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 affects. I 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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Monthly Gym Reports - August (THE START)

Exercise is really important post transplant. Not just for your lungs and general health but to build up all the muscle that has been reconditioned over the years spent unable to do very much.
You're also on steroids as part of your anti-rejection meds, steroids are muscle wasting. So it is vital that you try to keep your exercise up to help prevent this from happening.
I've been having a few gym session with Ruth my transplant physio but i have recently joined a gym. I'm wanting to keep an update on my blog of my process so i can see how far i have come!
I'm an absolute weakling and have been unable to exercise properly for years so prepare yourself to be very underwhelmed for the first few months! Ha.. :|
Here goes!!!

Start Weight: 54.6kg

Biceps: 9 inches
Thighs: 17.5 inches
Calves: 11 inches
Waist: 33 inches
Chest: 36 inches


TREADMILL:
The treadmill is probably were I get my biggest workout. Cardio is important for me but building up my stamina especially when walking is priority for me at the moment. I tend to walk on a flat level for 5 minutes at a pace of 4.5 I then incline the hill to 4% and continue walking at that 4.5 pace for 10 minutes.. I then pop the incline down to 2.5% and increase the speed to 5.5 for 5 minutes. I go up on the hill to 4% for 5 minutes at the lower speed of 4.5 and then slowly decrease the speed rate and the incline till I am walking at 4.5 on the flat level to finish off my 30 mins on treadmill.

BIKE:

i like to start off on the bike and come back to it at the end. I do just 8 minutes to warm up and then I head off to the treadmill. Once I have completed my little gym session, I jump back on the bike for 8 minutes for a little warm down. I'm not the biggest fan of the bike because I find it very uncomfortable but I do like the feeling I get in my legs!

WEIGHTS:

I go from the treadmill and head onto the arm weights to give my legs a little cool down. As I said before, I am a weakling and therefore, I manage just a 5kg weight on my arms for now. But I do 10 reps of each different kind of arm weights machines. 

STRETCHES:

Once I have completed the bike, treadmill and weights, I just walk over to the mats to stretch my muscles to prevent them tightening up. I get quite a lot of pain in my shoulders so I like to make sure I get a good stretch with them. 

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Post Transplant Life/Regime

MEDS/NEBS

Anti-Rejection:
I take Azathioprine, Program (FK) and Prednisalone steroids. Anti-Rejection are your most important meds. It's vital you don't miss these meds. It's what is suppressing your immune system enough to prevent rejection taking over your transplanted organs. They keep a check on your anti-rejection levels by taking blood samples. These samples are taken fairly regularly until you reach a stable level, then you'll be checked less frequently. It can be a struggle to find a good balance for a while due to a number of different factors. This is completely normal. Your body is healing and getting used to what will be the biggest shock to your system.

Prednisalone Steroids

Azathioprine

Prograf

Enzymes:
I have taken Creon enzymes since i was 13 months old and first diagnosed with Cystic Fibrosis. This is because the mutant gene that causes Cystic Fibrosis not only affects your lungs but it can affect your pancreas, digestive system, heart and liver. It affects your pancreas by disabling a natural occurrence where when food is eaten, enzymes are released that allow your body to take the nutrients needed from the food you eat and turn that into energy, fats, salts, vitamins and other things. This can send your digestive system loopy! It can swing from one extreme to the next! Constipation can be a regular thing for people with Cystic Fibrosis and in some cases, this can become a serious bowel blockage that needs urgent medical assistance and is unbelievably painful. It can quickly lead to needing surgery! On the other hand, it can give you the runs! Meaning a toilet becomes your best friend along with agonising stomach pains.

Stool Softner & Laxatives:
Since a scarily serious bowel obstruction i had in 2013, i have since been on some medication to try to help prevent that happening again. Sodium Decussate is a stool softener and that basically does exactly as it says on the tin. Softening the poop helps prevent constipation which therefore helps prevent a bowel blockage which then turns into a horrific bowel obstruction! Senna is a laxative that i use to help keep things moving regularly which again helps to prevent constipation. Together they make a beautiful couple and my digestive system continues to remain in working order i am happy to report!

Sodium Docusate

Senna

Supplements:
Vitamins are a group of tablets that are often apart of a Cystic Fibrosis patients daily medication. This is due to the fact that the vast majority of us are unable to digest our food properly without enzymes and therefore, unable to take out essential nutrients from the food you're eating. So they prescribe a variety of vitamins to help supplement any deficiencies. I'm currently on; Viatmins BPC which is a combination of vitamins, Cholecalciferol is a vitamin D supplement but it's very strong and therefore only taken once a week for me and finally, i take Calci-chew which is a calcium salt used to supplement calcium in the diet.
Before transplant and for a little while after i was using an overnight feed to help gain much needed calories. Before transplant i was on this all day 24/7 because i was hardly eating anything and it was my main source of nutrition. After transplant, i fed for the first month to maintain weight whilst my body recovered but my appetite got bigger and better and i now no longer use the feed as i am gaining weight successfully on my own, this is a huge achievement for me as i have battled to gain weight for many years now.
I still have my button, which gives me access to using the feed again if it is needed in the future. Some people post transplant still need the help of supplements such as feed or milkshakes etc so they still use a peg, button or NG tube to get the extra nutrients.

