Day to Day.

I find it really hard telling people that I can't do something because I'm not well, I find myself believing that they are saying 'oh what a surprise, she's ill again' or I'm afraid people will think 'but she's always ill, surely it's no different.'

The thing is, with CF some days I'm not as bad but then other days I'm very unwell. I never really know how I'm going to wake up each day, sometimes how I am during the night gives a clue, but other times I just suddenly wake up feeling like death. 

Today, I coughed up blood, even though it's happened a few times recently, it never gets any easier. It's like a crackle in your lungs that doesn't go away, then a gurgle in your throat and you know exactly what is coming, next thing you know it's in your mouth and it's disgusting. Sometimes it's a very small amount but today it was quite a lot. Afterwards I felt really light-headed and sick so I had to relax with my oxygen on for a while, just waiting for it all to calm down. 

I'm still not feeling great now, I've been freezing today, I've even put the heating on, snuggled up in my hoodie and was STILL cold. I was sick this evening and I'm just generally feeling rubbish. 

Yesterday, I wouldn't have known I was going to feel like this today, however, I did have a very bad night - I didn't get to sleep until 8am due to being breathless and coughing too much to lay down, if I move around when I'm coughing that much, everything gets juggled around and I'm then sick. So I just have to sit it out and hope it passes, but last night that took a stupidly long time. I even missed the wedding! I'd planned to get up and watch it, but the fact I'd literally just fallen asleep after all that drama I decided to sleep it out. 

Hooray for Sky + lol! :)

Anyway, the point I'm making here is, yes I am 'always ill,' but I'm not always this ill. Today, I felt horrific. Tomorrow, I may have a better day, I will only find out in the morning! 

Fingers crossed it's a good day.

Finally I'd like to end by saying a massive thank you. The reaction I have had from my article in the paper has been amazing, so many people have told me that I helped them make the important decision of becoming an organ donor, others have let me know that I have their support, I've had loads of messages wishing me well and people telling me that I'm in their thoughts.

If you haven't yet read it, here is the link: Evening Star Article

People have been calling me an inspiration which is humbling and I'm genuinely honoured to hear that, it makes me think that although I am going through this, I'm never alone.

It's also been a good way of finding out the people that are 'important.' I had people who don't even know me taking time out of their day to write me letters/send texts/emails/messages of support, people I hadn't spoken to in forever, distant family and old friends - I don't want to single people out so I'll leave it at that, but it's times like this when you realise who does actually deserve to be in your life and those who don't. 

So the last few days have been full of serious highs and horrible lows, but that is just life! 

It's an emotional rollercoaster but wouldn't life be boring if everything was easy?!

As a bit of a poker fanatic I shall leave with this:

Life isn't about the cards you are dealt, it's about learning how to play them - either you're a winner, or you're a fantastic bluffer ;)

x x

Reality (Updated)

For those of you who are visiting my blog for the first time, here is a post I wrote a few weeks ago explaining exactly what my life is like nowadays, thank you.

My cystic fibrosis has got to the point where the only option I have to survive, is a risky double-lung transplant. My life is full of medications, treatments, hospitalisations, IV antibiotics, but despite my best efforts, these things can no longer keep me 'stable' and my health is declining at a rapid rate. This time last year, I'd never have imagined I'd be attached to an oxygen tube almost 24 hours a day, I'd have to face using a wheelchair to go out in public and I definitely wouldn't have imagined I'd be facing a life or death decision, which is whether to have a transplant or not.

When you are assessed and listed for transplant, it's because you aren't expected to live much more than an average of two years. That would make me 22 years old. I was told in October, when I was 19, that I needed to be listed for transplant ASAP or I would not be alive much longer. But the problem I face is, I can't even be assessed for transplant until I gain 2 stone and have a healthy BMI, I have already gained 1 stone and I'm working ridiculously hard to get the last stone on. It has been so difficult to gain the weight, so I'm having to have a feeding tube fitted to give me an extra 2000 calories overnight. 

