Lung Function Drop and Weight Loss

After being off of work most of last week as I was feeling rubbish, mum rung Judith last Friday and got me an appointment to be seen on Monday.

So on Monday, me and Mum went to the hospital for my appointment at 10:30am. Unfortunately, it wasn't the best news.. my lung function has dropped a massive 20%, not to the lowest its been, but it's never just dropped that much in one go. Also, my weight has dropped half a stone since I was last seen in September. This confused me and mum as I have been eating the same, except the last week due to being poorly, so don't understand how it could have dropped that much.

Emy came in first and gave my port it's regular flush to stop the line blocking. And then I told her that I hadn't been feeling my best and also explained I had been having random shakes at random times of the day over the past few weeks. I told her that I had been checking my blood sugars regularly and they had all been pretty normal so I was a little confused. Around this age, CF patients usually are diagnosed with CFRD (Cystic Fibrosis Related Diabetes) so I think maybe mine could be on the way. Emy said that could explain the big weight drop and the shaking although if the blood sugars showed normal results she didn't really have an answer. She went to see the diabetic doctor who told me to just carry on taking my blood sugars for the next two weeks and see if there is any change.

Jo came in and saw me and suggested I up the physiotherapy treatment to twice a day to get the lung function back up and to stop me waking up every night having coughing fits. She said to carry the DNASE on as normal, so do that about 45 minutes before physio. Then for the second lot of physio, inhale half of the hypertonic saline through my pari-boy machine and then put the other half into the chamber that I use for my Bipap (physio) machine rather than just putting the whole dose into the Bipap machine as it will get to my chest quicker and hopefully bring up more sputum.

Charissa, the dietician, came in after and was also concerned as to why my weight had dropped so much. She told me to keep a log of my blood sugars and what I am eating and try to eat more than usual over the next two weeks. She was upset as she knows how hard I have worked with my eating to get my weight up to where it was.

Dr Orchard came in last and also had no answer for the shaking if the blood sugars are normal. He said "you like to be a challenge don't you?" haha. He suggested going on some iv's to try and get the lung function back up and to shift this horrible cold I have. But I didn't want to jump straight into iv's as I had them less them two months ago. So I asked for some oral antibitocs to try first. Mum asked him what he thought about Prednisolone (Steroids) as I suggested them as they usually make me eat a lot as well as shift infection. So he prescribed me with those for one week and also prescribed me with an antibiotic called Chloramphenicol which I am on for two weeks. Hopefully, with these steroids, antibiotics and lots of physio my lung function will improve. Failing that, I will have to go back on iv's. I have an appointment to go back to the hospital on 28th November, so I am going to try and work hard with my physio until then. Fingers crossed!

Still feeling rubbish

I went back to work yesterday thinking that I would be feeling okay. But I felt really poorly again. I have got a cold and it has gone straight to my chest and made my whole body feel rubbish. So I'm off again today to get some rest.  

It's hard to describe how you're feeling when someone asks why you're not feeling great. Unless you have Cystic Fibrosis I guess you don't understand what I mean. But one day you're feeling absolutely fine and then one morning/evening or anytime in the day you'll just start to feel rubbish again. I hope this cold shifts itself pretty soon so I can feel fine again and get back to work. 

November update.

Its been nearly 2 months since I last updated!! Probably because I've not been to the hospital since my last update. I haven't been feeling too great the last week. I have been up every night with chest pain and terrible coughing fits which has left me feeling over tired most days despite going to bed earlier than usual. Sunday and yesterday I wasn't feeling 100% and went to bed last night with a horrible headache. I woke up this morning coughing up loads of rubbish again, my head still killing and had a fever. So I haven't been to work today and have spent the day in bed. Hopefully going to bed early tonight will help and I will be able to go to work tomorrow.

I have also had really random shakes at random times over the last month. I have been checking my blood sugars and they have all been normal so it's a bit confusing. Every time mum says she will ring the hospital tomorrow, the shakes stop! This week so far it hasn't happened, touch wood, so we will have to see.

I have a hospital appointment on 25th November but if I'm still not feeling great mum will ring and change it.

Hospital Discharge and IV Follow Up

Since my last post where I said I was hoping to be sent home on the Friday, I ended up staying until the Monday as I had a temperature all day on the Thursday. On the Sunday, 14th September, Rhada took me to do my lung function and it had improved right up to 70% YAY! So I expected to be going home on Monday with a result as good as that. 

On Monday, after I had my breakfast, meds and physio I went home to go and get my hair dyed... Brown! I have brown hair. It was a big shock at first as I've always been blonde but it has grown on me now and I like it. While I was at home, Judith phoned and said Dr Orchard was happy for me to go home and didn't need to see me but I had to go back to collect my things and have my last lot of IV's for the day as the home delivery wouldn't arrive until Tuesday.

Since then, I have done well with physio, mum and dad have really helped out with the ivs and my lung function is at 74%! That's probably the best it's been in about 3 years. I am so happy. Jo and Dr Orchard were both really impressed as well and have said I don't need to be seen for 2 months providing I stay well. So I am keeping up with the physio and can get back into my swimming now the port is no longer accessed.

Hospital Admission... BORING!

As you will know from the previous blog post, I had one week to try really hard with Physio and DNASE until mum was home and I had to go back to hospital. So yesterday, I came back to the hospital and despite doing really well with my physio my lung function had dropped :(! My cough has been bad again and I was up on Monday night for about 3 hours so had to call into work sick on Tuesday. 

So I have been admitted to hospital for some Iv's. I am on the usual Tobramycin and then 2 more different ones which means I have no idea how to spell them but I will give them a try haha... Teicoplainin and Meropenem. The Teicoplanin is 3 times for the first 24 hours and then it is just once a day after that. The Tobramycin is just once a day. And then the Meropenem is twice a day. So after today it means I will only have two IV times a day. All a bit confusing to understand but if you have CF you know the drift haha.

I'm hoping to only be in here until Friday after telling Dr.Ho I didn't want to be in at all, so he said maybe I could go home after 48 hours. So we will see. I've just had my morning physio and coughed up loads of crap (yuck!) and now I'm waiting for my lunch. Hospital food.. yum! NOT.

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.

65 Red Roses

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!