One Christmas wish...

On Friday I went up to the hosp to have my final flush and the needle that accesses my port taken out. I did a lung function too and my results were 77% and 105%!! :D so happy- great early Christmas gift! Now I can enjoy Christmas, New Year and the move whilst being able to breathe :)

Also, soooooo excited that I am going to start my dog grooming course on Jan 7th 2013!!! Cannot wait! It's a 20 day course and I'll be finished on 18th Feb- just hope I pass! So I've got to try so so soooo hard to keep well until that end date. Physio and meds are going to be done even more thoroughly than I already do them and I'm going to try not to over do myself..!

Only 2 days until CHRISTMAAAASSS!!!!!! EEEEEEKKKKK!!!! And 10 days until we moooove! Such an excited few weeks coming up :D Still need to pack a lot of things and give the house a thorough clean and paint a few bits...

* * * * * * 

I love giving gifts at Christmas, probably more than receiving them to be honest. If I could give only one gift this Christmas, it would be to a young woman called Kerry who has CF and is in desperate need of lungs. And I don't mean desperate as in she'll be OK as long as she gets them within the next 6 months or something; I mean desperate as in she needs them within the next few days! :( I've been following her blog (you can too, just look at my blog list --->) and her body is so exhausted and frail from CF, it's so sad and scary to read. She needs these lungs more than anything and it would truly be a Christmas miracle if she received them. If you read her blog, you will understand how important it is to become an organ donor. You will save lives. Please, if you haven't already and you agree with it, sign up to organ donation. There's a link on my organ donation page. It literally takes about a minute to do. Thank you, have an amazing Christmas!!! Lots of love xxx

2 weeks of IVs later...

I've had nearly 2 weeks of IV antibiotics to treat my chest infection and I'm feeling great. I am coughing a lot less, eating a lot more, and have more energy. Love the feeling after being on IVs <3 feel so well! Been eating really fatty things too over the last few days- bacon sarnies drenched in oil, pints and pints of milk, loads of angel delights, and I'm sure over Christmas I will be stuffing my face too :D Hopefully my good health will last a bit longer this time.

The doc has suggested I re-try Tobi through my nebs again. I haven't had it in about a year because I felt the effects were wearing off; however, now that I haven't had it in a long time there is a good chance it will be able to keep my infection at bay again.

It's 6 days till Christmas and 2 weeks until me and Al move into our second home!! :D can't wait. I'm also trying to get onto a dog grooming course for the new year. I really really hope I get on it, it's my absolute dream to work with dogs. If I do get onto the course, next year is looking gooooood!

----    BREAKING NEWS    ----

I've just heard that Kalydeco (the amazing new drug that is saving lives of people with CF with the gene type G551D) has now been made available for anyone over the age of 6 with the right gene type. This is down to the brilliant campaigning that families and the CF Trust have done to convince the government to let us have it. And my friend George told me that they are currently trilling another drug for another gene type. I'm not sure which gene type I am (need to find this out!) but either way it's the best news ever! Finally, we may be able to breathe <3

xxxx

bad week for breathing

This last week my health has gone downhill. I have been feeling so tired and coughing non-stop. My appetite has completely vanished and I'm only eating like one choc bar and one small meal a day. So I e-mailed the hosp and was seen yesterday; I had my bloods done and an x-ray, as well as the usual tests. My weight had dropped to 47.09 kg, not too bad thankfully as I let the hosp know as soon as I noticed such a decline in my appetite. My lung function was 57% and 91%- couldn't believe the 91 part! my oxygen levels were only 91% too. However, the CRP levels (the infection level in your blood) was only 57. A bad CRP level generally is anything about 70+ ish. I was really shocked with the results as I've been feeling so poorly. Barbara the doc decided it was best for me to go on IVs anyway, as she could see how much I was struggling. It was such a relief when she said IVs because I thought that she might tell me just to have oral meds, and I know by the way I'm feeling, that orals wouldn't do much.

