Saturday, 24 December 2011

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

Wednesday, 14 December 2011

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

Sunday, 4 December 2011

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

Friday, 25 November 2011

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

Thursday, 17 November 2011

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!!

Tuesday, 8 November 2011

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

Tuesday, 1 November 2011

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

Sunday, 30 October 2011

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

Tuesday, 25 October 2011

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

Sunday, 23 October 2011

Transplant Group

I've made a facebook group where people can get updates on the transplant situation - It will include any appointments, important information such as false alarms, but hopefully it will include the news that I have received my transplant!
You don't have to be friends with me on facebook to join, just click the link below! :)
Kerry's Transplant Group

Thank you!
xxx

Friday, 21 October 2011

Transplant Assessment Date!

You wait ages for a bus and two come along at once! Well that's whats happened with my blog, I've had nothing to write about for a while and then two big things happen within 2 days of each other! So here is yet another blog :)

I have received a letter from Harefield saying that my pre-transplant assessment is on the 23rd November. I will go there for 1 day, during the morning I will undergo various tests such as, lung function, blood tests, x-ray, ECG and ECHO (heart scan.) Then in the afternoon I will meet with the doctor to discuss lots of different things and see whether I'd be a good candidate for transplant. If they believe I am, I will then go back to Harefield for a 2-day assessment, which is 2 days of yet more tests where I will then be told whether I am going to be put on the list or not.

I am very scared as is to be expected as this is a major thing and the results could be the difference of whether I can have a transplant or not. So it is a pretty big thing. I am also slightly excited because I've been working so hard to get to this point and I was worried after my referral was sent off, that I wouldn't even get an appointment, I also thought they might have seen my weight and just completely ignored me and not even bothered seeing me. So that in itself is a positive :)

So now I really need to work super duper hard to get my weight as good as possible in preparation for the assessment, the higher my weight on the day the better my chance of being listed!

:)x

Wednesday, 19 October 2011

New Feeding Tube &My Weight Gain!!

My feeding tube somehow got very badly infected causing me severe stomach pain which has been going on for about a week now. At first I thought I'd pulled a muscle from coughing so much, but then my feeding tube started to become sore to touch. On Monday night I noticed it was starting to come out of my skin, for anyone who doesn't understand, my tube is held in on the inside by a small balloon type thing, which is inflated with 5ml of water and secures the tube so it does not fall out. The fact my tube was coming out told me immediately there was a problem, I tried to deflate the balloon but no water would come out then when I tried to put more water in, it was like being stabbed in the stomach. So I held it in place with plasters and hoped it wouldn't fall out. My CF team told me to wait until Wednesday (clinic) for them to have a look at it.

The pain has been some of the worst I've ever experienced and I've been through quite a few painful things in my time lol so that is saying something! Even very strong painkillers were barely touching the pain, so I knew something needed to be done.

I attended clinic today and was unable to do lung function, firstly due to the pain and secondly I was worried the force of blowing out really hard might have made the tube fall out completely which wouldn't have been good! To be honest I feel worse than I did last week, my 'pleurisy type pain' is the worst it's ever been, I'm coughing more again and feel I may have to admit defeat and have yet another course of IV's. This was also what my doctor suggested today, he had a feel of my stomach and there didn't seem to be any problems so we put the pain down to an infection in my peg.

I was sent straight to Addenbrookes where a specialist would have a look and hopefully change it to a new tube. When we pulled all the plasters off, you could clearly see it was very infected, it was red, oozing out what I'll just describe as gunk(!) and it was so sore to touch. She quickly removed the tube, took a swab of the 'gunk' so we can know for sure if it was an infection, then I received the brilliant news that the new tube I was getting would be a Mic-Key button! 
Woooooo, here is a picture of the new little tube I have :)


As you can clearly see from the photo, I have a little bit of a belly going on. Well this is because today on Papworth's scales I was the highest weight I've been in 2 years!! I'm absolutely over the moon and feel the weight side of things are really going in the right direction, even if my silly lungs aren't!

So the plan is to call Papworth tomorrow to tell them I've had my tube changed. Then sort out a follow-up appointment depending on when IV's are necessary, it may be Friday if I get very bad tonight/tomorrow, hopefully it will be Wednesday. &To carry on eating eating eating and getting fatter and fatter! :):):)

Happy days.
xxx

Monday, 17 October 2011

Good News & This Time Last Year...

Well we'll start with the good news is, I got my flu jab :)
After not receiving it last year, it was quite a scary time, the doctors told me if I was to catch flu my chances of pulling through wouldn't be too high, so the fact I was unable to get the jab last year was a very frightening thing, so this year, woohoo, I'm all vaccinated and ready to face the evil winter months!

The next piece of good news is, it doesn't seem my 'cold' has developed into anything too serious, yes I have a tickly annoying cough, yes I keep blowing my nose and yes my glands are well and truely swollen, but it isn't too much that I feel worried and thus far it hasn't gone to my chest and hopefully I will be able to manage a bit more than 10 days between my IV courses this time!

The final piece of good news, is that Josh has officially left work now and has taken over the role from Mum and has become my full-time carer. My Mum has been amazing to me and has been so fantastic at not just being my general wonderful Mum, but also for looking after me so well for the last 20 years. I believe without my Mum keeping me so positive, I wouldn't be alive today, when I've felt down she's picked me up, she's kept me on the right path, she's had faith and belief in me that I can do anything that is put in front of me, she has fed me up when my weight was low, she's kept me optimistic but also realistic which is super important, she's been by my side when I'm unwell and she's always dancing beside me at a party, basically - I owe a lot to her and I love her to pieces.

This does mean that I can now live with Josh and Foxxy permanently without being between houses all the time :D yay!
I used to be frightened of being on my own, so particularly when I was very unwell, I'd try and always have someone with me so I didn't have to do too much for myself, or if things got really difficult for me (and as morbid as it sounds!) I didn't have to worry that I would die alone. So now I no longer have that worry, but it does create a few different worries, for example money! We are going to be worse off, but not to the point where we can't live, we'll just have to be a bit more money-wise and not spend it on unecessary things and will probably have a cheap christmas (so don't be expecting anything expensive if you receive gifts from us!)
It will be great though when I'm in hospital because on the days when Josh would visit, he would normally come straight from work and not arrive until 7.45ish which used to mean we didn't get too much time together, so at least now he'll be able to come earlier in the day and stay a bit longer :)
It will all hopefully work out for the best, if I can put up with him for 24 hours a day?! ..... I'm joking :)!

