Wednesday, 29 April 2015

Diary of a Transplant Patient Part 2

I awoke, with difficulty, in a recovery room (a long narrow corridor type ward with beds on one side and doors on the other). I recall realising I was coming to from the operation and my life was now forever changed. This lead me to tell the nurse closest to me that I was eternally grateful for everything they did. When she told me they were only doing what they were here to do, I responded, 'yes...which is saving thank you'. I remember her murmuring ‘it’s always nice to be appreciated’ as I felt my eyes closing again.
I briefly remember being taken to the High Dependency Unit (the DeWardner Ward), seeing family standing around, and then being placed in a recovery set up with monitors, desks and tubes everywhere. I was vaguely aware of the activity around me as I was connected up left, right and centre then conked out again and waking to find Tom holding my hand and family at the edges of the ward around both myself and Emily (Emily was a good few feet away which made conversation difficult as my hearing was a little off after the operation). 
I recollect needing to see her, so turned my head but still couldn't. I think possibly her mum next to her told her I was looking over, so she sat up best she could and waved, which I returned. I think there was a thumbs up in there too. Remember: the 'I think's I've dotted here and there are because I was still heavily drugged at the time and I'm working with a wavering memory and brief notes. 

After a moment of looking around and trying to wake up properly, I realised I was plugged up to the following:

1.       3 cannulas in the central vein of my neck (what was then referred to as my neck ‘ear ring’)
2.       ECG pads monitoring my heart (I think I had about 6 of these on me)
3.       A catheter which made movement almost impossible as there was risk of lying on it, tugging it etc etc
4.       A drain in my side (to get rid of extra surgical liquid)
5.       3 cannulas in my right arm
6.       An oxygen mask
7.       A gauge on my finger

[Here I'd like to say a huge thank you to those who came to see me so soon after the op. I know I must have been a sight, but I really appreciate your visit. Even if I could only manage a bit of company at the time.]
As I gradually came properly to, my body now seemed to realise I was in fact awake and my stomach decided to say 'hi'. 
I recall shouting, 'vomit', taking off my mask, starting to dry retch. A nurse immediately appeared at my side and presented me with a cardboard tray, which she held.

Then everything happened: 
  • On seeing me have this reaction, Emily started to feel extremely unwell.
  • Tom took over the tray so the nurse could run to Emily. 
  • Having been seated for so long, then standing in a rush as well as seeing me in so much pain (my body was still ridiculously tender post op and was now being forced to physically tense every few seconds. Extremely painful), he urgently requested a seat, then lay his head on his arm on the metal railing, whilst heroically maintaining the bowl in front of my face as I continued to dry heave. 
  • The nurse, now running backwards and forwards proceeded to exclaim 'what's wrong with this family!' something that now makes us giggle when we look back.
It wasn't over for me yet though as I kept dropping off, but was immediately re-woken with bouts of nausea. It could have been minutes, it could have been hours. I just remember it going on for so long. 
They wanted to see if it would stop on its own, but clearly that wasn't the case so I was finally given anti-nausea medication and the vomiting and increased wound pain finally had the chance to subside. So I tried to relax which of course, having just come out of surgery, led to sleep. 
Unfortunately during an operation, although the patient is given air throughout, the lungs no longer inflate by themselves and post op struggle to do so on their own. Each time I fell asleep feeling utterly drained, I'd be woken first by the nurses, then by Tom who said he'd keep an eye on the monitor and me. I'm informed he did this for 2 hours. The next thing I remember is being helped to sit up in the reclining bed, told to take as deep a breathe as I could, not even getting close to what I needed due to the pain in my side and seeing the consultant shake his head. I think they were trying to move me onto a nasal cannula which is the tube that goes under the nose and has two tiny cylinders peeking into the nostrils for oxygen. But they couldn't whilst I wasn't breathing properly…or something. So every 5 minutes, I had to press the miracle button of awesomeness which gave me painkillers, then breathe as deep as I could. This seemed to have the right affect and soon enough my lungs were inflating naturally.

[Due to long days and the nights being interrupted by either insomnia or further tests, 1 day and night in hospital can feel like two separate days. Therefore, the recollection of my days below may be a touch confused]

First night on the De Wardner...

