Thursday, 2 July 2015

Final Diary of a Transplant Patient - Part 5

Video Archive:

Part 1
Part 2
Part 3
Part 4

Ok, not going to lie, it's been a while. Ok...a month. I'd not realised it had been that long.
Reason being, I'm now restless to get back to work and I've been concentrating on putting projects together to stop me going stir crazy. Over the passed month, I'd actually written up a selection of posts, but then realised they were mostly based on 'what my new hobby is' and that's not the point of this blog.

I've also realised that as I steadily improve and get distracted by the everyday, I find it difficult to keep working on my hospital posts as I relive the experience, the last few days having been the most difficult. Therefore, I'm going to put it to rest in one, long, final post.
That way I can start updating on my actual progress and even slip in some advice here and there rather than constantly referring each week to what happened....5 months ago now.

So here you go....the final entry:

[Previous post reminder...I'd just fought about 2 hours worth of steroid injection which prevented me sleeping and this is the next day]

Saturday - now back on track as it was the weekend

[At this moment, the writing I did in hospital becomes a touch more erratic due to my sleep deprivation. I've been told by a lot of people I was immensely brave, but I'm not going to lie...I had strong moments of depression which I was pulled from socially and by writing in my blog. Also really didn't help that at this moment, the steroids were nudging at my temper]
When I finally got to sleep, I had amazing dreams which were sadly interrupted by my dire need to constantly pee. I was producing so much, I was having difficulty catching up via my intake.
The crunch of that evening's sleep came around 5am when a nurse decided to remove something from my ward mate's machine and leave it....bleeping...for ages. I could hear her complaining and couldn't blame her. Knowing most my companions were bed ridden, I finally got up and asked someone to sort it out as we were desperate to sleep and was told 'someone's coming soon'. They certainly weren't in a rush. I couldn't recall whether I fell back to sleep or not, but the next time I checked the clock it was 8.30am and the hospital was awake and active. I was awake...certainly not active. 
Frustration began to kick in as the nurse asked me how much I'd had to drink from 1am and I said one cup. I'd been desperately trying to sleep most the bloody night! [here I became frustrated]...It's all very well telling me to drink, but I need to sleep over peeing too. I was so tired. 
I was then presented with breakfast and after eating that, proceeded to wait for rounds to happen so I could finally have a nap. I honestly couldn't recall the last uninterrupted night's sleep I'd had. My insomnia had started early, back at home when anxiety over the surgery kicked in and now it just seemed to continue.

Having suffered one of the worst nights yet, my rising depression was soon subdued by the knowledge that Tom had finally slept 12 hours so he was ok, mum got the chance to wash my hair, I succeeded in drinking more and I'd squeezed in a nap before more guests arrived so when they said I looked well, I felt it too. So despite a crap night, the day turned out well. 
  • 10pm - no nurse yet so figure 'screw it I need sleep' and curled up.
  • 12am - was woken for new cannula installation, but not the drip. I was now going mad for need to sleep. After more waiting, I got out of bed and mentioned to one of the nurses that I needed sleep and would the drip be attached soon. I returned to bed to hear a call being put in, asking someone up asap. Finally, drip was attached....then....
  • Insomnia kicked in. I was exhausted and desperate to sleep, but the whole waiting for the drip woke me up so I was forced to sit up and watched a film.
  • 2am - finally conked out again
  • 4am - woke up desperate for the bathroom. Dragged everything I was still connected to there and back, went to sleep....
  • who-knew-anymore am - only to have the empty drip alarm wake me.
Drain removal - (slightly graphic)
I'm not going to lie....this hurt. But it was a ridiculous relief. It also explained why nearly every movement which required stomach muscles seriously hurt!
Doctor confirmed that my stats were much better since going back home and gave me permission to leave. That was around 10am. Waiting on the meds and the paperwork.....I finally...finally....left at 4pm. All just waiting around. 
  1. take one batch of pills and an injection
  1. swirl anti fungal liquid around my mouth and wait 15 minutes
  1. eat breakfast then wait for full food digestion 
  1. take anti rejections tablets at 10a.m
  1. Then relax. 
For now, no more sleeping in or unregulated snacking until after 10am. So this morning mum dosed me with one bagel, then a second when that wasnt enough, plus orange juice. 
And now

