Friday, 27 May 2016

2 weeks in..!

Two weeks today since I came into hosp. Starting to get bored now, which is a good sign I guess! I thought I would have been out by now but the progress is painfully slow this time. I was fine with cancelling the first 2 weeks of plans, but I don't want to cancel any more. I want to get back to my dog grooming and I have a lot of plans with all my family this weekend that I don't want to miss and my first ladies day at Epsom next Friday, which me and my friends have been waiting all year for, which I don't want to have to miss out on.

I saw Dr Orchard this morning to discuss the plan of attack and my results and all that. My lung function is creeping up slowly but surely; I'm up to 39% now and my CRP hasn't moved much at 41, but at least it hasn't gone back up. I changed meds about 4 or 5 days ago as the previous ones weren't having much of an effect. Chris is now happy with the combo and thinks that we just need to stick it out a bit longer but it should have a good impact. He also thinks a lot of the issue is inflammation, which takes a little while to settle.

Good news though is that they stopped my oxygen today woo! It's nice to be able to go to the toilet without feeling like a dog on a lead haha. I still need it at the moment for exercise but it's a great step in the right direction :D

I'm allowed out at the weekend in between my IVs to see my family, which is exciting. It's my parent's 25th wedding anniversary and while the adults are away being all adulty having posh meals in hotels and all that, me and my cousins get to hang out. Hopefully the weather will stay like today and we can go to the park with my Barney bear. Haven't seen him in 2 weeks, miss him so much. My cats too, and I'll be home in time to give them their flea treatment tehe they're going to be so glad I'm back for that- not! ;)

I have also been given the OK from Chris to attend ladies day as long as I feel up for it. I won't make a final decision until a day or two before the event, as I just don't know how I will be this time next week. The arrangement for the day was for all my friends to come to mine and Al's for a champagne breakfast and we've booked cabs to get up to the downs, so we may need to tweak the plans, but we will see. I called up the racecourse for advice as to whether it was suitable to bring my wheelchair if I'm needing it. The woman was very helpful and the event is accessible for chairs, which is a relief and puts less pressure on me to be 100% and able to stand for the whole day. At least, even if Im only feeling 50% I should still be able to go and can take my chair to be in when needed. Looks like I won't have time to go dress shopping though, so will need to route through the wardrobe for something to wear.

For physio, as well as the Bird and percussion, I am exercising more now that I've got more stable sats and it's not too much for my body anymore. I've been using the exercise bike and managed to convince the physios to take me for walks outside; I don't want to miss out on this sun! Trying to top up my tan as we walk round the car park haha.

The steroids are making me super hungry still, which is great but my god is my face getting chubs! I've got the usual moonface that comes with taking prednisolone. The food here is so good. I never thought I'd say that about hosp food. I prefer it to my own cooking haha. There is such a variety and it always tastes so nice. I'm very lucky to be here where they clearly have really good chefs. 

Until next time xo

Sunday, 22 May 2016

1 week, 2 days in

It's been 1 week, 2 days since I was admitted and things have been going steadily. The first few days I slept a lot and it was a relief to be able to rest. I didn't realise how much I needed it. I lost my voice during the week, which made it hard to communicate with the team and friends and family, but it's nearly back now. I've been so lucky to have visitors everyday; my aunties and uncles, cousins, god mother, friends, mum, dad, Tim, Abi, Tim's new girlfriend Emma and my nana and papa are on their way up now :) The generosity of people always overwhelms me, taking time out of their busy lives to travel all this way and sit chatting to me and keeping me company. I appreciate it so so much xxx

I've been having regular blood tests, lung function tests, weight done etc. Weight has been going up, lung function hasn't really moved much sadly and I'm just waiting to hear back on my bloods to see if the CRP- which measures the infection levels in your blood- is coming down. It was 121 when I first came in, which explains why I was feeling so rotten; then went down to 48, back up to 56 and hopefully is going to come down again.