Nutrison Concentrated (Overnight Feed)

Vitamins

Proton Pump Inhibitors:
Yes, i did just google which group of drugs this capsule belongs to! Have you ever had acid reflux? This can cause heartburn or indigestion symptoms. Well 9 years ago, i started having a horrible and regular heart burn which would bring tears to my eyes. I never thought anything of it until i happened to mention it in a clinic appointment back in Boothall Childrens Hospital and they told me it sounded like i had Gastro-Esophageal reflux disease or in lamas terms, Acid Reflux. I was then whisked away to have an acid reflux test performed. After a long, emotional, sickening afternoon, they finally managed to pass a little tube down my nose, down my throat and sitting in my stomach. This tube would measure whether acid was escaping from my stomach and making it's way up to wind pipe which would be dangerously capable of getting into my lungs. I was useless at having this performed because my gag reflex is on point and i kept bringing the tube back up so it would literally go up my nose and back out of my mouth, horrible at 12 year old, let me assure you! Anyway i extremly reluctantly managed to get through a full 24 hours with this tube in, including a trip to A&E begging a doctor to get it out of me but he managed to convince me to continue. The results were in and it was true i did have this acid reflux and i was started on a drug called Omeprazole. Now post transplant, my omeprazole has been increased as the anti rejection meds can cause your stomach to become a little more upset and temperamental and acid escaping and taking a little holiday in these new lungs is a MASSIVE no no!!

Omeprazole

Other "Anti-" drugs:
Antibiotics have been a major part of my life as they helped me get through many infections and save my life. Post transplant i have been on both IV antibiotics and oral antibiotics. I'm currently on IV (Through a drip) antibiotics and i was on a high dose of oral antibiotics for a few months but that has been steadily reduced and i now take them on alternate days. Now my immune system is suppressed, my body is weaker and so antibiotics help give my body that extra little amour against bacteria wanting to invade! They're vital.
Anti-viral's were something i had never heard of until transplant and that antiviral was Valganciclovir.
As far as i am aware, this is to prevent a Virus called CMV from becoming active and making you feel very, very poorly indeed. I don't think you ever get rid of it once it has become active in your system as it is very resistant to everything. Valganciclovir is another vital tablet for me.
Anti-fungal was also a new type of drug for me post transplant. I'm currently on oral Itraconazole. I would prefer capsules or tablets as i am absolutely useless at tolerating oral solutions. I just bring them straight back up again and i'm not sure why but it's the way it has been since i was very young. Luckily for me, i still have my button inserted into my stomach so i can flush the oral medication straight into my tummy without tasting, swollowing or throwing it back up! YAY!
Anyway, pretty self explanatory again. Anti-fungals are used to help prevent or treat fungal infections and fungal infections are not what i want for my lungs!

Itraconazole (Anti-Fungal)

Septrin (Antibiotic)

Valganciclovir (Anti-Viral)

Insulin:
It's not uncommon for people with Cystic Fibrosis to develop diabetes. Sometimes, this can be controlled by diet or treated with insulin. I was diagnosed with Cystic Fibrosis related diabetes when i was 10 years old and was instantly places on insulin. Diabetes in Cystic Fibrosis is a category all on itself. It's not necessarily type 1 or type 2. It is very special and frustrating!! Our pancreas does produce insulin... it's just not enough and high blood sugars thrive or infection and infection thrives of high blood sugar so it's important that our diabetes is under control.
I was lucky enough to have a very mild case for the majority of my childhood and into adulthood, needing very little insulin and able to drink and eat as much sugar as i liked.
Then in 2014 i began needing insulin a lot more. I went from needing a long acting insulin once a day (which covered me for the full 24 hours) to needing long lasting insulin twice a day and also fast acting insulin before eating anything.
This helped for a little while but suddenly it rapidly changed and i was needing more and more but it was getting less and less controlled. It got to a stage where nothing we did helped and no amount of insulin improved my condition because it was a guessing game. So my CF & diabetes team decided it was time to try an insulin pump. One of my best decisions made! In November 2014 i began using an omnipod insulin pump and it has changed my life. It's made things to much easier, it's made my control brilliant and it's much less time consuming for me. The level they regularly check in diabetes patients is called HBA1C and mine has come down very smoothly and nicely thanks to the insulin pump.

