A Bit Of An Update!

I have been in Papworth for 5 days today, I had my feeding tube fitted on Thursday.

At 9am Thursday I was collected and wheeled away on a bed into an ambulance. Then travelled 30 or so minutes to Addenbrookes hospital with one of the CF nurses. I went straight to endoscopy and waited for around an hour, I had been nil-by-mouth since midnight, so I was very hungry! The surgeon then came out and got me, I was very very nervous!

Firstly they had a look at my belly, I have had a feeding tube in before so had a small hole but unfortunately due to where it was positioned, they were unable to use it. So I have now got another hole about 4cm underneath the last one! They said after transplant, they would sort out plastic surgery to have a skin graft, meaning there would be no more holes :)! Anyway, because I already had a PICC line in, I did not have to have a cannula in my hand, which I was very glad about - so far so good!

They then gave me sedation and I remember thinking it wasn't working, until it hit me, everything went blurry and I couldn't see, it was awesome haha! They then put a camera down my throat, I remember feeling it and freaking out because I couldn't breathe, but once I had swallowed and calmed down I realised I was okay and that is the last thing I remember, until I awoke in recovery! The procedure actually only took 10 minutes, but I was asleep for around half an hour. Firstly they injected local anesthetic around the stomach area, they made a small insertion in my stomach, pushed the feeding tube in, then inflated a small ballon on the inside to hold it in place, they then put in a couple of stitches in which secured my stomach wall to my skin so there would be no complications afterwards - and it was done! Easy peasy and I don't remember any of it :)

I am in quite a bit of pain at the moment but it is better than it was. I'm on IV Paracetamol, Ibuprofen and Tramadol frequently, which is helping to control the pain. It is very sore when I cough and also when I move around, especially when I'm reaching for things. It also is quite sore to stand up straight, but I am told I have to stand up or it's no good, so despite the pain, I'm standing tall, haha!

I started my first feed on Thursday night, I had 250mls which is 500 calories, last night I had 375mls - 750 calories, tonight 500mls - 1000 calories. You get the picture! It's called Nutrison Concentrated, which is 2 calories for every ml, eventually I will be on 1000mls a night, giving me an extra 2000 calories! This will take the pressure of having to eat lots of food, when unwell, sometimes food is the last thing you want to think about. So everything else I eat will be a bonus. Luckily, I'm not feeling full from the feed so I'm still eating normally and still pigging out as always! :)

I will have the stitches in for a month, then they will change my tube from this...

To this...

:). So one month of having a long uncomfortable wormy tube, then I can have a nice neat little button tube! 

My weight gain starts now!!!

Now to finish, here are a few pictures of life in hospital, lol:

Feed

My Hospital Room

My Big TV! &Get Well Cards :)

Me After My Op!

Feed Set Up

The View Out My Window.

Meeee :)

Josh will be here soon, yay!

x

Operation Date, IV's and A Very Bad Reaction!

I started IV's yesterday afternoon, after two very busy days between hospitals.

The first started at Addenbrookes Tuesday afternoon, I had an appointment with the surgeon who would be fitting my feeding tube. I explained to him I had a few things on in June, so I'd want to either have it after, or before where I'd have enough time to recover. He then said he could do the 26th May, which is Thursday and also my Mum's birthday! But I had to take that date, so that means my poor Mummy has got to spend her birthday between Papworth and Addenbrookes, seeing her daughter have an operation! :(

So the feeding tube is something I was so reluctant to do, I am dreading it and I know I will hate it. But as I've said before, if I want to be alive and have a body to hate, I need to have the tube - otherwise, I will never get on the transplant list and I will die! So what choice do I have really?!

I then was back at Addenbrookes Wednesday morning to have my PICC line inserted, it went in first time with no problems :) apart from it being very sore and achey once the local anesthetic wore off. It is still hurting quite a bit now and is pretty bruised, but it will hopefully calm down a bit over the next few days.

Then after I had my first dose at Papworth I was sent home on IV's - Meropenem and Ciprofloxacin. A lot of drugs require blood levels checked every few days to make sure you are not getting too much/not enough of the drugs, the two drugs I've been prescribed don't need levels checked for around a week, meaning I don't have to go back to Papworth until day 7 and day 14 of IV's. However, as I'm having my feeding tube next week I will be going into Papworth to stay in on Tuesday, so the levels isn't too much of a problem.

