Part 5

When I woke up after a couple of hours sleep, the transplant team who were all discussing what the plan of action would be surrounded me. A bronchoscopy was decided and no less than an hour, i was sedated with the camera down.
I came back round fully after another little sleep; they discovered that my lungs were full of sputum, which they had removed for me during the bronchoscopy. My sats were loads better, i had less pain and breathing was much easier again. It scared me though that morning. 
I had gone from having the best day so far on the Sunday to waking up feeling like i was fighting for the breaths again. 
Everyone reassured me that this was normal as it was still very early days for me. 

Over the next few days i was up and down, not health wise but mood wise. Literally, one extreme to the other and it mainly stuck to the low moods.
This wasn’t me; I’m not one of these people that see life through rose tinted glasses. I don’t think the world is the rainbow, lollipops and sunshine world we’d love it to be but I do take things with a pinch of salt, humor and try to see the best in worst situations or at the very least, head down and plough through till the worst is over. I just could not control myself.
I would wake up feeling absolutely distraught, the deepest sadness and would burst into tears without any reason needed.

Many patients go through a stage of guilt. We all know someone has passed away and we have ended up living as a result. We all know someone has lost a family member, a partner and a friend and our family members, partners and friends haven’t. I can understand completely why these feelings of guilt would consume someone who has had a transplant and although it was something I thought about a lot and still do as I think of my donor and their loved ones all the time but I think good thoughts for them and have always done.
I know that person has not died with the main purpose being for me to live. I know that their medical team would have done everything possible for them. I know that that person would have lost their life regardless of them donating their organs or not. Most importantly, I know someone’s wishes were granted and they wanted to give the gift of life to people in need. I can imagine through the darkest times, this gave them some comfort.
I knew this was not feelings of guilt.

I remember feeling so low one day on ICU, the snow was falling down outside and I was sat in my chair. I felt very desperately low; as soon as my dad walked through the doors of the ICU I burst into tears and could not stop.
It was hard, really hard and confusing for all involved. The nurses couldn’t give me a magic potion to stop the tears from falling or these feelings from being felt. My dad couldn’t see why I was so devastatingly emotional as I had waited so long for this to happen, I was over the first few hurdles and possibly the biggest hurdle so far and most importantly as EVERYONE was constantly telling me.
“I have my life back and I can do all the things I ever wished to do”
I also couldn’t see why I felt this way, I couldn’t control these feelings and I was now feeling guilt but not for the reasons you would assume but due to the fact I felt like people would mistake these feelings and emotions as me feeling sorry for myself or being selfish as they were right. It was what I had waited for, wished for and hoped for desperately especially in those last 2 months that had just gone by. They were wrong in one thing though; I didn’t get my life back. I had got given a life.

Leaving school at 16 and having transplant mentioned and thrown around but going to college regardless and then having to drop out in the first 2 months due to a dramatic deterioration in health and therefore, having to rely on wheelchair, NIV (ventilation), oxygen and constant hospital admission that would be weeks and months long.. I never had a life in the first place. Not one that was expected of a 16-22 year old. Then when I got more unwell, the main focus was taking each hour as it comes, let alone each day! Plans for the future where put on the backburner and eventually they faded into the background as everything in my head turned to keeping well, staying well and fighting infections. In December 2014, after the conversation with proff, I had accepted that I was more likely then ever going to die and that the likely hood of a transplant coming along was the slimmest it had been; plus the success rate of a transplant for me was now also at the minimum scale with how reliant I was on NIV and how wasted the little muscle I had now was.
I had gone from planning my own funeral at Christmas to being asked, “What are you going to do with your life?”
It was petrifying because I honestly didn’t know.
What was I going to do with my life?
My life was hospital admissions on Pearce ward. My friends were the nurses, pyhsio’s and other ward staff. I felt safest in hospital because that was what I was used to and it was true; I was safer there with how ill I was. That had been taken away from me and I was so grateful for that and still am now but at the time, it was just scary and I felt completely lost.

