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!