I need to gain the weight because my body has to be as strong as possible to survive such a dangerous operation, but I also need to be weak and ill enough to get on the transplant list, the line is so fine between being too sick and not sick enough.

The last few nights have been extremely difficult. I've sat up until 4-5am because the longer I could put off going to bed, the better. I sit in bed, attached to oxygen, waiting until my body is literally, physically and mentally exhausted, that I have no choice but to fall asleep. I can't lay down because I cough non-stop which makes me breathless and usually results in me being sick. I also can't sleep propped up on pillows because any bit of pressure on my chest makes me unable to breathe, (I also dread when I have to put a bra on because it's like a tight band of pressure around my lungs.) So I sit and wait, sometimes for a very long time, sometimes I have no sleep at all, I'm writing this blog at 4.30am just waiting for my body to give in and let me sleep. I also have to be carried up to bed every night because climbing the stairs is so exhausting, as is getting ready for bed, getting into bed and eventually laying down to sleep. I also can't wash my own hair because it is tiring, I have no choice but to have baths, because standing in the shower trying to wash my hair would be exhausting.

My life has become all about help and relying on other people to do things for me, or to help me do things that most people take for granted, sometimes I wish I could just jump up off the sofa, make myself dinner, quickly nip upstairs to fetch something, have a shower, leave the house without worry, walk or even run, take my puppy for a walk, go out to a party and dance all night long without worrying about coughing, or being out of breath, I know if I go out and have a good time, I will be so ill for days because recovering takes a long time.

I'd love to not have to think about every little thing, I have to think about breathing and if the thing I need to do is important enough, for me to suffer for it.

I wish I could have one day where I could just do normal things and only have to rely on myself.

I've never shared my blog before because I didn't want to burden people with how sick I am, some people don't know there is anything wrong with me, because I have an invisible illness. Others, would never believe just how unwell I have got in a short space of time. Some know exactly what I go through, those closest to me like the amazing family and fiance I am so lucky to have, the people who spend their lives looking after me.

But this is the reality of my life nowadays, this is what it's like living with end-stage cystic fibrosis. This is a term we use when there aren't any other options left and without the kindness of a stranger choosing to donate their organs, we will not survive. I am not alone in this struggle, I have many friends with CF, some are alive, some are dead, some died without receiving their transplant, others got the gift of life, survived and are now living their lives the way those of us needing, or waiting for new lungs, can currently only dream of.

I try to have a positive outlook and mantain a big huge smile on my face, because everyday that I wake up, I'm so thankful that I am still alive.

They say you never know how strong you are, until being strong is your only choice. If I sat and complained every day, or had a negative outlook and didn't even think about what could be, I wouldn't be living, I would be dying.

I know I will get the weight on, I will get on the list, I will get new lungs, I will survive and I won't have to dream or wish anymore, because those dreams will become my reality.

Thank you for reading.

xxx

Catch Up.

I am so fed up with being out of breath all. the. damn. time!!!

I've been thinking a lot about 'understanding CF.' The fact I am still learning things now proves that you never know the full ins and outs of everything. Sometimes I expect people to understand what I go through, but unless those people have lived with CF, they could never fully understand. Likewise, myself, I could never understand what it's like to go on a diet, or to battle other various diseases, I could sympathise and imagine what they must go through, but never truly know what it's like!

That's kind of how I decided on my blog name 'Come walk in my shoes' I wanted my blog to be a way of people understanding what it is like living with CF, in the most honest way I could explain it! As they say, you can't judge someone until you have walked a mile in their shoes. You can read online until the cows come home about CF but hearing it from someone who actually has CF would probably be more reputable than someone who has never lived with this disease.