Over the next few days of up and down moods, some little milestones were being reached. I had my catheter out which made me immensely happy because it meant I could actually walk to the bathroom and pee & poop alone with a locked door!!!
Something I hadn’t been able to do in a very long time thanks to the massive V60 NIV that had to come everywhere with me in Pearce, the bathroom door was always open. Privacy was something I had almost forgotten existed.
I walked the furthest I had done with the physio and no oxygen or little old lady walking frame! My dad has called me little Flo for a couple of years now (Flo is my nana) he says I am like a little old lady and very much like my Nan so you can imagine his delight when he saw me with that walking frame but I’m certain he was more than happy for that to go! I also didn’t get out of breath once doing this and I can’t tell you how speechless that made me.
I was given my insulin pump back so I could get rid of the sliding scale and the cannula it was attached too!
I got rid of the hospital gown and changed into my own comfy pyjamas.
My oxygen saturations were staying at 96% and above on room air.
I can’t remember the last time they were in that level. It must be around 11-12 years old.

The biggest milestone so far was yet to come though..
I finally got moved onto the transplant ward, Jim Quick. After 2 weeks on ICU; this was a huge step and one that was closer to home!

My room was like a little granny flat, again; much to the delight for ‘little Flo’ references. My first night in that room was so peaceful with no alarms, bleeps, machines or people bustling around. I woke up the next morning feeling determined to not let those low feelings get the better of me. I had been given my phone back so I took regular morning selfies and sent them out via snapchat. Caught up on all the soaps I had missed that week and had breakfast all before half 8. That day I had another chest drain out and was left with just one to go.
I had started to learn and do my own meds as I wanted to be able to leave as soon as I was able to without needing to stay longer to learn all the new drugs and the new regime.

The weekend was bobbing along and my mood was still bouncing from high to low. I braved it and had my first shower post transplant, I was so scared to do so with having my new scar freshly present on my body. I’m happy to report to anyone out there who wants to know that I didn’t feel a bloody thing so don’t know what I was so worried about. It was lovely to get my hair washed properly, dry shampoo can only do the trick for so long.
I started remembering things from when I was heavily sedated with the breathing tube still in. Little snippets of conversations or interactions with people. I didn’t know if I had just made these things up or dreamt them but when I asked people, they were telling me these were in the earlier days and they had happened.

Monday was the day Ruth my physio wanted me to venture out on a walk on the main corridor, my first walk on the corridors since a previous admission. This was so exciting!! I couldn’t wait. I threw my trainers on, threw my foot support on (I’ll explain this a little later) and popped 2 litres of oxygen on through nasal specs as this was the furthest I will have walked and we were going off the ward.
The main goal was to reach the WH Smith shop, when we got there I wanted to go further. I had my own main goal, Ruth just didn’t know it yet. (hehehe!! that is a sneaky laugh)
So we walked a little more to the doors of the x-ray department, we turned round to head back to the ward when I stopped Ruth and BEGGED her to let me walk more and up the little hill to Pearce ward!
She was really reluctant but I promised her I felt brill and my sats were excellent on the 2 litres of oxygen. After a sit down on a bench, she allowed me to go the extra bit to say hello to whoever was working that day on Pearce ward. This would be the first time I would see my nurses and pyhsio’s who had looked after me since I came to this CF unit 5 years ago.
We got to the doors and I buzzed the buzzer.. continuously.
One of the sisters answered, “Stop It!” she said and then I popped my face to the camera and smiled.

Everyone came down to see me who was working and there was lots of a happy faces and even some tears of happiness. As a team, they all contributed to me making it this far, it would have been so easy for me to curl up and just give in but the whole team just keep you going, keep your spirits high and give you all the care and attention they could possibly give. They go above and beyond their care of duty and I can’t thank all of them enough or express how ridiculously amazing the whole team and facility really are.

I mentioned before about popping on a foot support; that is because when I woke up from the transplant, I was unable to lift my left foot up properly or wriggle my toes. This meant that when I was walking, my left foot just dragged along the floor a little, it would make me stumble sometimes so the physio picked up on it, had a little assessment and it was decided that I had something called ‘foot drop’
Foot drop is a muscular weakness or paralysis that makes it harder to lift the front part of your foot and your toes. They say it is quite common post transplant and they’re not really sure why that is but in most cases it gets better and even goes completely.
It’s taken 6 months but I no longer need the foot support and it is only ever so slightly lazy. It just takes a little more effort for my left foot than my right foot and my left foot is still completely numb. It doesn’t bother me and is a tiny price to pay for what I gained.

