Florida - November 2015

On the run up to this holiday I was so nervous. I worried about every possible scenario! I worried about having an episode of sickness whilst over there and not eating. I worried about catching something on the plane there and feeling unwell whilst there. I worried about being fit enough to walk round all those parks and letting people down if I struggled. I worried about the flight.. what if I had a new found fear as it had been a fair few years since I had been on a plane!! I worried about hospital needing to contact me and being unable to. I worried about my chest being bad the week previous and having to cancel on my behalf last minute. I just worried about everything you could possibly think about worrying over for months and months.
Then the weekend before our holiday, I was taken into hospital with high potassium and dehydration and I was gutted! I thought my transplant team would never allow me to fly just 5 days later.. it was the day before when I got told it was ultimately my decision as they weren't saying no! 
The night before we caught the flight to America my dad hunted high and low for someone who would insure a girl who has CF, had a double lung transplant 10 months before and was discharged from a hospital admission just 6 days ago, who also had diabetes and so much medication!! 
Our last resort was to buy insurance for just over £2000 but thankfully for us, my cousin kristian had read online about someone else who was struggling for insurance till they found a company called "insurancewith.com"

I was fully insured for just over £100.. you know what this meant? 
I could go to FLORIDA!! 

The morning after I was thrilled with excitement and could not wait! 
I had an easy and fairly quick flight there and was so excited to get it all started. Go to all the parks, eat all the food, drink all the frozen slush's and just be away from hospitals and even home for a while. Something completely different!

I loved every single minute and have no idea what all the worrying was beforehand. I have never felt as good as I did whilst over there. I don't know if that was the weather, the stress free environment or just general buzz of a holiday but I felt incredible and didn't have one bad day whilst over there. 
I was literally devastated that we had to come back home. If I could have been left to live there I would have no questions about it.
It was just what was needed after a crazy year. 

Here are a few pictures!

A holiday only possible because of my donor and their family

Freddie Florida stylin'

Florida rainbow

Such a good holiday

Countdown had ended

Sleeping betty on the plane

Excited selfie

FaceTime with grandad, Alfie & Woody

Day at Mini Golf


Night at Universal Studios

Traditional Tourist

Dream Car/Van

Universal Studios

Pool Day

Lady of Leisure on a boat ride

Favourite Rollercoaster (cheetah-chase)

Loving the wave pool

Mini Golf Female Champion (Action Shot)
Me & my beach pal
An impressive photography shot by me

Papa & Sophie

Shaun & Me

My impressive photography


Night at a Piano Bar

Wheeler reservation

Seaworld Orlando Resort, Florida

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2016 personal goals and achievements


So 2016 is well under way.. very nearly February already!
I just wanted to write this post to go back to at the beginning of 2017 to see if i reached the goals i set myself and to hopefully be able to tick all the things off and set new goals this time next year.

This year i want to have got myself a job, i think i may have mentioned this before but i don't want to go to uni and spend years and years studying and stressing about something. I was given this second chance of life and i want to enjoy it and i know that i personally stress and worry far too much as it is without the added pressure of uni. I also have no main goal as far as careers go.
There is nothing i want to do more than writing and i know that i enjoy blabbering on with myself. I wouldn't want to pursue writing as a career if i had to be told what to write about. I know i would struggle to find the motivation to write to the best of my ability that way.
So i have wrote a jokey CV which i gave to my cousin to try and wing my way into getting a job with her future venture in the spring. (A CV that i just might post on here one day)
I have also wrote myself a genuine CV and have sent that out to some jobs i have applied for. They're mainly admin/reception jobs and the odd retail work. I've very little previous experience when it comes to working so i'm just hoping something will come along when the time is right. One thing is for sure with the rest of the goals i am setting myself this year i am going to be needing that money!

2016 is also the year i would like to venture out and gain a wider independence by renting a house or apartment and moving out of my little dads home.
That time has come, i just feel like i want to build on my independence and i want to start living that 'normal' life. I want to take the next step with shaun so that we can begin to build on our relationship more and have that time together.