I have had both of these drugs before but you can always become allergic to something. The last time I had Mereopenem was in January, this is a drug with a common side effect of sickness, so I was prescribed anti-sickness, however, last time this was not enough to cope with the amount of times I was sick, so it was stopped and replaced by another drug - Ceftazidime. I did mention to my consultant yesterday, when they told me I would be on Meropenem again and they gave me anti-sickness and told me to see how it goes.

Well, how it went was very very badly!...

Last night, about half an hour after the Meropenem second dose, I projectile vomited, I then went very dizzy, developed a high temperature, yet felt absolutely freezing, my whole body was shaking and eventually I collapsed on the floor. Afterwards, my body didn't feel like it was my own, I was shaking and had no control over my legs, I tried to walk but couldn't, I felt like jelly! I don't remember going to bed, but when I woke up today I felt the same, still feeling very sick and I couldn't walk, I tried to get out of bed to go to the toilet and fell on the floor :( 

I'm okay now as I haven't had any of that drug since last night, I still have a bit of a headache and haven't dared eat a proper meal yet, I've just been eating small and often, but I'm much better than I was last night/this morning. It's scary how something that is supposed to make you feel better, can make you feel so bad. I feel a little bit of an 'I told you so' but I understand why they gave me the drug in the first place and if it does work, it works well, so it is a shame I have developed this kind of reaction to it.

I have some pictures of me setting up the evil Meropenem! As you'll be able to see, home IV's are not an easy option at all, especially when you are so weak and exhuasted as I am (due to infection) when you have to do a lot of work to give yourself the drugs, it takes it out of you. The Meropenem was supposed to be 3 times a day, each dose 6 hours apart and the Cipro 2 times a day, 12 hours apart.

Good job I don't have a fear of needles, lol!

For those in the know, a PICC line is different to a port and doesn't require you to be completely sterile, all the syringes/needles etc. are sterile and I have to be careful, making sure everything is clean, however, there is no need for gloves etc.
Also, Papworth don't use the same pre-made IV's that some other hospitals do (including Ipswich Hospital!) so I have to draw them all up myself -

So as you can see, IV's are not a cure. They don't always do their job, but when they do work, they help to ease the struggle - I become a little less breathless, I won't cough so much and will have a bit more energy. 

The grass is always greener on the other side, unfortunately standing in the way is a huge mountain that you have to climb, but once you get over that, things will be a little easier - well, until next time anyway.

xxx

I'm Not Afraid Of Death.

Abseil.
Before I begin, I'd like to inform you all of a charity event we are organising!! :) On the 10th of July, some of my family and friends are taking part in an abseil down Ipswich Hospital for Cystic Fibrosis, the hospital is pretty high so for those with a fear of heights, it will be quite a challenge! I'm so disappointed I can't do it, but with my health as it is, I can't exactly abseil with my oxygen lol.. So I'm sorting out the organising and cheering everyone on from the safety of the floor!! 
I've added a 'justgiving' page on the left where you can donate online ->
If you could, please donate some money to CF, to sponser my wonderful family and friends who are doing this! It's quick, easy and could help towards changing the lives of people, like me, living with Cystic Fibrosis.
Thankyou.
x

Now, on to the blog..
Something I've been thinking about, which has kind of been relevant lately, is death. I know it's not a very happy subject and it's not something people want to think/talk about, but it is something I am faced with daily and I'd like to share my views on it.

The first thing I want to point out is that I'm not scared of dying!
What I am scared of, is what will happen afterwards - I don't want my family to be suffering, I'm frightened of how they will take it, I don't want Josh to move on quickly, marry someone else and completely forget about me, I don't want to be forgotten full stop.

When you go for a transplant assessment they usually talk about writing a will and perhaps thinking about your funeral - I know I would want my funeral to be a celebration of my life, as opposed to mourning my death. I'd want it to be a happy occasion where people can have closure on the fact I am no longer suffering. I know I definitely want to be cremated because the thought of being freezing cold underground certainly doesn't appeal to me ;) I always prefer being nice and warm!
I have also been thinking about where I'd like my ashes scattered and something that has always been an idea to me, is to have half of them in England and the other half in America - because if I don't get my transplant and don't get the opportunity to go, at least I would have visited America somehow!! I know my Mum wouldn't travel to America but Josh could and it would mean he is be able to go to Vegas like we had always planned, I'd just be with him in spirit instead!

