Friday, 29 May 2015

The only way is up!

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 before my mum and dad arrived baring a picnic for us! So we all sat round my tiny 'over the bed' table on wheels and tucked in to baguettes, ham, cheese, fresh salad, crisps and fruit it was delicious and the first full meal I ate with out feeling nausea! After scoffing our faces we played cards, a game called 'mammoth' which I was terrible at! Then I made a big achievement when Emily decided she needed a fizzy drink from the vending machine which when we asked happened to be on the next floor up in the relatives room so I decided to test out my matchstick legs and see if they could manage the distance! I succeeded and we had a celebratory selfie in the lift together!

Lift selfie! 
After a few more hours chatting and playing cards Emma and Emily left for the night and I got cuddled up in bed! I was finally allowed back onto my normal overnight feed formula instead of the special formula I'd been on due to dialysis. I was so pleased with this news as I knew that I could tolerate my feed, how many enzymes I needed with it and that it did help me put weight on!

On Sunday morning I was greeted with John who although I only had look after me 3 times in total, was my one of my favourite nurses! This made being woken up at 8am for a blood test slightly more tolerable especially as he had my tea and toast ready and waiting for as soon as the doctor had finished! I'd barely swallowed my last mouthful of toast when Dave my porter arrived, he was pleased to see me back down on the ward and hoped I stayed down now! He took me to have a chest x-ray where I got to see the lovely Diane who worked on reception and always treated me like a princess and gave me stickers despite the fact I'm 23 not 5 years old! 

At 10.30am Emma and Emily arrived and both took a shine to John, like me, they thought he was hilarious and we spent far too long doing my medication just so he could chat to us! At 12ish dad arrived with some croissants for Emma and Emily and a full roast dinner from the canteen for me! I had decided that I wanted my first roast dinner as I'd been craving one for weeks and surprisingly the hospital canteen did a nice one! 

With the weather not looking too bad I decided that I would like to go for a trip to the great outdoors in my wheelchair, baring in mind I hadn't breathed in fresh air for a total of 40 days! I had been confined to the hospital and its air conditioning system all that time! John agreed Emma and Emily could take me out so they wrapped me up in about 6 layers plus 3 blankets for my first outing! Our enthusiasm wasn't even knocked when we saw it had started to drizzle in the time it'd took to get ready, it just meant we had to go to one of the sheltered entrances! As the automatic doors opened I got a good blast of northern air and breathed in with relief! The wind whipped around my face and I shut my eyes in appreciation of this wonderful air filling my new lungs, taking those deep breathes was one of the first moments I started to feel the benefit of them. 
Fresh air time! 
At 5pm we all gave each other hugs and said our goodbyes as they had the long drive home and work to attend on the Monday! Once they had left I was given my 'little red book' which was exciting as it was the first step in the education you have post transplant and another step closer to home! My little red book contains all my medications in a list and their dosage for that day. I have to fill it in every single day so my doctors know exactly what levels of drug I have been on and when. I also have to record my weight and temperature in it. This red book is like my bible and I have to take it to every clinic visit for the rest of my life (obviously one book won't last forever!). It was a really positive step for me as I felt back in control of my medication and educated and informed on what I was taking and why.

Monday morning I woke up with the blues, the weather was awful and I guess I was on a bit of a downer being back on my own after the wonderful visit all weekend from my friends! Mum soon sorted me out with some pampering! I had to have a session of intermittent dialysis that afternoon which lasted 3hours, they took off a litre and a half of fluid and amazingly did a 500ml wee straight after it had finished, this was super news as it meant my kidneys were returning to normal function! We found out from my blood levels that I had low iron and that it would be monitored so they could decided whether to give me a blood infusion or just an iron infusion. Dad had been and bought scrabble so the 3 of us, me, mum and dad, sat and had a game that evening which mum won by miles before we called it a night! 

Filming re-started in full force on Tuesday with lots of interviews asking about what had happened over the last 6 weeks (we hadn't allowed any filming in ITU) and how I was feeling now! My doctor visited me with good news that my kidneys were doing well still but he felt that this week it was important to do a bronchoscopy and biopsy to check for rejection and infection. We decided the sooner the better so I was scheduled in for the next day! My sister arrived by train later that evening but I didn't see her until the next day! 