I would like to find myself a hobby, this one isn't the most important as i think i am going to be busy this year but it would be lovely if i got myself a little hobby and stuck to it.. maybe just continuing to blog will do. Also remember to keep little keepsakes & things to stick in my 2 year post transplant scrapbook!!

So i will have the house and the job. Next thing i want to build on a little more is me.
I'm struggling a lot with having this new found independence. Its quite scary to go from being surrounded by people or someone all the time to not having to be surrounded by people because you're well enough to live your life as you. This has brought on anxiety which comes in waves and is reoccurring but i am learning ways to handle that and it has also brought in a lack of confidence in myself which i want to build back up.
I have never been a loud, life and soul of the party type of person but i have been someone to get involved and join in with the fun but i find myself still trying to get involved but very self conscious about doing so. I think the lack of confidence is probably part of the anxiety but them both combined is what i want to improve by the end of the year.
I think having a job will help with my confidence and i also think having that independence of getting my own place to live will also see a leap in the confidence within myself. I doubt myself too much and i worry far too much but as i keep repeating, it's something i am going to give my all in working on this year.

Another thing i want to do this year is actual pursue learning something new. I have always said i want to learn sign language and i have always started out and never completed it but this year is the year! I'd also love to do a first aid course as i think it's so important for everyone to know basic first aid in the off chance assistance is ever needed but i think i would also find it really interesting too!
These are two courses i will keeping a look out for to sign up and attend this year also.

I'd also love to improve myself by making little lifestyle changes this year.
One massive goal for me is to reach 9 stone. I haven't been this weight in a very long time and it's something that also affects my self confidence massively. I'm very aware that i am skinny, that my bones protrude and that my clothes always look baggy from my unproportional childlike frame. As a 22 year old woman, it's not how i would like to look. This year i have the honour of wearing two beautiful bridesmaid dresses alongside beautiful bridesmaids but i would feel so much better about it if by the time i get to wear those dresses and walk the aisle with the brides and fellow bridesmaids that my weight has increased and i look a healthier weight whilst wearing them.
So i have decided to put to use everything that is freely accessible to me and start feeding overnight again and on bad days (appetite/sickness wise) i will use food supplements to maintain the progress i make instead of letting things slip like i have done over 2015.
I got far too cocky and ahead of myself and thought i could do it on my own and i stupidly didn't listen to my dads advice or the odd people from clinic when feed and supplements where mentioned over and over again but i don't want to look like this anymore and i don't want the worry and stress of not gaining weight to keep clogging up my mind.
Feeding over night will take that pressure off and give me peace of mind knowing i am doing everything i can to improve and if i'm still struggling then that's for the hospital to start looking into as i am just not getting back over 50kg!

I really got carried away about my weight there as it's obviously a big issue for me personally but the next thing i want to do is drink more! Most people usually say water at the end of that but anyone that know me knows i don't handle drinking water very well so i like to add a little bit of cordial to it!
I'm dehydrated a lot because i don't drink enough and i know full well that i don't. I just never feel thirsty so never think about having a drink unless it's mealtimes usually.
I need that to change because it isn't good for anyone to not drink enough, one step i have made in doing this is getting myself a new app on my phone that gives me notifications every 2 hours from 10am to 10pm and pops up saying, "time to drink water!"
The app also allows you to input how much you've drank each time you do have a drink so you can make sure you're drinking enough and it sets you a goal of 2000mls of which you can decrease or increase on the settings. I now use this every day as it's really helping! The app is called Watercheck and i am pretty sure it's free to download.
The next step i made in improving my fluid intake was to buy myself a water bottle but one that aims to help you drink more.
On the water bottle it gives you set times and a guideline of how much to drink between each hours so that after filling it up with fresh water in the morning, by the time you've completed the water bottle with just one re-fill in the middle of each day, you have drank just under 2 litres.
It's called a motivation bottle. Previous to this i was just using a norma 750ml bottle of evian water and kept refilling, i would use it every day and manage to meet my 2000ml goal most of the time. I feel better for it and i don't get any headaches anymore, it will also be helping keeping my kidneys fuelled and flushed of all the toxins left by all the medications i take daily.

