Another Lung Collapse & My 21st Birthday!!

As you may or may not know, I had another lung collapse, here is the story of the past week!

I went to my local A&E as requested by Papworth last Thursday, after getting some pain in my lung, very similar to the pain I'd experienced the week before when my lung collapsed, although not quite as severe, I also was extremely breathless and I was using my oxygen 24 hours a day again.
They x-rayed me and said there was no collapse, but I wasn't convinced. I wasn't going to argue with the doctor, but I went home anyway knowing I was attending clinic at Papworth the next day. I had phoned my CF team in the day telling them what happened and they wanted me to go up there to be x-rayed and potentially stay in, so they were goingt to get me a bed ready on another ward (to then move onto CF ward the next day) but I called them back and said I'd rather not make a 3-hour round trip just in case my lung wasn't collapsed and it be a complete waste of time, so they suggested I went to A&E, then contact them afterwards.
So after my trip to A&E, I called the CF ward and told them it wasn't collapsed but I wasn't convinced so I decided I'd take the bed on CF ward the next day regardless, hoping I would be able to stay in for a good rest over the weekend, then leave on the Monday ready for my busy week planning my 21st birthday (17th March.)

I was put back into room 3 which was the large room I'd been in before when my lung had collapsed the last week. Obviously Josh was going to be staying with me again as my mental health was not in the best shape and staying in hospital for the weekend would have really messed with my head. I also was seeing the dental team at Addenbrookes on the Tuesday and I know if I'd have been alone, my fear and anxiety of the dentist would have been bad enough!!
Anyway, I had an x-ray done at Papworth almost immediately and was greeted with the fantastic news that my lung was slightly collapsed, only just over 1cm so it wasn't enough to need a chest drain but we would keep an eye on it, keep on with the IV's and hope it improved. Well that night, it collapsed. I just remember having the same stabbing, severe, sharp pains around my left shoulder, I felt extremely breathless and just cried and cried, I was pretty much 'ow' screaming, lol. The nurse heard and came running in, I was then sent off for an emergency x-ray and what do you know, it had collapsed further. So from being told on Thursday night by my A&E I had no collapse, to the Friday night/early hours of Saturday, having another proper collapse wasn't how I wanted the weekend to go, lol - I was then given lots of pain-relief and was able to get some sleep ready to have another chest drain put in the next morning.

Me with the CT scanner, potentially crying saying nooooo I don't want another drain!!! Lol

As it was a Saturday, the on-call team were going to fit the drain which made me more nervous as the time before, it was put in by the same guy who does all the Port-a-caths and PICC lines at Papworth, so it was a familiar face and someone I felt I could trust. I'm a very nervous person so I was given 1.5mg of Lorazepam which was supposed to take the edge off my anxiety and sedate me a little, as my chest drain was being put in under a CT scan I had to be awake, as you have to hold your breath, then breathe out etc. so I wasn't able to be fully sedated. One of the CF consultants came along with me so she could give permission for me to have extra Morphine/Lorazepam during the procedure. I had another 0.5mg just before the procedure and I did feel a bit sleepy and I wanted to be in la-la land but my silly anxiety wouldn't let me! I did have a lot of Morphine (Oramorph) before, during and after the procedure but nothing could completely take the pain away.

I will say, the worst bit is having the local anaesthetic put in, it stings and they seem to push the second lot in quite deeply, the first numbs the skin and surrounding area, the second injection I think, goes into the lung, but I can't be sure as I would never watch, lol! After that though, all you feel is pressure and the odd weird sensation, once the drain was in my lung started inflating immediately so it hurt a lot, well it was more uncomfortable than actual pain but it meant it was in the right place and doing it's job properly!

By the Sunday, my lung was pretty much back to normal and my drain 'pot' hadn't done anything for a while, to begin with the water was bubbling as the air that was trapped in the collapsed area was coming out of the lung, along with any other gunk/blood lingering around in the area. The area that collapsed was almost exactly the same area as the week before, so that made us think perhaps we didn't leave the drain in long enough and I had itchy feet and really, really wanted to go home, so although all the signs pointed to the fact the lung was back to normal, 3 days just wasn't enough. So the plan this time was to put the drain in on the Saturday and leave it until Thursday (today) where it was clamped off, they did this to check the lung still stayed inflated throughout the day, I then had another x-ray this evening and nothing had changed so the clamp was removed a couple of hours ago, so I'm ready to have it out in the morning :) ...It's been in 6 days this time, double the amount the last drain was, so I really hope it stays inflated this time.

It's my 21st birthday on Saturday so the plan is, drain out very early in the morning and shoot off home as soon as possible!! I was going to be going home on IV's, but I've decided to have a few days off as I have been on them just over 1 month now, I'm having my tooth out at Addenbrookes on Tuesday then I will probably come back to clinic on Wednesday providing no further collapses happen and I don't overdo it at my party!! I may then restart IV's but I'm hoping to get a nice break from them for now if my lungs will behave!
During my stay my kidney function figures went a bit mental, one of the IV's I was on had caused my kidneys to stop working properly. I had to have magnesium tablets for 3 days and I was very dehydrated. But after stopping this particular IV completely, thankfully within 2 days my kidneys had returned back to the normal range!

So it's now Thursday night and I'm all packed ready to go home as soon as the drain is out! I can't wait to be reunited (again) with my puppy babies tomorrow, then begin my birthday celebrations. I'm having a poker night with my Dad's family Friday night, then a big house party at my Mum's on Saturday.
My cousin Ashton dyed my hair last week to match some extensions that I bought a while ago, so I'm having them put in on Saturday afternoon, my hair colour is lovely and she did a fabulous job :) my hair is the lightest it's ever been, but it's exactly what I wanted! I also have a lovely lipsy dress and I'm sooooo excited for the whole thing, I will hopefully have some photos to upload for you guys from the party but I intend to be off my face, so I will depend on others to take photos for me;)!!

There were plans in place so I could attend my party even if my lung hadn't gone back to normal, there were talks of hidden chest drains which would hide under my clothing, then return straight back to hospital but thankfully it's all worked out okay :)
I'll leave you with a photo of me in hospital, I woke up with curly hair which is odd for me so my suspicion is that Josh curled my hair during the night, hmmmmm. Either way, it's the last photo of me being 20 on this blog, hooray :)

Oh and, my weight is still increasing, I took a bit of a knock the other day when I was sick 3 days running, but now I'm a little healthier again, the weight is going up again (today I was 43.1kgs)
Thank you for reading.. Hopefully my next blog will not have any mention of anymore lung collapses but instead be a party-filled-21st-birthday-fun-happy-blog, yay :) - can you tell I'm slightly excited???
xxx

Bad Lung Collapse and A Major Weight Gain!!!

I've been trying to write this blog since Wednesday night but really haven't known where to begin, I also haven't exactly felt up to writing a blog in a complete drugged up, numb, morphine-induced state haha! So I thought I'd wait until I could give all the correct information, so here we go.

I came to clinic Wednesday afternoon (3.30pm) for IV blood test levels, then I was supposed to just have a quick chat with my doctor about whether I needed my pain killer doses changed etc, we'd spoken on the phone Tuesday and had already put the prescription in for my next week of IV's and all my other meds, thinking we could make the appointment as quick as possible which couldn't be further than the truth!! I did ask for my anti-depressant dose to be increased and that was about all, I then hadn't quite decided in my head whether I was going to ask for an x-ray or not because as I'm about to explain, I'd had a weird thing happen on Saturday night (which at the time, I'd never thought of putting the two together, but looking back I can't believe I didn't think of it!!) so I thought perhaps I'd mention it and as an x-ray is pretty standard when it comes to CF I thought it wouldn't hurt because they can tell a lot from an x-ray.