Omnipod

Nebs:
Nebs have been a part of my life since i can remember. Technology has come a long way and they now have tiny portable devices that you can inhale your medication through within a few minutes! AMAZING! When i first did nebs as a child, you had to stick a massive white tube out of the window to prevent the household inhaling the medication too! It wasn't portable, it took up to 15-30 minutes and it was noisy and bulky. Now i take two different antibiotic nebulisers via a device called an E-Flow and it takes 2-3 minutes. I take Tobi nebs one month and then Colomycin nebs on the alternate month. I also have a neb called ipatropium which i use just before taking the antibiotic neb to open my airways and prevent a spasm caused by the other nebs. I'm currently also using hypertonic nebulisers which loosing sputum and make it easier for me to remove what's lingering in my airways and lungs.

E-Flow

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Transplant Clinic

I thought i would bring you along with me to a normal transplant clinic.
You aren't given a time at transplant clinic; it's literally first come, first serve.
So of course, the earlier you're there, the quicker you're seen, the faster you can get out and get on with the remainder of your day.
I prefer to set off at 7am so an early night is needed.
Wanting to be prepared the night before. I like to choose my clothes and lay them out my clinic bag.

Contents of clinic bag

In the clinic bag, we have my daily meds, itraconazole, syringe, blood pressure cuff and my tornaque. 

I get my normal bag ready, set my alarm and then head to bed. 

At 6:15am, my alarm goes off. Make up on, clothes on, make bed and downstairs for some breakfast. We set off at 7am and head onto the motorway to get to Wythenshawe. 

Entrance to the Transplant Unit

Tranplant Reception

In reception, i get given a number and then head off to x-ray and lung function.
The x-ray is just a normal chest x-ray. I have adapted the technique of wearing a wireless bra so choose to wear a sports bra and that saves a little bit of time having to change into a gown. Next up is lung function!

X-ray Waiting Room

Lung Function Entrance

Lung function entrance

Lung Function Room

It's here where you're weighed and perform 2 types of lung function tests to see the volume and capacity your lungs currently hold.

1st Test - You're told to breathe normally for a while and then it's a deep breath and a gentle sigh out with no force, till you've emptied your lungs. Then a big breath in. You do roughly three of those so they can get an average result. 

2nd Test - These ones are the fast ones. More normally breathing at first, deep breath in and then a fast and forceful huff out for as long as you possibly can till you're lungs are empty. Again you usually do three of those. 

You're all done at lung function so now you'll be heading back to clinic. 

The lung function unit is right next door to Pearce Ward (my CF ward) so if i have time, every now and then i like to buzz on to say hello to the ward nursing staff and physio's. 

Next up it's back to clinic to be seen by the Transplant Outpatient nurses. 

It's here that you'll have a chat about general health and state of mind. You report any problems to them or in my case have a leisurely chat because they're all so lovely and friendly. 

Blood samples are taken and your observations are recorded. You can then take your meds as you have to wait to have your bloods taken before having your tablets. That's because when taking bloods, they check lots of things like infection levels, white cell count, kidney functions and the levels in your blood of the meds your taking. That's to make sure you're having the right amount of anti-fungal meds and anti-rejection meds. 

Now you just have to wait to see the doctor who's usually just finishing off the ward round upstairs. 

One of the clinical rooms

There are a few little things dotted around the unit. I took a few photos of some of them that i like and find interesting.

Little wooden ornament with a crystal at the base

Bill Noble was a heart transplant patient who had won all these medals at the transplant games for swimming.

All these medals have been won by the transplant patients of Wythenshawe hospital at the transplant games

This is my absolute favourite and think the message is given beautifully.

The consultant usually comes off ward round at half 10-11ish. 

You're invited in to the room to discuss the latest goings on, how you've been feeling and any problems you have. They then usually check your x-ray and lung functions and compare them with previous ones that have been taken. They'll check your latest blood results and then chat about what they think is needing to be done if anything at all. 

Then you'll be given a sheet that you hand into reception to indicate when your next appointment is going to be. 

This little routine works well for me. Some people do things differently and it usually depends on what time you arrived at clinic and what time you took your meds the previous night that will determine in what order you'll go about your clinic appointment that morning. 

Hopefully with no problems you can leave clinic and get out of there fast ready to head off for some lunch or go home. That's a normal clinic appointment, sometimes bronchoscopies or both bronchoscopes and biopsies are combined into your clinic appointment. 

Later that night you will sometimes receive a phonecall off the outpatient nurses to tell you of any changes or concerns regarding the days earlier tests. I like to jot these changes down in my planner so i can keep a record for myself.  The nurses won't ring you if no changes are being made or there are no concerns raised. 

