CT Scan and appointment

On Monday I had my CT scan and hospital appointment. The CT scan was scheduled anyway because I have been coughing up blood recently, so Dr.Ho wanted a scan to see if part of my lungs were damaged/ Then mum booked me the appointment because I've been feeling poorly and my cough is really bad.

Abbi took me to the appointment, as mum is on holiday, and we arrived just after 1:15pm as we had to take a detour as there was so much traffic on the M3. I had the CT scan first which was at 1:30pm. We met Karen Plews (mum's friend). Although, the radiographer wouldn't let Abbi or Karen in. I asked if Abbi could come just why I had the cannula put in as I had a horrible experience with them when I was younger. The radiographer managed to fit the cannula and the CT scan was over pretty quickly. Then I had to wait 15 minutes with the cannula in which I didn't enjoy. 

After that we had to go to the CF unit for my appointment at 2pm. Yam came and did my obs and then I did my lung function which was better than last time which is surprising considering I've been feeling crap! After that, Jo came and saw me and was really impressed as I have been doing physio and going swimming! She explained why the DNASE made me cough so much at the weekend and also explained the difference between how DNASE and Saline help me to cough up the sputum. Charissa also came and saw me although she didn't say much as she had no nagging to do where my weight is stable haha!

Dr Orchard (however you spell it), then came and see me. He said he had looked at the CT scan and there is A LOT of sputum in there. I explained I didn't want iv's yet due to mum being away. So instead, I've got until Wednesday to try really hard with the DNASE and physio and then go back to hospital on Wednesday and if I'm no better then I will have ivs.

Today I have been feeling really really crap and I can't wait for mum to come home tonight. The cough has been bad and I have been struggling to breathe. I think I will definitely be having a course of iv's on Wednesday :(.

Poorly lungs

Just before I went on holiday I had an episode of coughing up blood so took some transamic acid and thankfully it stopped. But on the 2nd August it happened again and my cough was really bad so mum rang the hospital and got me an appointment for the Tuesday (5th August). 

I saw Doctor Ho and he prescribed me with some Augmentin for 3 weeks and requested a CT scan to see where the damaged bit of lung is. He said if the Augmentin doesn't help then there is something else they can do, which sort of scared me and I hope it doesn't have to happen. Basically they lazer off the damaged bit of lung which will stop it working and potentially decrease my lung function. 

Since the appointment I had 2 weeks holiday off of work so went to Grans house in Cornwall for a few days and then spent the following week with Max. But I started feeling not myself again and this week I have felt terrible :(. My cough is really bad, probably the worst it's been. So Mum rung the hospital on Friday and has got me an appointment for Monday. My CT scan is on Monday to so I will find out what will happen then. I'm likely to be kept in for Iv's but mum is away on holiday as of today so I'm hoping that they will let me wait until she is home next Saturday. But if I need them then I'll have to go in for a few days. 

Gran Canaria 2014

I'm late with updating (as usual), but I'm hoping to get my blog all up to date this week!

So... HOLIDAY!

On 10th July, me and Max went on holiday to Gran Canaria! We booked the holiday back in March and were really looking forward to it. Our flight was at 13:50pm so Max's dad dropped us at Gatwick Airport with plenty of time to spare. So we checked in, had a look around the duty free shops and then got a Mcdonalds before heading to our check-in gate.

We arrived into Gran Canaria just after 6pm (times are the same) and then had to get our cases and find our coach transfer to our hotel. 









Once we had arrived to the hotel we were given our room keys and unpacked our cases before going and getting some dinner in the restaurant. By this time it was about 9'oclock.

Our first day, we had a talk with Thomas cook about getting to know the area and what was on offer for us while we were there, looked around the hotel so we knew where to go etc and chilled around the quieter pool for the day. This pool was nice and relaxing as no children were allowed at this pool and all the entertainment happened at the other pool. In the evening, we had dinner in the hotel, as we were all inclusive, then stayed and watched the evening entertainment. Which unfortunately, we were disappointed with as it wasn't a very good show and the bar closed at 11pm! So that night we had an early night. 

On the Saturday, we chilled by the pool again and then in the evening, after dinner, we went out to the Yumbo town to look around. While we were there, we found a 17 hole mini golf course so had a game of that which we really enjoyed. I even got a hole in one on my first go after Max told me I was holding the golf club wrong... I don't think I was now, was I? haha. (We didn't take phones out with us, so didn't get any photos of the mini golf, woops!)




On Sunday, we got up early and had breakfast then got the bus to the beach! We got really burnt the by the pool the day before so ended up staying under the umbrella for most of the day! I even had a snooze! 

We then had some lunch and ice creams before jumping on the bus back to the hotel. 










Back at the hotel, we stayed by the pool until late so went for dinner a bit later. Then we stayed in by the bar and watched the evening entertainment. 