Now onto the main topic of this blog:
This time last year my consultant told me with the way my lungs had been declining (which was at quite a rapid rate) they didn't think I had more than a year or so to live.
Well I can safely say, it's now been a year since that day and I am still here, I'm still fighting, still living and breathing (sort of lol) I'm still just as much the Kerry I was before, just I now come with a few added extras like my 'cheelywhair' and my oxygen, for example have become my new best friends.
My lung function is around 12/13% worse than it was a year ago, which obviously has had a big impact on my quality of life, but it hasn't stopped me working really hard and trying to get on the transplant list, I'm still pigging out and doing everything I can to gain the much-needed weight!
So in summary of how things have gone during this year. My weight has gone up from a very low 32kgs (5 stone!!) to 40kgs (6 stone 4) which is really good! But my lung function has gone from 32% (in February 2011) to 19% (in October 2011) which is pretty bad, lol!
But as is always the case, you've got to take the good with the bad, I'm going to prove that my 'expiry date' is none other than a silly prediction and keep on working my butt off, so that my friends, is exactly what I plan to do :)!

Thank you for reading.
xxx

Thursday, 13 October 2011

General Stuff

I finished IV's last Wednesday and my lung function had come down from 24% to 19% which is not ideal at all, IV's are at least supposed to try and sustain my lung function, but the fact it had come down by 5% meant we decided to stop the IV's, my infection levels had come down and I was feeling a little better. So it wasn't worth carrying on and risking another drop. This means my lungs can hold 500ml of air, which is pretty rubbish - 1 and a half cans of coke basically!

Since finishing IV's, I now feel like I've picked up a cold, which is just typical. I have my flu jab on Saturday and if I'm unwell they won't do it, so I'm hoping it's not a cold and I will get my flu jab this year (last year, due to a huge mix-up at my GP, I didn't get the jab at all!)

I don't really have much to say, just wanted to update on my situation at the moment!
I will do a proper blog when I have something to talk about :)
xxx

Tuesday, 4 October 2011

The Campaign and Other Media Stuff.

I am the face of a national campaign for organ donation, here are the posters:



I was in the Daily Mail newspaper, here is the link - Daily Mail Article
I've also been on my local news programme, BBC Look East, regarding the posters but this is no longer available to watch (it was available for 24 hours only) which I'm very disappointed about!

So I have been very busy, I've had press contacting me left, right and centre. It's been a bit manic and I'm also still on IV's so I'm trying to juggle my health with my new found stardom - Lol!!!

It's been a bit overwhelming, I never had any idea doing this campaign would get so much media attention, not only has it raised awareness for organ donation, but it's also raised awareness for Live Life Then Give Life, which is the charity I've worked with on this campaign. The article has also gone global, including Spain! So the word is well and truely being spread about organ donation and LLTGL.

But of course with all good attention comes bad attention, I've had a few negative comments, some people believe the slogan to be degrading to women and being the face of it, I've had to take the brunt of a few rude remarks, including people saying I'm not worth 'giving one to' because I'm ugly - Yes I'm not a model but I am a real person, they could have taken a gorgeous model and stuck some oxygen tubing on them and claimed they need an organ, but it's the fact that it is real for me, I really do require oxygen, I do actually need a transplant, which makes the campaign so much more real. 
The tongue-in-cheek slogan shows that despite being very unwell, I can still have a laugh and a joke, my life is not all miserable. I feel the slogan captures the readers eye and will make them question what it could be advertising, it is the world we live in where we are sold by innuendos.
If the slogan had just said 'this girl needs a transplant' would that really make you think, would you really stop and take notice? That is why I am fully behind the campaign, anything which gets people talking, be it in a bad or a good way, is still raising the issue of organ donation and getting people thinking about it.

So yes, I've had more positive comments than negative and I am just a normal girl, so to begin with I found it difficult people slating me for trying to raise awareness for organ donation, but now I am just hoping that the campaign really will make a difference and people will become donors. 
I think I deserve a medal for the abuse but there we go ;) lol, joking!

I have a few more media-related things coming up over the next few days and then I'm back to clinic on Wednesday, my weight is still good, I've had a change in IV's which has helped as I'm starting to feel better. I may continue and do a 3rd week of IV's which will hopefully really kick the infection so it doesn't come back so quickly this time! It all depends on what my numbers say on Wednesday.

I have to go to bed now as I'm completely exhausted!
Thank you for reading and if you have supported the campaign or given positive feedback, I am very thankful :) 
xxx

Monday, 26 September 2011

Weight Gain Update!

I haven't said too much lately on my weight gain, because prior to this past week or so, I had hit a bit of a wall and hadn't gained much weight, I was starting to get a little down about the lack of gaining weight that was going on and at times I thought I'm never going to get there, but of course I still soldiered on and worked my little butt off and here is what has happened in the last 10 or so days.

I started Megace 10 days ago and the biggest impact it has made is my meal portion size - I would've usually had a half-hearted attempt at a 'meal' but now my dinner is probably double what I would've previously had, then I'm having seconds, even thirds! Which for me was unheard of!
So it has made a huge difference on how much I eat and I've been told it can take a while to see the full benefit, so if my appetite continues to increase I'll be eating loads soon :D

I've also been using Pro-Cal powder in all my food again mainly started this about 10 days ago too, it's a flavourless supplement which can be mixed into all types of food. I've been having it in things like lasagne, korma, cupcakes, hot chocolate etc. I've been really working hard to incorporate it into my meals, one sachet is 100 calories and I'm allowed 5 sachets a day which is obviously an extra 500 calories - So I'm really working hard with this, or should I say Josh and Mum are :) lots of big meals for me!