My latest clinic some could say wasn't the best but things are getting sorted now so i guess it depends how you look at it.
My infection levels had crept up ever so slightly than last week, my lung functions were down a little bit and my x-ray hadn't improved so it was decided i was to have a bronchoscopy the following morning and started on Oral antibiotics as well as home IV's.
The following day i went back to clinic for the bronchoscopy where they put a camera down your throat and into the lungs to have a look around, take pictures and then give your lungs what they call a 'wash out' and suction up all the sputum to clear you out.
Some people have no sedation for this but i prefer to have it! I can't imagine it is a pleasant experience without and i am certainly not brave enough to attempt it. My gag reflex is ridiculous so i guess it helps being away with the fairies to even notice.
I usually need a lot of sedation as for some reason my body likes to fight against it and even with the maximum amount of sedation i can still remember, struggling with the washes.
They're over before you know it though, thanks to that lovely medazalam sedation they use. Then you are kept in a recovery room to have your observations recorded over an hour. Once you have come back round and are showing no signs of problems, you're allowed back home but obviously need someone to go with you who can drive as you can't drive for 24 hours after.
Thanks for reading! 

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Dear Nan,

Dear Nan,
Where do i begin?
Can't believe you snuck off back to Tucker before i got to show you my big deep breaths in person. I made you a promise that you'd be the first person i visited when i got out of hospital and you made bloody sure of that didn't you!
You were the first person i visited.. just as promised.

I never got to see you since October due to ill health and hospital admissions but we spoke all the time on our phonecalls and if i couldn't get to the phone for whatever reason, you'd always leave me a voicemail..
"Hiya, it's only me love.. ya nan."
You kept me updated on the latest goings on in the family and i'd keep you updated on my own goings on. I miss those phonecalls but luckily for me, i kept your voicemails to listen to every so often. My personal favourite is the one where you're calling to let me know that i need to send my dad round to pick up some more cough sweets that you'd gotten me. Well you'd save yourself a fair few quid now nan because those cough sweets are no longer needed.

Well i best let you in on the goings on hadn't i?
I popped a tulip on your doorstep when i was let out for good. They're my favourite flowers so you're welcome! haha.
We went to the play at the coliseum, i'm not too sure you'd have liked it to be honest nan. It was slightly crude but very funny.
You'll be glad to know that i have taken up bingo although not at the Weavers on a thursday afternoon!
LITTLE FLO LIVES ON!!
I'm quite lucky although not for the past couple of week. Keep asking you for some luck and help but think you must be busy playing your own books in the bingo hall's up there.
The voicemail you left dad when i had my transplant kept playing over and over in my head. I was so excited to show you that you were right!
Wheelers are made of tough stuff. This year has certainly tried to test us all but we are plodding on!
If you happen to see that wonderful person who gave me this life i am living now.. will you please thank them and give them the biggest hug and maybe a game of bingo or two.

Things are on the up now nan.
Little Ivy Flo came along to show the family how to smile again.
Then little spud has popped up to show us that we can keep smiling now.

You & Our Roxie Lady

I was lucky enough to have one of your rings passed down to me, it's the purple one with a brilliant story behind it so it's very fitting with me being a story teller :)
I was petrified of something happening to it or loosing it so i have a special place for it now. You're ring is so precious to me and it's tied around your locket with specially chosen charms in so i have a little piece of you with me always.

My Nana Flo ring & locket

So here we are, i know you liked to read my blogs as i have a folder at home that you had in your little flat that kept all my blogs in someone had printed off for you to read and keep.
I think you liked the last blog i did for you and so wanted to write you another especially for your birthday! Don't worry i will print this off and add this to your collection! Me and JoJo are going through your diaries and typing up every bloody word you wrote.. it's taking a very long time nan but we will get there and you will be a best selling author with the true stories you have told. It's honestly opened my eyes seeing your life through your eyes and seeing your life before i was here and before any of your grandchildren were here. I never really knew just how hard your life was but what a woman you are! I am honoured to have the nickname little flo!

Big Flo & Little Flo

I feel so warm and lovely when i think of you or i am reminded of you. You're my diamond Nan. My queen and most importantly my little nan. Kiss sam and grandad for me. I miss you like crazy. I love you with all my heart forever.
Always yours...
Sophie Jayne
xxxxxxxxxxx

HAPPY BIRTHDAY NANA FLO !

Absolutely Beautiful.. My Nana <3 td="">

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Future Plans

At 22 years old, I have never had a job. Well... i worked as a waitress to help out at a pub on a couple of weddings, when i was 16 and i did a little bit of transcribing for a business called CodeBlue, owned by my uncle and family friend, Tony Kenny
I cannot wait to get my first real job. I haven't decided what it is i want to do with my life yet. So for now, i would be quite happy working in a shop. I'd love to work in a book shop somewhere.
Everyone who knows me knows my dream is to have my own sweet shop so i am currently hoping on winning the national at bingo!
I've gone through so many phases of what i thought i would want to do over the years. When i was younger i LOVED magic. My uncle Lee Lee would buy me magic sets for each birthday and christmas and we would play with them together. That was it for me, i wanted to be a magician when i got older and for years this was my ambition. I'm not quite sure what happened with it really but somewhere along the way, that dream got lost.
Next was a paramedic but that lasted all of one week as i saw the aftermath of a little old lady get hit by a car and i knew i would be absolutely useless in that situation.
Finally from the age of 14-18 i wanted to be a journalist or columnist. I obtained my love of writing after reading books, blogs and magazines. Once i started up my own blog, i realised it was something i was passionate about. I love to write, i love words and having my own blog gave me the freedom to write about what i wanted and when i wanted. It was this that made me realise i wouldn't make a very good journalist. I enjoyed writing what i wanted to write about and when i wanted to write about it but being told what to write about and having a deadline is something i would probably have to work on if it was what i chose to pursue.
Suddenly health took over and thoughts of jobs and careers were long gone from my mind.

