Always Have Hope

I awoke early for my first morning (Saturday 28th March) back on the civilised ward 38 as today was the day I got my first set of visitors! I had been looking forward to the weekend all week as 2 of my best friends Emma and Emily were travelling up from Leicester to visit me all weekend by staying over in a near by hotel! Dad arrived first to help organise my new found favourite breakfast, honey on toast with a cup of sugary tea! He then helped organise all my medicines and nebuliser with the nurse so I was all sorted for 10am when mum arrived to glam me up! She helped me shower, shave my legs, wash my hair, moisturise, comb and blow-dry my hair and even painted my nails! I even put a tiny bit of make up on for the first time in weeks! Nothing was going to take the smile off my face that day! Waiting for my friends to arrive  At 3pm they arrived and it was all smiles and big bear hugs! We had so so much to catch up on so spent the next couple of hours talking for england befo...

On the evening 14th March, my first back on the ward, I was still feeling very weak and tired so I was given a unit of blood via a transfusion to help boost my haemoglobin and iron levels which would give me more energy. That night I slept the best I had since my transplant, content and comfy on a normal mattress as opposed to the air filled bed sore avoidance ones in ITU. Despite being well rested I woke up on the Monday morning not feeling great at all, I couldn't pin point what was wrong I just felt very groggy and sickly meaning I couldn't even manage any breakfast. On the ward round the doctors weren't concerned about this though and told me how well I was recovering from such an ordeal. I enjoyed a proper shower for the first time with the help of my mum, it was luxury having warm water pour over my skin, I finally felt properly clean and refreshed! The shower exhausted me though so I got back into bed to enjoy a film with my dad and brother, I ended up falling aslee...

After being re-ventilated on the Saturday morning 28th February, the doctors had a meeting with my parents explaining the seriousness of my situation and even suggested to them to call my brother who was working on a ski season in Austria and tell him to get the first flight to newcastle because of the high chance I wasn't going to survive. They were told my lungs were completely infected with pseudomonas along with a secondary infection of pneumonia and on top of that I had septicaemia. My X-ray showed my lungs were a total white out, my feet and hands were purple and frozen to the touch, my mum said I was like a corpse. Along with my struggling lungs my heart was at full stretch, I had now had a dangerously hight heart rate of over 170bpm for over 24hours. My mum, dad and sister took it in turns to be by my bedside constantly, holding my hand and talking to me, willing me to get better. Fully sedated. Mum holding my hand and talking to me while I'm sedated. By Sunday...

On the 19th February I was taken to the brand new transplant ward in the state of the art centre of transplantation, I was given my own room and en suite that could easily pass as an apartment it's that big! I still had 4 chest drains in and had an epidural to control my pain so I wasn't able to move from my bed except for the comode (toilet on wheels) due to all the wires and tubes! 4 chest drains, a central neck line and the dressing on my scar My epidural in my back for pain control I had daily physiotherapy sessions in which the aim was to restore my balance and regain muscle. I started off with marching on the spot, raising my knees nice and high and punching the hands of my physio or doing very gentle arm weights! Punching my physio with gusto! Despite working hard at my physio I was finding it hard to cough up the gunk from the operation and so it was decided to do a bronchoscopy to do a lafarge in which they flush out the lungs with saline and suck back an...

At 8.49am Tuesday 17th FebruaryI received my 3rd call for a double lung transplant! My coordinator asked me the usual set of questions about what my recent health had been like which unfortunately wasn't great, just 3 days before I had been bed or should I say toilet bound with a tummy bug that produced a lovely amount of projectile vomit! Obviously upon hearing this news my transplant coordinator was dubious as to whether or not I was well enough for the operation and so told me she would fist have to contact my CF nurse in Leicester to find out my latest blood results. that include an infection maker, that luckily I had had done on the day previously! After an epic 1 hour and 2 minute wait (10.13am) my phone rang and I answered jangling with nerves! It was good news, my tummy bug must have been a 12 hour one and it wasn't an infection that was hanging around, I had safe infection markers to operate! I was still warned that they would do a full assessment on me when I arrived ...

On the morning of the 27th January, coincidently the morning after I uploaded my youtube video about my false alarm, I received a second false alarm! At 6am my mobile rang but I didn't answer it as it came up with a number I didn't know compared to the usual 'unknown' that flashes up when the transplant coordinators ring. Straight away it flashed up on my phone saying I had a voicemail which I listened to immediately! As soon as I heard the Geordie accent I knew it was a call for transplant! My coordinator said in the message she would try my mums mobile next so I leapt out of bed and pounded on my parents bedroom door with my fists before running in and grabbing my mums mobile just as it started ringing! My parents were so confused and shocked by my wake up call to them it took them a second to realise I was on the phone to newcastle and that they had some lungs for me! Like before we all ran around frantically getting the last minute things packed in our already pr...

First off I would like to say happy new year to everyone reading! I had a lovely time seeing in the new year at my local pub with friends despite being on IV's I was able to stay out until gone midnight by doing my night time dose slightly late! So far though, the new year hasn't been all too exciting and if anything I feel like I'm come to a standstill. It's been a year now since I had to give up work due to my health and to say I miss it is an understatement. It is also a whole year that I have been on permanent IV antibiotics. These 2 things combined are starting to take their toll on my mental strength as you can imagine. My energy levels and lung function are getting lower and lower meaning I'm finding it harder and harder to go out and about to do things so I'm spending a lot of time in bed feeling rather fed up. I feel like my life is on pause whilst everyone else's is moving forward. I think this feeling has intensified over the last couple of week...