Monday was my favourite day! Aqaupark! We booked our tickets for Aqaupark with our Thomas Cook Rep after the talk on Friday. So on Monday we got up early and jumped in a taxi to Aquapark. It was such a brilliant day! We went on most the slides then had a bite to eat and a drink. Our drink cups were like buckets!

After lunch, we went on a few more slides (until I injured my leg where Max pushed us off so fast at the beginning!), I got a hair braid done and then... We swam with sea lions! It was such a great experience! The sea lion gave us both a kiss and cuddle, then we went into the water with her and threw a ball and a hoop which she brought back on her nose and got to swim while holding onto her back. 

 (excuse the bad quality of the pictures! It's a picture taken off the actual picture.)

After the busy day at the waterpark, we stayed in for the entertainment again as we were too tired to go out. 

On the Tuesday, we had a quiet morning by the pool and then in the afternoon we went Go Karting! Max does karting at home so was determined to try and beat the record there. He came fifth but the people at the track told us it was them who had set the other records and they do it every day so Max did really well. I however hated it haha! 

On the Tuesday evening, we had some dinner and then stayed to watch the parrot show! It was really fascinating to watch the parrots do all the different tricks! After the show, we went out to Yumbo to get some presents for our families.








Wednesday, our last full day, we chilled by the entertainment pool which Max really enjoyed after not wanting to go there all week! He played water polo and loved it. I didn't so much as our sunbeds were right behind one of the goals!

In the evening, on our last night. We went back to Yumbo to have a re-match at mini golf! We took phones this time to so actually got some photos!

Thursday was home time so we just chilled by the pool until it was time to get ready for our pickup transfer. We had a brilliant holiday and can't wait to go abroad next year!

Tobi podhaler

There are 4 capsules per dose and you do 2 doses per day. You put the tablets into the podhaler, one at a time, and press the blue button at the top of the podhaler which pierces a small hole into the capsule so that the powder is released when you breathe in. You do 3 breaths per capsule and hold each breath for 3 seconds. A podhaler lasts for 7 days after opening. After this, you throw the podhaler away and open a new box which includes 14 doses of capsules (56 capsules) and a new inhaler. The company deliver enough boxes for 28 days so after this I go back to using my Ineb for one month until it is time for my month back on the Tobi podhaler. 

Annual Review Follow Up 2014

I have been busy with going on holiday, work, coursework etc that I have only just got round to blogging again! I never find the time to update the blog and then when I have spare time I never remember!

Anyway, I had my annual review follow up on the 8^th July which all went well. I have put on 5kg’s since my annual review this time last year which is brilliant news as I’ve struggled to get to 50kgs for years and years! My lung function is pretty stable in comparison to last year, weirdly my fev1 was exactly the same. My physiotherapy still needs improvements (meaning that I need to do it), however, I joined the gym on Monday so actually went ahead with what I discussed with Jo at the review. Go me!

I met Chris, the new doctor, and he discussed the follow up with me. He said that the bloods showed my Itraconazole levels were low and I have now upped this to two tablets twice a day to try to fight off any infections I have currently got that are stopping the lung function from increasing. I would note what the infections were but you would only be sat there thinking ‘WHAT?’ if you didn’t have CF. We also spoke about inhaled antibiotics to replace the nebulisers to try to find some more time to fit in physio and I have now started an inhaler called Tobi podhaler instead of the Bramitob nebuliser. I am getting on with it quite well and it’s so much easier and quicker to use. However, Jo warned me some people have said they get a ‘horsey’ voice with it and guess what... I happen to be one of those people. I am still on Promixin on my alternate month, but Chris wants to try me on Colobreathe at my next appointment which is the inhaled replacement of Colomycin instead of Promixin. I will upload a video clip of me doing the Tobi podhaler so any CFers who haven’t seen this before can have a look.

There was nothing major at the review and I got to go on my holiday!

Woohoo. 

#CFyelfie

Today was #CFyelfie day, where you take a photo of yourself (selfie) wearing something yellow and post it to Facebook and Twitter with the caption '#CFyelfie' to raise awareness and join in with the Cystic Fibrosis Trust No Party party events month.

It is called a No Party party because...

"The Trust has achieved a lot since 1964, but until everyone with cystic fibrosis can expect to celebrate their 50th birthday, and look forward with confidence to many more to come, it is no time to party. Instead the Trust is working harder than ever to reach the day when everyone with cystic fibrosis can receive the treatments that transform their daily life."

cysticfibrosis.org.uk/news/latest-news/no-party-campaign#sthash.WyAwdKkw.dpuf

If you haven't done yet, text CFYL14 and your amount £3/£5/£10 to 70070 to make a donation and upload your CFyelfie to Facebook and Twitter using the hashtag! 

Me and Maddy have done our bit, now it's time to do yours!

Physio method: BiPaP and Compressor.

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.