What you need to understand, from my point of view, is that for 20 years I have faced the prospect of not living a long life, I always knew the life expectancy was in the 30's and I knew transplant is usually only a last resort option.
I think that is why it doesn't frighten me, perhaps if I had never known how CF worked, I would be a lot more scared, but as it's nothing new to me, I can look at death in a completely different light. Of course it is something I have never experienced before, so the 'unknown' is always a scary thought! But I'm not going to spend however long I have left worrying about what it will be like, as they always say life is all about living in the moment and to be fair, with having CF, sometimes living in the moment isn't easy but I try my damn best and I can honestly say I don't regret anything, the people I've met, the places I've been, the things I've done, it has all made me who I am.
Every breath to me, however hard it may be, is precious and is something I will never take for granted.

On a lighter note - I do have a bit of a dark sense of humour and often make jokes regarding life and death, for example, Mum has asked me before what would I do if my hair was grey (because I love my blonde hair) I then respond with, I don't know, not many people will see it in a box...!
People often wonder how I could joke about things like that, but it's just normal to me!! I honestly am so happy with what I have done in my life and I'm not going to lie, I do have so much more life left in me, I know it! I'm positive, but also very realistic, I know my chances of getting a transplant are only 50% and then surviving 1-2 years afterwards isn't a definite, then 5-10 years is even less of a chance etc but if I spent my life dwelling on the statistics and what might or might not happen, I would not be living at all!

CF takes a lot of things away from me, such as my independance, but it will never take away my determination and spirit! I can guarentee you that up until my final breath, I will be fighting with every single inch of my mind and body.
I will not go down without a fight and if I don't win the battle, well at least I won't have to worry about that grey hair will I ;)!

Thank you for reading and thank you for all your support! :)
&If you haven't already signed up to be a donor, please do it now. It's so easy and something amazing could come out of a really horrible situation, I know death isn't something anybody wants to think about but it's something that I can't help but face, unless I receive a transplant - Becoming a donor genuinely saves lives. Sign The Donor Register!!!!
xxx

Meet My Support System

All my blogs lately have been based on myself, in which I have explained briefly how certain people in my life help me to cope etc.
I thought I'd dedicate this blog post to them, with photos and a bit more detail.
So, I'd like you to meet 'my support system.'


First and foremost, my amazing Mum, Jacqui.

My Mum has been my rock thoughout my whole life, when I'm feeling down, she's there picking me up, when I'm on a high, she's right by my side smiling with me.
My Mum never lets me think negative, she is very head-strong and has passed this onto me. We have the odd silly petty argument, but within minutes it's over and we are back to normal, for a Mother and Daughter we have a fantastic relationship, I've always looked upto my Mum, I know having a child who is ill can't be an easy task!
I'm also glad that my Mum has allowed me to make my own mistakes, so I can learn from them and make my own decisions, knowing that she will be there behind me every step of the way, picking up the pieces when things go wrong.
I know I am 20 years old and I don't need my parents anymore, I have so much to learn on my own but I will always need their support and guidance and I know it will 100% always be there, however old I am.
I think my Mum is fantastic and I am so proud to be her daughter.
I love you Mum.
xxx

Secondly, we have my fiance, Josh.

Again, getting into a serious relationship with somebody who is ill isn't easy and I am so thankful everyday that Josh didn't run in the opposite direction when he found out I was ill, as many boys have done in the past. He only then went and made me his fiancee(!) his dedication to me is a breath of fresh air.
Josh is very similar to my Mum in the way they keep me positive, if I'm having a down day he will let me have a cry with a much needed cuddle, but he thens make sure I keep my eyes on my goals and remain strong. I don't know how he does it, he rarely shows weakness and it makes me feel better. I'd hate to be surrounded by negativity and people crying all the time because I'm ill.
We both know that our time together could be limited and we make the most of every second in each others company. I know that we ultimately want to get married and whether it happens before or after transplant, it is something we are working towards.
Josh is my soulmate, my best friend, my shoulder to cry on and the absolute love of my life.
I love you Josh.
xxx

Then we have my Dad, Gary.