I think blogging is a really good thing, when I was younger and trying to live as a teenager with CF, it was difficult. We aren't allowed to mix with each other due to cross infection, if we met up with another person with CF we could potentially pass bugs onto each other and cause damage!
It's weird to say but thanks to the internet I no longer feel alone, as I said, when I was 14/15 I knew a few people from clinic with CF but not many, whereas the internet has opened me up to the whole CF community. People from all over the world! It has made me realise there are so many other people out there just like me, who are going through exactly the same problems that I do.
A lot of people say the internet is a bad thing and it has ruined childhood nowadays blah blah, but without the internet I wouldn't know so many wonderful, inspiring, people. I wouldn't be able to seek advice from people who've experienced these things, I wouldn't have people to chat to who are also going through transplant, or those who received their transplants! The best bit for me is knowing that there are people out there who can 100% completely understand, people I could even go as far as calling my friends :).


Anyway, on to how I'm actually feeling at the moment. The truth is, I'm not great. I'm really struggling, I'm just doing a pretty good job at hiding it as always.
I noticed how bad I was actually feeling when I got up earlier to walk into the kitchen, I was so out of breath from the tiny walk that I had to try and catch my breath, by the time I got back to the comfort of my sofa, I was so tired and exhausted I wanted to cry, but even if I started crying I'd have got even more out of breath! Lol!!! It feels like even getting dressed is too tiring now, so spending a lot of time in my pyjamas. I'm starting to get really fed up and can't wait to hurry up and actually get listed for transplant, so at least I could see a potential light at the end of the tunnel. At the moment, I'm in limbo, stuck in the middle of nowhere, there's no chance that lungs are coming my way yet, so I just have to carry on living like this.

Last night was my local teams derby match, against our rivals so being a season ticket holder (although I haven't made it to many games due to how unwell I've been lately) I couldn't miss the most anticipated game of the season. We park disabled so it's not too far away from the ground, but it's still a walk nonetheless, then when I got into the ground I had to climb stairs to get to my seat. By the time I'd finally sat down I was exhausted, the match was a disaster and we lost 5-1 which is an absolute embarrassment. I wish I'd stayed at home. After the game, we then walked back to the car, but I had to get Josh to give me a piggy-back :( This then set up for a rubbish night, as I'd wasted the only little bit of energy I have nowadays at the game. I did however, get a Bovril out of it, so as they say, every cloud has a silver lining :)

I had my chat with the Evening Star on Monday, it went really well and think it should be in the paper either Sat/Monday, obviously I'll post the link to the website for those who want to read it online! I'm hoping I came across well, I tend to talk a bit too much so not sure how it will be yet! I guess despite my rubbish lungs, I can talk for England!!! Haha :D

I have definitely qualified for the poker finals on the 1st May, so looking forward to that, then on the 3rd May (if there is a bed available) I will begin my 2-3 weeks of HELL in Papworth hospital - so you can guarantee there will be plenty of blogging updates from me whilst in prison. I hate hate hate going into hospital as you can probably tell!!! Lol :(

Guess I'm just rambling now. So sincere apologies if I have just bored or wasted some precious minutes of your life, haha!!!!
Thanks for reading, I hope this finds you well :)
xxx

Engagement Party.

Our engagement party was Friday and I've got to say it was honestly one of the best nights of my life. Adrenaline must have been pumping through me all night because I managed to survive the party, haha! I danced loads, chatted to almost everyone and drunk a little too much - so many people kept buying me shots! Also, dangerous Jagerbombs along with typical alcopops ( had no hangover though!! )

It was so exciting, loads of people that hadn't seen each other in a while were all catching up, my parents are divorced but luckily they get on, so both families also had a chance to catch up. We had around 170 people there and it was amazing. 

The buffet is the thing most people seemed to have enjoyed! We had a mixture of hot and cold foods, korma, chilli and pasta, with rice and chips, then all the 'normal' buffet type foods. We also had a beautiful cake made for us by Josh's auntie Carol, we had no idea what it would look like but told them our colour scheme was pink and silver (to match my dress!) then when we saw it, we were genuinely in love with it. There is a photo below, it was also a really yummy cake!! We also had the hall decorated to match our colour scheme - pretty engagement banners, pink and silver helium balloons, pink table cloths, pink napkins and little silver hearts scattered across the tables. 