As a family, it was around this time that we had some awful news and it hit us all hard like a ton of bricks. I shed my tears and then a few more and decided I needed to get myself out of this hospital asap! I had to put the work in more than ever now to get out of here. I had one chest drain left, which I begged to get out because there was somewhere I needed to be in no less than a week. The consultant at the time told me even if the drain come out it was unlikely he would allow me to leave the hospital to attend, I thought this was incredibly insensitive so took an instant dislike to that person. The following day, I asked the other consultant and he promised me if the drain was out I could go and come back later that day and apologized on behalf of the other person.
So in that week, I did lots of physio, got myself on the exercise bike and even did the stairs just to show I was willing to do what was needed of me. The chest drain came out after my first biopsy on a Tuesday and when Thursday 12th of February 2015 came around, I was allowed to leave the hospital for the first time since November 13th 2014. It wasn’t the nicest reason to be leaving the hospital for the first time but as soon as I stepped outside, I took a massive deep breath and smiled. 

Fresh air flooded my new lungs and I took in that moment. How it felt to be able to do that. I couldn’t wipe the smile off my face knowing my Nan would have loved seeing that.

The day went by in a bit of a blur in all honesty. The fog soon cleared when I came back to hospital to see 2 doctors rush in my room with a nurse before I had even took my coat off.
They topped a pretty poop day off with some more poop by telling me the biopsy results had come back with A2 rejection. This is a mild case of rejection that can be treated but it was the first time it had happened to me and it was an emotional day so of course, I cried!
After a frank conversation off my dad, I gave myself a shake and told myself I needed to snap out of this slump because it wasn’t making me feel any better, it isn’t what certain people would want from me and it’s definitely not what I want for myself. I know you can’t control your emotions or thoughts but I thought I would try not wallowing in them and instead, just push myself to push through the down moods as I knew they don’t last forever.

They started me on IV steroids to treat the rejection, I had a 3 day course and by the time the weekend was over I was given the best news yet..

“So what are you thinking about maybe going home tomorrow?”


I just wanted to end this blog with this little post I put on facebook last week. 
It has been all over the news that there has been a decrease in the number of people organ donating for the first time in over 10 years. There has been no increase in the number of people signing up and a lower percentage of potential donors donating. Many of you reading this know me and more than likely are already signed up and on the register but i can not stress enough how vital it is that you talk about it, I would consider it just as important as filling the form online or ticking the box on your license, if not more important. If you are already signed up to be an organ donor but at the time of your passing, when approached by a co-coordinator, your next of kin says no. The fact that you have signed up and want to donate your organs means nothing. They will not proceed with organ donation if your next of kin doesn't allow them to do so.
Your loved ones are more likely to agree to the decision of organ donation if they know how important it is to you now. The subject must be easier to approach now with yourselves than it is for a complete stranger at the worst time of your loved ones lives. 

If you desperately needed an organ, would you be willing to accept one? 
So would you be willing to therefore donate your organs once you've passed away? 
Have you got round to signing up yet?
It takes 2 minutes of your time on your lunch break or while the kettle boils making your brew.
Have you signed up but not really talked about it with your family or partner?
If you have but your family or partner says no, their decision overrides yours and the fact you have signed the register means nothing without the go ahead from those you leave behind. Please sign up but most importantly TALK. Let everyone know your wishes, you never know what is going to happen in life but you may be able to help desperately ill people have a life they can only imagine.
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  1. Kind of feels like your putting a sad spin across to transplantation. I just think you should consider yourself luckie. You write well tho

    1. Thank you for your input and your compliment at the end :)

  2. First of all if you have an opinion then at least have the decency to put your name to your post
    And second of all you mistake her being sad to actually being humble that she has been given a 2nd chance,

  3. it just sounded like she is not thankfull for having her life saved that is all.

    1. whoever you are i think you need to have a strong think about what your saying, im going to guess youve never had a family member who has had a transplant or who has given organs, the family has been on both sides of this, we have a family member who sadly passed and give his organs to people who need them most and also a family member who has revieved organs, she is very thankfull for the organs she has recieved, your assuming things from reading a blog, you dont know sophie, youve never met her im guessing? and she is very thankfull.