Wednesday, 20 May 2015

Diary of a transplant patient - Part 3

Woke at 1am, in pain, desperately needing the bed pan. That was fun. Having now fully woken, insomnia kicked in so I attempted to soothe my brain by reading. I must have dropped off soon after as I was then woken for a sponge bath. I commented that I was really looking forward to sitting in the chair and seeing how that went for me. After a pause, the nurse asked if I wanted to both sit in the chair and wash myself. This would give them the chance to change my covers and tidy up. This made me grin. I was seriously getting joy out of the little things here.
With the nurse's help, I began the first proper move since I'd climbed onto the trolley on Monday. It was a struggle and I became ridiculously aware of every part of my body shifting and reorganising. Ever had such a big meal, when you stand up, you need a couple of minutes to re-orientate yourself? That...but more. I finally managed the chair which was just a foot or so away, the nurse showed me the sponge bath equipment, and then popped out to get linens. That's when I was hit by major IBS like symptoms razing my system: waves of severe stomach pains, making you feel like you're either going to pass out or throw up. Whilst trying not to let go.
Waiting for the nurse to return was agony as she was in no hurry to come back. It might have just been a couple of minutes, but felt like an eternity. On her return, she saw the cry for help in my eyes then swiftly left to return with a chair....on wheels....with a hole in it. Okkay then. The curtains were closed and I settled down. Were the nurses leaving? Nope. They've got stuff to do around my bed. *whimper*
Before hospital, I've actually had stress dreams about people being around me when I'm attempting to use the loo. So now I felt incredibly vulnerable. I then realised they were only glancing at me because there was a delay in...movement. So I just managed to get through by repeating 'they've seen it all before it’s fine, they've seen it all before, it’s fine....'.
Finally done, I returned to the previous chair, had the less vital plugs taken out, then gave myself my own sponge bath (urgh my kingdom for a shower at this point). I rewarded all my hard work by having breakfast in the chair. However, once I'd digested, I felt the overwhelming need to lie down again. It’s amazing how exhausting sitting in a chair after an operation can be!
Back to bed with help in time for rounds and was informed by the surgeon and consultants that everything was going smoothly (oh 'diabetes' symptoms had passed by now!).
Cue an ECG, and a number of plugs being removed (though cannulas, catheter and drain still in)

I had three more medical visits after that:
  • my counsellor, for a very brief session
  • the pharmacist who had to leave soon after as …
  • ….the daily ultra-scanner (which I forgot to mention before) popped in
For now, everything was running smoothly 

Wednesday ...and the move...
… a busy day as I was moved to a less dependent ward. Great, but there is a small sense of loss at the priority you'd previously experienced.
The entire bed was removed from its post in DeWardner and I was taken to the next ward. This was in the form of one long corridor, lined with separate wards either side and a nurses' station close by. There was one HDU filled with beds and monitors, opposite the nurses' station, and the rest wards in separate rooms. The wards themselves consisted of 4 beds with their own curtains, plugs, a cabinet for stuff and meds and a toilet for the 4 people on ward. Family and I were all under the impression that I'd be with Emily who'd already been moved there. Nope. Seems they'd referred that bed to someone else and as their medication et al was already set up, I was moved to another one a little further down. So barely saw her during my time there as we were both too tired to move. Though I received one visit from her when she was able to walk with assistance, but I suggested she go back to bed after a bit as I could see just sitting in the chair was a struggle for her.
I soon met the nurses who were looking after the wards and here I'd like to say hats off to the nurses on that floor, who despite facing pretty much every type of crazy still managed to walk around with smiles on their faces. My favourite porter, however, was a Polish guy with a strong accent who'd walk into the ward, see a new person (eg me) and say 'hello, I am [can't recall name], I am blood man. I love taking blood. Blood is my hobby'. He said this with such enthusiasm you couldn't help but find him absolutely awesome.

First night in new ward

My first night, unfortunately, was pretty awful. In the HDU, I'd been advised to slow down the use of the pain killer button to try and wean myself off it then had it removed. In this new ward, they took away all pain killers so I was just on paracetamol, but the medicine cupboard was kept locked up and the relief from paracetamol only lasted so long. My attempt at braving it out resulted having a pain induced nightmare and my brain physical stating the words ‘you are in pain….take something….’
As soon as this happened, I saw a nurse come in and asked for the drugs.
So by now, stupid early in the morning, I'm awake and feeling fairly cruddy. However, the cocktail of drugs in my system seemed to take this as a sign that it should make me feel as horrendously beltchy as possible and give me the most astounding morning breathe (my description of the sensation was ‘it’s like a skunk has crawled into my mouth, taken a dump, then proceeded to die and rot’). Why, yes nausea! You join in too! This sounds deeply unpleasant. That's because it was.
Again, I informed a nurse who gave me a pill, told me to let it settle then eat something. Which I did. ALL OF THE CRACKERS!! After feeling a touch better, I later realised that rather than just feel hungry, I was now getting waves of nausea as a warning. I wasn't allowed flowers at my bed due to possibly bacteria etc etc so I was given food and snacks. A huge thank you to those of you who provided them for me.'s one of the ways I got through the more difficult times.

So, I sat up to read and proceeded to eat a majority of what was on the table. Finally found myself falling asleep sitting up, but for fear of losing this sensation, I refused to move and just closed my eyes. I did sleep, but it was sporadic. I was randomly woken by heavy snoring earbuds and plugs with music could block out or when the still attached pipes caused me issue (alarms going off or general discomfort).

Sunday, 10 May 2015

Update: MRI and Anti-depressants

I interrupt my Diary of a Transplant Patient posts because this week has been the most interesting during my recovery. To me anyway...
Plus didn't have time to finalise the next entry I was going to put up: last weekend I was out of London then back for Tuesday and in time for my 8am MRI scan in hospital on Wednesday and been preparing for work stuff of Saturday since.
It's been exactly 3 months and 1 day since the operation, a milestone in a kidney transplant as the patient can finally start slowly returning to work. It also means I'm attending clinic once every 2 weeks now. To mark this, although I've been having ultra sounds to ensure everything's A-ok, the MRI should show a hella lot more in greater detail.

The MRI itself took 10 minutes: the first 5 just a normal scan, then next 5 with liquid from an external machine being added to the newly placed cannula in my arm (pre scan) to help them see the kidneys function in a different light. I could literally feel the liquid moving down my arm, into my side and into the kidney. I freaked out just a touch, then reassured myself there were people watching me and I had a buzzer in case I needed help.
As I came out of the machine, I was then informed that they (and I) had been extremely lucky as a power cut hit JUST as the MRI was finished. No idea if it was departmental or whole building.
I should get any results back on Thursday (my usual clinic day). Hopefully it'll also explain why I still ache a touch when I go to the bathroom but there's no sign of infection.

In the meantime, it seems the iron infusion and my diet of iron heavy foods combined with orange juice (helps absorb iron into the system), has made a major difference to my life.

In other news, work is slowly progressing well and I'm in damned good spirits.
This being the case...and as per the doctor's consent....I'm now weaning myself off the Anti depressants. I'm working under the theory that I'm in a good place and things are progressing with that in mind, I'm now taking them every other day. As of today.
The drug I'm on, Fluoxetine, is apparently easier to climb down off than other drugs, so hopefully it'll be an easy ride. However, I'm also very aware that I may hit pockets of discomfort, have pre-warned Tom so he has an idea of what to goes...