Everyone seemed to enjoy themselves with lots of dancing, chatting, drinking and general partying. Josh and I are so lucky to know so many wonderful people, from our family members, to friends, to work mates, to Josh's golfing buddies + their families and not forgetting some of our friends who we play poker with - all those lovely people helped to make the night absolutely unforgettable. 

Here are just a few photos that we have from the night, if you have any could you upload them onto facebook or email them to me!!

Josh and I cutting our cake.

Josh, Mum and I.

Josh, Bev (Josh's Mum) and I.

My sister Kim, Mum, my Stepdad Matt and I.

My Dad, Josh and I.

Our FANTASTIC cake, made specially for us by Josh's auntie Carol!

Me and some of my lovely friends!

Our DJ went round taking photos of everyone all night and then ran a slideshow of the photos on a big screen, people could then buy them if they wanted. We have got a CD with all the photos on but it has not arrived yet, when it does we will have plenty of lovely photos of all of our guests!!

A massive thank you to everyone who came and made the night so perfect, we also had some amazingly generous people who kindly donated money towards our wedding fund and we are so thankful to each and every one of them and we will be sending out special thank you cards :)!

On the wedding front, we are now looking at potential dates and it all suddenly seems so real!! We were supposed to be going to a wedding fayre today at one of the places we are interested in getting married at, but unfortunately I enjoyed myself a bit too much on Friday and am now feeling very unwell, my body is stiff, my tonsils and glands are swollen, I'm coughing much more than usual and generally feeling very exhausted.

It will take me a few days to recover, but I might not recover at all if this cold-type-thing goes to my chest, it could then lead to a flare up in the form of a bad chest infection. Luckily, if this is the case, I am already booked to go into hospital on the 3rd May after the poker finals, haha priorities and that ;)!

Again, a huge thank you to everyone who came and I hope you enjoyed the night as much as we did!
xxxx

The Other Side Of CF.

I have added a page at the top of my blog, which is titled my 'CF Daily Routine.' It's just a guide as to what living with CF is like, all the medications and treatments I have to do daily, just to try and stay alive!

Cystic Fibrosis is not the only problem I have, although most of the others are related and it's because of CF that I have them.
I was going to post a link to something like wikipedia, but after reading the CF page myself, I think they should make a 'thickipedia' using much more normal words, lol! Seriously, the amount of long-winded, medical terms they use on that website, I understand some of them because of being around hospitals and doctors using those terms all the time, but some of the words baffled me and I've dealt with this rubbish for 20 years, lol!!
So here is the other side to CF written by yours truly.. :)

One of the biggest problems I have is something called 'CF Related Diabetes' which I was diagnosed with 9 years ago. CF related Diabetes is not the same as normal type 1 or type 2 diabetes, it is actually a combination of both. I use insulin to control my diabetes and a 'diet restriction' is not recommended for me, due to the high calorie/fat intake I need, it is more important to control the diabetes with extra insulin than to stop eating certain foods.
When I get a chest-infection my sugars become higher so I have to adapt my insulin intake with how well, or unwell, I am. Also when my sugars aren't controlled, I lose weight.
I also sometimes need steroids to reduce inflammation in the airways, making breathing easier and to help with infections, however, steroids make my sugars sky-high so this was something I couldn't have until recently. For these reasons I've worked really hard to get my sugars under control and it's now no longer a factor stopping me from transplant. They had said if my sugars were constantly high I would not be able to be listed, mainly because after transplant you are on steroids permanently, so my sugars would need to be controlled enough to deal with the constant steroids.