Anyway, so now I'm on Meropenum IVs again and resting lots and lotssss! Fingers crossed I'll be better for Christmas :)

Other than health stuff, we've started to have people view our flat for next year, and Alex decided on 2nd Dec that it would be a good idea to pack up the house- even though we're not moving for another month! So we're now living out of boxes :/ Cheers Al. xxx

Ups and downs of the week...

This week has had a lot of highs and lows. A high was seeing my friend Ashley and staying at her uni overnight. We always text and call each other and stuff, but hadn't actually seen her in months, so it was good to catch up :D

Then a low was that my health declined a lot this week. Coughing constantly and now need my wheelchair a lot if we're going out. Sadly my appetite is going too, but trying to force myself to eat as much as I can to keep my weight stable, at least. I have a docs appointment in 17 days so hopefully I can keep rested and as well as possible until then, then maybe get some oral meds from them for over xmas.

A high point was getting our new place! We'd seen a few that were so small and un-homely. Then we came to "the one"! It's being refurbished at the moment and when we were there, the builders were finishing putting up lovely wallpaper in the bedroom and were about to start putting up the brand new fitted wardrobe. The place is bigger than ours at the moment and there are cute little features, like the fireplace and the lights- we have a chandelier! :P Can't wait until we move in.

Then as always, when money's tight, Steve our car broke down. Thankfully it was right outside Al's mum's place, but it has added to the stresses of life at the moment :/ Should be getting it fixed today- fingers crossed.

The final high is that today we can start ADVENT CALENDERS!!!!!!!!!!!! :D eeeekkkk not long till christmas!!!

xxx

Catch Up- lots of piccys!

I haven't blogged in a while, mainly because I've been quite busy! Since coming off IV's I've been doing as much as I can while I'm well. Went to Discover Dogs again this year, fell in love with every dog and can't wait till I can get my own! Here's a few piccys of the day...

If I had pursued with my photography as a career, I would have like to photograph animals. Now I just like to do photography as a hobby. Here's some snaps...

Angel is much calmer now since her spaying, which is good. Also, I have finally uploaded some pics of Frankie, our snake. (I gave up asking Alex to upload them so just did it myself lol).

Me and Al are now both looking hard for a new place to move into early next year, and new jobs. I currently work part time as a receptionist in a busy doctors surgery in Colliers Wood. However, they are cutting back people and seeing as I am only part time (about 2 days a week), they don't call me in at all anymore. So I'm now hoping to get a job where I am working somehow with animals. :)

My health is OK at the moment, coughing and napping more than when I'm at my best, but it's managable :) I think I'm putting on weight though! I'm trying reallyyyy hard to eat as much as I can and I'm drinking about 3 to 4 pints of milk a day to help boost my calories. It's such a full time effort to put weight on, you can't just have a break for a day because you'll just loose weight :/ So frustrating and tiring!

Some other pics of what's been happening over the last few weeks :) loves xxx

Al's new pet...

Been a while since I last blogged. A few things have happened since; I came off I.V's, after 3 weeks, on Monday and I'm feeling loads better! On Monday my weight had disappointingly dropped to 46.6 kg but my lung function was back up to FEV1 71% and FVC 95%. I weren't feeling too great still though because I'd had a cold for a few weeks; but docs suggested that going back onto Azli nebuliser for 3 months might help get me back to feeling great- and I feel like it's working :D Just need to put on the pounds again now, but I think it'll be easier now I'm well again and off the meropenum I.V's that made me feel so sick the whole time. I also promised I would try Calogen again. Calogen is a supplement that has loads of calories in. You take it like a shot so it's quick, which is good.

Other than health stuff, a few blogs ago I mentioned that Al was looking to buy a new pet; well after years of moaning on about one, he now has a young python! He's called Frankie and is 9 months old, nice and friendly and has kept Alex quiet! I may do a vlog introducing him sometime. I would put up a pic but Alex still hasn't uploaded his pics of Frankie yet- typical bloke.

Angel had been getting so stroppy lately and wasn't letting us go to near her cage or pick her up and she kept growling at us lol! Didn't even realise rabbits could growl until Angel came along :P Anyway, I looked it up and the internet said she was going through like a teenage phase and was being territorial. It also suggested I get her spayed. She has literally just come back from the vets and is still drowsey from the op, bless her. Hopefully this will calm her down and make her stop being such a stroppy hormonal teenager!

xxx

Scare!

