonara.
On Saturday I also had another surprise. Me, Mum, Dad, Abbi and George all went to a tea parlour in Basingstoke. It was a really lovely place and they had the best cupcakes!!!
Then Sunday was my actual birthday! In the morning I opened all my presents and cards with Max and the family. I got so spoilt. Max got me some amazing Barbie High Heels that I've been after for ages! Mum and Dad got me lots of things. My favourite thing was my Links of London bracelet :). George got me a Pandora bracelet and charm and Abbi got me some heels for my holiday to Gran Canaria with Max and some other various bits.
In the day me and Max went birthday shopping and I spent some of the money I had received. I got myself some all white leather Pumas that I've been after for a while!
Then in the late afternoon we all went for a Carvery which was really yummy! Roast dinner is my favourite so I couldn't wait for the turkey!
After the meal, Me, Dad, Max and George went bowling. Of course dad won both games but it was good fun anyway.
The following weekend was mine and Abbi's joint birthday party at the White Hart Pub. It was really good to see everyone and I was really enjoying myself.
Unfortunately, about half way through the night a person who was in the public side of the pub said some nasty things to me and about me to my friends. Things I couldn't imagine someone could even think of saying about me because of my Cystic Fibrosis. I'm not going to post what he said but he basically ruined my night. It's funny how nasty and small minded people can be for no reason. Especially when they have no idea what the illness even is or how it affects me. I don't even know why I'm mentioning him probably because I kept thinking about it after.
Anyway despite that the party was good and I'm finally going out to town this weekend!
Lungs have been crap again this week! I woke up this morning coughing up blood. This is never a good sign! Mum has got me some transamic acid to hopefully stop it, this usually works!
My tummy has been feeling really bloated as well lately, I don't know if it's something to do with the amount of enzymes I'm taking. I'm going to have to ask Charissa at my next appointment.
This evening I've been watching a Cystic Fibrosis Documentary called '65 Red Roses' it kind of scared me a bit about the future. Like I said I like to think positively about now but watching that just got me thinking! Unfortunately, Eva passed away in 2010, 3 years after her transplant, but the film was really good as it explains the worst part of CF. But I wouldn't watch it on my own if I was to see it again. I'm sure mum will be crying when she sees it.
Here's the trailer.
Sorry to end on a downer, I'm never usually like that but I hope reading this makes people a little more aware about CF.
Live life to the full despite anything weighing you down!
After 3 long weeks of IV's, I went back to the hospital on Tuesday. Mum took me for my appointment at 11:20am. When we arrived it was the usual process which I'm sure you are aware of by now from reading all my hospital appointment posts. Rhada came and did my obs and lung function. The lung function was a big shocker at just 56%! So instead of increasing after an extra two week of IV's since the last appointment, it had dropped even more. Me and mum were both slightly confused how 3 weeks of IV's and daily physio can make the lung function drop but clearly something hadn't worked!! Dr. Ho came and saw me afterwards who was also concerned why there was no increase in the lung function. I explained that I was feeling better in my self but my chest still felt quite tight. He said he could tell just from me talking that my chest was tight by how I sounded. So he gave my chest a listen and couldn't hear any crackles. He explained that my body may just not react with IV's straight away until they are stopped as at Christmas my lung function took two weeks to improve after coming off of IV's anyway. He also said it's obviously not the infection causing the lung function to be rubbish because the IV's would have shifted that a bit and made an improvement if my body wasn't coping with the infection sitting in my lungs. So now the IV's have stopped and Dr.Ho has prescribed me with some Doxycycline for 1 month, Prednisolone for 2 weeks and a Seretide inhaler to try to stop my chest feeling tight and improve the lung function. My next appointment is the 23rd April so I'm hoping these tablets make an improvement this time as it feels like the IV's have been a complete waste of time!! So far though, the Doxycycline has made me feel really drained and achy every time I take it so I'm not sure whether it's a side affect or not. The Seretide also sends my heart rate flying and I can feel my heart beating really fast against my chest so that doesn't seem to good either. But we will see how I get on over the next few days. Have a good weekend :)
As you all well know I am Tinie Tempah's biggest fan and was lucky enough to meet him last year and if you didn't know, now you do! Every piece of Tinie merchandise I own is signed either because I met him and he did me a personal message or because I ordered something and he was kind enough to send me a signed copy. I say every piece, I got a programme and t-shirt at the concert and they aren't. Another meeting so you can sign them maybe Tinie ;)? haha. Back in September, I got some presale tickets to see Tinie at his Demonstration Tour on 18th December but unfortunately, he postponed the tour until the end of March because he felt the tour wouldn't be as good as he would have liked with the new album only released in November. I didn't mind waiting until them as I had the chance to see him in November at the Radio One Teen Awards anyway. Well after waiting a few months I finally got to see him again on Sunday at the O2 in London with Dad and Max!!