CF also affects the digestive system, I'm lucky that I've never had any bowel blockages or anything, but this can occur in people with CF. I have to take enzymes with almost every item of food I have, to help break down the fats in foods because my own body doesn't do this, without these tablets, the fats would pass straight through me and would mean I might as well have not eaten because it does me no good! If I forget to take the tablets with even something such as a bag of crisps I get severe belly pains which are sometimes so bad I'm sick. So, these tablets are so important! I can take upto 30 a day, 3 with each meal, then 1-2 with snacks, so depending on how much I eat through the day, depends how many tablets I need!

Recently I was also told I have the beginnings of liver disease. I have an enlarged liver, so have to have routine ultrasound scans to keep an eye on things. Bile which is released from the liver to help digestion can block the bile ducts, which lead to liver damage, this can over time lead to scarring. The liver fails to rid the blood of toxins and doesn't make the necessary proteins which are responsible for things like blood clotting. This is one of the biggest signs that I have liver disease, my blood clotting levels are quite low so I am having extra vitamin K to help with this. Liver disease is the 3rd most common cause of death in CF.

I also have very weak bones (basically, osteoporosis) meaning I have to have bone-strengthening drips, which cause severe pain in my bones that can last up to 3/4 days. This is something I have to have every 3 months, if my bones are not strong enough, I might not be considered a good candidate for transplant.

I also suffer with horrible heartburn, due to acid reflux and have to take tablets everyday to ease this.

Another thing is that some of us can't have children. 97% of men with CF are infertile and due to things such as malnutrition, some women with CF can also be affected.
I, myself have no idea whether I am infertile but I have been told that if I was to get pregnant, my chances of being alive by the time the baby was born wouldn't be too high! Also after transplant my team have said there are quite a lot of complications, so my choices are either surrogacy or adoption.
Luckily, I've never been one of those girls who ever saw myself as a parent, but I can't help but think 'what if.' The love I have for my doggies is so strong I think I'd actually be a really good Mum, but obviously until after transplant I have no plans on having children, for my own health :)!
I wouldn't want to risk not having a transplant and leaving behind a baby without a Mummy.

So there you go, CF and the rest of my problems try to break me down and I admit, sometimes I let it. I'm not afraid to cry and I'm certainly not afraid to admit I need help, I've struggled in the past with my emotions, there were times when I was so angry at life and many times I wondered "why me?" I've suffered with depression due to the way my life was changing because of my health, I barely had a social life before I was with Josh, because I was usually too exhausted to do anything. I'd always imagined that I would be at university, studying to have a successful career, but instead I am stuck at home everyday, living off very little money - a million miles from where I would have liked to be.
But I know that life throws many curve balls and there are always hurdles in the way of your dreams, but these are the things that make us stronger and when you do eventually achieve those dreams, they will be all the sweeter, mainly because you've worked so hard to get there.
This is how I am viewing transplant, I've worked hard to gain weight, sort out my sugars, strengthen my bones, keep my liver disease at bay and I've worked hard to try and get my lung function up and I'm going to continue working really hard to get on the list, then it will be a matter of waiting for that phone call, the wait could be very long, or it could be very short, but I know that when(!) I do get the transplant, I will be so proud of myself for overcoming the odds and all the hard work will be totally worth it.

:)

Thanks for reading!
x

Donating Your Organs and Myths!

Firstly I want to say I have been asked today by one of my lovely friends how she can get information about donating her organs. Which I am sososo pleased about because I wanted my blog to help raise awareness for CF, organ donation and to try and get as many people as possible to actually sign the donor register!

I have added a link at the side of my blog -->
where you can click to sign the register, but it's on the website so if you need any information just have a look around the site and if you decide donating your organs is something you want to do, then go back to the form. It literally takes a minute to sign up but it could end up being one of the most important minutes, because YOU could save lives.
One of the most important things you must do, is tell your family/friends your wishes to donate because if you did pass away, your family would be asked if you want your organs donated, if they were not aware that it was something you wished to do they could be faced with a tough decision. So please make sure if you do want to be a donor, the important people know that it's something you want :)!