I then went to have my blood levels done, then whilst having it done my CF consultant came in and said okay we need to talk about your x-ray *cue panic alarms in brain* she said I'd had a pneumothorax which is the medical term for a collapsed lung. This means somehow the lung had come away from the chest wall and air/fluid had got behind it. We then tried to figure out when the lung had collapsed because to me I'd been feeling as normal as possible, I did feel more chesty, definitely more short of breath, I had my oxygen on 2-3L non-stop for 3-4 days, when normally I only have it on during the night. So I then put two and two together and remembered exactly when my lung collapsed...

It was Saturday night (the night after the evil dentist appointment) I suddenly started getting this agonising pain in my left shoulder blade area, I remember rubbing it, moving my arm around and nothing helped, I thought it was my PICC line infected as that was where it is, the pain then moved lower down my chest, I took some of my morphine medication and fell asleep, that was the last I thought of it! I knew Josh had an important golf match on Sunday morning which I didn't want him to miss, or to have a lack of sleep in preparation - so I decided not to bother going to A&E, even though I do recall saying to him 'I think a normal person would've called 999 for that but we're used to this sort of thing lol'... I know I didn't want to sacrifice his match, golf is his passion and I don't want my CF to take away his life and hobbies and besides the pain had settled so I thought I'd be okay and it was just an odd blip - So basically, Monday night at poker I had a collapsed lung, lol, Sunday morning when Josh had gone to golf, I had a collapsed lung - such a serious thing, but to someone who is used to being in constant severe pain and discomfort, I didn't think anything of it - when as a matter of fact, an ambulance probably should have been called and I would've known all this a lot sooner!!

This meant I had to have a chest drain put into my lung to remove any air/fluid so the lung could essentially re-inflate itself and stick back up where it should be. I was clearly a nervous wreck because I may, or may not, have mentioned before but I suffer very badly with anxiety so when the 'unknown' is about to happen, I go into a massive panic. They did give me some Lorazepam which did it's job I guess, I did feel a bit drowsy and at ease but obviously unless they knocked me out, I was bound to be a quivering wreck!! The procedure then went as follows..

They carried out a CT scan of my lungs, which gave them a 3d perspective view of my lung as opposed to a 2d x-ray image, so they were able to locate the exact position of the collapse. They then mentally prepared me for what was about to happen, probably not a good thing, I prefer them to just get on with it and tell me when it's over haha!! Anyway, they cleaned the area then I had 3 injection of local anaesthetic, two into my lung area and one into the skin, it stung like mad, I have local with PICClol!) 

So in conclusion to all this - I'd never had a lung collapse before, never in a million years did I expect my doctor to tell me I'd had one and I hope to not have another one again! But, the main thing is I've done it, I've come out alive, just with another little scar but that is nothing to me. The collapse was a collapse but it wasn't one where they feared I may die from it so at present I'm still hanging in there okay, if it keeps happening there are future complications regarding transplant but for now, this shouldn't cause any problems in that aspect!

The most important thing I need to mention was that my consultant understood I'm not in a very good place emotionally at the moment so she advised Josh to stay with me at least for the first night, then perhaps switch with family members, so I always had someone with me. But  Josh stayed by my side the entire time, he carried my little fluid tub around for me, he made me endless cups of teas, went to the canteen to pick me up better meals, went on little food shopping trips for me, went and asked for pain meds when they were late, he helped me so much and I think if I had done that hospital stay alone, things would've been very different - he truly is amazing and I'm so so so grateful he stayed with me.

I also need to thank my Nanny, Mum and Father in Law - My nanny slept round my house Weds and Thurs night keeping the little pups company so they weren't on their own, she has health problems of her own but she wanted to make sure we came home to a nice house so I'm really thankful she did that.. Also my Mum looked after the pups in the day, making sure they were fed, she cleaned our carpets and tidied the house up and then Tony (Josh's Dad) stayed Friday night with the pups and didn't leave until Saturday lunch time, my Nanny had turned up earlier in the day not expecting anyone to be there and they ended up having a 2 hour chat with him haha! It's great how families really do pull together in these sort of circumstances.

Also the night I was rushed into hospital, my Mum brought up all the things I might need, like pyjamas, clothes, phone chargers, medication etc. My Step dad also came as did my Sister Kim, when they first arrived I was wide awake but I had been lightly sedated that day and had been given a lot of pain relief which all seemed to hit me at once so I don't remember too much later on that evening, I think I kept drifting in and out of sleep!

My Dad also came up to visit and I had a lot of texts/comments/messages of support and a few lovely cards and presents which I'm very grateful for, I said to Josh whilst in hospital, it's times like this, and seriously life-threatening situations like this one was - that you realise who is important, I had texts from people I barely know but they took the time and effort to think of me, which is more than a lot of people did.

Anyway, it's now Saturday night and I'm back home in my lovely little house with my pups :) it's earlier than most people would leave hospital after a pneumothorax but I do struggle a lot and felt food wise etc, I would have been better off at home.
I'm still a bit sore but I'm bound to be after having the drain out today, it didn't hurt, it was similar to having a PICC/long line/venflon removed, the worst bit (as always) was taking all the plasters, dressings off and getting the stitch out!! So I do still have all my regular pain killers anyway, so thank god for that!
I'm now still going to be on home IV's still until Friday when I will then be back for clinic and I'm sure, yet another x-ray, but in the mean time I'm going to have my dental work done at Addenbrookes hospital on Tuesday, my hair coloured Wednesday, Cut on Thursday, Clinic on Friday and then I will relaxxxxx :) Obviously I'm not a complete moron and although stubborn at times, I know when too much is just too much and wouldn't hesitate to cancel anything, especially since my 21st birthday is on the 17th March and I'm having a house party with around 70-80 guests (eek) so I need to be well and healthy for that, if you want to send me cards/presents/love just ask Josh for our address and I'll look forward to receiving them ;) I'm joking, of course I don't expect anything!! 

Here are a few photos, they aren't in anyway 'gory' like post-transplant photos, I guess the worst one is this horrible photo of my face - but alas, you have been warned ;)

But if you don't want to look at all the photo's there is one photo right at the bottom of the page that you MUST look at, if you have any interest in me, my weight gain, my transplant situation etc, then you will equally love it... So please have a look :)

The x-ray on the left was taken on Wednesday, the collapse is not really visible but the scarring and damage is. The right x-ray was taken in 2008, it is less clear, but it has a lot less scarring.

This was my drain, straight after it had been put in,

This was my fluid pot attached to my drain, it is not all blood - they filled it with 100mls of water so they could watch for bubbling (indicating air was still coming out) it did turn pink because there was blood in my lungs, but there was also blood from where they put the drain in.

This is just me looking rough in my hospital bed!

I still needed 24/7 oxygen at this point.

Close up :) - make up was definitely needed after seeing the previous photos.

My absolute hero <3

I had just been told the drain was coming out and I could go home that afternoon, yaaaaaaaaaay!!