I had an absolute barrel of laughs on the 1st of April with it being April fools day of course! I played numerous pranks on both the nursed and my sister! I went for my first lung function test post transplant which was both nerve wracking and exciting! I had to breathe into a machine as fast as I could for as long as I could 3 times to get an average %. My % had increased slightly since pre tx but my X-ray was showing I had fluid gathered in the bottom of my plural cavities that stopped complete expansion of my lungs and so as the fluid gradually reabsorbed into my body I was told my lungs would inflate bigger and bigger improving my lung function substantially. My bronchoscopy went well, I was awake throughout but in a woozy state from the slight anaesthetic they gave me! I got to see photos of my new lungs and where the connection was, it looked all pink and well healed! 

I awoke to blue sky and sun on Thursday with my first thought being, more fresh air! I was visited firstly by my doctor with great news to start the day, my bronchoscopy results showed no infection or rejection, all captured by the film crew! My mum dad and sister then arrived with brunch which we enjoyed before finally wheeling me out of the hospital for more fresh air! They took me on a nice little ride around and I had this lovely photo in front of the first spring daffodils!  
Katy, myself and my dad!
The day was filled with even more good news when my renal (kidney) doctor came to tell me that the intermittent dialysis they had planned for that day were cancelled as my kidney function was increasing each day by itself! The afternoon was spent with Katy doing crochet and chatting (whilst also being filmed some more!) I then had a power nap before my Auntie arrived to see me with treats galore! 5 minutes later mum and dad also reappeared and 5 minutes that my uncle arrived so I ended up with a room full! It was a lovely few hours of catching up and feeling very loved by everyone!

When my sister arrived on Friday she had come via the train station to pick up her boyfriend Nile who  had also come to visit me, she walked in asking  'Do you want to build a snowman?', 'YES!' I said and out from behind the door popped a massive Olaf balloon! I was grinning from ear to ear and couldn't stop giggling he was fantastic! 
Me and Olaf loving life!
The physios also bought me a gift in the form of an exercise bike, this didn't quite get the same reaction to Olaf I must admit but I knew that building up my strength was the next building block to getting me home! On my first session I managed 2 minutes, with 2l of oxygen on. I was bent over double after and breathing deeply but... no coughing! I was determined now to go on the bike everyday and build up my stamina so I could get to 10minutes!

Another weekend had come around and this one also bought promise of new faces! 4 of my closest friends were coming up for the day on Sunday and I had decided to ask one of them to go to my house to get me some clothes and my make up and I'd only packed pyjamas and jogging bottoms in my transplant bag! So after spending half an hour on the phone with pictures of my wardrobe being sent and me choosing clothes I was satisfied Ginny would bring all I needed! Katy and Nile spent the day with me whilst mum and dad got a much deserved day off and went out for lunch together. Me and Katy crocheted again and Nile read the papers then we had a game of cards called 'shithead' which I won every time so was luckily never declared shit head haha!
Having a wander around my room!
Dad returned to see me after his day out to keep me company whilst Nile and Katy went to cook a curry for us all for dinner! It was delicious! Afterwards we had a game of scrabble... 

Intense scrabble game! 
On sunday my dad arrived at 8am to help with my tablets and breakfast, Katy, Nile and my mum arrived at 11ish with a lovely picnic breakfast, warm croissant, ham, cheese, jam and fresh fruit! My sister then helped me get ready for the arrival of my friends! At an impressive 1pm, (it's over a 3 hour drive) Ginny, Robyn, Annie and Mark arrived to see me! My mum, dad, Katy and Nile left us to it and went to the coast for the afternoon! I had a lovely afternoon with the girls and Mark, they'd bought me gifts and my clothes from home! It was a lovely blue sky and sunny day so we went on an adventure around the hospital grounds to make the most of it!