In hospital, it's the little things that keep your spirits high. Napping when you can is key.
By now I'd been told there was a good chance I'd be leaving Monday. I knew if I didn't, it was for my own benefit. However, my original consultant came to see his patients and told me I had a new sparkle in my eye. This made me ridiculously happy.
When everyone had left, I dozed for a bit more then sat with mum and Tom for a bit.
This is when I received a sodium tablet designed to encourage me to drink more (urinating 5 litres when I was only just managing to just about drink 3).
I knew I was already feeling better when I stared at the thumb size tablets and quipped 'I have to swallow those?!'. The nurse gave me a look of 'really??' and said 'noooo you silly girl, they're soluble' which made me crack up.

Another appalling night. I received another steroid injection, but this time knew what I was in for so turned to distracting myself rather than sleeping. I was then informed I needed a new hand Cannula for my drip as I wasn't drinking enough. Then the following occurred:
Now the issue with drips is a selection of things:

1.     If you lean on them and close the pipe off, they make an alarm
2.     If the machine isn't connected properly, they make an alarm
3.     When it's empty, it makes a different, equally annoying type of alarm. 
4.     If they feel offended by the look you just gave them, they make an alarm

They replaced the bag swiftly enough, but I was given a dodgy machine and the alarm....would not...stop.
I was just about able to ignore it as it was a steady noise which I could acclimatise to. What bugged me was the soft complaints coming from the other beds....which acted as a reminder that it was still going off.
The nurse finally got it working, then rounds started. My fluids were confirmed as being too unbalanced. The day before, I'd been pushed and pushed to finish 4 litres of water and I'd finally, proudly, done so. Now I'm told I'd urinated 7 litres in total. You have got to be kidding...
The doctor made a comment about this being a problem, and as soon as his back was turned to talk to a nurse, I realised the only thing really keeping me in hospital was something I appeared to have no control over: my water retention and my weight. If I couldn't retain water, this was bad for my weight and my new kidney. I was doing everything and that wasn't enough. The exhaustion and once again rising depression I'd been hiding hit me. I became quietly tearful, trying to hide from my audience. On turning back, he saw my expression and asked if I was ok.
I quietly informed him that I suffer depression, was barely getting any sleep and was now deeply frustrated as, despite being fine and doing everything I'd been told, I just wasn't getting any closer to that finishing line. He pondered for a minute then gave me a drug to help me retain fluids. To which I asked myself 'and why hadn't this been given to me sooner??' 
I'm guessing they wanted to see if I could manage by myself.
The hope that I'd be out Monday increased....but I wasn't expecting miracles.

To cheer up a somewhat crappy day, I was told the drain (the last item permanent item attached to me) and the drip were being removed. That and...even fluids were now finally balancing.

The drain (a long thin straw like item, a few inches long) went across the width of my stomach. Having healed and scabbed against my innards, every movement nudged it, causing me stomach pain. 
The nurse carrying out the procedure explained what she was going to do. She then cut away the small stitch holding the drain in place, gave a gentle tug to loosen it, then, looking me in the eye, asked if I was ready. On a nod, I took a deep breathe and she pulled. 
My first reaction was appreciation that she'd told me the length of the drain beforehand. She wasn't kidding about how long it was.
The cut was bandaged and I felt....amazing. I could now move...almost completely unhindered as I still attached to the drip. When that was emptied a couple of hours later, although I still had the cannula in my hand, I was...finally...fully disconnected. From everything. I could have twirled if I wanted to. A full twirl would have taken me out, so I stood out of the bed where mum and Tom were sat, and did a very gentle circle, then turned back and flashed them both a grin. Then I recall stating 'wait! There is something more important I must do!' And I ran to the loo...unhindered.
Sneezing still hurt like a buggery...but frankly...I didn't care.

Now I was basically myself again, I was requested to talk to medical students. Seems there was a registry exam or something happening at the time, so they were told to speak to specific patients. Here's when I realised how much I enjoy helping people on that subject...
I was a Kidney Research UK volunteer before the operation. I plan on returning to that when I'm back to strength.