This is where the drain went in, it was just under my left breast. There is a stitch, but no dressing and was about to be pulled out (which didn't hurt at all!)

Me, eating as usual, looking super fat but happy that I was drain-free!

Me looking a lot more well and healthy :)

The amazing, exciting reunion with my baby girls <3

I love them!!!! :D

YES YOU DID READ THAT RIGHT AND YES THOSE ARE MY FEET ON MY SCALES!!!! 44kgs - I'm probably going to cause another lung collapse due to excitement!!! That makes my BMI 17.9, Harefield were already happy with it when it was 16.4 so if they were then, they will be over the moon now :)

An ideal BMI is 18.5 and to get to that I need to be 45.5kgs.

But the highest weight I've ever been in my life is 44.3kgs, so if I can get to 44.4kgs I don't care what happens, that is my ultimate goal - I'm already the heaviest weight I've ever been since being with Josh, so he will most probably leave me now for a newer, skinnier version, but I guess if you want new lungs, you have to deal with the new 'fat rolls' and the consequences... ;) 

Hehe, thank you for reading and for all the support!

Weight Gain & New Tablets.

My weight at clinic today was the highest weight I've been in the last 3-4 years. It was 42.5kgs (6 stone 10) to most people this is still tiny lol, but I was 31kgs before I started gaining weight which worked out at a very rubbish, 5 stone!
My BMI is now 17.2, it's still not 18.5 (healthy) but if you compare that to what it was in January 2010 which was 13.3, it's a huge increase!
In total I have now gained 1.9 Stone.
I'm going to be be totally honest, I never imagined I could do it, I was positive and hoped I could, but I along with my CF team thought it was quite a difficult target to reach in a potentially short space of time..
They told me I needed to gain 2 stone and get to at least 43/44kgs, back then my weight was dropping day by day and I didn't think I'd ever get it anywhere near what it was today. It all started by sorting out my diabetes, my blood sugars were not very well controlled and that wasn't helping my weight at all, so I worked really hard on getting my average blood sugar down, which I managed - from 15% to 9% it still needs work and I know it isn't perfect, but from being that high, it's now pretty good for me. The transplant team like to see improvements and that is a huge one.

The rest of my weight gain has been down to a tablet called 'Megace' my friends with CF, particularly people I spoke to on the CF forum had advised me to ask about it because they said it was literally a wonder drug and I believed them after they gave me all their stories, so I really wanted to try for myself. At first, Papworth were very reluctant to give it to me for a number of  reasons but whatever the potential side-effects could've been, what it has done to my weight is worth going through anything (I haven't actually had any side-effects other than irregular periods, which isn't too much of a problem anyway)

To anyone who is struggling with their appetite, even if you feel you could use a little boost with your weight, ask for Megace and fight, fight fight. I had to put up the biggest fight to get it prescribed and my dieticians still refuse to believe my weight gain is due to the tablet, but I don't care because I know and now the numbers speak for themselves.
It was the best thing I've ever fought for, if I hadn't done it I don't think my weight would be anywhere near where it is now and I'd be nowhere near the stage I am in the transplant process.
Not only has it helped that, but it has also made me feel so much more confident in my body, I was literally a walking skeleton, when I look back at photos I look horrible and I'm embarrassed that I ever felt 'okay' looking that way. Now I have boobs again, I have a bum, my skinny jeans look tight on my legs and I enjoy buying new clothes now because I'm so much happier with my body. I've always been thin, so I know I'm not going to look 'fat' and to most people I probably still look thin and a bit boney, but I am a lot happier in my skin now I have this extra weight on me!

I had clinic today and I have started on quite a few new tablets recently, 12 hour morphine twice a day, two tablets of diazepam at night for sleeping/relaxation then also taking 1 tablet during the day for my anxiety. I'm also on two other pain-killers, one for general pains and the other is an anti-inflammatory for my arthritic pain and today I've also been started on Oramorph which is a fast acting morphine to take during the day/night.. So hopefully I will be completely pain free soon lol!!
I am suffering with all these tablets though, particularly confusion and obviously sedation, I'm very tired a lot of the time but I must admit, it's amazing to finally be able to get a good night sleep! Also I can have a break from the pain, the only thing is I keep talking a load of rubbish apparently and I'm a little off-balance at times, it's quite entertaining to other but a bit weird for me, like on Saturday night my puppy Milly told me she wanted to go into town, I'm also talking in my sleep (something I'd never done before) it's madness haha! I'm officially insane :D

I'm still on 3 IV's for another 2 weeks then we are hoping I can have a break with the intention of staying off IV's for longer than 7 days, but we will see how that goes! Perhaps if all these tablets start working together, I won't need to depend on IV's so much and if I'm not in as much pain, maybe my chest will not be so difficult... I'll keep my fingers crossed.

There was another not so nice conversation again, the 'end' was brought up.. I was asked (if it came to it) whether I'd prefer to be at home or in hospital to die and after a lot of consideration, I decided I'd definitely want to be at home with Josh, my family, in a comfortable surrounding with my little baby pups by my side.
It's a tough thing to think and talk about, but at least I've now told them and they are now going to contact our local services/hospice to see what care they are able to offer should this need to happen.
But as I've stated possibly a million times now, I am not going anywhere :D!!!
Yes, I know I'm struggling more and yes, I'm now on the so called 'dying drugs' but, I still have as much, if not more, faith that I'm going to get on the list and get my transplant. I believe now my weight is better I have an even better chance of getting on the list in April and those lovely new puffers will be mine :)

Times are tough and I am going through a very rough patch at the moment, but it is Winter and I do suffer more during the colder weather. I think if permenant IV's are needed that will obviously help and hopefully these tablets will continue easing my pain and suffering and things will start to look up again.

I am feeling so unbelievably positive today because of my weight gain, it has made me really believe in myself and the fact that I can do anything I put my mind to!

Thank you for reading :)
xxx

I'm Still Here!

Firstly, I want to thank everyone who commented on my last blog post, it wasn't the easiest post to write but I've said from day one I want my blog to be very honest, telling you guys about the good and the bad times. I appreciate it couldn't have been easy to read either, but thank you for the overwhelming support. It has been absolutely fantastic, knowing so many people are really rooting for me and are 100% behind me gives me the motivation to carry on fighting this evil disease. I will, of course, continue to stay as positive as possible and keep my fingers crossed I get on the list as soon as possible :)!

Sorry I havent blogged lately, it's just that I haven't done anything 'blogworthy' I will have been on IV's tomorrow for 3 weeks, I will decide whether I will continue for one more week or not at clinic tomorrow, I'm not 100% sure what is best because although I'm not in as much pain (thanks to my new pain killers) I am still not right, my cough has become very chesty over the past 2-3 days and I'm now feeling a lot more tight chested, but sometimes IV's can do this so I am in two minds as to what will be best, I will probably ask their advice and go from there. I do think I could potentially have the early stages of a cold, but again time will tell.

We had some friends round on Friday night which was nice, people think I don't want company because I'm unwell most of the time, but it actually does the opposite. Imagine if you spent every single day feeling ill and you just sat around at home, in your pjs, doing nothing. Basically, it makes me feel like everyday is the same and all I have to think about is feeling rubbish, when people come to visit, I like to get myself dressed, maybe get a takeaway in and have a good old giggle, which takes my mind off being ill. So it's a good thing.. Of course there are times when I do just want to sit in and do nothing and going out is a completely different story, I find it very difficult to go out to visit people/attend things because in my own home, I have everything here I could possibly need if something went wrong, also it is more effort to go out. So if you would like to see Josh and I, it's best to come round our house and see us :) and as long as I'm not practically bedbound, then we love visitors, as do the pups!!