Next step in my "improving me" goals is to be exercising. I gave up last year, like the quitter that i am, i felt like i wasn't improving and it was way harder than i ever anticipated it to be.
Instead of pushing through i just gave up and i regret doing so!
I think i assumed after transplant that with having new lungs it would automatically mean after a month or two in the gym going every other day i'd be fit and able to be doing a half marathon! This was not the case. at. all!
I was a month in and still only managing 5 minutes on the bike doing one minute on and one minute off and that was leaving me completely out of puff.
I'd try the treadmill but after messing around up and down with inclination for the 8 minutes i would manage i'd be gasping to stop so i would.
And that was only on the good days. On the bad days i would do a few arm weights on the weight machines and do my five minute interval training on the bike and that would be me exhausted.
Another month of this with no improvements with good days or bad days, i quit!
I decided i just wasn't cut out to be a gym enthusiast and i hung up my newly bought gym gear.
It was only months and months later that i sat and confronted it all and realised how stupid i had been. I have very, very little muscle in my legs and arms because the last exercise i did was 6-7 years ago when i would walk around my secondary school from classes to classes and do the odd P.E lesson if over protective teachers would allow.
Since then i haven't participated in very much exercise or activity due to my crappy CF lungs and needing wheelchairs for getting around large areas and oxygen 24/7 at rest.
How stupid of me to expect it to just come naturally and for my muscles to just grow like Schwarzenegger within 2 month. I was literally having to start again but instead of carrying on i give up too early so this year i'm starting all over again... again.
i think i am going to take a new approach though, rather than sign up to a gym and be disheartened watching all the other woman do a full work out whilst i have a rest in between my minutes bike ride, i am going to build my stamina up on the exercise bike i have at home by doing my interval training. Whether i do 1 minute on and 2 minutes off for 10 minutes to start off with, it doesn't matter, i need to start somewhere and this time i won't quit. Once the weather dries up and warms up slightly i am going to go for walks as last summer i was really enjoying them! Once my fitness is improving more, i might even incorporate a little jog from lamp post to lamp post with a walk in between.
From there, once i feel more confident and able, i think i would re join the gym to work on things more and with different machines.

So these are my goals and achievements i set myself for 2016-2017.
I hope i can come back to this in Jan of 2017, 2 years post transplant and have reached these aspirations with new ones ready to smash!
Wish me luck!!

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Happy 2016 !!

i have so much to write about.
i find i do this a lot, i go through spits and spats with this blog. i get on such a roll with it and can fire them out once a week and then i get to a point where i have nothing left to say and don't want to bore you more than i already do talking about mundane stuff just to post a blog. it's pointless!
So i have had a few month off and now i am back raring to go, who knows how long it will last!
I have some ideas i would like to post about. Just some things i want to document for myself to look back on :)
It's coming up to a year since my transplant, it's been a struggle but i would like to think i'm on the other side of it and i can now focus on a 'normal' life but i intend on doing a whole blog dedicated to that in a couple of weeks.
i went on my first holiday in 6 years in November so expect a blog about that including some pictures so i can go back to that one day and remember how good it was.
i celebrated christmas and new year out of hospital this year and i plan on doing a blog about that.
2016 is a new year and i have some things i want to achieve before 2017 so i am going to write a blog documenting those things so i can come back this time next year and see what i was capable of!

Thats a few posts i have in my head to blog about, all very 'diary entry' style for me to look back on and treasure. i've started a scrapbook too so it'll be nice to have that! it's a little out of my comfort zone to scrapbook things so i am having these blogs as a back up for if it goes wrong.