Anyway, here is the bit you all want to read...........
10 days ago I weighed 37.7kgs and today I'm almost 40kgs, which is about a 4.5 pound gain!! In 10 days!! Wooooooooooooooooooooooooooooooooooooooooo.

I'm shocked that Papworth were so reluctant to give me either of these things, they don't give Megace out to their patients and when we asked about the powder they said 'they prefer not to give it out because it doesn't add too many calories' ... Well I think I've proved that every little helps and anything that could potentially help my weight gain is worth trying!

So here's to me being a whale very soon...
And if I don't become a whale, at least I might get on the transplant list?
:)
xxx

Thursday, 22 September 2011

IV's, Side Effects and A Potential CF Cure Update

I went to clinic yesterday which I had brought forward due to how unwell I was feeling, they pretty much could tell right away I wasn't well as I could say one word, then had to take a breath, say another word, take a breath, literally every word was exhausting, I also struggled walking from my clinic room to the weighing area which is a probably a 20 second walk, lol. Took me about 5 minutes! Terrible. Also my wheezing was very loud, with every breath came a high pitched crackle which might I add is soooo annoying, imagine trying to sleep at night and all you can hear is this wheeze, grrrr. Anyway, I didn't have to say much, my numbers spoke for themselves and they mentioned IV's immediately. I didn't want to stay in hospital because my Mum is on holiday this week and I hate being an inpatient without my Mum there to visit/support me I do have Josh and my Nanny and Grandad who visit often. But I said I'd like home IV's then if I don't feel that I'm getting the full benefit from them at home, I have to go back to clinic on day 7 and day 14 of IV's, so I can change my mind, or perhaps have a 3-4 week course of IV's to really kick this awful infection that has a nasty grip on my failing lungs.

Now what some people might not know, is that with IV's comes nasty side-effects, it has become apparent lately that the sicker I am, the harder the side effects hit me. When I wasn't this bad, IV's used to make me feel a bit cold-like on the first few days, then I'd pick up. But this time, for example, I've been sick 4 times since my first dose Wednesday afternoon (it's now Thursday evening) I had a terrible migraine, which left me with a pressure-headache which in turn caused a nasty nose bleed (something that's only happened to me once before) I've felt very lethargic, dizzy, faint and I don't have much co-ordination so last night I walked into a wall, yay. It's very difficult giving yourself something knowing exactly how bad it's going to make you feel, but I'm just trying to focus on the good - unfortunately I'm now so bad where IV's don't make me 'better' but they do pick me up a bit, my chest calms down a bit more, my lung function rarely increases but my infection levels do usually drop a bit. So there are some benefits in amongst the evil-ness that is IV antibiotics! There was one good thing which was that I had my PICC in still so didn't have to worry about needing a line put in my arm, which usually causes me stress to the point I delay IV's which is never a good thing when you're this sick.

I did receive some good news which was that I had gained weight! I started the Megace tablet a week before clinic and my appetite has definitely increased and the weight gain proved it! Always good news, it keeps the doctors/dieticians happy and it makes me feel my hard work is still paying off, however big or small the increase, it's still a gain, not a loss and not sustained - It's better! Yay :)

I'd like to finish on a subject which is obviously quite close to my heart, it's something called 'Gene Therapy' which could potentially cure Cystic Fibrosis. I wouldn't have any benefit from it because the point of gene therapy is to stop you getting any worse but because my lungs are so damaged and scarred I would still need a transplant and that is my only option. However, I have many friends with CF who don't deserve to get to this stage and if there is something that could end the suffering and stop new babies being born with this awful disease, then I'm going to do my best to help it.
Millions of pounds have already gone into funding this cure, but they are £6,000,000 away from where they need to be and the researchers have been given 6 weeks to find the money or the whole thing will be scrapped, ending all hope for people with CF who have put so much faith in the fact there is a potential cure out there.
It has been trialled on people so it is quite far into the research, but without the money, there will be no cure, which means my friends, my fellow CF sufferers and the 5 new babies are born with CF each week, well this could save their lives.
If you have any money, literally pennies, any contribution towards the target would help massively. So if you would like to donate, please visit the link below and I am thankful on behalf of the entire CF population if you choose to do so.

Cystic Fibrosis - Gene Therapy Appeal

Thank you for reading, I apologise this blog has been quite long but I do tend to ramble on!
xxx

Wednesday, 14 September 2011

Clinic and Bad Times.

Last Wednesday I had to attend clinic to speak about Harefield and as far as I am aware, my transplant referral has been sent off. It wasn't a very good clinic to be fair, I had a few issues I wanted to bring up and it didn't go down well, but I've come away from them knowing I said what I needed to say.

There is a tablet called Megace which is used to treat breast cancer but it has a huge side-effect of weight gain, so other CF centres prescribe Megace for patients who have very small appetites or need to gain weight. To me it sounded like a tablet that could benefit me but when I asked Papworth they said they preferred not to prescribe it to their patients because it can stop periods and cause hormonal problems. So I felt annoyed that most other centres prescribed it yet I couldn't get it, so I put forward a huge case using my friends experiences with how much weight they'd gained and the amount of people who said it was a wonder drug outweighed the people who said they had any problems, to me having no periods will be a blessing in disguise ;)! So anyway, it worked and I got the tablet and although we had a few 'issues' finally getting the prescription, I think they were very reluctant and therefore not very co-operative, I finally managed to collect Megace from the chemist yesterday! So far I'd say it has increased my appetite, I literally could barely touch food just lately because I'm feeling so ill I'd have half a normal portion for dinner and the odd snack. Already today I've had two 'normal' portions of lasagne, lots of cakes and other snacks then on top of that my supplements, so it's definitely done something! If this tablet works for me as well as it has for others, my weight should increase and I will be one step closer to transplant.