My Dad is an inspiration. When he was 30 he suffered a stroke and I honestly thought I was going to lose him - I knew I needed my Dad around, he still had to buy me my first legal drink, walk me down the aisle, meet my boyfriends and continue to protect me. So the day he came home from hospital was one of the best moments because I knew I still had him in my life.
Now let me tell you a bit about my Dad - he thinks he is the funniest man on the planet(!) He is constantly cracking jokes, always coming up with silly little names for me like Perriwinkle, he is always out clubbing because he loves his drink and wants to be the centre of attention at parties, but would I have him any other way? Not a chance. I don't think he will ever grow up, but if he did, he wouldn't be the man I know and love :).
Dad makes me realise that life is so much fun, you can never take yourself too seriously and laughter is genuinely the best medicine.
I love you Daddy.
xxx

Not forgetting my Step-Dad, Matt.

When Matt first came into my life, I found it difficult to accept him, I'm not going to lie, we had some rough patches but I honestly think it's brought us closer today. The day I was a bridesmaid for Mum and Matts wedding was one of my proudest moments, it made me realise how far we had come from the early days!
If whoever is reading this know Matt, you will realise how hard I had to work to find a photo where his eyes were actually open, lol!!
Matt and I have a lot of silly banter between us, I always refer to him as 'younger' than me because he was young when he met my Mum. For example, if we were speaking about when I was a high school, I would say - oh Matt, you weren't even born!!
Matt is a really lovely, funny, caring Step-Dad. I am so pleased he has made my Mum so happy, we have all accepted Matt as one of our own and I'd be devestated now if he wasn't in my life.
I love you Matt.
xxx


My beautiful Sister, Kim.

Firstly I'm going to start by posting something Kim wrote on her facebook about me the other day.


"‎Kerry Alex Thorpe. My beautiful sister, sometimes i find it hard to know what to say to you after reading your blogs and things, i want to stay positive for you but the truth is i am really struggeling. I wish i was strong like you and positive! To be honest, you are my inspritation, when i wake up and feel like i dont want to get out of bed to go work i think of you and i want to slap myself as i know that working to you is like a dream. Im sitting here trying to think of what to say but i just cant get the words out. I hope you know that although i find it hard to speak about it to you, i think about you every minute of the day. Since your story was in the paper, at work i look at your story between every call as i keep it up in the backround and seeing your smily face makes everything worth while. I dont care if i never have any money or my own house or anything else... my only dream is that one day i can ring you and say "kerry lets go to town do some shopping then party tonight." and not having to worry about anything, just being able to say that and hearing your cheery voice say "ok see u tomorrow" will be worth so much more than anything else in the world. I wonder everyday why it had to be you that was ill, why not me or anyone else, your so pretty and caring you deserve the best health in the world. I was so proud when people saw you in the paper and said "she is such a fighter" because you really are and i know that you will never give up on anyone or anything. I just want you to know that if you did ever want to talk i am here for you and always will be. And that i love you more than anything in the world and admire everything you do. I know you will get what you're destined (new lungs) and the day you do will be without fail the happiest day of my life. I know i always say it but i love u so much, from you little sister xx"

I don't really have to say anything else - Kim is amazing, we have got so close over the last few years and I wouldn't change her for the world. I also can't wait until the day we can go out and party and enjoy ourselves like sisters should!
Kim has been doing loads for organ donation lately and has been encouraging people to become donors, she has made me so proud!
I love you Kim.
xxx

My Nanny and Grandad, Margaret and Len.

I absolutely love them to pieces. They are always there for a chat and constantly call/text me to make sure I am okay. They both come up to visit me loads when I'm in Papworth and we always go and have a 'nice' meal at the canteen!
I feel I am so close to my Nanny and Grandad and I wouldn't have it any other way! Grandad is hilarious, he calls me Keg-head-thing-init, he uses stupid words all the time and finds it hilarious! My Nanny is amazing, she has rheumatoid arthritis but doesn't let it get her down, she is always happy and smiling, trying to look after other people!
They make me such a proud Grandaughter!!
I love you Nanny and Grandad.
xxx

& My Auntie Hayley.