Me and my girls! (Annie, Robyn, me, Ginny)
squinting in the super bright sun!
At 6.30 my lovely group of friends had to leave to hit the road and get back home! My sister and Nile arrived just after they'd left with my dinner, chicken curry again! I made the most of my evening with them as they were leaving in the morning and had told me it would be quite a while before they could visit me again! By 9pm I was exhausted after such a busy day and settled into bed ready to sleep by 10! I felt so positive about my first week back on the ward and knew that the only way things would continue was upwards! 

H x

Thursday, 21 May 2015

Going round in circles!

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 asleep though and re awoke at 10pm to an empty room! Panicked I rang mum to find out that Dad and Joseph had left to get some dinner as I was out for the count! Panic over I slipped back into a deep sleep for the night! Again I woke up Tuesday morning nauseas and couldn't eat breakfast, I felt very drained and limp I count even face getting out of bed every movement felt like the hugest effort, my limbs felt like lead and I was vomiting up everything, I couldn't even keep my medication down. The even more worrying thing for me, was that my breathing was now being affected, it had sped up and become shallow. But again my doctor came on his ward round and reassured me that all my blood results (that were done daily) were completely normal and I was doing well, and my breathing was nothing to worry about. Slightly reassured I agreed to a physio session and walked around the ward until I actually felt like my legs were going to give way, it took sheer will power to get through it. 


My doctor returned to see me that afternoon and decided due to my nausea and lack of eating or drinking that it may be dehydration causing my issues so arranged for me to be put on a drip. The evening was spent with my dad massaging my feet and my brother chatting to me and putting Harry Potter on to try and distract me from how awful I was feeling! My mum got me settled in bed so I was comfy to sleep and stroked my legs until I fell asleep for the night.

Wednesday morning dad rang to ask if I wanted him to bring me breakfast but I told him no I didn't and that I felt horrendous. I felt like I was dying, my breathing rate had increased to a rapid level again, my vision was blurred, my face had began to swell with fluid and my energy levels had depleted so much I couldn't move or barely speak, the only words I can remember uttering that day was to my dad 'I need help, get them to help me'! I couldn't believe what was happening, how had I got so poorly again so quick, had the infection returned? The thought of repeating what I'd just been through filled me with horror and devastation; I didn't know if I could find the will power to do it all again. My doctor came twice that morning and was concerned about how nauseas and awful I felt so arranged a meeting with the other respiratory doctors, renal doctors and microbiologists to discuss what could be wrong, he returned with the news I was to have a new anti sickness injection another drip to address my dehydration and remove 3 antibiotics from my medicines to give my kidneys a rest. After receiving my latest blood results from that morning and after talking to the renal professor I was finally diagnosed with renal (kidney) failure and a severe case of acidosis in my blood. Because my kidneys were failing, no toxins were being taken out of my blood stream and so I was basically being poisoned by the toxins. Co2 levels also built up in my blood and this is what made my brain signal to my lungs to breathe faster and feel breathless despite how much oxygen they gave me. It was decided by all of us that returning to intensive care for a 3rd visit was the best solution to my problems as I could have a dialysis line fitted and be on the CVVH (dialysis) machine 24/7 to clean my blood of the toxins and give support until my kidneys started to 'wake up' and start working again.

That evening I was wheeled back to ITU and was met with a sea of friendly faces! It was a relief to be back and know that they were going to make my kidneys better. It was 7pm when they came to gain access and put a dialysis line in my neck, it didn't take long and after scanning it they were happy it was in the right place and would work! But, as you can guess, nothing was simple with me and despite it looking good on the scan it didn't work properly; you could only push into the line not draw back and you need both to work as you blood goes out, through the dialysis machine then back in like a circuit! So back to square one, they scanned the other side of my neck to look for veins but none were suitable, all had already been used multiple times from my last ITU visit! So the team resorted to inserting a line into my groin (top of my thigh) as I had a big accessible vein there. They finished at midnight and I was exhausted! My mum and dad were allowed to come and see me before saying goodnight!