Speaking of the puppies, I've made them a facebook page. I kept adding photo's to my wall of them and my facebook was getting filled with beautiful puppy faces, so I thought if I made a page for them, if we have any photos/videos/updates on the pups we can do it there, all you have to do is click 'like' and you will be able to view the page and see all the photos etc. we upload.
Milly & Tink's Facebook Page
I'd love it if we managed to get lots of likes on there (and so would the pups haha!)
:)

Thanks for reading!
xxx

End Of Life Plans?

I had clinic Wednesday, I assumed it was just going to be a typical day 7 of IV's checkup, I'd do lung function, get weighed, see the doctor, blood test, collect my next weeks worth of drugs then go home. How wrong was I?!

Basically it started with me not being able to do lung function due to my severe chest pain, I had 1 go of each test but it caused so much pain and they were worried I may cough up more blood, so they decided to stop it. I then saw the dietician who was pleased my weight had increased by 0.5kgs but it was still down 1.6kgs since I was weighed at Harefield on my fist transplant assessment in November, so obviously this isn't ideal and she has given me some advice and tips on how to increase my weight, to be honest it's nothing that I'm not already doing, I think my lungs are just using up so much energy to breathe now, every calorie is going towards that. My heart rate was also 155bpm resting, so it proves my heart is working super hard to cope with my rubbish breathing.

Then my CF consultant came in, I'd told the physio's that I had coughed up blood and just assumed it had been passed onto my doctor, but it hadn't so I told her about that and she arranged for me to have a CT scan where I will have due put in my veins so show my blood vessels in my lungs, if there are any that aren't right (which could be causing the bleeds) I will have to have a procedure to sort this, although I don't think it will come to that because this was my first proper lung bleed since 2009 I have had tiny little amounts during this time and the odd streaks of blood in my phlegm, so I don't think I will need the procedure but they want to check anyway.

Secondly, I was in what I can only describe as serious, serious amounts of pain, I was rocking back and forth in my chair and struggling to talk, needing to take a breath after each word, but then being in pain trying to take the breath in. She then said to me she could see I was in a lot of distress and wanted me to start a morphine tablet, her words were 'I know when morphine is mentioned patients usually think, oh my god I'm going to die, but she said she's had patients on it for a few years' to me I thought, thank god, because thin amount of pain is starting to get extremely difficult to cope with and I think having probably the strongest pain killer you can have should help to ease this horror! This tablet is a slow release one, which works over 12 hours but then I should carry on with my other pain killers throughout the rest of the day. She has started me on a lower dose with a view to increase if it didn't give me any side effects, other than making me very tired when I have all the different pain killers in me, I'm not having any bad side effects so I assume it will be increasd.

Josh then asked if I still needed to come to my annual review which is in February, she said no it would just exhaust me and they don't need it, she said normally annual review is when they assess you to decide a plan of action for the next year, but she said their plan for me is just to keep me alive and hope I get my transplant.
Then the worst bit was she said we should still have the annual review meeting which is usually 6 weeks after the day of tests, she said they would use this to discuss important matters. She then asked if I'd made any plans or thoughts about my funeral, or how I would want it to be at the end. I said I had plans for our wedding, being that if I wasn't well enough to wait for transplant we would marry quickly if things were going downhill, and other than knowing I want to be cremated I hadn't given it too much thought, she said it's a good idea to think about these things because I am going downhill quite fast and I guess I never know when an infection could be my last. She also said I'd be referred to palliative care soon which is sort of end of life care, they offer support and just help with things during this difficult time. I was scared when she first said it, but then I thought if something is going to hopefully help me in anyway it's not something to be afraid of.

I was a little taken aback by all of this because although I know I'm very ill and I do worry about my future, when you hear a professional basically confirming what you think, it makes it all seem very real. She was going to contact Harefield and explain I've had a bit of bad turn and hopefully see if they can get me in any earlier, I know they are very busy at the moment so I'm not expecting anything, but anything sooner than April will only be for the best.

I'm now on 3 IV's, along with all these pain killers, I'm pretty knocked out. I've been sleeping a lot more than usual but hopefully it might all help. They said ideally they would have really wanted me to be admitted into hospital that day, but I'm very stubborn and I said please give me this one week to see if the new changes help, if not of course I will have no hesitation to go in. I also no longer need to do lung function unless I am having a good day, because seeing he numbers means nothing anymore, they want to concentrate more on my symptoms, if I feel okay, I can still do it, if not, it's not something I have to try to do.

I'm still staying very positive, thinking about my funeral and things will only help if I was to pass away, it eases the pressure off my family and Josh because I will have already explained what I want, I do have a few ideas of things anyway, but I hope it doesn't come to that :) it is best to be prepared and as I said before I am very optimistic but I am still realistic and know these things could happen, there is no guarantee I will be here next year, but there is also a chance if I get on the transplant list, I may get my lungs and this time next year be completely healthy.
I still have hope, I have amazing support and so much keeping me going. I will not give up. Anything that was said to me in clinic is to help make things easier for me and those who care about me, it doesn't mean I'm going to die next week!!
That's the way I'm looking at it :)
Thank you for reading.
xxx

Photo Shoot, Filming & Coughing Up Blood.. All In A Days Work

On Friday I had the lovely film crew round from the CF trust, Oli, Holly, Paul and Craig. I wasn't exactly sure what I was going to be filmed for but I knew it had something to do with CF week and a video raising awareness of CF! I still don't know 100% but I just do as I'm told :D hehe!
There were cameras and lights galore, 7 people in the house, including Josh, Mum and I, two mad little puppies in our, not so large living room. It was pretty manic but we got the job done.
I simply had to answer a range of questions, most of which I'd spoken about before, but there were some which I hadn't really been asked, particularly questions regarding whether I think I'm going to get my transplant, the second was how do Josh and I feel knowing we have to have a 'plan B' wedding in place in case things don't go to plan, also at what stage will plan B become the actual plan.
It was very thought-provoking and I guess my simple answer is that I always try to remain as optimistic but as realistic as I can. I know the stats, I know the figures, if I do get put on the active transplant list, there is a 50% chance I won't get a transplant, a 10% chance I won't make it through the operation, then there are percentages for how long you will live post transplant, 30 days, 1 year, 5 years, 10+ years. Doctor Carby told me at my assessment they usually predict the 5 year percentage depending on the way the first year goes, if you have a pretty smooth year, you have a good chance of having an extended life as opposed to if things are not so good, this means the chances are reduced but by no means out of the question.
It's important to stay realistic because those statistics are there for a reason and that reason is that it is real, 50% really won't get their transplant. There is no hiding from that fact, but on the other hand, if I didn't stay optimistic I wouldn't be living my life I would just be waiting to die, just another stat, I don't want that to be me and I hope it won't, therefore I find it important to stay positive and have belief that it will happen :)

There were two super cool things that happened during the filming, the first was using the clapper board, action... Lol! The second was hearing 'that's a wrap' when we were finished, it was very movie like and one of the guys asked me if I'd done anything like this before, I said I had been on the news twice, they said I was very good and seemed a natural. So my career choice now, is an actress ;) clearly a joke, but hey!