Now it's something i am thinking about more and more and i simply have no idea. I do love writing and maybe that is something i could look into eventually but for the time being; a job in retail part-time while i get used to the lifestyle of a normal person with a job will be just lovely.

Moving out is high on my agenda too. I'm engaged and so would love to finally move out with shaun and start making a home of our own. Currently in the process of really tightening up my spending to save up but also to see just how much i can afford on a house or apartment.
My favourite room in a house is the bathroom. I just find that room to be so comforting and peaceful. I always have. I used to love nothing more that a hot bubble bath. I'm much more of a shower person now though. I'd just love a nice bathroom.
I have come to the conclusion that it's due to the fact that a bathroom/loo is a private place.
Interior design has interested me for so long, for a little while i considered looking into doing it as a career this was between the times of wanting to be a paramedic or journalist! I don't think i would be good enough but i get so excited thinking about buying homeware for the new house/apartment. I LOVE buying homeware. My favourite things to shop for apart from food obviously!

I am engaged and so of course after a job and a house. Our next venture will be WEDDING! We have lots of saving up to do! I'm not certain on what it is we want but i do have a few little ideas that are clogging my pinterest. I know we definitely don't want a church wedding as neither of us are religious. I'm excited to get planning but i know that isn't going to be anytime soon!

So to prevent the daydreams of weddings, venues and dresses; i am going to fill my free time by being the perfect godmother to my two boys!
One of which is still cooking in his mummy's belly. So until, he is ready to squish with cuddles when he's born... his mummy can fill his shoes for now. I guess technically he will be coming along too!
Maternity leave will be coming up real soon for Emily and i am gonna be such a good maternity buddy. A non pregnant one!
Alfie starts school next year, it dawned on me today after chatting with his mum Claire.
He is so very cute, can't wait to see him in a little school uniform!!
I'm gonna make plans to steal him from his mum and dad or granma and grandad and have adventures with him! Think MEMO will certainly be expecting a visit.. or two! Then i hope to pick him up from school some days and have him round for tea in (hopefully) our new house.

I'd love to have a few holidays in the future!
My number one place to visit, no matter what, is Iceland. I HAVE to see the Northern Lights. I think i have said it in a previous blog at some point that although there is a scientific reason for the Northern Lights, i just see it as magic. Real life magic. They have glass igloo's that you can stay in and get a real good view of the Aurora Borealis! Imagine how amazing that would be. I'm not one for bucket lists or anything but this has got to be one thing i have to go and see before i pop my clogs.
Anyone who knows me will tell you i am certainly NOT a sun goddess. I get prickly heat everywhere and it used to affect my breathing pretty badly. Nana Flo used to say i was an English Rose, i thought this was a lovely way to say i am sickly pale! haha. Anyway although i don't like the sun and being too hot, i  would however like to go to a Greek Islands such as Zante, as they just look so lovely and old worldy! My cousin Samantha told me she saw so many turtles whilst on holiday in Zante and i LOVE turtles so i have to go and see them! I'm sure it would be perfect as a nice chilled week away.
Salou was always a good old family destination when i was growing up, so would like to head back there with the family.
Florida is quite possibly my favourite place on earth. It's just a different world over there. Disney is magical no matter what age you are, the villa's make you feel like a millionaire and the rides and attractions at Universal Studios are out of this world. I'm a ride fanatic, i love them all!!

So these are my future plans hopefully to be achieved over the next few years, I'm looking forward to documenting each one of them on my blog as a little jigsaw of memories.
Save. Save. Save!!

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Part 6... the end of these parts!

This blog is going to be the blog that brings us up to date on where i am at now. There is gonna be a bit of writing and then some pictures to finish off at the end!
Thank you for all the likes and shares on Facebook and twitter.. i have had so many people say they have signed the donor register after just forgetting to do so and even some changing their minds completely and agreeing they would want to donate organs if possible.
This blog is my diary entry really, i'm very honest in what i write and i do that for myself mainly. It helps me get things off my mind and chest, it helps me remember things so i can look back on the memories but it's also now spreading awareness of Cystic Fibrosis and Organ donation and that's thanks to everyone who shares my posts or talks about this blog to family and friends.
The last post and also this post have touched on what could be classed as negative views or opinions as a comment or two that has been deleted have mentioned. I just want to clear up that like i said before, this is my diary and i want to be honest and open so when i talk about feeling down or anxious.. that was how i felt at the time and it was part of my transplant 'journey'.
I thought i was going crazy during those times and so when i came to writing these blogs after getting some messages from a few people awaiting to be assessed or on the list for transplant i felt it was best for me to give a full account of what happened to me. Although we won't go through the same things as everyone is different and has a different experience through transplant, if they happen to have these feelings, i hope they know, "i'm not a doctor".. but you are not going crazy.. these feelings are so very normal after all you've been through and it is okay, it does get better but make sure you talk to the right people who can offer support and anything extra if it's needed.
Thanks again for reading and sharing!
On with part 6....