Thursday morning after just one night of dialysis I already was feeling the benefits. The only bad side-effect of dialysis is that it makes you extremely cold because the blood, although heated upon re-entry to the body, is still not warm enough and so you feel freezing! I had the special heated blanket back on and then about four blankets on top of that tucked right up my neck! I looked like a floating head in the bed which made everyone giggle! I managed some snacks that day and didn't sick them back up which was the first step of progress! I slept like a baby that night from 8pm through until morning!  I had had over a litre of fluid taken off me that night which was really helping my kidneys to recover! Over the next 2 days (20th & 21st March) I had a lovely nurse called Nikita, I sat back in my chair for a few hours each day with her and we had so much in common we chatted the days away! Whilst Nikita was looking after me we received a phone call from vascular access saying I was to be in surgery in 20 minutes! Both shocked she had to disconnect all my drips and wheel me down to the department where I had a tunnelled Vascath put into the right side of my breast bone. The line was inserted in between the gap of your shoulder and armpit and tunnelled under the skin up to my jugular in the bottom of my neck/top of my breast bone! I had local anaesthetic for the procedure which took about an hour! (I couldn't keep the line in my groin as it was restricting my movement and physio sessions too much as well as not being in a good place infection wise.)
The a diagram showing the position of the vascath.
This was the tubing you could see on the outside a double ended lumin.
My brother returned to Austria to complete his ski season as although I wasn't completely better I was making good progress! I promised the next time he saw me I'd be in my own clothes and walking unaided! By Monday 23rd I was able to come off the CVVH (dialysis) machine and was told from then on I would be having it intermittently! Due to my continued nausea my anti rejection tablet was changed from Cyclosporin to Tacrolimus. Over the next few days I did more physio like walking around my cubicle, marching on the spot and standing up from sitting without using my hands to help. On the 25th my dad arrived as I was doing my physio and I was able to go and give him my first proper standing hug since transplant it was a very special moment! I had my first session of intermittent dialysis that day and I went for my first wee since having the kidney failure which was a cause for celebration! My nurse Rachel, was a beauty therapist before she trained as a nurse, so insisted on pampering me from head to toe! She gave me a fabulous manicure and moisturised my arms and legs where my skin was really dry from the dialysis as it 'drys' you out! I felt pretty and human again! My room became known as the 'chilled' cubicle and I constantly had nurses popping in for a chat and gossip, it made the days pass quicker and saved me from boredom!

On the 26th I finally began filming my journey with the Channel 5 film crew again as they hadn't done any since the shots of me coming round the morning after my transplant! We did an interview explaining what had happened over the last 5 weeks as well as a consultation with my doctor. They were really pleased with the footage they got! I spent the rest of the day doing physio where I managed to give my mum her first standing up hug which again was an incredible feeling! I also had a photo with my parents!
Last day in intensive care!
I woke up on the 27th after a bad night sleep that included nausea and stomach ache. I was very tired so when the physios arrived extra early at 8.30am I had to really push myself to get up and moving! I walked laps of the room and decided that I would draw the blind on the internal window in my cubicle that looked out onto the nurses station. I was expecting to see the ward sister sat there but instead was greeted by the 20 medical individuals that make up the transplant team in a huddle right by my window who all stared at me in disbelief before smiling and waving as I waved back! At this point my Professor had his back to the window as was stating he thought I was still too poorly to return to the ward, little did he know I was right behind him! His colleague, my anaesthetist tapped him on the shoulder and told him to turn around stating 'that girl no longer fits ITU patient criteria, look at her!' And so the decision to move me to the ward that afternoon was made! That afternoon I had another intermittent session of dialysis whilst my nurse packed up my things! Channel 5 came and filmed me being transferred from ITU back to ward 38 this time into room 14 (right by the nurses station to my relief) and interviewed me on how I felt about finally leaving ITU for what we hoped was forever!
That evening I was beaming with happiness despite being apprehensive to be back on the ward when the last 2 times had ended so badly! My doctor came to see me just as I was tucking into my dinner, he was talking to my dad as I was hit by one of the waves of nausea I had been suffering and unable to control for weeks! This was the first time my doctor actually saw how sudden the nausea came on and how violent the sickness was, shocked by it he immediately came up with a regime to stop it. I was given anti sickness more regularly and given Domperidone again, a CF tablet I'd been on for years but had for some unknown reason ended up not being prescribed since transplant. It was a really important tablet for my digestion as it helped and sped up the emptying of my stomach so food didn't sit and almost ferment in my stomach and be vomited back up! Happy with the plan I slept like a log that night suffering no nausea at all!