Last night I was doing my night time dose of meropenum and mid-way through I started to get a sudden back and stomach ache. Then a few seconds later my airways started getting really tight and I was struggling to breathe. My body swelled started going really numb and apparently my face swelled. It lasted for about 5 mins. This has happened a few times to me before but I've always been at the hospital and there has been an oxygen supply and docs to help me. This time I was just with Al and his friend Charlie, at our flat, and they were panicking! The only way I could get air into my body was to cough. I had a dry cough so I knew it wasn't anything blocking my airways. I was also violently sick. Has this happened to anyone else before?! I don't know what causes it :S I had paramedics come and check me over- my breathing was back to normal when they arrived. I've also let the hosp know and I'm going up tomorrow to get seen. Hopefully they can come up with an explanation as to why it happened; my mum said it couldd be something called 'anaphylactic shock', so gonna look into what that is.

Anyone had this happen before and know what it is..?

xxx

IV update

Been just over a week since I started my home I.V meds. Spent most of this week asleep lol, sleeping about 15 hours a day! I think my body is just working so hard to fight my infection in my chest, that it's knackering out the rest of me. Over the last couple of days I've started to nap less though, so hopefully things are going in the right direction.

Had a couple of bloodtests to check my 'levels', which means that they are making sure the meds that I am taking aren't affecting my liver too much. All's come back as good so far :)

Thinking about glamming up this lil blog a bit by doing a vlog. A 'vlog' is a video blog lol! Not made my mind up yet though as I'm sure I'll be cringing soooo much at watching a video of myself and putting it on the internet haha. So we'll see...

Also, tonight the car dealer in me sold my mama's old, bashed up nissan micra. It's been through the wars this poor little car and has all the war wounds to prove it, still runs fine though :) Anyway, I sold it in record time- within 40 mins of putting it up for sale on good old Gumtree, had someone come over, look at it and buy it cash in hand there and then! Think I've got a future career..!

That's all for now, dinner time :) loves xxx

Hosp appointment

Over the last week or so my health has gone downhill quite a bit. Coughing more, breathless, tired, aching joints, sickness etc, the usual symptoms. Had hospital appointment yesterday, my oxygen levels were quite low for me at 88-89% and my lung function FEV1 had gone down to 59%. Thankfully my weight has stayed the same, which means that I haven't left it too long to get meds. So I'm now on IV meds and doing them at home :) So out comes the Friends boxset and 2 weeks in bed for me.

Also, while at the hosp, I found out the reason everyone comments on my 'curled fingernails' lol! Apparently when you get a lot of infections, your brain sends out some chemical that makes your nail bed swell. This is called 'clubbing'. When you don't have an infection, the swelling goes down and if you have a transplant, the effect goes completely and you have normal nails again lol.

Other than health stuff, Angel's been as cheeky as ever, biting through my nebuliser wire lol; me and Al are looking for our next place and Al is looking to buy a new pet... all will be revealed if he gets it ;)

That's all for now, hopefully next time I blog I'll be feeling better xxx

Livingggg!

In the last two weeks, been seeing friends and family a lot and working here and there. Can't believe I'm still not on IVs, such a great feeling, it's been like 2 months! Longest since I was about 16 or 17. At the moment, I can feel that my chest is getting worse but I'm determined not to go on IVs until after my friend Isis's birthday partaaay :P So for now, just doing my physio and meds religiously and napping through the day to keep as well as possible xxx

MY BIRTHDAY!

IT'S MY BIRTHDAAAAY!! 20 today, bye bye teenage years :( Have had a great birthday though. On Friday me and Al visited my Godmother Cindy and had a take away with her and her boyfriend, with a harbio cake :P

On Saturday, my mum had planned a surprise for me.. I milked a cow!! It was so much fun, the cows were hugee. It felt so weird and I milked a few pints from the cow, named Jackie, for the baby calves to  drink. Learnt a lot about milk and milking cows lol ;) That's also one thing I can cross off my bucket list :) Here's some picsss...