Sunday night saw me asleep at 12.30am. Not due to insomnia this time, but now I was completely freed it occurred to me I'd basically had bed rest for a solid week and I was walking around and had energy once again. I didn't really feel like I needed sleep. Woke up in the night to drink and pee then woke again at 7am. 
A jolt of shock and emotion hit me. There was a good chance I'd be going home....there was a good chance I would not be. And I was terrified. Questions started flying through my head.
[this is the only real reference to Sunday night as I must have been fully focused on my possibly going home the next day. No reference to noises, interruptions or anything like that]

Monday - confirmation day

[Rounds then started...the following is dry extract from Monday which was one of the most emotionally intense days I'd encountered in hospital. The first sentence describes how I felt from the moment I woke up, to when they finally reached my bed

I remember this now...on Sunday evening, around the time I'd wind down, I ran out of data on the tablet. The shock that hit was so emotionally intensive, I'd realised that that's what had kept me sane all this time as I didn't have the mental capacity to play games or read. Depression at the idea of facing another day in hospital hit so just about managed to calm myself down with the idea of potentially being able to go home the next day...which is why I was so wound up]

Doctors are walking round ward. Impending decision in a few minutes. Oh god. Adrenaline ruhing through me....
They're still worried about certain levels in my system,  [I'd then asked them if I couldn't just pop home for a couple of parents lived just 15 minutes away...the consultant pondered again, then agreed much to my absolute delight] so I'm being allowed out for some fresh air, to see my parents and eat things I dont think I'd get in food form here....then back for a weight in tonight. Im already dressed, packed and ready and feeling the difference. Genuinely no problem if I have to come back!! Just being dressed and knowing I can go out is helping...

So went home, ate ALL the food, saw a friend, relaxed, then came back in time to see the day nurse and doctor. They informed me the 4 month pregnant belly [which came about after I'd eaten and drunk and suddenly had us all genuinely worried] I had should be normal though I'd be having night blood tests to check that , but good news, I'd actually put on weight which is what they wanted.
Might be discharged tomorrow....will see how things go.
Unplugged, happier, cleaner (after mum hosed me down like a cat), in pjs instead of robes and have more data on tablet so yay.

[direct extract from hospital being...back home] 

Got home, settled in, had dinner, watched tv, went to bed at 11ish....oh my god.
I've.....just.......absolute bliss. Silence. Dark....and the bed was ludicrously comfortable. I'd anticipated insomnia to prevent any possible frustration in trying to sleep...but no, i got a couple of pages into the book and began drifting off. You know how in cartoons they show a character drifting off on a bed of clouds? That.
Woke once at 4am to urinate, then back to bed. Awoke at 8 and was keen to stay on in bed, but then knew I had to get up as timing regarding my medication is essential:

Now I'm sat on the sofa, enjoying my freedom by idly passing the time. Can't do much else unless it's cerebral. 
Pains: i'm currently in my jammies cos although I took great pleasure in putting on jeans when I left, whatever I take in, immediately increases the swell of my stomach and make it ridiculously uncomfortable to sit down. So draw strings for the win. Seriously..this is like pregnancy preparation! I have the obvious pain around the wound site which gets worse when I try and tense the area (sitting, standing etc) or when I sneeze. Oh god those kill. My right wrist is killing me due to the number of bruises I have along the arm and hand (3 drip connectors will do that to you). So I struggle with my wrist. I also have the weirdest crinkling in my ear which I'm going to mention on Thursday at the clinic.
Otherwise....doing A ok.
I plan on staying at my parents til Friday evening, then being taken home by Tom for the weekend. He'll then bring me back Monday evening as I should have clinic on Tuesday.
Now...the interesting bit will be arranging how I get to clinic when I'm back home. I can't drive for a while yet, or make my own way will be interesting.'s been just over a month or 6 weeks since I had the operation. Apart from an odd issue here and there (liquid collections around the kidney now finally reducing, nerves from the area of operation making it slightly harder to walk and a potential mini infection threatening me - have antibiotics now - ) everything is working far better than expected.
Looking forward to getting back to work and currently keeping myself busy around the house.
I plan on rejoining the Community volunteer work I did before again with renewed vigour. For now....I'm waiting for my strength to return. In full.

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