I knew and felt confident that I would be okay back on the ward and looked forward to showers again (bed baths only in ITU) and the freedom being on the ward gave me, especially non restrictive visiting hours!


Sunday, 10 May 2015

Sleeping beauty, or not!

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 morning 1st March, things had took a turn for the worst, my heart rate was still extremely high and there was no improvement in my lungs, worst still they had almost lost me in the night and only just managed to save me. Things were not looking good and the doctors were in discussion about the best thing to do to try and get me better. The group of over 20 people in the transplant team were in 2 minds, some thought I should be put on an ECMO machine which would take over my heart and lungs whilst other thought I should be put in the 'prone' position first and see if that yielded any improvement.
The diagram above shows how ECMO works, 1 tube is inserted into the inferior vena cava vein in the groin and threaded up into the heart, a second tube is inserted into the superior vena cava vein and also threaded into the heart. The blood is pumped out in the inferior vena cava where an oxygen sensor senses the o2 saturation and if it is low it is topped up with oxygen when pumped into the lung membrane, the blood is then warmed as it continues along the circuit back into the body via the superior vena cava.  

The figure above shows the prone position, the advantages of this position are it lowers pressure on the lungs as the heart is not pushing down on them, in turn the lungs are able to expand more, taking in more air and improving oxygenation.

My Professor in charge had the final say and decided to turn me prone as he didn't think I would survive the invasive procedure to attach me to an ECMO machine and even if I did he doubted I'd improve or ever wake up again. So the afternoon was spent turning me prone, involving a huge team of nurses and doctors. My eyes were taped shut, my head was placed on a gel cushion to prevent sores on my cheek, I was given stronger sedation and a paralysis drug so that I couldn't move nor wake and become distressed during the period I was prone.

My brother arrived at the hospital on Sunday evening, the nurses had to talk to him before he was allowed in to see me so that he wasn't completely shocked by what he saw as obviously the state I was in was very scary and not nice to see.

After my brother left I had another sudden turn for the worst and I was on the edge of life once more, again they managed to save me but it just shows how much stress my little body was under. On Monday morning 2nd March I had re-stabalised and my doctors had another meeting with my parents to discuss the possible outcomes of my current situation. There was a chance that when I regained consciousness my lungs wouldn't be able to cope without the ventilator and would be as irreversibly damaged as my old ones were. They said the next 5 days were crucial in seeing how I got on.

By Monday evening I was turned back around the right way out of the prone. You can only be safely in the prone position for up to 2 days due to the high levels of sedation required in the prone period. As the sedation was lowered, although still enough to sedate a horse according to the nurses, I started to become more aware of my surroundings and was in what is classed as a 'twilight zone' in which I could hear everything that was going on around me but wasn't bothered by it. However, just being able to listen wasn't enough for me I wanted to communicate and so I fought the sedation all that I could! I began to gesture in my own made up form of sign language as well as being able to answer questions by squeezing my hand in theirs or wiggling my feet for 'yes' or not reacting for 'no'! I wasn't content with this though and so they gave me an alphabet card in which I could point to the letters to spell out words, great idea but slightly useless to me as the one part of sedation I couldn't fight was having my eyes closed, just opening them a fraction was almost impossible for me so the alphabet card was scrapped!
Not interested in the alphabet card!
Over the next few days I remained stable and believe it or not whilst in my twilight zone I finally had my hair washed after a month with the help from an 'elephant ear', 1 nurse, my sister and my mum! I have a few sketchy memories of this happening! My head was placed in the 'elephants ear' which acted as a basic and they did the full works, washed, conditioned, combed for about 2hours and finally blowdried and re-plaited my hair! Who knew you could have the full salon treatment in ITU!
Washing my hair!
Trying to comb it through!
Hair wonderfully re-plaited!
As the sedatives were weaned even more I began to get horrible withdrawal symptoms, the sedatives were a kind of opiate and so as I withdrew from them I has convulsions and shakes from anxiety attacks in which the nurse would have to call my mum as she was the only person that could calm me down. I had strange and horrible dreams, my mind was in a very bizarre and strange place that I would liken to a labyrinth. I would be very confused in my wakeful periods in which I could now open my eyes, on one occasion I woke up asking 'whose birthday are we celebrating' and was puzzled when they told me it wasn't anybodies birthday! I also started to write things down on a clipboard, I struggled to keep my eyes open to write and my hands were uncontrollably shaky but I still managed the odd legible word or so. I would wake up thinking people had visited or rang me but they had just been hallucinations, below is the a piece of paper I wrote Gerard, my dads cousin, had rang me at 5am, I was convinced he had yet when dad checked with the nurse there of course had been no phone call!