One of the docs made me laugh on Friday- well actually it makes me laugh now but at the time I was a bit worried about him. He's slightly on the odd side, but very very nice. He came in to see how I was, the usual questions and all that, and I asked if he knew about my blood results. He said he hadn't checked them but will do so right now and be back in a minute. He wondered out of there room and I just sat and waited. 4 hours had passed before I asked a nurse if he's ok as he still hadn't returned! Even up until today I haven't heard back from him haha. Hopefully he will be back tomorrow so I can see where he went to lol!

I have physio twice a day and I'm doing the Bird with a flutter attachment and percussion. The Bird is a device that forces O2 into your lungs to open them up and then you blow against it to stop the flow and breathe out. With the flutter attachment it sort of vibrates your lungs as your blow out. The percussion is someone sort of hitting your lungs. This is all to try and get everything off my chest. The thing is, it doesn't seem to be doing much. I'm also doing my usual neb called DNase twice a day to help loosen things, but again it's not having a huge impact. So tomorrow I'm planning to speak with my physio to see if we can do something more effective. I personally find that exercise is most effective for me to clear my chest, so maybe I could start doing some. I did ask last week but they said they need to check my O2 levels to make sure I will be ok for it. I don't really know what it all means but I just want to get going on it, I want to get better and get home! I'm still on 2L oxygen all the time, so I need to be well enough to be weaned off that too.

Radha, one of the care assistants kindly french plaited my hair yesterday eve, so now it's all nice and out of the way.
My aunty Linda made this gorgeous flower arrangement for me

Snapchat has been like my best friend haha, putting the filters on my parents is so funny!! I don't know if you can upload vids to this...?

Ok, let's see if they work.... haha. 
I'm missing my home, Alex, family, Barney, my cats and my dog grooming so much! Can't wait to get home again <3 Until next time xo

Saturday, 14 May 2016

It was all going so well!

It was all going so well! I was on the IVs, getting chubs from the steroids, getting my energy back, my life back then boooooom I get a "cold". Last Sunday I just came down with it and felt so rough. Colds are never fun, but you just have to get through them. So I rested as much as I could.. in between dogs and food shopping, running errands etc but just kept getting worse. I knew I had my end of IVs appointment on the Friday so I didn't need to wait long until I could see a doc and check I was OK. By Wednesday I was cancelling dogs and trying to find someone to drive me to the hospital as I just didn't have the energy. Thursday was just as much of a struggle and Alex and I ended up sleeping downstairs so I didn't have to tackle the stairs whenever I needed the loo in the night.

Friday came and I was sooo ready to see Dr Orchard! I couldn't walk more than a few metres without stopping, couldn't get my breath at all, constantly hunched over and just not at all anywhere near myself. I can honestly say this is the worst I have ever felt in my life. All over a bloody cold!

I was so so soooooo lucky to have quite a few offers from such kind people to take me to the hospital. I am eternally grateful for them <3 My aunty Linda, who lives quite close to Frimley Park Hospital, collected me at about 7.30am and drove me there. We slowly slowly....slooooowly (haha) made our way into the hospital and they pretty much instantly offered me oxygen, which has never happened before so I must have looked a bit peaky to say the least lol. I said that I was ok and we checked my sats and everything and I wasn't doing too bad. I did my weight, which had gone up, and my lung function, which had obviously gone down. Right down to 35%, my lowest I've been. Emy came in to pre-warn me that it was likely I was staying in. Of course I was upset and she asked "what did you think we would say"? And I said that I thought they'd say that as it's a cold they can't do much for it and I'd just have to ride it out. Haha looking back that was quite naive of me!

Dr Orchard came in to see me and agreed I needed to stay in 100%. He thinks I have the flu not just a cold so we did some swabs to send off and he started me on flu meds. I had my bloods and port re-accessed and then as they needed to move a non-CF patient to another ward and prepare a room for me, Linda and I went back to hers for lunch and chill before they called me back.