There are a few myths and general assumptions about donating which I will hopefully, try, to clear up.

A lot of people think they cannot donate their organs.
False - I can confirm this because I am an organ donor, it would be completely selfish of me to want other people to give their organs, when I myself wouldn't.
I have diabetes so can't donate my pancreas, liver disease which rules out my liver and obviously I can't donate my lungs - but I have a perfectly working heart, my kidneys haven't been affected so they too could be donated, along with tissue and my small bowel.
There is nothing stopping almost anybody donating their organs.

Another myth that people think is true, is that if you are a registered donor you will not be saved by doctors should you get near to death. This is absolutely false and complete rubbish, doctors will do absolutely everything they can to save a life before thinking about if they were donors or not, they would rather save somebodys life than have a death on their conscience. Obviously if there is absolutely nothing they can do to save them, despite their best efforts, then they would find out if that person had wanted their organs donated.

Another one is that people are afraid they won't actually be dead when they donate their organs. Again, false! They actually carry out MORE tests to determine death, than they would on someone not wanting to donate, so you never know if you donate and you aren't actually dead, in thinking about others it could help you to be saved!

Finally, people believe it is against religion and although people are entitled to their own beliefs and I have to respect what those people choose to believe. But organ donation is supported by Christianity, Catholicism, Islam and most branches of Judaism. In fact I have found some quotes on http://www.uktransplant.org.uk/ to back this up:

"Heal the sick…freely ye have received, freely give."

Matthew chapter 10:8

"In eternity we will neither have nor need our earthly bodies: former things will pass away, all things will be made new."

Revelation chapter 21: 4,5

And a quote from one of the Popes (apologies, I am not religious) and the Archbishop of York.

"I hope that Christian people will seriously and positively consider organ donation. The ready willingness to donate an organ is a clear sign of that sacrificial self-giving for others patterned by Jesus Christ."

David Ebor, Archbishop of York

"Every organ transplant has its source in a decision of great ethical value… Here lies the nobility of a gesture which is a genuine act of love. There is a need to instil in people's hearts a genuine and deep love that can find expression in the decision to become an organ donor."

His Holiness Pope John Paul II

&To end on a more funny note.. I was saying to my Mum yesterday, I reckon if you turn up at the 'pearly gates' and you still have all your organs intact inside your body, you will be refused entry - God doesn't want any selfish people up there! Hahaaa ;)!

So please, think about it, talk about it and most importantly DO something about it.
Sign the register, you could give the gift of life, which is the greatest gift of all.

Thanks for reading.
x

Clinic

I had clinic at Papworth today. It wasn't all good news, but I feel like we've moved forward a step or two.

Firstly, I had my lung function (lung capacity) and weight checked. My weight was up by 0.4kilos, which is not much but the most important thing is that it hadn't dropped and with how unwell I've been, to not only stay stable, but a small gain is a really good thing. Unfortunately, it means I'm still not at a good enough weight to be referred for transplant yet.
My lung function was down by 10% since mid February and was just 22% which is the lowest lung function I've ever had, this means I'm now functioning every day on less than a quarter of a 'normal' person's lung capacity. This just ties in with how bad I've been feeling, sometimes the stats and figures don't match up with how you're feeling, but today it did.
I find sometimes I play down how bad I am feeling to my team because I'm scared they will want me to stay in hospital, you see Papworth is 1 hour and a half away from my family and friends, so it's not so easy for people to come and visit, so it can be a really lonely experience and when I'm not feeling well, sometimes all I want is support and company, but being so far away, it's not always an option. So I try my hardest to avoid being admitted but sometimes I don't have much choice, luckily my team were understanding that we have important things coming up so I asked if I can hold off going in until the beginning of May, so I'm booked to go in for 2 weeks of IV antibiotics from the 3rd May.