My favourite thing that I wrote was asking for was a selfie with my brother! Every time I saw him I thought it was the first time he was visiting me so would greet him with shocked eyes and a huge smile, sometimes I even tried to pull my ventilator out to try and speak to him! I asked for the selfie as proof he was there as I didn't know if it was another hallucination!

Selfie I asked for with my brother! I tried so hard to smile with the ventilator on and I couldn't keep my eyes open either!
On March 6th I started to lose some tubes; I finally had my last 2 chest drains removed, what a relief! They also began to wean how much support I was receiving from the ventilator! By the night I was breathing alone via the ventilator with no support and my blood gases were remaining at a good level! The ventilator was finally removed on the 7th and I was transferred onto high flow oxygen, such a positive step to recovery!

I had my first really good day on the 8th of march, my dialysis was disconnected so another line down! My high flow oxygen that is delivered via a mask was changed to a more comfortable nasal cannula. When the physio visited me that day she decided it was the perfect opportunity for me to try and sit in my chair, so with hers and the nurses help I managed to stand from my bed and sit into my chair, a big move after 2 weeks laid in bed! I managed to sit in my chair for a few hours and enjoyed my first cup of tea since coming off the ventilator!
First time sitting in my chair!

Over the next few days I continued to sit out in my chair for hours at a time, it was so important to sit and have that change of position from the bed, sitting upright helped my lungs expands and move any secretions (mucus) I had in my lungs still from the infection! I began to start eating solid food again instead of just relying on the NG feeding tube. Because I was now stable and awake I was no longer allowed visitors all the time, I had to have the strict ITU visiting hours of 2-10pm. That may sound generous but when you are awake from 6am onwards that 8hours until 2pm is a lifetime, I would stare at the clock willing it to go faster so I could have my parents back by my side! I tried to distract myself with day time tv, I had a very well organised routine, I knew what programme and channel at what time! I hated hospital food so would have toast with my own honey mum had bought for me and a cup of tea! At 2pm on the dot mum and dad would arrive with my lunch! We would spend visiting hours talking about my progress and things I was looking forward to doing when better. My parents would read books to me or the well wishing texts they'd received, we'd watch films or any good TV programmes! One day would blur into the next as we just waited for my body to get stronger and recover!

I had a bronchoscopy scheduled for the 12th March as I was now almost 4 weeks post transplant and that is the time of your first biopsy! My mum was allowed to arrive at 8.30am that morning to wave me off to the surgery but an emergency case came in and so my bronchoscopy was delayed until 4pm! I was nil by mouth and absolutely parched and starving, it was such a relief when they finally took me down! I was only given a throat numbing spray for the procedure, no general anaesthetic so it was quite scary being in the big operating theatre like the one my transplant would have taken place in, wide awake! It was all okay though, they put the tube down my throat into my lung which made me splutter slightly and obviously it wasn't the most comfortable thing but it was over in 20 minutes and whizzed back to ITU where I soothed my throat with an ice lolly and enjoyed dinner with my parents! 

