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!

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.

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!

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!


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.

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.

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 :)

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 :)