We left our house at 3pm and Dad drove us there so we would arrive in time to get something to eat and lineup before the doors opened at 6:30pm. We arrived around 5pm and I went and got a t-shirt to add to my Tinie collection! I had to wear it under my t-shirt that I was wearing because we were going in the standing area so I would have no where to put it down. After this we went to Garfunkel's and got something to eat. Me and Dad both had an all day breakfast and Max had a Carbonara. When we left the restaurant, two of the waitresses got really excited when they saw the back of my t-shirt because I had printed the photo of me and Tinie on it. It was funny because everyone kept looking at the back and saying 'oh my god it's her and Tinie Tempah' or other people even said 'look that's that girl off of Tinie's instagram'. I felt famous haha. After dinner we had to go to Entrance F to line up which was really busy already where everyone wanted to be close to the stage. We arrived just at the right time though as it started to get so packed afterwards!! We had to wait about 45 minutes in the line until the doors finally opened at 7pm. I guess they opened the standing area doors a bit later because of how quickly it was going to fill up. We did see Peter Beale in the line though #HIGHLIGHT. When we finally got in, we were given wristbands to say that we were standing and went and stood with the crowd. Tinie had a few support acts on first which were good but it felt like we had to wait ages! Krept and Konan were on first, then WizKid and finally DJ Fresh. Everybody started to get into the concert mode once DJ Fresh came on. Tinie came on at around 9pm and opened with Lover Not A Fighter which was an amazing opening!! Everybody had their phones out filming him and Charlesy (his DJ). It was just crazy from then on, so amazing to be seeing Tinie in concert again. It was very different to my usual concert experiences though as I usually buy seats instead of the standing area. Although I had to keep jumping to see Tinie where I'm short, the atmosphere was crazy. He had so many surprise support acts come on too which was really good! Labrinth came on for 'It's OK', Laura Mvula for 'Heroes, Sway Clarke II for 'Tears Run Dry', Dan London for 'German Whip' and then 100K was just insaneeeee!! 100K is a song off of his EP 'Happy Birthday' and when he introduced the song he said it was for true Tinie fans and of course I knew the song! When I met him we told him it was Mum's favourite song so I had to get it on video for her. Everyone that features on the song with him came out on stage to sing it with him which was why it was so insane! G-Frsh, Tinchy Stryder and Krept & Konan and it was the first time ever that they had all performed it together live. Children Of The Sun was another amazing moment, Tinie got everyone to light their torches up on their phones at the end of the song and it was just crazy! The whole arena was lit up and it looked so cool.
Charlesy's video
As you can tell I loved the concert and could go on about it for ever on here! But I'll leave it there and add some photos and videos to the post to show you how good it was. Now I just can't wait to see him again at Wireless Festival on 4th July I'm sure he'll be amazing as always!
I went back to the hospital on Tuesday following up my last week of IV's on Teicoplanin. I had an early appointment at 9am as the clinic was closed but they allowed me to come anyway as that was what Dr. Higton had requested. Unfortunately, she wasn't there though as she had gone on maternity leave the previous morning and she has now had her baby. Congratulations to Dr. Higton on the birth of your little baby boy William!!
When we arrived Jackie came and did my obs and lung function. The lung function had increased back up to 61% which I think is good for a week of IV's! However, I didn't feel much difference after the week as I was still up in the night coughing some nights and I had coughing fits in the morning too.
Jo came in and saw me and was pleased that the lung function has improved and said to keep that and the DNASE up once a day until I'm feeling better. She said once I'm not feeling so bad to not worry about the DNASE every day and try every other day instead.
After that, I waited to see Dr.Ho but he didn't arrive before mum had to leave for an audit at 10am. So I was on my own for the rest of the appointment.
Once mum had left Dr.Ho arrived at about 10:15am and said that he wanted me on the Teicoplanin for another 2 weeks and Tobramycin and Ceftazidime. Which is rubbish news! He didn't even let me negotiate so I wasn't in the best of moods. He also said he wanted bloods done, knowing I only let mum take them, but she wasn't there. So I had to let Judith attempt to take them.
More IV's and some bloods meant I had to stay at the hospital for test doses and my arm to numb to have the bloods. This also meant I had to have my port needle changed otherwise it would be in for a total of 3 weeks. So Judith attached the Ceftazidime IV, put some Emla cream on my right arm (that's the arm where mum always gets the blood first time) and left me for half an hour as that is how long the IV takes to go through. I was so bored so resulted to watching Jeremy Kyle which I can't stand but there was nothing else on! Once the Ceftazidime was done Judith then swapped them over and attached the Tobramycin. Luckily I didn't have to have a test dose of Teicoplanin IV where I'd been on it for a week already, but I did have to attach it before I left the hospital. Once another half an hour had passed and the Tobramycin was done, Judith flushed that off and removed the port needle and applied more Emla to the port so that it would be numb for the new needle to go back in. She then did my bloods, she failed the first two times but where my arm was really numb and it was a small needle it didn't hurt too much although it is bruised now. Then once all the bloods were done I went to the car to get my Teicoplanin to attach once the new needle was in and got my sausage and mash ready meal for Jackie to heat up for me as I had to go straight to work after! After I had my lunch Judith put the new needle in which all went fine, then I was off to work after a very long morning!!