Hayley again, is fantastic! We always have such a laugh when we are together and she always makes sure I am okay. When I'm not well, she lets me know she is thinking about me. When I'm in Papworth, she comes to visit (even though I know it's only so she can steal my sweet stash!!! Hahaaa) Before our engagment party, Hayley wrote me and Josh a little poem each..

Kerry:

Petite, Blonde and beautiful
You’re always the perfect display
But fragile, weak and failing lungs
I think about you everyday

I know those lungs will soon be yours
So your life can start anew
Tonight I’ll be bursting through the doors

To celebrate with you.

Josh:

Isn’t love a funny thing,
And what it makes you do,
When you gave Kerry that ring
You made her dreams come true

I know you were put on the earth

To protect our special girl
You care for her like no one can
You’re an oyster with a pearl

We thought they were fantastic, thoughtful and they brought a smile (and a tear) to my face!
I love you Hayley!
xxx


So I hope you've enjoyed reading.
These are the people that have kept me going all this time, friends will come and go but family is forever.
I know I am so lucky to have such fantastic people in my life.

Huge love, fiances, family, and support!
:)xxx

Raising Money and Mix-ups.

Since my article in the newspaper last week, things have gone pretty mental.

Firstly, the Evening Star newspaper have chosen CF Trust as their charity for the press ball in June this year. Last year they raised £13,000 and are hoping to do the same again for CF! The editor has also invited me to the event, which is fantastic. So plenty of money will hopefully be raised!

Secondly, Ipswich Pub Poker, which is a non-profit organisation, supports local charities each season. Every player from each game gives £1 to charity and £4 towards prize money, last season the pub I play at (which is one of about 20 pubs) raised £218 for charity over the 14 weeks and the finals day raised around £2000.
As I said they only support local charities so wanted this seasons charity to be a CF unit in Ipswich, however, there isn't one in Ipswich, so they have chosen Papworths CF ward, so all the money will go directly to people affected by CF, hopefully this will be able to help make hospital stays a little more tolerable for those of us who attend Papworth and the money will be used appropriately!

So that is a lot of money being raised as a result of my article! :)

I was also in the paper again tonight as a follow up to my last story, basically it's about me talking about the reaction I've had and how many people have signed the donor register because of my article.
You can read tonights article here: http://www.eveningstar.co.uk/news/ipswich_kerry_s_story_inspires_surge_in_donors_1_883671

The Evening Star have also been in contact with the CF trust and the Ipswich Support Group, where they are going to do a big piece on the importance of being a donor and campaigning for more people to sign the register, quotes from my blog and things I've said will be used in the article and hopefully will help make a difference!

I'm already amazed at what has happened so far and it's also giving me something to focus on, I know I'm very unwell and there isn't much that can be done to save me apart from a transplant, but if I can help to try and raise awareness of the importance of organ donation, so that nobody would face the uncertainty I do, or by raising money for CF, I could help towards a cure being found, then in the future lung transplants wouldn't even be necessary and nobody would have to suffer the way I and others in my situation, currently do.

I'm so happy that I decided to make my blog public, it was honestly one of the best decisions I've ever made. I feel like I have people there with me every single step of the way, people are wishing and urging me to get the weight on so I can be listed and hopefully, receive my transplant! I've never felt so determined in my life, I have so much motivation thanks to all the support I have gained :)


In other news, I'm not in hospital and I haven't got an appointment for my feeding tube. There was a mix-up at Papworth and they forgot to book me in for a PICC line (so I can have IV's) and haven't made any arrangements regarding having the tube.
They rung this morning to say they have arranged for me to have my PICC next Wednesday and we have sorted an appointment with Addenbrookes on the 17th May for a consulation regarding the tube.

Things never run smoothly but I will now sit here for another week where my life slips away a tiny bit more. I am now at the point where getting up off the sofa is completely exhausting. IV's aren't a cure, but they sometimes increase my lung function and make me cough less, so I don't feel so ill.
Unfortunately, I have to put up with feeling this bad for another week at least. I'm not going to moan and complain about feeling ill because people don't want to read about negativity and I hate feeling like my blog posts are full of misery.

I will continue keeping this big smile on my face, even though it's a million miles away from what is really going on inside!!

In the mean time, I'm looking into starting a Psychology course at the Open University to occupy my boredom and keep me from going insane and sitting in all day and night being constantly reminded of how unwell I am!

Thank you for reading!
x