Today, me and Al went up to Battersea Dogs and Cats Home, just for a visit. We've been watching the Paul O'Grady show and they are doing tours of behind the scenes. We saw some very cutee dogs! I'm deffo going to rescue a dog when I finally get one (next year!)

 

On to our bunny Angel, she's having her free health check tomorrow as it's Rabbit Awareness Week. We're going to find out if she actually is a girl or not haha!

Also have a hosp appointment tomorrow, think I might need IV meds this time as the oral tabs the hosp gave me haven't done an awful lot.

xxxx

Good week :D

Over the last week I had been feeling more tired and been coughing more etc- all the usual symptoms that my chest infection was coming back. So when I booked to have my port flushed (the little tube/barrel thing under my skin where my IV meds go) I decided to see if I could see a doc too. Went up and did a lung function test and did my usual sats and weight, and surprisingly they came back pretty good! My lung function had dropped to FEV1 62% and FEV2 86%, which is a decrease of about 8% and thankfully my weight had stayed the same!! :D Barbara, one of the docs, said that she didn't feel I needed IVs yet, so gave my some oral meds. I hateee these ones though because you can't have milk or iron tabs 2 hours before or after, so it's difficult to time. Plus they make me feel so sick :( but if they work then I don't mind. So fingers crossed that with this course of meds, plus really good physio, I might not need IVs for a while.

This week, I went fishing for the first time ever. It weren't as boring as I'd expected, but if we had gone during the day I reckon I would have enjoyed it more because I would actually be able to see my rod! Didn't catch anything though :( and couldn't take any pics because mysteriously, my flash on my camera has broken.. :S

Also, I'm so proud of myself- I fixed the boiler with no help from any men. Al and his mate came up with every excuse under the sun as to why they 'couldn't fix it', but by simply ringing up this boiler women, she helped me figure out what was wrong with it and said I could easily fix it myself :D

Angel is being so cheeky at the moment! She runs round the house like lightning and keeps trying to dig up our laminate flooring lol :P and she's so cute, she now jumps up on the sofa when I'm sitting on it for a stroke :)

xxx

Introducing Angel

Eeekkk this week we got a baby bunny from Freecycle! The man we got her off was animal mad- he had a dog, horse and at one point 60 rabbits!!! So he was giving his bunnies away to families :) when we arrived, there were 5 to choose from- 3 adults and 2 babies. Alex wanted a baby rabbit so we took the little black one. We've called her Angel Delight ;) but we usually just call her Angel lol. She's so mischievous! Can't resist a few pics of her- she's quite hard to see because her fur is so dark....

My chest is still holding out too, which is great :D my ankles and knee have started to swell again with the arthritis so on some anti-inflammatorys but thats the only thing that's really changed this week- so happss!! :D

And finally, congrats to my eldest cousin Michelle who is engaged!!!!!!

xxx

Holiday

Came back from my family holiday from Isle of Man on Saturday evening. It was so much fun, went with all my cousin's from my dad's side, so 14 of us in total. My mama used to live there when she was younger so it was nice for her to return to her old house and stuff :)

 Top of Snaefell

 Me and my aunty Lisa at the beach

 Me, Mama and Abi after watching EVITA at the theatre

 50 Shades ;)

Cousins <3

When we came back off holiday, we had to sort out buying a new car because my loyal old Tinny was too small for Alex to drive :/ It was an emotional farewell between me and Tinny :'(  </3

Yesterday I also had hospital. In my last blog I'd said how I felt as if I'd dipped very quickly, thankfully I then felt like had steadied over the holiday- think the sun helped :) It was my annual review follow-up appointment, which meant I saw the main consultant Dr Bilton. I was so shocked that my lung function HADN'T dropped from when I was discharged! Still 70%, plus I had put on weight- going from 45.6 to 47.4kg! Was really positive :D We decided on a plan to try and keep me off IVs for as long as possible, so fingers crossed it works. In the mean time, I'm going to enjoy my freedom and catch up with as many people as I can while everyone is back from uni and around at the moment :)

Lovesss xx

Wedding anniversary

I've been out of hosp for just over a week now and have gone back to my part time job :D My chest has sadly already declined, but I'm not really surprised because when the doctors discharged me, I wasn't at my best anyway! They just wanted to hurry me out because I'd been in for 3 weeks already and they like to have people in for only 2 really. Due to this quick dip, my appetite hasn't stayed great so I'm not sure whether I'm even putting on any weight :( I really need to get some scales so I can weigh myself!