Towards the end of the IV's I will have my feeding tube fitted but because I am so unwell, a general anesthetic is not safe for me, so I will be sedated. The feeding tube will be fitted at Addenbrookes hospital, then I'll transfer back to Papworth where they will closely monitor my pain, test out different feeds to find one that is suitable for me, keep an eye on my blood sugars because if my sugars are high I will not gain weight. Then finally when they are happy for me to go home (which should be around 4-5 days after the operation) I'll be able to leave and they said in an ideal world, if all the factors work such as my blood sugar control, I should be gaining a couple of KG's a month.

I only need to gain 6kilos until I have a healthy BMI, so I will work my damn hardest to make sure it is a smooth, swift weight gain because as we realised today, my need to be on the transplant list is getting greater every day, if my weight had been okay I would have been referred for transplant in October, which could have meant I was listed at the beginning of this year.
Every week that goes by, is another week where I am still stuck in limbo. I know being on the list will be a horrible, difficult time, but at least there is still that glimmer of hope that the call could come at any minute but at the moment I'm at the point where I need to be on the list at least and I can't, I wish I could see the light at the end of the tunnel in the form of new lungs. That is why I'm going to work so hard to gain the weight I need because it's getting scary how much my lung function is dropping.

So yes, as I said to start with, my lung function wasn't great and it was a bit of a slap in the face from reality, but at least we now have an idea of what/when it could happen. If all goes to plan I could be referred for transplant in perhaps two months, then if they say I am a good candidate for lung transplant, I have to attend a 3-day assessment full of all kinds of tests and chats, then by the end of the week you will know if and when you will be listed.

My road to transplant has been a really difficult, stressful, rollercoaster ride which has by no means been easy. At times it has knocked me down and I wanted to give up, I had so many thoughts going on inside my head about whether I wanted to go through with transplant to begin with, when they said I needed to gain two stone it seemed like an almost impossible target, but I'm now over half-way there and further than I could have ever imagined. Which has made me even more determined to get there, I feel stronger because of it and if I'm able to meet the target and achieve what they told me was "not impossible, but very unlikely" then I seriously can achieve anything!!
I finally feel there is a really good chance I will actually get on the list and I'm hoping when I do finally get assessed that will all work out well and I can start looking forward to the possibility of life after transplant.
It's all swings and roundabouts as they say :)!

Thank you for reading.
x

Thank You

I am absolutely overwhelmed! The support I have received has been incredible, I posted my blog onto facebook Saturday afternoon, the link was shared by 10 people and my blog has been viewed 1500 times since then!
I was so nervous when I decided to share the post with everyone, I wasn't sure what kind of reaction I would have, as I said in the last post, I didn't want people to worry about me or to feel sorry for me, but the reaction has been so positive and I'm so happy about it!
My post touched a lot of people and I guess, in a way that is exactly what I wanted to do! I didn't want to upset anyone but I wanted people to hear exactly how I feel about life and transplant, in the most honest way I could.

I've had loads of wonderful facebook messages/comments. Some from people I haven't seen since school, some who don't even know me just letting me know I am in their thoughts, also messages from childhood friends and people who knew I was ill, but not to this extent.
Every single message was encouraging and just reminded me of why I want to go through with transplant. I'm a very lucky girl, I already have an amazing support system, my parents and my step-dad, my fiance, my sister, my grandparents, aunties, uncles, cousins, friends and now so many more people. I know I want to have a transplant, obviously for myself and my own future, but also because I have so much to live for and for all those people who love me, if I refused transplant, I wouldn't just be giving up my own life, I would be giving up on the people who care about me.

I have also been approached by the local media, they would like to share my story and if they could help in anyway to raise awareness for CF and organ donation. So this is something I am willing to do, if I can help to even just get a handful of people sign the donor register, I'll feel like I've achieved something!