Now on to where I am right now.
My weekend away in Blackpool had to be cut short because I was very unwell, I was experiencing severe lung pains and could not stop coughing, then on Sunday I woke up and my arthritus had flared up badly, I couldn't hardly walk at all and then the lung problems on top of that meant I needed to come home.
Then on Monday night, I dragged myself out of the house to go to poker because I'm very stubborn and even though my body is saying no, I persist on saying yes. I was okay while there, I'd taken pain-killers so I was at ease a little but still wasn't feeling great.
However, then when I got home I felt this odd feeling which feels like water spreading across my lungs and a constant crackle which doesn't ease, that's when I knew I was having a lung bleed and sure enough, next thing I know my mouth is full of blood, it was quite a nasty bleed and was probably my worst one. It made me dizzy and felt a bit faint, but it did ease the pain a little bit. I still felt horrific though.
Fast forward to last night, I suddenly got stabbing pains in my right lung, I've had pleurisy before and the pain felt very similar to that, it's by far the worst pain I've ever experienced, I will say this - pleurisy is evil.
On top of all that drama, I'm coughing non-stop, completely breathless, in a lot of pain and feeling downright awful.

But at least I'm hungry....

So, not really a fantastic blog but there are small elements of good news in amongst this - the Megace and the appetite increasing, hopefully the effects will continue to improve and I'll be permenantly attached to the kitchen lol!

Apologies this isn't a great blog, but everyday isn't always great for me and I definitely feel I'm going downhill quite rapidly now, so my need to gain weight is getting greater by the day but thankfully Josh has been Godsend the past few days and I don't think I'd have made it through without him <3
Thank you for reading.
xxx

Wednesday, 7 September 2011

Harefield and General Life Really..

Monday I attended Harefield hospital for an 'informal visit' meaning I had a look around the hospital, met some of the transplant team and also get a feel for the area.. So it was just to get an idea of whether I wanted to go there for transplant basically and the answer is YES!

I was really impressed with Harefield, the transplant clinic was very spacious and modern-looking, ITU (intensive care) was scary and very surreal knowing (hopefully) the next time I have to go there would be straight after my transplant if everything works out the way we hope! I also looked around the wards and met the transplant co-ordinators.

The co-ordinator I met was so helpful, after showing me around the hospital we all went and sat in the canteen for about an hour discussing all things transplant, she answered a lot of my questions and put me at ease. I feel I am making the right decision for me and my future going to Harefield!

I'm off to clinic tomorrow where I will be telling my consultant that I am definitely ready for my referral to be sent off, once Harefield receive it they will either contact me if there are any concerns (for example my low weight, however they said they accept people on the transplant list with lower bmi's if they have put a lot of effort in, or worked hard to get to where they are) So I may be okay and then I will get an appointment for my pre-assessment which is a 1 day appointment, lots and lots of tests in the morning, then a meeting with the Doctor in the afternoon to discuss where to go from there - if they believe I am a good candidate for transplant I will be invited to attend a 2-day assessment which is even more tests, lots of important chats and then I would find out whether I would be listed for transplant or not.

So very nervous, but also kind of exciting times ahead.

One of my lovely CF friends, Sophie, had a double-lung transplant 2 weeks ago and is still in Harefield, I went to say hello but bless her she was sound asleep :) but it was nice to see her and also to know that she is doing well in her recovery! So I wish her the best of luck to keep up the amazing work and hopefully I'll bump into her at Harefield one day!

I also did some work with the Live Life Then Give Life charity today which meant I got to meet the wonderful Emily, who was so lovely, Emily is almost 5 years post-transplant who also has CF - we are sort of allowed to mix as she no longer has CF, but because I can make her unwell we kept our distance :) But it was great to meet her and see how well she is doing!

So had a good few days, once clinic is over tomorrow I can have a rest day on Thursday before Josh and I head off to Blackpool for our anniversary. On Friday we are travelling to Blackpool with a stop off at TGI Fridays for lots of calorific delicious food.. We are then going to watch Ipswich V Blackpool on Saturday and going to the pleasure beach Sunday (weather-depending) if it is a horrible day we will go shopping at the Trafford centre in Manchester instead! So I'm going to be one exhausted girl next week but I will hopefully enjoy myself and the suffering will be worth it, lol! Of course I will be taking my wheelchair and oxygen, I'm not going to wear myself out as that would be rather silly! Haha.

Thanks for reading!
xxx

Thursday, 25 August 2011

Bad News, Then Some Better News!

I apologise for the lack of updates, I haven't really felt like blogging and some things had been playing on my mind a lot and was unsure how to put it into words...

It started with the day I left hospital, when my doctor came in to tell me I was okay to go and finish my IV's at home she then rained on my happy-going-home-parade with some not such good news - 
I'll cut it short, they said they don't think I will get my weight up in time, with transplant there is only a short space of time in which to get on the list, when you are classed as 'too ill' for transplant, you cannot be listed. They said judging by my x-ray this admission compared to my last one in May there was significant difference in my lungs, basically meaning they had got worse in a very short space of time and the fact my weight has remained stable and not really increased much lately is suggesting I could be out of luck. I'm allergic to the best feed calorie-wise, I'm allergic to almost all of the calorific supplements and have very limited options for weight gain, there are things I can have and am having, but the best things aren't available for me unfortunately :(

So I'm in a bit of a difficult situation at the moment regarding the weight, but of course I am still trying very hard to eat as much as humanly possible, consume the extra calories from the supplements I can have and just hoping that someone throws me a lifeline soon and that my weight magically increases by the last 7 pounds that are required! 

It's difficult knowing my time is running out, but as always, a happy positive mind is always needed in situations like this. I could of course decide to give up, but that is not me and never will be, I am determined even if I'm unable to get on the list I will continue working hard to maintain my health and increase my weight, because anything is better than nothing.

Now onto the better news, I have managed to secure myself a referral (finally) so a letter will be sent off to Harefield and I will be able to attend a transplant assessment, my thoughts were - even though my weight is too low to be listed at the moment, at least we can tick all the other boxes - I could have some underlying problem and be refused for transplant anyway, so at least I will be wiser as to what is completely required of me to get on the list, if I'm lucky enough to have that chance.