The trial of the Vest has to be arranged with the people who made and supply them so I'm surrently waiting to hear from them as to when my trial will start. In the meantime, I'm going away for a week with my family and my cousin's to the Isle of Man :)

Last weekend was my cousin's bday and my aunty and uncle's 25th wedding anniversary. Luckily I was able to make it :D Here's some picsss...

Day 15...

Day 15 ... I shouldn't be in Brompton too much longer, YAY :D I think the docs are hoping for me to go home on Weds, providing all my tests come back OK tomorrow. On Friday, my CRP (infection level tested in your blood) was down to 30, from 116 when I came in, which is great :D Hopefully it's even lower tomorrow.

If I can get out this week, I can go to my aunty and uncle's big wedding anniversary celebration and my cousin's birthday :)

On Friday, I finally got to try out the Vest too. It's like a lifejacket that firstly fills with air to squeeze against your chest and then vibrates either slowly or fast, depending on the setting. Whilst it's on, you have to do breathing exercises too. This, in turn, makes you cough and it's a form of physio therapy. It's so much fun! It makes your voice go all wobbly and high pitched lol and your whole body shakes. I'm going to trial the Vest for a month when I'm at home, to see if it's beneficial for me. Here's a pic of what it looks like (ignore how gross I look!) xxx

Say 9...

Day 9 at Brompton, and starting to feel better yaaaay! My lung function is on the up: FEV1 70% and FEV2 90%. When I came in they were around 55% and 60%. Also my appetite is coming back and therefore my weight is creeping back up- put on 0.4kg last week (every little helps!) so now I weigh 46kg. My Sats are also going up, which is the amount of oxygen in my blood. When I came in they were around 93% and now they are up to 97%! This is great because it means that my airways are clearing and oxygen is able to get into my blood again.

My arthritis was still quite bad, plus I had been "exercising" with the physios, which hadn't helped so now I'm on Diclophenac- an anti-inflammatory. I take it with something called Omeprazole to line my stomach as Diclophenac isn't great for your tummy. So in a few days time my knee will be back to normal :D

In other newsss, I've decided to try and make some awareness of a new groundbreaking drug for people with CF and a certain gene type. It's called Kalydeco and is the closest thing to a cure that scientists and experts have come up with :D Disappointingly for me and loadsss of other CFers, I don't have the right gene type (even though I asked the docs to triple check!) that the drug works for; however for the people who do, this drug could literally change their entire lives! It can increase lung function and weight and mean less IV antibiotics and hospital admissions. I believe it works by "unblocking" the defective part of cells in the lungs, allowing water and salt to flow properly in and out of the cell; therefore making the mucus in the lungs more manageable as it thins it. This is the first drug to address the underlying cause of CF, as opposed to the symptoms.

Even though this particular drug won't have an effect on me, it has brought promising hope that other drugs will soon be developed to help all gene types of CF. Hopefully one day soon they will find one for mine! :D

However, as usual these things don't come easily. For the patients who can use Kalydeco, some are still unable to take this life changing drug due to it still needing to be fully approved in England and the costs of the drug. The government can help fund this drug, but it's down to them to decide whether they want to spend some money to help people with CF or if they want to spend it on something else, such as treatment for other illnesses or the NHS or building some stuff or whatever... No one can say one thing is more important than another, but personally, I hope they decide to give us CFers some funding! ;)

There is a petition that the public can sign online to help approve Kalydeco for use in England:
 ------->  http://epetitions.direct.gov.uk/petitions/34753  <----------

lovesss xxx

Day 5...