Again, thank you all for your support and will keep you updated with more blogs in the near future!
x

Reality

My cystic fibrosis has got to the point where the only option I have to survive, is a risky double-lung transplant. My life is full of medications, treatments, hospitalisations, IV antibiotics, but despite my best efforts, these things can no longer keep me 'stable' and my health is declining at a rapid rate. This time last year, I'd never have imagined I'd be attached to an oxygen tube almost 24 hours a day, I'd have to face using a wheelchair to go out in public and I definitely wouldn't have imagined I'd be facing a life or death decision, which is whether to have a transplant or not.

When you are assessed and listed for transplant, it's because you aren't expected to live much more than an average of two years. That would make me 22 years old. I was told in October, when I was 19, that I needed to be listed for transplant ASAP or I would not be alive much longer. But the problem I face is, I can't even be assessed for transplant until I gain 2 stone and have a healthy BMI, I have already gained 1 stone and I'm working ridiculously hard to get the last stone on. It has been so difficult to gain the weight, so I'm having to have a feeding tube fitted to give me an extra 2000 calories overnight. 

I need to gain the weight because my body has to be as strong as possible to survive such a dangerous operation, but I also need to be weak and ill enough to get on the transplant list, the line is so fine between being too sick and not sick enough.

The last few nights have been extremely difficult. I've sat up until 4-5am because the longer I could put off going to bed, the better. I sit in bed, attached to oxygen, waiting until my body is literally, physically and mentally exhausted, that I have no choice but to fall asleep. I can't lay down because I cough non-stop which makes me breathless and usually results in me being sick. I also can't sleep propped up on pillows because any bit of pressure on my chest makes me unable to breathe, (I also dread when I have to put a bra on because it's like a tight band of pressure around my lungs.) So I sit and wait, sometimes for a very long time, sometimes I have no sleep at all, I'm writing this blog at 4.30am just waiting for my body to give in and let me sleep. I also have to be carried up to bed every night because climbing the stairs is so exhausting, as is getting ready for bed, getting into bed and eventually laying down to sleep. I also can't wash my own hair because it is tiring, I have no choice but to have baths, because standing in the shower trying to wash my hair would be exhausting.

My life has become all about help and relying on other people to do things for me, or to help me do things that most people take for granted, sometimes I wish I could just jump up off the sofa, make myself dinner, quickly nip upstairs to fetch something, have a shower, leave the house without worry, walk or even run, take my puppy for a walk, go out to a party and dance all night long without worrying about coughing, or being out of breath, I know if I go out and have a good time, I will be so ill for days because recovering takes a long time.
I'd love to not have to think about every little thing, I have to think about breathing and if the thing I need to do is important enough, for me to suffer for it.
I wish I could have one day where I could just do normal things and only have to rely on myself.

I've never shared my blog before because I didn't want to burden people with how sick I am, some people don't know there is anything wrong with me, because I have an invisible illness. Others, would never believe just how unwell I have got in a short space of time. Some know exactly what I go through, those closest to me like the amazing family and fiance I am so lucky to have, the people who spend their lives looking after me.

But this is the reality of my life nowadays, this is what it's like living with end-stage cystic fibrosis. This is a term we use when there aren't any other options left and without the kindness of a stranger choosing to donate their organs, we will not survive. I am not alone in this struggle, I have many friends with CF, some are alive, some are dead, some died without receiving their transplant, others got the gift of life, survived and are now living their lives the way those of us needing, or waiting for new lungs, can currently only dream of.

I try to have a positive outlook and mantain a big huge smile on my face, because everyday that I wake up, I'm so thankful that I am still alive.
They say you never know how strong you are, until being strong is your only choice. If I sat and complained every day, or had a negative outlook and didn't even think about what could be, I wouldn't be living, I would be dying.
I know I will get the weight on, I will get on the list, I will get new lungs, I will survive and I won't have to dream or wish anymore, because those dreams will become my reality.

Thank you for reading.
xxx