So as always I like to finish on a positive note, there hasn't been too much to smile about lately but I still am :) I didn't make it to V festival as I was too unwell, but I did manage to attend the poker finals which was fun! I went for a nice meal last night and went to see some family tonight! 
CF, transplant or my weight will never get me down, regardless of what curve balls are thrown at me and what hideous obstacles are planted in my way, I always try my best to keep a smile on my face and overcome those hurdles in ridiculously high heels of course ;)!

Thanks for reading :)
xxx

Friday, 12 August 2011

I'm Back With An Update!!

Well, I couldn't stay out of hospital too long! I've been in 5 times already this year, prior to going downhill, I'd usually stay in 1/2 times maximum, so we are already at 5 hospital stays in 8 months!! 

I had a very bad night about a week ago, I spent the whole day and night coughing up pure blood, had oxygen levels of around 80% whilst on 2/3L of oxygen, I hate to think what they would have been had I not been on oxygen! I was very breathless, to the point that even trying to speak was exhausting, I felt completely clogged up as if there was literally no air in my lungs, it was very very difficult and at times I wasn't sure if I'd make it through the days, so I gave in and called the hospital and they arranged an appointment for me, from which I was given a bed and here I am!

I've been on IV's now since Thursday afternoon and I'm not feeling better yet but I will hopefully feel the benefits soon. I'm also having extra calorie supplements, a 300 calorie drink and 3 shots of something called Calogen down my peg tube which gives me an extra 800 calories a day, so with my feed that's a total of 2100 just from supplements, because on top of that I am eating a lot too, the weight should go up now we are adding in all those extra calories!!


Anyway that is a quick update on me, It's been very difficult and I'm thankful for all the supportive messages I have received, it certainly has cheered me up and brightened up what has been a very tough time!! 

I am going home Saturday morning because I have a few things to attend this weekend which I did not want to miss, then I'll be returning back to hospital on Monday. I'm glad my team have given me permission to carry on living and attend these things even whilst very unwell. I like to keep going and sitting in hospital for 2 weeks on end drives me crazy, however, the rest was very much needed and eases the pressure of trying to struggle doing things at home :)

I'm hoping that my next blog will be from a slightly healthier Kerry!
Thank you for reading.
xxx

Friday, 29 July 2011

Some of my recent thoughts..

Did you know, the average human being breathes between 18,000 and 30,000 times a day..

Now how many of those do you cherish? Everyone says every breath is precious, but would you really treasure something you do that many times a day and something your body automatically does without thought?
What if you had to fight for each of those little breaths?
Do you think they'd become a little more precious if you knew you might only have a certain amount left in your body??

I don't know about you, but I do.

I haven't wrote a blog lately because I'm struggling. Each breath is becoming more and more difficult and I am having to think about breathing, it's not an automatic thing anymore. I laid in the bath last night, trying to take deep breaths and I couldn't, I just had to gasp, gasp, fight, fight and fight some more.
Suddenly that thing you automatically do upto 30,000 times a day, seems a little more significant and a little less of an unconscious act..


So that is where I am right now.
That is why sometimes when people wonder why I've said "I don't feel well today" yet there I am, make up on, smile on my face, even laughing - I'd rather look well on the outside to cover up the path of destruction my body is currently on - because what is better to me, a comment or a sneer about 'looking well' or being told I look awful?? :).. I know it's certainly not the latter!


It's very difficult to try and explain exactly what it's like living with an invisible illness, but it's even more difficult trying to live your life with a body that is dying.
I still have a mind that wants to be like every other 20 year old girl, I have a mind that wants to be a fantastic fiancee, the perfect daughter, grandaughter, cousin, niece, friend. I have a mind that is not ready to slow down, a mind not ready to give up yet.
It's a very difficult process...
Particularly, when everything inside you is saying no, but you persist on saying yes.

What comes first nowadays? Health or life? It's a fine balance trying to keep both sides happy. A lot of negotiation, a lot of let-down and disappointment.
I wonder if on occasions I really should admit myself into hospital when I know I should or if it is important for me to attend whatever is planned and carry on living while I still have the ability to.

The health-side is dramatically and very rapidly taking over the life-side, I preferred to keep them apart because it didn't seem possible living in a world where I can keep both sides happy.
I'm always cancelling life things because of health and cancelling health things because of life...


I've been doing a lot of thinking lately, I've also been doing a lot of sleeping and of course trying to live a 'normal' life! Oh and the odd moan here and there, woe is me... Self-pity hah, oiiiii I'm allowed the odd day!!

Anyway, sincere apologies for the serious lack of blogging. I will, I'm sure, find something exciting and thrilling to blog about very soon!

I did have 3 of my very lovely friends round this evening which was great!! Laughter is the best medicine :)!
Live, love, laugh.
xxx

Saturday, 23 July 2011

I Will Be Back...

Thought I better do a quick message for my lovely loyal blog readers regarding my absence!...

I'm not feeling well at the moment, not well at all :( and I'm spending a lot of time asleep/moaning about feeling ill - lol!
I'm aware of the fact I haven't blogged since before my holiday, so when I finally feel up to it, it will be a big one.. Stuff about my wonderful holiday, my clinic appointment on Wednesday, my Gt Nanny's funeral on Tuesday and general other life-stuff :)

I apologise for not keeping you all up to date, if I don't feel well enough to be on the computer/facebook 24 hours a day, you know something is up!

All positive, get well vibes are much appreciated at the moment.
Thank you.
xxx

Sunday, 10 July 2011

The Abseil

Today was the day we'd been waiting for, well some were dreading it, others were excited!! The abseil!!!..


The 14 abseilers (who deserve all the glory) were as follows:
Matthew Brett - Step-Dad
Kimberley Thorpe - Sister
Tony Nelli - Father-in-law (to be)
Megan Nelli - Sister-in-law (to be)
Georgina Keinzley - Megan's Friend
Ashton Gibbs - Cousin
Chris Leek - Ashton's Boyfriend
Justin Dedman - Uncle
Steven Brett - Step-Uncle
Adam Chisnall - Second Cousin
Adam Wedlow - Second Cousins Fiance
Dean Knights - Friend
April Scott - Friend
Joe Louth - Friend



Just to give you an idea of the height!