...I was in massive pain, and utterly convinced there were military soldiers everywhere. I thought for the longest time, one was standing by the door. Turns out it was a monitor. My only vivid hallucination whilst I was there. Here I thank the drugs for helping me sleep…especially due to….him.
The one story I really came away with from that ward was: Two beds away was a gentleman who swiftly became known as the difficult patient, as the ward was sporadically woken throughout the nights by him pressing the alarm, then calling 'Nurse! Nurse' literally every 2 seconds for about 15 minutes...or longer. It never seemed to stop.
He’d once even threatened to climb out of bed when he wasn't answered immediately. The nurses did respond to him, but most the time it was to inform him the solution he was looking for was physically within arm’s reach.
Then again, on my first day and night on the ward, I had a personal nurse to ensure I had everything I needed directly after surgery and she was amazing. She’d be there to assist me before I even knew I needed help.
So maybe that's what he'd had on the first night and thought he was entitled for the rest of his stay.

The next morning, my blood sugar level was tested (they use a small device to snip a pin head sized cut in your finger, then take the dose from there and get an immediate result). A look exchanged between doctor and nurse and I was then asked if I had diabetes before the surgery. Nope. 
Well...I had the symptoms of them now. I actually stared at them in disbelief, and then burst into a giggling fit, saying 'of course I do!'
My sugar level being too low, I was put on a course of insulin. I asked the nurse when I could start eating (I was seriously fantasising about steak by now!!) and was informed I couldn't eat until I'd passed wind to ensure my bowels were working again. To my frustration, I could feel something there, but only the type that emerges when you move around. Which I could not. So I distracted myself with my tablet. 
By the time family arrived at 2ish, I was basically awake and myself again. On their being informed of my sugar levels, I was fed (not trusting me to take the whole dose, I guess) a weird tube of pasty gelatine which I then spent the next minute mulling over in my mouth after taking it all. When asked what I thought of it, I looked pensive then responded with a nod of 'mmm......bleh....nope'.
My family, however, are well aware of how often I eat and not having eaten for over 24 hours now, they were sure I just needed food. But they were informed of my state so now it was just the waiting game. This apparently brought out a touch of defiance in me and I apparently relaxed just enough to start sounding off. I was delighted. My parents were also delighted. I, in turn, found their delight hilarious, which relaxed me even more. I could eat! Hurray!!
As soon as another nurse passed, it was mentioned again, that I needed food. 
I was asked for a third time: 'Have you passed wind?' 
I've never stated an affirmation to this fact so exuberantly in my life!
My first meal since….before the operation was soup and yogurt. Sustenance in liquid form so as not to mess with my stomach.
Everyone else popped off to grab a coffee and Tom stayed to keep Emily and myself company. Given how hungry I was, I asked Tom to slowly feed me the food as I would consume it within 5 seconds and make myself sick.
At the first spoonful, my taste buds lit up, my eyes became a little crazed and I warned Tom there was a chance I'd grab it from his hands and just down it so to be on the alert. After eating, it was obvious food was the answer as the difference in energy levels was noticeable.

Tuesday, 21 April 2015

Diary of a transplant patient - Part 1

Approximately 2 months ago now, I had major surgery to both extend my life expectancy and help me feel better for the duration of it, all made possible thanks to Tom’s courageous sister, Emily! She kept a similar blog to me from the view point of the donor:

During my time in hospital, I tried to keep a record of everything I went through, both physically and mentally. However, given I was in for a week and each day feels like two…it became long. So I’ve split it into sections and will (try to) post every Tuesday with a new part of the diary entry.
Any comments or questions plus corrections from family who remember differently, welcome.

[Brief shameless plug while I have your attention: On top of being an extremely generous person by giving me one of her internal organs, she’s also a ridiculously talented graphic designer and created the cover of Tom’s first book. You can see the cover and obtain a copy of the book using the links at the end of the article on this website: or via his Facebook page:]

Diary of a transplant patient

Sunday - Admission: 4pm

About a month or so before the day, I received a letter requesting we attend a particular ward the day before the operation. On arrival, Mum, Tom and I went straight there and arrived and were swiftly informed there were no beds available on this ward and I’d need to attend the one above.
The move, unfortunately, meant there was a slight administrative issue as they now couldn't find my file which had been seen last in the previous ward.

However, step one was complete: safely deposited in hospital with mum and Tom for company.
Realising we weren't actually waiting for anything and we were all just sat around anyway, I suggested they head off home. Especially as I now wanted to unwind before sleeping.
The nurse then quickly popped in and reminded me I couldn't drink or eat anything after 12am as I had to be completely clear for the operation.
After reading for a bit, at around 10pm, I finally decided to curl up and get some shut eye. That’s when I realised the woman in the bed next to me had now been talking for 6 hours. And not quietly either. Ignoring it was unsuccessful, so I finally got out of bed, peered round the curtain and informed her, politely, I needed to sleep, but couldn't if she kept talking. She immediately got out of bed and left the room....continuing her conversation. 
Getting back into bed, I was out like a light. Woke up a couple of times in the night, but that was a given so I slept sporadically, but well. The beds in the hospital were inflatable mattresses with crisp white sheets, comfy pillows and a blanket that looks depressingly thin, but was actually really cosy. Especially as they keep wards relatively warm so you don't really need anything thicker. 