So that's just a little post to let whoever still visits this website know what to expect in the next couple of weeks!

Happy New Year !!
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To Do List (in my lifetime)

I hate the thought of a bucket list!
I just don't see why the thought of your death should give you the motivation to do something with your life. This is your life, you're alive so if you can.. go do it! You shouldn't have to be kicking a bucket before you decide to forget all inhibitions and go wild. Life the life you love!!! Just go for it!

To Do List:-

• Get a job
• Move out
• Go to Iceland & See Northern Lights
• Visit Galway (Ireland)
• Sight-See in Rome
• Get my own book published
• Write weekly blogs
• Scrapbook every year
• Do London Marathon
• Do Manchester 10K for pearce ward
• Take more pictures
• Keep an annual planner
• Try yoga
• Have godson & godmum sleepovers
• Plan wedding
• Get married
• Go on more walks
• Stay organised
• Broaden my food horizons and try more things!
• Keep bingo up
• Learn to ride a bike
• Always have nice nails
• Own nice bathroom
• Watch a gorgeous sunset 
• Go to a pub quiz & WIN
• Try every TGI cocktails except milkshake ones or minty ones!
• Learn sign language fluently
• Always buy Alfie & Freddie books
• Continue to see all future X-Men movies at the cinema
• Finish writing out nans diaries

Have you ever wrote your lifetime to do list out? 
I rather enjoy reading people's little bucket lists. It's interesting what people want to do or achieve in their life. 

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Bumpy Ride

You are told over and over again before transplant and after transplant that this isn't a cure. Ultimately, you're swapping one set of problems for another.
That's not to play down what an incredible, selfless and life changing/saving miracle that transplant is. I'm just saying, it's not the easy way out. It's hard, harder than you can imagine it will be. Once i found my voice after having the ventilator out post transplant, i remember saying,
"if things go wrong from here, that first breath i took on my own as soon as they pulled the tube out of my throat makes everything worth it."
Nearly 9 months on, sat here on my 3rd week of Intravenous Antibiotics out of a scheduled 6-7 weeks.. i stand by what i said.

Once I had got myself off transplant ICU and onto the normal transplant ward, i had everything running very smoothly. I was determined to get myself out of there and back home. Maybe it was because just 3 weeks prior to that day, I wasn't sure if I was ever going to be getting back home or maybe it was because it had been 3 months since I was last there. Either way, I was pushing myself with physio, I had revised my new treatment and medicines regime so I knew it almost off by heart and I was working on my erratic mood swings. Trying to wake up with a positive outlook for the day. 
One week on the transplant ward and our family was hit with tragic news, my beautiful, witty and strong willed nana had passed away. She was 82 with a wicked sense of humour and the biggest heart to love the biggest family she had brought into this world. It hit every single member hard, as you can imagine it would. She was the queen of our family!
Personally, I hadn't seen her since October 2014 due to being in hospital, I spoke to her on the phone through the hospital admission and due to recovering from transplant and still having chest drains in at the time, when she was taken ill in hospital and the family were told she wouldn't be coming home.. I wasn't allowed to see her, kiss her or give her my final goodbye before she left us.That was very hard for me to handle.More than her actually passing was.This made my mood spiral down and my anxiety creep up to an all time high.. my mood and anxiety were already out of sync due to the shock of going from near death, to full of life and all the crazy meds I was now on post transplant.It was a lot for my body to deal with but even more so for my head to.So first on this up and down rollercoaster post transplant blog is anxiety and mood.
I felt like nobody warns you about the effects it has on your mood and as I have mentioned on previous blogs. I found that extremely difficult to deal with.

A few days later, I had my first biopsy and was told that I had A2 rejection, something that is incredibly common in the first year of transplant. Your body is adjusting to having what is essentially a foreign body inside you. It's alien and not part of you so therefore, your body wants to investigate and attack, that's why you're on the anti-rejection tablets but of course that's all trial and error to get your levels balanced in your blood.