The first thing i did when i got home was have myself a lovely hot bubble bath of course! It had been a very long time since i had been able to have a good soak as all they have on the ward is showers. So i ran my bath, soaked in it till i was wrinkly like a prune and then put fresh pyjamas on ready to get into my freshly made bed. Clean bedding on, new pyjamas on and very tired eyes.. on February 17th 2015 i slept like a baby in my own bed for the first time since November 13th 2014!
Whenever people asked what was first on my agenda in my new life; two of those things were the dentist and getting my beautiful new car which had been waiting for me to collect from the garage since the end of November!
As for the dentist, i was adamant i had a hole in my tooth so it was the first thing i planned to do! I'm glad to report that my pearly whites are just fine! Finally it was time to go pick my car up. I had chosen a cherry red Mini Cooper Paceman with black mirrors and roof. On arriving at mini, they had presented me with a special plaque on the wall and when i opened the door to my new car, the lovely people had given me my very own mini british bulldog teddybear to take home in the passenger seat! It was a gorgeous drive and i love my car very much so! I named my car Paul after one of the main ECMO guys on ICU!

I had kept it to myself, family and close friends about my transplant. I just wanted to get myself through it, keep my head down, work hard and get settled into home life and the new life i was gonna lead before informing everyone on social media. When i did log back into my Facebook accounts i had so many messages off the people who did know about it that i more than likely didn't get round to replying to everyone but thank you to everyone who did send messages of love and support, it was gratefully appreciated by me and my family.
After a week of being home and settled, i posted this post on my Facebook.

It wasn't too long after this that my best friend emily and my cousin paddy told me the best news!!
They were expecting a little baby but not only that, they wanted ME to be a godmother to the little jellybean. I was thrilled for them and super excited to be a godmum again.. now i was well enough and more able to do things, it means i can be a real good godmum and take them places and do things with them instead of them having to visit me in a boring hospital room!

A text off jellybean after his first scan

To celebrate the good news in our lives, me having new lungs and emily having a baby, we scheduled ourselves in at a spa to have the massage we had promised ourselves since our birthdays the previous year. When we arrived, we filled in the obligatory forms and then slipped into our robes and slippers. It was then that the therapy ladies popped our bubble by telling us with me only being a couple of months post surgery and emily being pregnant we couldn't have the full body massage we had been longing for nearly a whole year!! Instead we had to have a facial which was very relaxing and my face felt beautifuly soft afterwards but lets be honest.. it's not an hour and 15 minute long full body massage is it!! haha.
Next year em? :)


I had booked tickets to go for afternoon tea and watch a show at the local coliseum for my nan, auntie  and cousin for her christmas present so we went with nan in our hearts and had a great time! I think she would have loved the afternoon tea but the actual show may have been a little too crude for my nan's liking!!

the afternoon tea reservation

Weeks flew by and before i knew it, it was Easter.. time for a family trip to Blackers!!
Last year we went but stayed in a caravan and i had oxygen delivered, we took my wheelchair and i was pushed round with my oxygen on the whole trip. We all had a brilliant time but to go back this year, without oxygen deliveries, without wheelchairs and no NIV.. it felt incredible.
We stayed in a lovely hotel this time round and we shopped, we walked and we went on the pier but my personal favourite blackpool activity is BINGO!!
Walking along the beach front, it occurred to me that we were here just 7 months previous. I had portable liquid oxygen through nasal specs running at 2 -3 litres and had someone pushing me along in a wheelchair. Now just 2 months post transplant, my little legs were carrying me round and i hadn't walked this far in such a long time. I could breathe, i wasn't breathless at all and it just amazed me and the rest of my family. I felt incredibly lucky and i cherish that moment.
Our holiday trip was cut short as one member of the crew got poorly and we had to come home a day early but the whole trip was lovely and brilliant to be able to compare where i was before transplant and were i was just 2 months post.

I have mentioned before that i have a godson named Alfie and it was his birthday in April so me and my mum too him to Sealife as he loves Nemo or as alfie called him.. MEMO!!
So we went to pick Alfie up but was greeted at the door by Buzz Lightyear instead.
He was utterly mesmorised by the clownfish (nemo fish) and i have the cutest video on my phone of him with a cheesy grin on his face dressed as buzz lightyear glued to watching the 'memo' fish!
When we had gone through the sealife centre i bought him some little nemo fish to play with in the bath and a nemo teddy. We headed off for some lunch but not before popping into a disney shop to buy him a dory fish teddy to go with his 'memo' one. It was hometime so we piled all the toys into the car with him and took him back to his mum all finding nemo'd up!