On Monday I had a photographer come round on behalf of the CF trust to take some photos. I had various different photos done, simple shots, photos with me and Josh, some with the puppies, some of me playing poker, pictures with oxygen on and me on my iPad as that is what I do most of the day! Haha. It was fun :)

The not so fun news, was that in the space of 2.5 days I have coughed up blood 3 times, two of them were not too much but the other one was quite bad so it was scary, I said if I coughed up anymore I would go to A&E as I was told by my CF team it could indicate a lung collapse or pneumonia etc. but so far there hasn't been anymore, other than some bad chest pain I've felt okay. So I'm happy to get through Tuesday then I'm off to clinic Wednesday anyway for my day 7 IV checkup. I'm hoping there isn't a problem and I can be 'fixed' (if only) if not, I might have to go in, but I will wait and see what happens Wednesday.

Before that though, Wednesday morning we pick up our new car :D we have finally got a motability car, I lose £200 a month but the only thing we have to pay for is petrol, so it works out okay. It's a brand new Seat Leon, in white. Very excited because we are finally getting a nice up to date car.

That is about all for now, I will probably blog Wednesday night unless I'm too tired on what is decided at clinic, please keep your fingers crossed that I am okay to carry on at home and there is no serious problems :)
Thanks for reading.
xxx

Update

I'm back on IV's again, I managed a whopping 2 weeks off. Wooweeee lol. It's still January and I'm on my second course of IV's in 2012 lol.
I looked at my annual review letter earlier from Feb 2011 and it said in 2010 I had two courses of IV's, one in May which I only had as a precaution due to going abroad, it's always best to cover yourself when going on holiday because it's not ideal to get sick! Also you have to be in as best condition to fly. Obviously this doesn't apply to me anymore, I can no longer get any travel insurance and as I use oxygen and a wheelchair, it's not easy to sort all these things out. Anyway, the second course of IV's was November which was also when transplant was first mentioned to me and they thought I was ready to be referred but obviously my weight was too low.
Then in 2011 I had 9 courses of IV's two of which were 3 weeks courses, so I spent a total of 20 weeks on IV's compared to 4 weeks the previous year! What a difference, it's scary how quickly things have changed, I used to rarely need IV's because I would have just tried to cope and tended to get away with it. But now my breathing and coughing is so difficult to deal with, as soon as I start slipping I have to have IV's to prevent my infection getting so out of control it could end up being a serious problem.
When I saw the transplant team at Harefield they said my lungs looked pretty bad and they also said due to that a bad infection/nasty bug/flu could kill me, for example if I got the flu virus, pneumonia etc. so it's very important for me to stay on top of my health, even though IV's are one of the worst things to put up with, I can deal with everything else but IV's suck. I suffer so badly with side effects, despite taking tablets to control the problems, like sickness, headaches etc. it still ruins me and basically knocks me out for the entire course. Something which is supposed to be doing good, tends to make me feel so bad I wonder why I bothered starting them in the first place, lol!! IV's rarely make me feel 'better' anymore and that is why I have to have them so often, I only feel a little less breathless while I'm on them, then the day after I stop I go downhill again immediately and feel back to square one again. So it is annoying, but as I said, when my CRP (infection levels) are elevated, I have to have them to get those numbers back down, they should be below 10 at least, I don't know what mine were this time, I will find out when I go to back for my day 7 checkup next Wednesday.

I did receive some good news at clinic, I've been put on a different pain killer, Papworth usually only prescribe Tramadol as the strongest pain killers but it did not agree with me, so I'm on something else nownwhich has definitely helped :).
The second bit of good news was regarding my liver, obviously at my assessment Harefield were slightly concerned about my liver disease because Papworth hadn't sent much information about it, to what extent it was etc. anyway, I asked my consultant if this was a reason to worry about not being listed and she said, once Harefield got my liver write-up they were happy, I am seen by Addenbrookes for my liver and their consultant said on my most recent ultrasound scan, everything seemed okay and the only reason I am said to have 'liver disease' is because I have early stages of it, but mainly because my blood doesn't clot too well despite having high doses of Vitamin K, IV and oral tablets, nothing really improved my numbers. But they said this might not even be due to my liver, it could be because I am underweight and my body doesn't have all the proper nutrients required to produce clotting factors. So I will take this as a positive because unless my numbers are so drastic that there is a risk I could bleed to death during transplant or something, then I think I'm okay... Time will tell, but for now, I'm less worried :)

My weight was down but I have been having a lot of sickness and stomach issues lately, so I'm hoping once this passes and I'm not sick so much from coughing particularly, then I will start gaining again.

That is about all to update on :)
Thank you for reading.
xxx

Lack of blogging!

I apologise for my lack of blogs lately, I really haven't been too well and I have been checking in on Facebook but I haven't been doing much other than sitting on the sofa, in my pyjamas, cuddling the puppies.

Wednesday was Josh's birthday, we went out for a meal with his family and my parents. It was good fun and we all had a laugh as always! It was a carvery which is a love of mine, particularly roast potatoes :) I did try and hide how unwell I was, I was drugged up on pain killers but I still hate people seeing how bad I am, I don't want people to feel sorry for me or anything like that and I like to feel as if I am beating cf because I am still doing what I enjoy, just with the added extra of strong pain killers lol!
When people come round our house, I feel I'm in my own environment and it's acceptable for me to show I'm not well, whether it be because I'm lazing around in my pyjamas, or on my oxygen etc. it's different than being out in public. My close family and Josh understand how bad I am because I don't hide it from them, but when people ask how I am I usually say struggling a bit, but I'm okay, because people probably don't want to hear me giving them a sob story haha!!

Health wise, I am pretty bad. I have been getting some severe chest pains, I have pleurisy very often and I do have a flare up at the moment, but I've also had these new pains, stabbing pains which feel like they are coming from the depths of my lungs, every single breath hurts at the moment. I do have clinic on Wednesday so I will suggest an X-ray just in case there is anything to worry about, as these pains are new it could be something but it could equally just be a very bad infection. The IV's I had over Christmas and new year did very little, I feel worse now than before I started them. I was on them for 3 weeks, then I stopped to see if it was the IV's making me feel bad but that didn't seem to be the case so I will ask to change to some new IV's which will hopefully kick this evil infection in the backside, failing all that, or if there is something very wrong, I will have no option but to go into hospital. But at the moment that is last resort, because I hate it!

I have my pre-transplant dental check up on Monday, you have to have all dental work sorted before you can be listed, I have a chipped tooth and may need a filling so I will find out that on Monday. I also have the CF trust coming round next Friday to do some filming for CF week, I'm not 100% sure what sort of thing it is, which is why this is pretty vague but I will find out I guess :)

So that is about all for now! I promise I will update quicker next time.
Thank you for reading.
xxx

What A Year! 2011 and Looking Ahead to 2012...

I am in two minds about this year. The first is so glad it's over, the second is that this year has been quite successful.