It's always lovely to go to aunty Linda's, she has the most beautiful garden you will ever see and her house is so homely. I took up my favourite place on their marshmallow sofa and didn't move until the hosp called me a few hours later.

I went back and we settled into my room. Sweetie, one of the nurses decided to start me on some oxygen and omg did it make a difference! Within half an hour I could sit up more straightly, I could talk a few sentences without getting out of breath, I was more awake.... it was such a relief. It's the first time I've needed it other than being on an airplane and it's so helpful just to get a bit of rest from gasping for air the whole time.

Linda was an absolute angel yesterday, she was with me for a full 12 hours. Supporting me, driving me, feeding me, holding my hand, comforting me, laughing with me, entertaining me, educating me haha! She's a wonderful aunty and I'm so lucky to have such a loving, caring family <3

My mum, dad, brother and sister came up in the evening and we laughed all eve. I think my dad is the funniest person in the world and he always cracks me up! I have to tell him to stop otherwise I have such a coughing fit from laughing lol- the best physio there is though!

I have had to cancel all my plans obvs, which means I'm going to miss my cousin and another of my aunties in their theatre production today :( Absolutely gutted! Break a leg girls, you'll have to give me a rendition when I next see you. My brother's new girlfriend is taking my place though, and to be honest, I think they're more excited to meet her than if I were going up hahahaa ;)

My Alex is coming up in the next couple of hours to be with me today <3 <3 <3

And finally, but absolutely by no means least (sorry this is a lengthy post), ANOTHER of my amazing family members needs a mention! My uncle Mark has just signed up for the Great North Run (13 miles) and is so kindly raising money for the Cystic Fibrosis Trust. He got the confirmation through last night and has set up his JustGiving page :) If anyone would like to donate, Mark, myself, my family and everyone else with CF would be ever so grateful. Mark has put a target of £200, but I want to smash through that target and help raise as much as possible. The link is below if you'd like to donate. He runs it in September, so expect a few months of annoying posts about it haha:

Until next time, xo

Thursday, 5 May 2016

CF Awareness Month- it's not all doom and gloom!

May is Cystic Fibrosis Awareness month. So, I feel I simply must do an obligatory blog post! The usual awareness posts I see on social media are, more often than not, slightly negative ones. It's not all doom and gloom guys. Having CF- or any other illness, disease, life challenge, has it's perks; you just have to find them! Let's see if I can think of 10...

Number 1.
We get to eat as much chocolate, crisps, ice cream, milk, angel delight, chips, pizza, take aways.... as we want. The more the better.

Number 2.
We get to skip the airport queues and get one of those buggies all the way to the plane whilst everyone else walks for miles and miles.

Number 3.
Eventually, we will be entitled to a blue badge meaning wider parking spots (great for rubbish parkers like me) and sometimes free parking.

Number 4.
We could probably sit a medical exam and do pretty well, with the knowledge we pick up over our lives. We understand medical notes and terminology.

Number 5.
We make life long friends with other CF'ers. We understand each other like no one else can and can offer advice and reassurance.

Number 6.
We have a great excuse to sleep; anytime, anywhere, for however long!

Number 7.
We have a great party trick- taking 15+ tablets in one go.

Number 8.
A nurse from Brompton once said to me that CF'ers have the strongest relationships with their partners <3 (of course this is only her opinion, but I like it all the same!)

Number 9.
I can't speak for everyone, but I feel I have a great appreciation for life because of my CF. I feel I look at things slightly differently to other people my age.

Number 10.
We're just great! OK, I couldn't think of another one haha, but 9 is pretty good :D

So yes, CF may be a pain in the arse and we'd all LOVE a cure for this disease, but let's not dwell too much on that and take any positives we can. There's always someone much worse off than yourself. May is CF awareness month, so lets make people THINK about it, TALK about it, LEARN about it <3