One evening, i thought i would start writing my transplant story down and found myself making part 1 of these blogs. It was at the end when i had finished and posted that i was suddenly hit with an overwhelming wave of emotion and i cried and i cried and cried. This time i didn't feel better afterwards. I regretted writing the post and going back to re-visit what was the hardest time of my life so early on. I know now, that it was too soon to go back there and drag up thoughts that i had been forced to push to the back and get on with everything. Now i had took the time to reflect and in all honesty, i let it take over. The panic, the fear, the emotion. Everything tumbled on top of me and i went to bed feeling flustered. Waking up that morning i thought, today is a new day but this cloud was hovering over me. I tried to pretend it wasn't but it is so hard not to!
I constantly had a sickly nervous feeling that was there all the time from the moment i was awake till the time i went to sleep. It never went away, it came in erratic waves. One moment i would feel slightly nervous and the next it was full blown panic modes. I didn't know what the hell was going on or why it was going on so i mentioned it in clinic as they always ask how you are psychologically and mood wise. I told them everything and they told me to fill a form in on depression and anxiety.
I knew this wasn't depression. I was happy.. i just had this nervous feeling that held me back and that was causing me to feel down sometimes. So i completed the questionnaire and handed it back over. I asked why this was happening and the lovely nurse Lisa, told me nothing was happening. I had been through a major operation and i was 21 years old, i had a totally new life and although it was amazing  of course it was going to be bloody frightening too. She also mentioned that my meds can have a major affect on my mood.
I knew she was right with what she was saying but it didn't make these feelings go away or make me feel any better. I still felt like i was wasting time feeling too scared to leave the house or sit in the house on my own or go out in public places.
Nothing i seemed to do helped. If i stayed in, the feeling would flood me and i became so withdrawn because my mind would go overtime. If i went out, i would feel fine one minute and then it would creep up on me and i'd want to just leave and go home.
This went on for weeks and it was really bringing me down, i felt trapped but most of all i felt so guilty for having these feelings.
One evening i went out for tea with shaun and as we sat waiting for our food, i started getting the usual signs, the sickly tummy feelings, the heart racing and the could feel myself getting edgy and agitated as people walked past us. I stood up to go to the bathroom.. big mistake!
I locked myself in the room and sat down for a wee, my breathing was getting faster now and i was having palpitations and getting sweaty. It felt like the little toilet cubicle was closing in and i just felt what i assume is what it is like to be claustrophobic but yet i had never had that problem before. I finished what i was doing and got myself out of that bathroom pronto! It settled when i got back to the table with shaun but only slightly.
Minutes passed but they felt like hours and still our food hadn't arrived, i just wanted to leave and go home but i didn't want to just admit defeat and i didn't want to ruin a night out. So i persevered. BIGGER MISTAKE!
The feelings grew and grew and suddenly i thought i couldn't breathe!!!
I stood up and left, i just had to get outside.

I didn't know what had just happened but i hated this and it was the final straw.
I told the nurses the next day at clinic and pleaded that they helped me, i didn't want to carry on like that. I felt pathetic. She told me it sounded like i was having panic attacks and more than likely suffering from a form of anxiety.
I asked why hadn't i heard from anyone about that questionnaire i had completed last time and she said due to me not being 'high risk' i would have been put to the end of the list to see the psychologist. I told her this was ridiculous.  I understood that people who are high risk obviously should be priority to see the psychologist but it was terrible that that's what it had to take to be seen and helped. I didn't want tablets, i just wanted some ideas on how to help myself. I just felt like there would be people out there who would feel the same way i did or similar and they had done the same as me, completed a form and waited but heard nothing, so they waited longer and longer and eventually they may have become 'high risk' all because their needs weren't deemed important.
I completed another form and had to wait again and continue at home coping on my own.

So my coping technique was too keep busy. So from the moment i woke up, i was out the door and finding anything and everything to occupy my time till it was time to come home and get myself to bed. WORST IDEA!!
I wore myself out and when i became unwell, i kept going rather than slowing down. I'm not saying this caused what happened next but i certainly did myself no favours. I exhausted myself and due to being unwell, i ended up on IV's, a day into them and i felt 80% worse, i was now being sick and felt dreadful. The following night, i had been bringing up very watery, loose sputum and my chest sounded more chesty than it ever had, which was hard to believe. As the night went on, my breathing got worse and i checked my sats to find they were in the 70's! Panic hit as we knew i had no oxygen in the house after a quick debate on what was best, i asked my dad to call an ambulance and get me to hospital.
They came and checked everything and then popped me on oxygen, they agreed to take me to Wythenshawe so i could go onto the transplant ward there. That weekend we found out i had pneumonia and i was needing high levels of oxygen but the oxygen in my blood when they did arterial gases weren't improving, it was decided i was to go back onto ICU so i could have an arterial line in rather than them keep doing incredibly tricky and painful injections in my wrists and i could be placed on the C-Pap (non invasive ventilator) to help control my oxygen levels in my blood more thoroughly. It was petrifying. I won't lie.
It was scary how fast that came on and it was scary to feel back to how i used to be, unable to talk due to getting out of breath. I spent a week on ICU and slowly things were improving when they said i could go back onto the transplant ward.
After sessions with physio, i was allowed to go home a week after being moved off ICU, i went home on IV's just to keep myself well. I had my second biopsy before i left and it came back clear with no rejection!!