I drove back to work on my own which was scary as it was my first long drive on my own and I had to try to remember the way! I went the A30 though as I haven't been on the motorway just yet. Luckily, I got to work in the end around 1pm.
Since Tuesday, the IV's have been draining me right out. When the afternoon ones are done I'm half asleep and no energy where I've had so much pumped into me! Not good.
Work have been really helpful and decreased my hours again though so we shall see how I get on these next two weeks.
I've got to go back to hospital on 1st April after the two week course of IV's have finished. It seems like so long away where I'm on so many meds but hopefully we see a good result.
Now you know what I mean when I said in the previous blog post I couldn't be admitted to hospital because I had an important date. I had my driving test and I passed! I didn't pass first time but I got there in the end so I'm overly happy that I can drive my car on my own. My test was at 10:44am so when I found out that good news I was able to go home and get ready for work and then drive myself there! I also then drove to Max's in the evening. On the way back home from Max's I stopped off to get some petrol and had a palava with the petrol cap! I couldn't seem to get the petrol cap back in and ended up asking two people for help after being there for atleast 15 minutes. The second person that helped was driving a Fiat 500 themselves so they showed me exactly how it fits back in and when to twist the key so I tried today and managed to do it first time thank god. I then drove to work on Thursday morning which was very scary and I did panic a lot but I got to work okay in the end! I've just got to get use to driving on my own and knowing the roads now but the more practise, the more confident I will be. I am so happy though! No more L Plates for me!
Each blog post goes from good news to bad news with my health by the looks of things! So as the last one was a bit of good news, it's back to the bad news again! Since my last appointment back in January, I seem to have gone down hill again. The cough hasn't been great since then; I've been waking up in the night having coughing fits, wake up in the morning and have the most horrible coughing fits and coughing up loads of gunk and my chest has been tight. I've also just been feeling rubbish in myself with no energy and constant tiredness. Since December my shifts at work have become a bit longer to try and get me back up to my contracted hours, but I seem to find my long days quite difficult and too much sometimes. On 26th February, I got sent home from work as my chest was really tight and I had no energy what so ever. I ended up going home and having a 3 hour nap! That's longer than a granny nap!! I then went back to work the next day and had no energy again but 10am (I only started at 9am)! So it was back home and to bed for me again. Mum thought it could be a sign of diabetes as I have been drinking so much at lunch times (one 500ml bottle and two capri-suns!) so she rung the unit to try and get me an earlier appointment. There was no answer so she left it until the Friday and I was feeling fine again so she said we'd leave it as my appointment was soon anyway. Anyone with CF knows you randomly feel okay one day then rubbish the next! I wasn't feeling my best the week after but my appointment was soon anyway, so I kept drinking energy drinks whenever I felt low. My appointment was on Tuesday at 11:40am. I got ready in the morning and put emla cream on my port as I was expecting IV's anyway and if not the port needed a flush. Mum then drove us there. When we arrived Rhada did my obs and lung function. The lung function had dropped back down to 51% which was 10% less than last time. But I could tell from the coughing, weezing and tight chest that it wasn't going to be great. Luckily, the weight was stable though. I saw Jo first and explained to her that the cough has been really bad lately, I also admitted that me and mum hadn't been doing my physio daily either. She explained that I needed to do it (which I know but anyone knows it's boring) and do my DNASE as I hadn't done that in ages. She also mentioned if I had been doing the back stretches for my back pains and I admitted that I actually hadn't had the pains in ages but I think it was because I haven't been sat on the floor at work much lately, because I've been sat on my rug tonight doing my party invites and my back is really hurting! Brenda then came in to flush the port but I told her not to worry yet incase I needed IV's. After this, the dietician came in and spoke to me. I'm so bad I still cannot remember her name... next blog post, I'll know it! She was pleased that my weight had stayed the same but I told her about not having energy and that I feel a little better when eating or having an energy drink. She told me about these new liquid supplements that she had got hold of so gave me some of those to try instead of an energy drink or food as they'll help me to gain weight quicker. They are called PROSource and there's 100 calories in the little 30ml packet! Mum said it's basically like pouring calories down your throat haha! I'll admit I haven't yet tried them as I hate every single other supplement that I have tried and I've tried them all! Dr.Higton then came in and I explained to her that I had been feeling rubbish. Straight away she said IV's but I told her I couldn't be admitted as I had an important date the next day which you will read in my next blog post! She wanted me to be on Teicoplanin so she went to look if Calea homecare did ready mixes of them, which they do so that was good. So I'm on Teicoplanin IV once a day for a week, then I've got to go back to hospital next Tuesday to see if there's any improvement and if there's not I will then be on Ceftazidime and Tobramycin for 2 weeks. Rubbish! So far I'm not feeling any difference being on the Teicoplanin but it has only been 4 days. If anything it makes me feel stressed and fed up. I always see to get like this when I'm on IV's though. We'll see how the next few days go though and I'll update you next Tuesday.