6a.m. the next day...

I woke up, thirsty and hungry and seriously fantasising about pastries, but unable to have anything. Gradually, over the morning, things started to happen. First had a cannula placed in my wrist, then was given a pill, had something injected via the cannula and bands with my details on them attached to my wrist and ankle.
I was then informed that Emily was in surgery (her admission had been at 7.30am) and they'd be calling me down as soon as the kidney was removed. 
The final preparation was a drip attached to the hand cannula : an anti-biotic to prevent potential infections during and after surgery.
A chat with the doctors and anaesthetists and I was a step closer to my own procedure. By now I can't recall if they'd found my notes or created a completely new one for me, using computer based information to fill it in. But everything seemed to be pulling together. 
As well as hungry and thirsty, my lips were ridiculously chapped. I’m talking about a whole new layer of dry on them. I desperately longed for my lip balm. Not because of vanity but I felt like I had glue drying on them. Bleh! I dealt with it, however, knowing I had bigger things to come.

During this time the doctors and nurses all hovered around my bed, making notes, passing on instructions and so on. I continued to wait.
That's when the itching started. However, as I hadn't eaten in a while and my sugar level was starting to drop, I was tired and woozy and despite the back of my head itching like crazy and now needing the loo, I stopped processing logic and didn't think anything of it.
At this point I was asked if I could walk to the theatre. On asking how far the theatre was she looked doubtful and replied 'a bit of a walk'. Nope! So a trolley was called to take me there.
Finally, nature's call became more of a yell and I nipped to the bathroom. The itching seemed to have spread so I checked my stomach...and that's when I saw the rash. A small part of my exhausted brain couldn't be bothered to mention it, but watching hours and hours of 'House' the weeks leading up to the operation, I knew that everything has to be mentioned, no matter how small it may seem. Especially before major surgery.
On leaving the bathroom, I pointed out the rash and the itching to the nurses and the doctors were immediately notified....literally just as one of them came in to announce I'd been called in for surgery!!! Does my body have timing or what?
One of the nurses pointed out I hadn't shown a reaction to anything until I'd been attached to the drip which was the final medication they'd given me. They checked me over, ascertained I was definitely allergic then unplugged the drip. Cue 5 minutes of the doctor (very subtly but his body language spoke volumes), going 'shitshitshitshitshit' as the kidney was now out of Emily and they had to put it into the recipient asap.

For those curious to know what would have happened if I couldn't get the kidney, Emily had been given a form to sign prior to the surgery. This came with 3 possible options:

1.     Return the kidney to the donor (can't be done after it's been placed in someone else)
2.     Give it to someone else
3.     Bin it

Tom, Emily and I stared at the form: 'that's an option?! That?? Yeah sod all the other people waiting for one, let's get rid of this fresh, really healthy one'.

Anyway, the doctor came back every few minutes for 5 minutes, checking my breathing and confirmed my throat was not in fact closing up. The white arm and ankle bands I've been given were replaced with the same, but now in red, so if anyone saw it they wouldn't try the same thing again.
Finally the trolley to take me down was brought in and here the doctor got a touch more urgent, asking me how I was feeling. I told him as gently, yet as defiantly as I could that the itching had gone down, I had no problem breathing and I should be fine. I even took a couple of deep breaths then grinned at him.
Then they received another call to notify the doctor that they had another range of antibiotics down there and to get me there asap. I laughed when I realised they'd just happened to use the one antibiotic I was allergic to. Which I discover literally minutes before my operation. Beautiful.
So we get the go ahead, and I was helped onto the trolley due to now basically having no strength. 
On arrival, I was pushed into a preparatory room just outside the operating theatre. Here I met two very cheerful nurses plus the anaesthetists from before.
Hooking me up to the monitor took 3 attempts as it wouldn't take easily and when it did, one of the nurses said ‘yay! She’s alive!’
At this point, they turned away and I found myself getting emotional. Nopenopenope! I was to stay calm and relaxed. If they saw me get upset and reassured me, I’d’ve gone off on one.
On turning back to me, a mask was slowly put over my face, causing me to cough as it poured some almost flavoured air into my nose, shocking my air canals then watched as the final liquid was injected into the cannula in my hand, thinking ‘this is it’.

I remember watching the world first blur, then heard a faint voice say 'she's nearly there'...and I was out.