The amount of people who came along to watch and show their support was amazing. A few of the people doing the abseil were very frightened, but they all managed it and I'm very proud of each and every one of them.
A special little mention for Megan Nelli, who broke her big toe on Thursday and has been on crutches, still had the determination to do it so I'm so so proud of her, despite the pain she was clearly in during and after the abseil, she still did it!! Love you lots Meg :).

The sun was shining all day and we have raised just over £2800, we really want to reach our £3000 target, so I know I'm starting to sound like an annoying broken record, but every contribution counts. So, if you can dig deep and can donate, it would mean a lot to me and all of my wonderful family and friends who helped make this day brilliant and raised so much money for people like me and the thousands of others who suffer daily with Cystic Fibrosis.

The CF trust is not funded by the government so everything is donation based, there is a potential cure in something called 'gene therapy' but right now, there is not enough money to begin proper tests on CF patients. This could be the cure we have all been waiting for, when I was a baby, the doctors told Mum they thought a cure would be found by the time I was a teenager, needless to say, it was not found. So literally every little donation is helping to bring that possibility ever closer...
Kerry Thorpe's Just Giving Page

I've had a fantastic day, the Evening Star newspaper were there and took some photos and I gave a quick interview, so that will be in the paper tomorrow night! :)

Thanks again and I'll be back after my holiday!
xxx

Saturday, 9 July 2011

The Abseil Is Here!!! &An Update!

I haven't felt like I've had much to blog about lately, just been plodding along, eating as much as humanly possible (and more,) sleeping, nothing too exciting..

On Wednesday I went into town with Mum for the first time in a long while. My wheelchair was at Josh's and it was a quick last minute decision. We are going to Butlins on Monday (Josh and I, Mum and Matt, my sister Kim and her fiance Kieren) and I realised I didn't have a swimming costume because I don't fancy wearing a bikini with my ugly tube, not that I'll be doing much swimming but I may sit in the pool/go on the slides, so I found one I liked in Topshop so we intended to go there, which meant we could park disabled quite close and I wouldn't have to walk too far, however Topshop didn't have any costumes at all! So we then went for a bit of an unexpected walk and unfortunately my eyes were stronger than my lungs, meaning I couldn't resist all the pretttty clooootthhhesss. Lol! I went in a few shops, bought a playsuit which is so comfy I feel like I'm in my pyjamas ;) Before ending up in New Look, where I tried on more clothes and found a swimming costume I liked and didn't feel like too much of a granny in...
Got it in a size 8 too, I've been a size 4-6 for a while, so to finally fit a size 8 was great and showed me all that eating was starting to pay off! :)

By the time I got back to the car, despite the fact we walked at like 0.000000001mph, I was exhausted. It has taught me a lesson, I'm now not well enough to 'get up and go' I need to plan these things better, it was spontaneous and got me out the house for a bit, but it ruined me.

My pleurisy has flared up again which is causing me a lot of pain, unfortunately pain-relief barely touches the pain at the moment and I'm struggling quite a bit. Also my kidney stones obviously decided to go for a bit of a walk last night and the pain was horrific, Josh and I were out for a meal at the time and I suddenly felt like I was being stabbed and it was a bizarre kind of pain which I can only put down to that. We had to abandon our meal before I burst into tears in the middle of a slightly posh restaurant :P


But anyway, pain will never stop me. I'm go go go.
Really looking forward to our holiday!! Got some new clothes and have been trying to preserve my energy so I can really enjoy myself, there is a silent disco on Thursday in the over 18s club at Butlins, so we are going to that which will be fun. I intend to drink a lot ;) go kart a lot, sit on the funfair all day like a big kid and then eat the entire restaurant including tables/chairs/people and just make the most of it with my wonderful family and Fiance!!! :D

My next update will probably be after the holiday, but there is one more thing I must say..
Sunday is the day............. The abseil has finally arrived! 

14 of my brave family and friends will be climbing the 150ft maternity block at Ipswich hospital, abseiling for Cystic Fibrosis, helping to change the lives of people like myself. If I wasn't so ill, the adrenaline junkie in me would be up there with them, but I will be cheering them all on from the safety of the ground! 
So far we've raised around £2700 not including the money from 2 people, so I think we may be over the £3000 mark which is fantastic and I'm so proud they are doing this for CF! :)
If you want to sponser them, or if you just want to give some money to the CF Trust you can do it through this link...

Even if you only sponser a £1, any contribution, however big or small, will help change the lives of people like me..!

Thank you and I'll speak to you all again soon :)
xxx

Saturday, 2 July 2011

Hospital stay, weight gain, stable liver... Good news :D

I went in hospital on Monday and then came home Thursday, nice quick stay, seemed to go pretty fast as I knew I was going on Thursday, when you know the end is in sight, it does make it a lot more tolerable.

I was admitted to try a soya-based feed as they are pretty sure I'm allergic to milk protein, as opposed to lactose intolerant. Also I was going to have a 3 day glucose monitor on which checks your blood sugar every 3 minutes, this would give them an idea of whether my sugars go high/low during the day or night and particularly, what they do when on feed as it has no sugar, but is very high in carbohydrates. I was also having my feeding tube changed, having the stitches taken out and going for an ultrasound scan of my liver/kidney/spleen to see if my liver disease has got any worse/better etc. Finally, I was being started on a tablet which has a known side effect of weight gain and an increase in appetite...

So firstly, the feed - seemed to go very well, I tolerated 750mls for two nights, then tonight I'm going to try 1000mls which unfortunately, is not as calorific as the first feed, 1000mls = 1000 calories, so to get upto 2000 calories of the feed I'll be needed 2Litres, which seems pretty scary but hopefully I'll get there eventually! I'm now on Nutrison Soya which seems to be working much better for me, which means no horrific side effects and I can actually keep the feed down and still want to eat at the same time, perfect!

Secondly, the glucose tests. I won't know the results as they took it off just before I went home, but they will upload the results onto the computer and put them into a graph, so we can see exactly the pattern my sugars have, if they have one at all! I'm going to clinic after my family holiday to Butlins, where I will also be testing a new nebuliser which is only given to people who are very sick as it is super expensive!