As a family we were once again hit with some tragic news.
My big cousin was able to give his organs to save people's lives. His amazing parents gave him the opportunity to honestly be someones hero and they helped to save the lives of others therefore, becoming hero's in there own rights. To have seen and gone through both sides to organ donation in the space of 5 months was unbelievable and heartbreaking.
To see how it gave hope to my auntie sharon in what must have felt like a hopeless situation, just gave me the warmest feeling. I can only hope i manage to do my donor proud, their family proud but also sam and my auntie sharon and sam's dad jim, proud.

my cousin Samantha, me and my cousin Sam

I started talking more to people about how i felt, rather than being ashamed or guilty of it, i knew i needed to tackle this head on or i wouldn't get any better.
I talked a lot to my aunties, to shaun, to anyone who would listen really. I came to realise that maybe lisa was right, this was a whole new life i had literally been picked up and thrown into, i had no plans, no goals and no idea what the hell i was doing!
I had to learn everything again and literally learn how to live like a normal person. (or as close to normal as i was gonna get) - whatever normal is?!
I have come to my own conclusion and i could be totally off the mark but i think i was getting these anxious feeling when out and about or sat at home because i was overthinking everything way too much. I was overthinking about what other people would be expecting of me way too much. I was also out in the wilderness. I was used to being ill, i was used to hospitals and i didn't have that anymore. I didn't know who i was because for years i had been a girl with CF, oxygen, NIV and hospital admissions all in tow.
Now i was a girl with shiny new lungs and a lot of people watching seeing what i would do with these new lungs and that was a lot of pressure but i was silly.
Nobody was putting pressure on me but myself.
Nobody was making me feel guilty for feeling this way but myself.
i had a long harsh word with myself and although i still get my down days and these nervous feelings from time to time.. it rarely stops me from doing things.
I actually want to do things now and most of the time i enjoy myself.
I just want to tell anyone that has these feelings post transplant that you aren't going crazy like i thought i was and you shouldn't make yourself feel any worse for feeling like that the way i did. These are your feelings and your thoughts and as cheesy as it may sound. That is perfectly okay that that's the way you're feeling. You are allowed to feel down, you are allowed to feel anxious and you're definitely allowed to cry.
So do it and then allow yourself to feel the good times too and if extra help is needed.. take it!
I managed to pull myself out of the slump without seeing the psychologist, without tablets and without running myself to the ground by not giving myself a break. I had accepted i was going to die at christmas before transplant so i thought it was time i accepted that actually i was going to die but just not yet.

i love this little picture

So here i am, 6 months post double lung transplant.

my 6 moth post Facebook status

I go to bingo regularly once a week with my mum, best friend and her mum and sisters.
I turned 22 and saw the musical i have wanted to see since i first got into musicals.. WICKED!
I have got back into my love of cooking and baking.
I have been getting more focused on moving out and renting a place with shaun.
We are planning a holiday!
I love this life that i live.

After the pneumonia, my lungs hadn't been as perfect as we had hoped and i have needed on and off IV's since. My lungs functions took a dip and my x-ray had some shadowing so broncs are a regular thing at the moment. I did have a phase were things were improving and i was close to getting back to my highest lung function results but then sods law.. i caught a cold and it has knocked me back again. So todays clinic goes as follows:

i am back on IV's for two weeks
i am having a bronchoscopy tomorrow
my lung functions had dropped slightly
my x-ray is no worse than last week
i am still pretty happy.
these things are what i expected, i'm immuno suppressed and colds tend to get on peoples chest regardless of having a lower than average immune system.
these little bumps in the road are so expectant in the first year or so of transplant and i am doing everything i can to prevent them and deal with them so as long as i continue to do so.. what else can i do?

So there we have it.. part 6 over and out!
I have a few more blogs jotted down in my notebook and i am still here so i guess this isn't the end of the transplant journey but the end of the journey so far, now that you're up to date!
Just gonna finish off with a few pictures of the last 6 months <3 p="">

Big Wheel on the pier

Buzz with Buzz ready for Sealife!

Some of my crazy family loving life in Blackpool!

A selection of baked goodies!

Captivated by all of the MEMO's

Alfie & 'MEMO'

A ride on the pier at Blackpool

WICKED

Alfie with all his presents

Dirty Dancing the musical for my dads birthday

Bingo Nights once a week 

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