Day 5 at Brompton, tried the hypertonic saline yesterday but it was a bit of a fail :( I reacted quite bad to it- my heart rate went up, my blood pressure went down and I was very breathless for the whole day. Howeverrr, the physio said we can try different ways of getting it into my body that might make the reaction lesser, so fingers crossed one of the other ways works because I really want to find something that is going to help me stay out of hospital for longer!

Also, when you come into hosp, the docs obsess with checking your blood sugars for at least the first 48 hours. They test them the same way as with a diabetic person, a prick test to get a bit of blood before and 2 hours after meals. This is because people with CF are very likely to get 'CF related diabetes' at some point in their lives. Thankfully I don't have it yet but they keep an eye on it regularly. Anyway, it's a bit of a hassle having to do this  cs you can't snack very easily, therefore it's harder to put on weight; but as long as all the blood sugar tests come back normal for the first 48 hours then you can stop them. Typically, all of mine had come back normal so far and I had ONE left to do before I stopped them. Stupidly I had eaten loadsss of sugary food for my dinner and 2 hours after my blood sugar reading was too high (13.1). So thanks to that everyone is flapping about and I've got to carry on pricking *sighhhh*

xx

Long time no see

It has been foooreverrrrr since I last blogged! I've just been feeling to crappy to write to be honest. A lot has happened in the last few weeks, including my friend Luke's bday party, which was sooooo fun; Alex's birthday and SURPRISE party that actually managed to stay a surprise :D; started Azithromisen again after about 5 years- I'm feeling a difference in my airways and the inflammation of them due to coughing is reduced :D; and most recently Alex passed his driving test! woooooo!!!! :D This will make life easier for use when I'm unwell and will give him more freedom and independence.

So presently, I've been in hosp again for 3 days and have signed up for my free month of Netflix and I'm relaxing :D It feels good not to have to cook, clean, wash clothes etc- like a mini-holiday in that sense ;) But there are the usual annoyances of hospital too, like not being able to see friends or family as much as usual, and sleeping in a strange, noisy place. However, Sarah makes it bearable. Sarah is the reflexologist who comes twice a week- she's like an angel!!! I always feel so relaxed once she's been :D

I'm hoping to try out the Vest whilst in here this time. As far as I know, it is like a life jacket type thing that you wear during physio. Not 100% sure what it does but my Papa really want me to try it out and there's no harm in trying! Thing is, the hospital are so reluctant for my to try is for some reason :S Don't know why seeing as it's not gunna hurt them for me to try it for 5 mins!

Ahh that's all for now, shall update you soooon :) loves xx

Frustrating!

Grrrrr so unwell at the moment! :( My chest was so good on holiday and the milli-second I step back into England I plummet back down :/ Can't stop coughing and it's knackering me out, was in bed all day Sunday and yesterday; also my appetite is getting worse :(

I let the hospital know that I wanted to go on the bed list, but as usual they made it hard and want me to go up there AGAIN to see the docs! Not even joking, in the last month I have been up there 7 times- that's about twice a week, surely they can just remember one of those 7 times to see that my chest is getting worse?! I think they think I'm made of money, and traveling to london and spending the whole day waiting around in a hospital is my idea of a good time :/ I must have spent about £100-£150 going up there this month with petrol, £3 an hour parking and the occasional drink/snack. So annoyed with them, it's just not what you need when you're feeling rough! grrrrrrrr

Turkey 2012

It's been a while since I've last blogged, been busy sorting out and then being on my holiday wooooo :D Before the holiday, everything was a rush with the hospital and booking the oxygen for the airplane, didn't have time to come on here.

The holiday was AMAZING! Me, Alex, Emily and Billy went to Marmais, Turkey for 4 days; it was so hot- 54 degrees celsius! My chest was good out there too, the heat helps it and I cough so much less. Here's some pics of what we all got up to :) .......

Me on the airplane with the overly expensive oxygen!

Me and Al on the beach

Restaurant

Bar

Jeep Safari

View of Marmais

In the sea

Me and Em on the jeep safari

Me at the hotel by the pool

Me and Em on the boat trip

On the edge of the boat