My health has changed a lot this year, especially when I compare myself to last year, I could climb the stairs, I didn't have a wheelchair, I had 3 courses of IV's because sheer stubbornness tended to get me through my bugs. Then this year, I started oxygen in January, overnight and when walking then I was told to use it when I was struggling with my breathing, so the usage became more frequent (at home, still not 100% comfortable wearing it in public.) I use my wheelchair a lot, other than small walks. I have had 9 courses of IV's and have spent 20 weeks of the year on the evil IV's, also the more unwell I am, the worse I suffer with the IV side effects. Last year I was advised to consider transplant, now I am actually being assessed and if I am deemed 'well enough' at my assessment in April and everything goes to plan, I will be on the active transplant waiting list.
Over the course of the year I have seen my health deteriorate quite fast and my ever-increasing need for IV's and my inability to do simple tasks, such as washing my hair, getting dressed, climbing the stairs without the help of Josh is a constant reminder of just how bad I have got.

Also this year I experienced my first ever loss, I have lost family, my great Nanny, my second cousin David. But losing my puppy Foxxy was the hardest thing I have ever gone through, I couldn't eat for days because all I wanted to do was cry and grieve. Losing anybody close is difficult but I'd never gone through something that close to home before and it was horrible. I still miss her so much and I would give anything to have her back, but I take comfort in knowing if we did still have Foxxy we wouldn't have been able to give these new little babies a great, loving home, with a Mummy and Daddy that spoil them and treat them like our children not just pets. I know Foxxy is watching over us and she will protect us and the new pups :) xxxxx

This year has also had its good sides. When I decided to make my blog public after 2 years of writing privately, only to those with CF, I never expected it to have generated so much. I thought maybe a handful of people would have read it and maybe I'd get the odd comment but what actually happened was unreal.
Firstly my story was in my local newspaper the Evening Star, I was also on ITV and BBC local news, on Radio Suffolk and I also was in the daily mail after fronting a national organ donation campaign with Live Life Then Give Live. I was invited to attend the Evening Star press ball, where I met some wonderful people and received a number of amazing gifts through sheer generosity. The ball also raised a lot of money for the CF trust and various other local charities. I also won the Stars of Suffolk outstanding bravery award which was a complete shock but an absolute honour, not for one minute did I expect to win so when I actually did, I was very emotional and cried my way onto the stage, lol! I became an ambassador for LLTGL, next year I hope to raise even more awareness about organ donation and hopefully, along with the other amazing people working with LLTGL, we can put an end to the statistic that only 50% of people on the list will get their transplant in time. We also did the abseil for the CF trust where my family and friends raised over £3000. A good friend of mine, Jo, had her birthday party and wanted all of her 'presents' to be donations to CF.

One of the most important things that has happened this year is realising who will be there when things go wrong, who will be by your side when you are too weak to do anything, those who don't just perk up when you are unwell, but the special ones who are there through the good and the bad times.
Firstlt my parents, Jacqui, Gary and my Stepdad Matt, they are absolutely fantastic, I couldn't ask for anything more, they are always there for me no matter what.
Josh is amazing, I don't think I need to explain exactly why because it's very obvious how important he is to me, we have almost been together 3 years and have been engaged for 1 year. He gave up his job as an estate agent this year to become my full time carer, so I was able to move in with him permanently and I am forever thankful that he has done this for me.
My Nanny and Grandad, Margaret and Len - they always take me back and forth to clinic, visit me many times when I am in hospital and are always there to to help when I need it, I always get a text from my Nanny every clinic appointment to say good luck and that they hope it goes well, this sort of thing keeps me going because I know they are thinking of me.
Likewise my Auntie Hayley, I get texts from her too before clinic and her first question is always, how are you feeling at the moment? We also always have giggles at poker :)
My Sister Kim is great too and we have just found out the amazing news she is pregnant so I am going to be an Auntie :) I love my sister to pieces and I am so so happy for her and her fiancé Kieren.
Also Josh's family have been so supportive, some peoples parents may not want their son/daughter to be with someone who has as much baggage as me (lol!) and ultimately an uncertain future, but they have been great and very understanding particularly over the last year when things have got quite difficult for me.
I have also made some great friends this year mainly people with CF, like Kimberley Kneil, she is a lovely, caring person and when we lost Foxxy she sent me a heart shaped pendant with a hologram of me and Fox on it with very kind words in the other side, I thought this was such a wonderful thing and it is my little lucky charm, she is also waiting to be listed for a transplant at Harefield and I have no doubt when we both receive them we will be meeting up plenty of times :D
Also, Alan Crowther, we became very close this year and he has been a great support and a good friend particularly when I was in hospital, we would sit up until silly hours talking on msn, he is going through a difficult time at the moment as he is unable to have a transplant in the UK and is becoming very sick and I am constantly thinking of him and wishing him better.
Another friend is Victoria Glen, she is a lovely girl and whenever I need advice, or just someone to chat to, she is there. She hasn't had the best year but I am positive good things will happen for her this year because she is so lovely she deserves a break :) and when I have had my transplant, I am travelling up to Scotland where we are going to get absolutely drunk together because we are actual alcoholics, hehe!
Finally people like Clare Cruickshank, Kirstie Tancock, Chantelle Hughes, Emily Thackray, Pete Franklin and anyone else I may have missed, I apologise. But it's been a great year for making new friends and if I receive my transplant I have a lot of wonderful people to meet up with :).
Finally, the fantastic people who read my blog, the support I have received has been overwhelming and I thank you all for your kindness :)

So I'm going to end this blog by saying that my new years resolution is to focus on what is important. Staying as well as possible, getting myself on the transplant list, continuing to work hard raising awareness for CF and organ donation and looking out for the people I care about and being eternally grateful to the amazing people who care about me.

Thanks for reading and I wish you all a happy, healthy 2012!
xxx

IV's for Christmas! And Cute Puppy Photos

I had to go to Papworth on Wednesday, I had been feeling very unwell and had hoped to not have to start IV's until after Xmas. It started about 2-3 weeks ago, I had a bit of a cold, then it progressed to a bad cold and finally the cold went to my chest causing a bad chest infection. So I have been struggling for quite a few days now and to be honest my clinic appointment couldn't come any quicker. I've never been on IV's for Christmas but unless I wanted to spend Christmas curled up on the sofa, feeling sorry for myself, I had to have them this year.
I started Wednesday and the side effects have hit me pretty hard as usual, I've been suffering with sickness, headaches, ear pain, temperature, tiredness and itchyness :/ not fun.
I also don't feel any better yet, the IV's have made my chest tight and wheezy, so I'm actually feeling worse than before I started lol. I have tomorrow (Xmas eve) to pick up, or I'm going to be ill on Christmas day, boohooooooo!!

Anyway, enough of that. I want to wish all my blog readers a fantastic Christmas and a happy new year! I hope your day is filled with happiness, love and laughter :) not forgetting mountains of food ;)

Oh I also have the date of my transplant assessment, the 2-3 day one. It is the 2nd of April, quite a long time to wait but I am top of their list for cancellations, so hopefully it might not be that long, but if it is at least I have plenty of time to get in tip-top weight condition.

I just want to leave you with a few photos to hopefully put a smile on everyone's face :) it certainly does with me. My little Christmas babies (ignore me in my pjs...)

:) 

Merry Christmas! xxx

Transplant Assessment

Today I had the final part of my transplant assessment which was meeting with the Doctor. I was very nervous and felt sick all day because there were 3 possible outcomes, the first was a flat out no to transplant for one reason or another, the second was to wait a while, which could be because say my weight was still not good enough, or my blood sugars, the final outcome was I'd go back in the new year for a 2/3 day assessment, which is even more tests and an overnight stay, more important chats and information.