Next on this bumpy road blog, rejection.They're going into this blind for the first few months and so your first biopsy post transplant usually comes back with some form of rejection.

This is scored by the following:-

A0 = no rejection
A1 = minimal rejection
A2 = mild rejection
A3 = moderate rejection
A4 = severe rejection

So I had mild rejection and with this being a whole new world to me. I panicked. Regardless of everyone telling me not to as mild rejection is treatable.. I still cried about it!! haha.I think the word REJECTION is such an awful way to put it. It sounds, cold and final.The next day I was placed on a three day course of high dose intravenous steroids.The steroids gave me a boost in my mood, energy and appetite! Once the three days were up, I went home and when they repeated my biopsy a few week later.. It came back as A0! No rejection!!I've had a fair few bronchoscopies and lung biopsies since and all of them had come back as A0; until the one I had on Tuesday (29th September) it came back as A1, just minimal rejection.Due to it being A1, they aren't treating me with the IV steroids and instead, they've just increased my anti rejection medication for now. They seem confident this will clear it up and I will be having a repeat biopsy in a few week to find out.

What's next on this recovery rollercoaster? Tacrolimus Levels - poor absorption and side affectsI touched briefly on the last section that they struggle to get the balance right with your anti rejection medication at first.This usually settles after a few months or so and you get yourself a baseline.However, the consultants have found that people with Cystic Fibrosis struggle to absorb the meds and this can make it highly difficult to find that balance.My consultants have told me that I am one of three patients out of the 1000's they've ever treated that struggle severely with absorption. So much so, that I am the only patient in the Wythenshawe Transplant Unit that has their anti-rejection drug, tacrolimus three times a day and still have a baseline level between 4-6. The ideal is between 8-12 so I am on the lower side constantly.Last week I was on 2.0mg three times a day and my levels were 4.3!With my biopsy coming back as A1 they've increased my dose ever so slightly to 2.5mg three times a day. I am to have a repeat blood test next week to find out if my levels have gone up or not. Hopefully they will have.

Following on from my erratic tacrolimus levels, I am very sensitive to it. Which is very odd with me not absorbing it very well, but that's the way it is. So one I had left the hospital after my transplant, I was brought back in just two weeks after with being violently sick, bringing meds back up, unable to keep food or fluids down and dry heaving when there was nothing left to bring up. When I was on the ward, we found out why. My levels were high at 22 and this can be toxic which was causing a burning sensation in my hands and feet and also the cause of my sickness and vomiting.A week spent in hospital and we got the balance right again.There have been two more of these sickness and burning sensation episode since. With my levels sometimes being in the 'ideal' range of 8-12 but still causing the side effects to be too much. The doctors think my body is very sensitive to Tacrolimus and this isn't too rare.

Finally and the most lasting bump in the road was in May. Just 4 months after my transplant, I caught pneumonia and I deteriorated rapidly. Landing myself back in ICU on a C-Pap ventilator to help keep my airways open. My oxygen saturations dropped to 60-70 without oxygen and breathing was beyond difficult. It was an awful shock. I'd gone from experiencing life with the ability to breathe so easily to gasping and unable to get myself to the bathroom without feeling faint and unable to get my breath within a couple of days. It scared me, absolutely petrified me. The decline was faster than I would ever have anticipated and all I kept asking everyone was can this get better or have I ruined my chance by catching penumonia.Thankfully and luckily for me.. It did get better and after a week on ICU, I was back on the Transplabt ward for a week and then sent home on IV's. Unfortunately, that pneumonia didn't clear up as smoothly as we would have liked and my bottom left lobe is still consumed with thick sputum 5 months on. I have needed home IV's and bronchoscopies and Physio sessions at the hospital regularly since May. In fact, I have been on IV's more than I have been off them since catching pneumonia and I have weekly to two weekly clinic appointments so they can keep a closer eye on my progress. Progress which is very slow and very small but progress all the same!!