The 13th was the day I began to feel human again when I put on my own pyjamas and dressing gown for the first time instead of wearing the hospital gown! It was so much cosier! The physios turned things up as gear too, quite literally in fact! They bought in a pedalling device in which I could sit in my chair and pedal with my hands or feet! I managed a whopping 6 minutes which is pretty incredible after 2weeks of being completely bed bound and having lost all muscle tone!

Happy in my own 'clothes' and pedalling away!
I was deemed infection free on the 14th and well enough to move from the cubicle I'd been confined to out into a bay or as me and the nurses called it 'our den'! I also had my hair washed again and totally relaxed and enjoyed the whole experience of warm water flowing over my head! It made me crave a shower instead of the bed baths I'd become accustomed to!

My lions mane of hair before washing! 
The elephants ear ready for washing!
On the 15th I awoke to the news from my doctor that I could leave ITU and return to the ward that, just in time to celebrate mothers day! I was overjoyed and by noon I was settled in room 15 on ward 38! My brother and sister were first to arrive to visit me, no more restricted visiting times on the ward, wahoo! They had bought me a pack of liberty print cards from which I chose one to write to mum for mothers day which I succeeded in doing despite my shaky hands! They'd also bought some chocolate which we wrapped too! 
First family photo with me with new lungs!
Laden with shopping bags mum and dad arrived after their pyjama shopping spree for me! We gave mum her cards and gifts which made her so happy, we were back together as a family with me doing well, we even had our first family photo! The day was finished off with a McDonalds that I'd been dreaming of for days a chicken nugget happy meal and a McChicken sandwich! I was in heaven surrounded by my loved ones and back on the ward on the road to recovery! 
Tucking into my burger! 

Friday, 1 May 2015

The start of the roller coaster...

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 any mucus that is there. I was under general anaesthetic for this first bronch and it went smoothly, I just awoke with a slightly tender throat which was easily helped with an ice lolly!

Everything seemed to be going okay until gradually I started swelling up on my legs, ankles, face and neck and on the 24th feb when I woke up this is what I looked like:
my right cheek started to balloon out and my neck swelled 
Weds 25th, swelling increased, could barely keep my eyes open!
I awoke on Wednesday 25th February happy and free of pain however the swelling had got even worse and moved up to my eyes to the point I literally look like I've been morphed in a fat booth iPhone app but nope, this is real life 'surgical emphysema' where the tissues fill with air. Nobody really fully knew but the guess was that the air had been leaking from my lungs into my body tissues. There is no way of getting rid of the air except to wait for it to go by itself. I must say we all had a giggle at the fluid and air that had gone to my ankles, with my feet squished into my little 'granny slippers' I looked the true part of a granny!

Swollen feet and ankles in my granny slippers!
Despite the swelling I enjoyed my first fry up since transplant! However at mid day the doctors instructed that my epidural was removed but what nobody seemed to realise was that I didn't have substantial oral pain relief levels to take its place. As the epidural wore off, the pain got to agonising levels, particularly from the 4 chest drains, it felt like I had 4 red hot daggers in me. Things are a bit of a blur but basically the nurses didn't realise the extent of my pain and at 2pm I was sent of for a CT scan that a doctor had ordered that morning without realising the epidural would stop and the pain issues that would arise. Just getting wheeled on my bed to the CT department was torturous, every little bump caused a tsunami of teeth chattering pain across my chest leaving tears dripping silently down my cheeks. I was taken into the CT scanner room where I had to be transferred from my bed to the scanner, this alone was a tricky task as I had so many tubes coming out of me, trying not to pull at any or tangle them together needed about 4 peoples hands! Eventually I was laid onto the scanner and they could begin the scan, I thought to myself as long as I just lay here like a statue I can cope with this pain. To my absolute horror, I was instructed to raise both my arms above my head for the entirety of the scan, I felt like screaming and howling in pain, I have never in my life felt anything like it. My entire chest was on fire, it felt like it would burst open, tears poured down my cheeks as I squeezed my eyes shut willing the scan to finish, the scan lasted 10 minutes and by the end of it my body was uncontrollably shaking from the pain, I was grey faced and felt like I was going to pass out. On my return to the ward, the severity of my pain was realised when I rated my pain score of 100 and the scale is only 0-10! The pain nurse was sent for straight away, she arrived and was devastated to see me in such a state and rallied around to try and find a solution. In the end she had to go and get an anaesthetist from intensive care to come down to me and actually inject local anaesthetic around my chest drain sites at 2 different depths. The sting from the local anaesthetic being injected on top of the current pain caused me to cry out helplessly. I don't remember much after this, I think I was finally able to cope with the now reduced pain level and was a bit of an exhausted rag doll willing for things to get better...
By the evening my pain was under control and I was comfortable just in time for the arrival of my sister at 7.30pm, I was so so happy to see her and have my mind distracted from the days events!