I had my tube change appointment cancelled because of a traffic jam, meaning Josh took 5 and a half hours to get to Papworth, which meant my hospital transport was also caught up. It was changed to Thursday.
I had my stitches out first, which had been in a little bit longer than they should so they didn't come out as easy as they could, but still not really painful. The tube change was so simple, literally deflate the little balloon inside, pull it out, clean the area, put new tube in! Pain-free, easy peasy, done :)
I had my scan done and the good news was that there was no significant changes compared to my last few scans, my liver has not got worse and is remaining stable, which is good :) they've said at the moment there is no need to change anything and they are happy to continue having yearly check ups! The not so good news, was that they found a couple of small kidney stones, which I'm gutted about because I'm worried these could be the sort of things which might mean I can't have a transplant, I'm working so hard focusing on my weight and diabetes, then something annoying like my kidney could mess is all up :( Hopefully, they will pass quickly and by the time transplant comes, it will be a thing of the past :)...

Finally and probably most important - this tablet. It is called Olanzapine and is a tablet used in mental-health situations, particularly for Schizophrenia and Bipolar disorder. I have always suffered with depression and Mum is convinced I have bipolar (thanks Mum) so this tablet which I've been prescribed because it has a very common side effect of gaining 10 pounds in 10 weeks, may help in more ways than one.
It is also a calming/sleeping tablet and I find myself feeling very tired after taking it which is good because my sleeping is terrible at the moment.
I also feel absolutely STARVING all of the time, lately I haven't fancied food much at all because my chest is playing up and when you have no energy and feel rubbish, food is the last thing on your mind. But anyway to show you what it has done I'll tell you my 'meals' that I ate yesterday..
I wasn't allowed to eat until after I'd had my peg change and scan, so I wasn't eating until 12pm.
I had.. Lunch - A burger king, cheeseburger, chips, a coke, Jaffa cakes, 2 packs of crisps.
Afternoon - Mcdonalds burger, strawberry milkshake.
Dinner - Spaghetti bologanise.
Evening - Oxtail soup.
Night - Feed.

&Various other snacks and stuff - In total I had 3500 calories!

Then today after a 3 course meal out with friends, I weighed 6 stone 4.2 which is the highest weight I've been for a very very long time. (I also feel very hungry now, after a 3 course meal! It's madness, lol).. I'm now about to attempty 1000mls of feed, which will hopefully boost the weight! I'm so happy right now, my weight has made me feel fantastic. I noticed today my jeans actually felt tight, my cheeks look a bit chubbier and I don't have to try and make them look bigger with make up, they are naturally like that! Everything just is getting better. Except my chest, which is getting significantly worse day-by-day.

The worst bit about the hospital stay was my lung function, I had 4 attempts at checking it. The first 2 tries, I got 17% 3rd time 18% but I was determined to get over 20 so I had a 10 minute break, relaxed my lungs a bit, then blew the hardest I have in my entire life and managed to get 22% which is equal to my worst lung function ever, but much better than 17% ..the main problem was that after that attempt my oxygen levels dropped to 80% because I really over-worked myself and almost passed out, oops! :P

As I always say, it's not all doom and gloom. Lungs may be rubbish and I have some annoying little stones taking up residence in my kidney, but my weight is better, my liver is stable, my appetite is through the roof, I feel good about myself at the moment and life is (almost) okay :)

Thank you for reading!
xxx

Sunday, 26 June 2011

My 'Celeb Gossip Style' Article

Kerry was quick to dispell rumours today that she is falling off the wagon. Last night Kerry was spotted drinking shots and triple spirits, before being snapped by the paparazzi, laying 'gracefully' on the floor of her home. Kerry, 20, who has recently come into the public eye, said - "If I do only have under a year left to live, I want to enjoy it. I'd rather be out partying and enjoying myself than sitting in everyday moaning and feeling sorry for myself!"
Kerry, was also reported to have had a similar experience last weekend after another night of heavy drinking, our sources tell us she tripped over a dustbin in her home twice, then proceded to speak to the bin, telling it she would stay there until the bin moved.
Kerry, who suffers from end-stage Cystic Fibrosis said - "I feel a bit more comfortable wearing my oxygen out in public now, which enables me to still have a little dance when out, rather than sitting there bored. I've always enjoyed a party and would hate my condition to stop me enjoying myself and doing what I love!"

Kerry after last nights antics.

When asked about the photo, Kerry said - "It's madness you can't have any privacy nowadays, not at the party, or in my own home! In regards to that photo, I'd just walked from the car, in my stupidly high heels and I was absolutely exhausted! A bed of nails would have probably seemed comfortable."
It is unknown yet as to whether Kerry has gone off the rails and become another victim of the young celebrity lifestyle, or if she really is just 'living her life.'
One thing is for sure, she knows how to party.


Hahaaa. I hope you have enjoyed my little pretend 'celeb gossip' type article ;) Clearly I was very bored! Here are a few photos from the ball last night, which raised £440 for CF!

The wonderful Jo and I
Lol

Me, Mum, Matt and a CF balloon

Us 3 again
Josh and I :)

Nanny, Grandad and I

CF balloon and my oxygen, lol
Breatheee...
Hayley with the oxygen

Grandad with oxygen

Matt with oxygen

Mum with oxygen
Me during Jo's speech, in which I was mentioned :)

Danceeee

Our "V" poses

More dancing, lol

So there you are :) Into Papworth tomorrow if there is a bed. Wish me luck :(
xxx

Thursday, 23 June 2011

Kerry, Do You Want To Give Up?

I had clinic yesterday and to be fair, there wasn't much good news.

My lung function was down and my weight was the same!