I haven't had the smoothest ride since transplant but nobody expects to! It's been a very bumpy road but one I am very lucky to get to travel on. I wanted to write this blog just to jot down some things that can occur after transplant. They are so small when you compare them to how i was before but it's not all plain sailing once you've had your transplant. 
There are still some hiccups, big and small! 
It can be scary too, you know you're on borrowed time but it's worth every second to have this new lease of life. 
I have spent more time than i thought i would in hospital post transplant but certainly on better terms! 
I am very, very lucky to be here writing this.. it could have gone a completely different way in the earlier days and even if it did.. 

"if things go wrong from here, that first breath i took on my own as soon as they pulled the tube out of my throat makes everything worth it."
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Writing a letter

After transplant, you are given the opportunity to write a letter to your donor's family. 
A chance to disclose your thoughts, your appreciation, your story, your hopes and dreams. Whatever feels natural to you at the time of sitting with pen and paper. 

I knew this would be something I would have to do and want to do before I had my transplant whilst I was still on the waiting list. There's a board on the wall in transplant clinic that has a few questions and answers about writing your letter to the donor family. 

I used to sit and read it every time in my wheelchair and oxygen or huge NIV whilst waiting to see one of the transplant consultants. I'd daydream about what I would write.. what it would feel like to have that opportunity to thank a complete stranger for giving you life. Someone who has no idea who you are either. 
I would sit and daydream and in all honesty I would underestimate how hard it would be when the time come.

Fast forward 2 years or so and that call came for me. I am a very, very lucky girl. When I went back to my first clinic post transplant, I sat in the reception waiting room and I read that same board with the same questions and answers. Suddenly it felt different, of course it would do. These questions where so much more real now. This time when I began to think what I would write to my donors family. I drew a blank and I started to panic. I felt utter dread about writing that letter. Just a deep anxiety.
That call was my last chance. I was so close to being on the verge of too poorly for transplant. It came in the nick of time for me but on the other hand for this family's loved one.. time had ran out. 

So what do you say to them? 
What do you say to a family who are grieving while you're learning to live a whole new life? 
I pushed it to the back of my mind. It wasn't the right time and they highly advise you refrain from writing your letter till you are at least 6 months post transplant. 
It allows you to recover, it allows you to settle in to this new life a little bit and it gives the family of your donor time to grieve for the one they've loved and lost. 

6 months flew by before I knew it and one day it just felt right so I sat with my pen and notepad and I wrote. I wrote whatever came to me and it just flowed. I didn't stop till I felt I had written what I wanted to put across and when I had finished, I had wrote 8 pages. That sounds ridiculously huge but it was a little notepad! When I had gone through and edited out little bits I felt didn't sound right and typed it up on the computer it was 3 and a half pages long. 

I worried it would be too much but I passionately wanted to get everything I had in my mind out. I didn't know them and I was under strict instruction to be very careful what I let them know about me due to confidentiality reasons. I was given free rain though really. It was very obvious things I had to stay away from, things like my full name, where in the UK I lived, my age and which hospital I received my transplant at. Other than that, I was told to write anything I wanted to. 

Given this information, I felt I wanted to let these people know more about the girl they had selflessly thought about saving at the worst time of their lives. 

So I started by introducing myself, as best as I could given the "rules" of confidentiality. I decided to start from the beginning and told them my story with little facts about me such as interests or achievements I had made along the way. Then I got down to the day that call came, I expressed exactly how my health was at the time, I told them the truth. I told them this was my last hope and I would not be here in July (when I wrote my letter) without them making that decision to say yes. 

I then wrote a message trying to tell them what that meant to me; if words can even begin to express it.. which they can't. 

To end my letter, I wrote a list. 
A list of things I intend to do with this life so they knew I wouldn't waste this opportunity and I would be eternally thankful to them and my donor. I told them I would live my life with all the highs and lows that were to come in honour of the person they had lost. 
I wouldn't let them down and I don't think I am so far still. 

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