The next day, Thursday 26th, I woke up to see my face had miraculously halved in size much to my relief!
Slight more recognisable!
It was a positive day in which I had the 2 basal (higher) chest drains removed and my catheter removed meaning being able to move around became a lot easier! I now only had 2 drains to navigate and keep untangled and so the physios decided that it was the perfect day for my first walk, I was able to walk the length of the corridor on the ward completely unaided even if my legs did feel like jelly and look like Bambi! My day was spent in my wonderful sisters company,  and we were treated to yummy homemade food from mum and dad and we enjoyed a 'family' (minus my brother) meal in the confines of my hospital room, salmon and veg risotto!

The following day Friday 27th, 10 days post transplant was what turned out to be the most scary and horrific day of my life. I awoke at 6am drenched in sweat with an extremely high temperature of 38.6'C, I felt terrible and rang my mum panicked asking her to come to see me straight away. Mum arrived which reduced my anxiety but nothing could cool me down. At 8am I started to cough to try and shift some mucus but ended up having difficulty breathing. I was put on oxygen and my sats were still only 87% (below 95% is bad) with the standard oxygen making no difference I was put on humidified oxygen at a higher setting. I sat on the o2 in a daze, all I could do was think about breathing and keeping myself alive, I could feel my heart beating faster and faster as the hours past which caused my anxiety to rocket in turn making my heart beat even quicker and my breathing even harder. I was poked and prodded for arterial blood gases and peripheral bloods to test infection markers. I was struggling so much I sat limp not even flinching when they pricked me. Listening to my chest they could hear an abundance of crackles, suggesting an infection. By the evening ITU had been alerted to my declining situation but they had no beds available for me so an outreach ITU team was sent and it was decided by them at 10pm I would be put on a C-PAP machine until I could be taken to ITU and assessed there.

By the early hours of Saturday morning I was still on the C-PAP and getting weaker and more exhausted with each breathe, I was in a nightmare, I thought of all the things I hadn't said to people and worried I hadn't planned my funeral enough because quite honestly I thought I was about to die. I was finally transferred to ITU at 7am I think where I continued to be on the C-PAP. I had reached desperation point and I turned to my mum and told her 'I want to die, I've had enough, just let me go'. They were the hardest words for me to say, ones I never thought I would say and obviously for my mum they were heart breaking. She squeezed my hand and stroked my head sobbing telling me 'NO, don't give up, we love you so much and can't live without you in our lives'. And so, despite trying to stop my self breathing the C-PAP didn't allow it and I continued on the rhythm of breathing. The doctors who witnessed all of that realised it was time to let me rest and re-ventilate and sedate me. I was told to say 'see you later' to my parents as I was warned I could be sedated for a while which I understood. Finally at 10am my struggle ended as they sedated me and re-ventilated my poor brand new little lungs. I awoke after the re-ventilating procedure and was able to see my parents once more where I mouthed 'I love you mum' before the sedation was increased and I entered dream world.

I was started on high dose steroids, a cocktail of 9 antibiotics and dialysis in the hope I could recover.

Fully tubed up in intensive care
To be continued...


I hope you understand that writing these blogs is very emotionally draining for me and so it is a slow and steady process meaning I have had to divide them up so you're not waiting forever for a post as there is so much to write! I will tell you the full story in good time I promise!