So, we've agreed the feeds aren't working for me, I have some form of allergy to milk or something in milk and it's not something that can be easily tested for, we've now ruled out lactose intolerance, so it could be milk protein. Anyway, the feed I was having, despite being the highest calorie one, is not for me :(

I've agreed to go back into Papworth on Monday for 3 days, to test a new feed, probably a soya based feed rather than milk based, which should help, if not we'll try another until we get it right. They wanted me to go in hospital for a couple of weeks and I said no, I hate being in anyway I don't see the need because I'm not having IV's, I don't eat hospital food so the 'feed regime' wouldn't be a true reflection of my life, so they've decided I'll go in for 3 days, then go home with the feed and test it out in my normal daily life, with normal eating habits and sleeping patterns and see how it goes. Then have a week or so out, then back for 3 days etc.

I'm really glad we've come to this arrangement, 3 days will be fine for me if I can see an end to the stay, 2 weeks is a long time and when you are trying to focus on going home, it can seem a lifetime away. 3 days will suit me much better.

I'll also be having a 3-day glucose monitor, which is a small needle inserted under the skin around the stomach area, attached to a monitor which checks your blood sugar levels every 3 minutes. This is so they can keep an eye on my sugars and get an idea of what happens throughout the day/night, without me having to prick my finger 100 times a day lol!


It wasn't all rainbows and butterflies, it was pretty frustrating. The weight thing annoyed me. The fact my lung function is down after IV's again annoyed me. The fact I've got to go back in hospital, annoyed me.

But the worst bit, perhaps the most reality-type-smack-in-the-fact bit, was that my consultant asked me if I was sure I wanted to go through with it all, because it's so much work and with how unwell I am, they aren't sure if it might all be too much for me - so was I sure, or did I want to 'give up now' and they will focus on just keeping me well and preparing me basically, for death..
No matter how annoying, frustrating and difficult this is, I will never give up. I am not a quitter and I don't want to die, simple as that!!

So I shall leave it there - I'm Still positive. Still focused. Still determined. Still very hopeful that all the hard work will, eventually, pay off.
&Then I don't even mind if I don't get a transplant, I'll just be so pleased and proud of myself that against all odds, I was on the list and I'd made the (in their words) 'not impossible but very unlikely' actually happen :)

If you are reading this and are faced with difficult things in your life, hard decisions, tough times, situations that seem like they will never sort themselves out. I have one message for you... :)

(Photo taken form weheartit.com)

Thank you.
xxx

Sunday, 19 June 2011

The Press Ball, Generosity and Bloggers Block!

Sorry I haven't blogged for a while, I'd open up the page, think about writing and then my mind would go blank. I think I've had, what I can only describe as - 'bloggers block' :).
I suppose I could have bored you to death with the ins and outs of my, not so, exciting life, or I could just wait for something to happen that was worth writing about.
As you can see, I chose the latter option and here we are :)...


Friday night was the Evening Star press ball, which was a very glamourous, black-tie event. It was raising money for the CF Trust along with a few other small charities.
I was considered the 'special guest' or the 'guest of honour.' To begin with we went into a room with various people, including the mayor of Ipswich, who we met straight away and had a photograph with, we were greeted with champagne and it was very odd because people were saying they were honoured to be meeting me, it was all very surreal!!!

The event itself took place in a hall which had been very elegantly decorated to the theme of 'Atlantis,' think lots of greens/blues, colourful drapes and fish haha! I guess it actually sounds pretty weird, but I can assure you it looked amazing, almost fantasy-like!!

We were seated on a table with the girl who did my Evening Star article, a few of her collegues and a couple of business men. It was a 4-course meal, for starters was salmon (which I don't eat, lol - very fussy I am!) So Josh had 2 helping of starters. Main course was guinea fowl, which at first I genuinely believed was guinea pig, I'm also gullable lol, which was very tasty and I really enjoyed it, I was glad I braved eating it! Dessert was a trio of desserts, lemon syllabub, chocolate mousse and banoffee pie, I only like the lemon so did a few swaps and had a trio of lemon syllabubs, lol! Then followed my a nice cup of tea :)

There was plenty of wine and champagne flowing all evening, when I got home I realised I was actually quite drunk because I fell over a bin. Twice...

There was an auction, a raffle and then a Queen tribute act, who appeared on The One Show about a week ago.

Firstly there was a game of heads or tails - where you had to stand up and put your hands on your head, or your bum and if you won you stayed standing with a chance of winning a brand new TV. Anyway, I was rubbish, Josh, however, did well and got into the top 8 or so and was called up onto stage, unfortunately he didn't win, but a lady who was my 'hospital teacher' when I was at Ipswich won it and she immedietly said on the microphone she wanted to give the TV to me... I started crying because I thought it was a lovely thing to do and a very very kind gesture :):):) She is a wonderful woman!

If I thought it was going to end there, I was very wrong! Firstly, during the raffle I was given a prize of a weekend break in a cottage/barn type thing!

Then, during the auction, an anonymous person, bid £3000 on a diamond bracelet and gave it to me, also he bid on a box at show - gave it to me and a family photo shoot, which he also gave it to me.
I was in floods of tears, I was so humbled and it showed me that there are people in this world who are so kind, so thoughtful and amazingly generous enough to do something like that to help bring a smile to my face and some enjoyment during these difficult times. I obviously know who the person was, but they wanted to remain anonymous, I cannot thank this person enough and I am a very lucky (and happy) girl at the moment! :)

I was congratulated many times on my work recently raising awareness by various people, including our MP, a guy from the TV, the Mayor and many other wonderful people. I met some people from the CF Trust which was cool and I felt the evening really was the cherry on the top of the hard work I've been putting in just lately, in my campaigning.

The ball has currently estimated that on the night, we raised £16,000 but the total amount will be announced tomorrow!

So the night was fantastic even though I had to use my oxygen in public, even though I couldn't dance all night like I usually would, even though the reason I was there is because of how unwell I am and even though I do still have CF and still need a transplant - I was there, I danced (a bit) I cried, I laughed, I ate, I drunk, I smiled and I really enjoyed myself.. Despite all the rubbish that is going on inside my body, with all the difficulties and tough times I have ahead, an evening like that really made me feel brilliant and allowed me to (almost) forget what stage I'm at in my life right now.

Here is a picture of Josh and I, just as we walked in :)..


Thank you for reading.

If you wish to read the article write-up on the evening star website, regarding the press ball, here is the link.

xx