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!

Holly
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