Thankfully, I got the third option. So I'll be going back to Harefield in the next few months, or it could be earlier if they have any cancellations.

The chat was a mixture of emotions, I was told I am ill enough to need a transplant and as there isn't any other treatments they can offer me, transplant is my only option. I was expecting them to tell me I was too well especially because I'm not yet on 24 hour oxygen, but the fact I have a very poor quality of life, I do use oxygen and my wheelchair and also the fact I have spent about 18 weeks of this year on IV's made them think I am bad enough to be listed. They actually seemed like it was quite urgent, when I left the doctor said 'We will get you in for your next assessment sooner rather than later and hopefully if you are well enough, get you on that list as soon as possible!'

The bad bit of news was that I am blood group O which is the most common so the waiting time is longer, but also for some weird reason there are less O blood group organ donors that are short, a very strange statistic but an important one. He said this could mean I'll have a longer waiting time for new lungs because finding a suitable match could be more difficult, but it might not and I could get lungs quickly, I guess I will just have to wait and see :)

The other bit of not so good news, is that I do have liver disease but I don't believe it is too bad as I only have yearly ultrasound scans so if my CF team aren't too concerned about it, hopefully Harefield won't either. But if they think my liver is bad, I might not be able to have a transplant.

They didn't seem too concerned about my weight, he said obviously it would be ideal if I was a little bigger and it's the perfect time to gain weight (lots of Xmas food!) and also my average blood sugar was the best it's been in a very long time, so they were quite happy with that.

So to sum it up, I hope my liver isn't too bad. I'm a little worried about my blood group but I'm happy that they aren't saying I'm too well and I should get on the list :)

Thanks for reading.
xxx

Puppies and & 'Outstanding Bravery' Award

Its been a week since we got two new puppies, we were going to get a new puppy before we sadly lost our baby Foxxy, so we decided to go ahead and not let the puppies seller down. They sent us a photo of the girls and we found it very difficult to decide which to have, I liked one and Josh liked the other and had we still had Fox we would've had two dogs anyway, so we decided to get both of the girls.
They are Pomeranians, Foxxy was a Pomeranian x chihuahua, so they would be similar to her traits but look a bit different.
Their names are Tinkerbell (the white stripe one) and Milly-Mia.

On Friday I attended an award ceremony, the Stars of Suffolk awards. I was nominated for outstanding bravery, I was up against two amazing, inspirational people and didn't think I stood a chance of winning. I wasn't feeling well at all but I got myself dolled up and managed to go, Josh, Mum, Dad, my Stepdad, Nanny and Grandad all came too.
The evening was very glamorous and emotional, so many amazing stories of equally amazing people.
To my complete shock, I won the award. I got a standing ovation, a beautiful award and a certificate. Each winner also got a special prize and mine was an iPad2!!! It will be amazing when I go into hospital and will definitely help with boredom.
I'm so thankful and grateful to the people who nominated me, my family didn't realise you could nominate people so all my nominations were from people who don't even know me, that makes me feel so good. I am also thankful to the judging panel who chose me to win.
It was an amazing night and I'm so glad I was able to be part of it, I was truly honoured to be in the same room as so many inspirational people :)

Health wise, I'm not great. Struggling a lot with my breathing and coughing more than normal, I still have the awful headaches and keep having temperatures which isn't fun! Hopefully I pick up a bit and can be well enough to have a great Christmas!

Thanks for reading.
xxx

Our Little Angel x

Our princess, Foxxy, has passed away.
This is the hardest blog I've ever had to write and to be honest, it's a blog I never expected to have to write because I always thought she would out live me.

On the day of my transplant assessment, she was hit by a car and immediately went to heaven.
It was a tragic accident and I'll try to explain exactly what happened.

Foxxy had outgrown her collar, so we intended to get her a new one for her 1st birthday which would have been the 7th December. So because we didn't want her to be on her own while we were at Harefield my Stepdad was going to pick her up and bring her back with him to their house. Obviously, as she didn't have a collar we decided he would use Fifi's which is their dog, she is only a westie/bichon frise, so she is small but the harness turned out to be too big for Foxxy. To start with he said it fit fine, then as she got to the car she stood up on her back legs and managed to wriggle out of the harness, she then ran out into the road and a car was coming, normally we live on a very quiet road where there is barely any traffic, so for a car to have been coming at that exact minute is what makes it so devestating. She was hit by the front of the car and it was obviously an instant death, she was only very tiny so any impact would have killed her, she was not crushed by the wheel or anything and we know she did not suffer any pain so I'm glad about that. Her last memories will be running, which she absolutely loved to do, she'd just run around the garden and run madly around the house, so she was free and running happily.

Foxxy was 11 months old, so she barely had time to live before she was taken. But we know she had the best life, even if it was short. We couldn't have possibly loved her anymore and she was spoiled rotten! She was cuddled daily, fed lots of food and special extras, she had tons of toys and she even got to sleep on our bed for the last few nights. She brought us so much joy and happiness, she gave us strength when times were tough or when I wasn't feeling great, a big cuddle with her and seeing her beautiful face made me feel I could get through anything. If me and Josh ever had an argument, she brought us back together and kept us strong.

I can't imagine life without her, it's so difficult I've never experienced hurt like this in my life and I am trying to stay strong because I know she would've wanted us to think of the good times we were so lucky to have with her. My baby girl will never be replaced and it will take time for this pain to heal, it will be particularly hard because we had such big plans for her birthday and Christmas.

At the moment, she is safe at the vets and she will be cremated on Saturday, we are going to put her ashes in the garden (her favourite place) and plant a rose bush where the ashes will be buried.
This way, she will still be a part of our house and if we ever feel she is not with us, she will be happy in the garden. Josh and I are also going to get memorial tattoos, I'm going to get a butterfly with an angel wing and Josh is getting a phrase.

I know she will be our little guardian angel and will be protecting us for the rest of our lives.
R.I.P my sweetheart, we miss you more than anyone can ever imagine and will love you forever, you were our baby and will never ever be forgotten.
xxx

Not in a Very Good State! :(

I'm having some serious problems with my head, I've had a severe headache for about 3 weeks with this headache comes quite bad dizziness I feel like I am spinning, it's particularly worse when I close my eyes to try and sleep, also when I move my eyes from one thing to another it take a couple of seconds before my focus adjusts. I'm also feeling very faint, light headed, extremely tired, weak and sick. I also keep getting confused, I repeat things I've already said and the other day I completely forget what I'd done during that day which was quite scary.
People had suggested I got my carbon dioxide levels checked as when CF gets worse you can retain co2 and therefore your body does not get rid of it properly, which gives similar symptoms to what I'm having, but I had the levels checked yesterday and they were completely normal.
I also have developed a cold over the last few days, I'm coughing a lot which doesn't help my headache! I have a sore throat and runny nose, my temperature feels like it is all over the place because one minute I'm freezing, shivering even when in a hoodie, slippers, heating on - then the next I'm sweating.
&Now last night I started to get pains around my heart area, which feel like short stabbing pains which happen about every 3-5 minutes, it's not fun and it's very uncomfortable.

So basically, I'm a walking disaster at the moment! &There is no current solution or an answer as to what is causing these problems.

There is one bit of good news and that is that yesterday I reached my highest weight in 2.5 - 3 years 41.5kgs, I'm the highest weight I've ever been with Josh so he probably doesn't fancy me anymore because I've become a fatty lol!! :P

Thanks for reading, hopefully my next blog will include all the good news that I am fixed!
xxx

PS. Thank God for spell-checker because my brain is not working at the moment lol!!

What do you want for Christmas?

Now Halloween and Bonfire Night are out the way, it's time to start looking forward to the best holiday of the year - Christmas!!
Everything gets all festive, houses are decorated, you eat more than you do all year, you spend time with loved ones, you get to bring out the old christmas tunes and of course you get presents.
So, what do you want for Christmas this year? An iPad 2? A new mobile phone? Money?...
I know exactly what I want.

I want new lungs!! I want to be able to breathe without struggle or fear. I want to be free from oxygen. I want to be able to go on long walks. I want to look forward to things without the worry that I may not be here to enjoy them. I want to be able to walk up the stairs without difficulty. I want to be able to go somewhere and not have the car loaded up with a wheelchair and oxygen. I want to be able to chase my mental puppy around the house.
I just want to be able to have the most fantastic christmas!

But unfortunately, that sort of thing doesn't come wrapped up in a gift box with a pretty little bow on it (and I do need to be on the transplant list first, lol.)
So I guess for now, I'll go back to wishing for an iPad!

Obviously, I don't know how many Christmas' I could have left, I'm hoping I will have many many more years to enjoy it but I'm going to make sure this one is special just in case - I want to be surrounded by the people I love and care about, I want to make sure everyone is happy and we all have the best time, because after all it is 'the best time of the year!' :)

I hope all my lovely blog readers have a perfect christmas, full of happiness and laughter.
I also hope that everyone who is currently waiting for a transplant gets the greatest gift of all this Christmas (well, hopefully before xmas!)
:)
xxx

Lots of Good News!!! :D

Once again this blog is going to be full of all good news, things have been going well lately!

Firstly, I got my highest lung function in ages yesterday which was 26%. A rise in lung function is rare when you are this ill, but I'm on an IV antibiotic that I've never had before and that seems to be making the difference, also the fact I've essentially had 4 weeks of IV's with a small break in the middle, have all contributed to my increase :) I'm not going to say I feel better, I haven't really noticed a difference, I'm still quite breathless and coughing but I feel I have more energy (which is not always a good thing when you are a hyperactive mad thing anyway!)

My appetite has gone through the roof lately, I'm eating pizza like it's going out of fashion, I'm snacking constantly and there is hardly ever a time when I'm not thinking about food, lol! Which is a very good thing. Also I'm starting steroids on Friday (ready for my bone strengthening infusion) and when I'm on steroids I get the munchies, also I'm going on quite a high dose so I will be eating like there is no tomorrow with the steroids + Megace lol!!

Last night a few of us from poker decided to go in fancy dress seeing as it was Halloween. I decided to be a very scary cat, I just don't do horror, I've been a bunny and a french maid at Halloween parties, so I kept up the tradition of not being scary, lol! Here are a few pictures:

Stepdad Matt, Mum, Auntie Hayley and me

Matt, Josh and Uncle Justin

Me and Hayley

Me and my wonderful Mum :)

Josh and I

The final piece of good news is that I'm being made an ambassador for the organ donation charity Live Life Then Give Life I will essentially be doing what I am now, which is raising awareness for organ donation, LLTGL and promoting the charity! I'm honoured to be part of the team and hope I do a good job in encouraging people to sign the donor register and do them all proud :)

Thanks for reading!
xxx

It's a Good Day to be Fat!

Today (Saturday) I feel I've had a fantastic day, food-wise.
I have had essentially 4 dinners, plus loads of snacks!

I had a portion of lasagne made with pro-cal powder - roughly 500/600 calories.
1 Domino's pizza (ham, pineapple, chicken and double cheese) - 700 calories.
3 Domino's cookies - 165 calories each.
A bowl of scrambled egg covered in ketchup also made with pro-cal powder - roughly 300 calories.
Supplements - 400 calories.
Add onto that, a few bags of crisps, two cans of coke and a pack of maltesers :)

&Now..... I'm starving again!!!! Yet I feel full, how can I feel so full but feel so hungry lol! I may just deal with having a hot chocolate or cup of tea or something, I don't think my stomach can hold anymore food, at least not right now, maybe in like 10 minutes or so ;)

Me and Megace are getting along very well, it has made my periods pretty irregular as I was warned but the benefit of the appetite absolutely landslides the not-so-good side of things!! So I'm a very happy (chubbier) girl at the moment and I'm very pleased with myself.

I hope that todays goodies will have a reflection on my weight on Monday when I attend Papworth for my day 7 check-up whilst on IV's, which seem to be helping might I add! I do have a headache still which is a very annoying pressure type headache where I do seem to find myself shutting my eyes quite a lot, but I'm hoping this is just the IV's and not the beginning of 'oxygen headaches' I used to wake up everyday with an awful headache which is when we then did tests to show my oxygen levels significantly dropped overnight, hence why I use my o2 when I sleep, this cleared the headaches up almost immediately, so I'm hoping it's just an IV headache and nothing else!
Time will tell I guess, but for now, my chest feels better, breathing is slightly easier and my chesty cough is back to a more dry, tickly type cough.

:)
So I'd say this is a pretty positive blog to be honest! Wooohoo, finally pretty much all good stuff to report!
xxx

IV's, Weak Bones and an Update.

I have added some important websites over there ->

These include my new transplant group on facebook, how to become an organ donor and the CF Trust website :)

I went to emergency clinic Monday because I have been feeling very poorly and the infection in my peg needed to be treated. My weight was 40kgs again, but despite feeling so unwell and feeling sick from my peg infection, they were pleased I hadn't lost any weight, so although I was gutted I hadn't gained, I hadn't lost either. 

It was pretty obvious I was going to be starting IV's and I've been put on Ceftazadime and Aztreonam, I've never had Aztreonam before so we thought trying something new may allow me to have a bit more of a break between IV's (2 and a half weeks I managed!)

I didn't want to go into hospital as although I feel unwell, I don't feel bad enough to admit myself. I feel I can cope okay, now I have Josh with me all day he can help with my IV's and it will ease the pressure. 

I always suffer quite badly with IV side effects and these are no exception. I've been feeling very sick, dizzy, double vision, headache, body aches/pains and ear pain/popping. They usually only last a few days, but as I've never had Aztreonam before it could last the whole 2 weeks, I guess I will find out!

However, on my transplant referral letter it said I have osteoporosis (weak bones) and this could prevent me being listed. So I asked how can this be changed, (which they saw as very positive that I'm trying really hard to correct any problems!) I have had a bone strengthening IV before called Pamidronate which I was told could cause 'severe bone pain' if there is any infection in your body, so last time we tried to remove any infection with IV's and steroids - however, I had the worst pain I've ever experienced in my life and they said it was one of the worst cases they'd seen, I was having morphine, ibuprofen and paracetamol but even that barely touched the pain but it did allow me to fall asleep a bit easier. So I will be going into hospital on day 14 of IV's to have more of this evil stuff and at least if I am an inpatient they can control my pain better than I could at home, so I'm absolutely dreading it as I have never experienced pain like it, but these are the things I need to do to give me the best possible chance of being put on the transplant list.

Thank you for reading.

xxx