Friday, 17 July 2015

Kidney Research UK on BBC Lifeline - Appeal

I begin this post by highlighting that I was one of the few, very fortunate people to have been given a strong transplant, which I hope lasts me years to come.
However, not everyone has that opportunity, and I live with a tiny touch of uncertainty as to how long my own new one will last me. So...I'm dedicating this post to BBC Lifeline Appeal, having chosen Kidney Research UK as their July charity. They will be focusing on a new, revolutionary technique for kidney transplant treatment and will be airing at the end of July.
Transplants can mean the world of difference to a patient's life (I include myself in that), so please take a moment to read this post, or listen to the vlog attached.

Remember, if it wasn't for Kidney Research UK putting in time and effort to raise money and fund research, kidney treatment wouldn't be where it is today. And I'm very aware that I of the lucky few who benefited from that research...

A bit of background from Kidney Research UK

'Broadcaster Lauren Laverne features in the appeal as kidney disease & kidney research are subjects she cares about deeply, after her father suffered kidney failure last year.
The film features 10-year-old Matthew, who has had both his kidneys removed. His life depends completely on a daily routine of dialysis. He’s been on the transplant list for 7 years and is desperate for a donor kidney to become available. Matthew’s mum set up a Facebook page with the aim of raising awareness of kidney disease and the organ donor register to try and find a donor for her son:
The appeal also features Deborah Bakewell...featured in some of [Kidney Research UK] campaigns previously. Deborah went into kidney failure in her 50s. After years on a punishing dialysis routine, her wishes appeared to come true when a donor kidney came up for transplant.
However disappointment followed when the kidney appeared to be damaged.
Fortunately, her surgeon, Professor Mike Nicholson, was leading a ground-breaking research team funded by Kidney Research UK. He wanted to see if the one in five donated kidneys that are currently thought to be unsuitable due to damage, could be successfully transplanted. He has pioneered a technique called normothermic perfusion, which allowed medics to revive a donor kidney in the lab and test whether it works or not.
Deborah decided to become a medical guinea pig, and to take Professor Nicholson’s offer. After he transplanted the kidney her recovery was immediate and dramatic, and she says she owes her life to Professor Nicholson’s research. We are now funding a trial to test the technique on many more transplant patients.
 The appeal is broadcast on:
Sunday 26th July – BBC One – 17.00
Wednesday 29th July – BBC Two – 12.00
Click here for more information on BBCLifeline

Help the charity by getting the word out using social media!

Kidney Research UK wants as many people as possible talking about this on social media and would love it if you could help us out with that. Use your channels, use your blogs, use your videos...anything...
The hashtags to use are #BBCLifeline #EveryKidneyCounts

Money raised will go towards the Making Every Kidney Count Appeal.
(a copy of the PDF is available here)

However...sometimes kidney transplants don't last forever...but now there's a chance...

Thanks to money raised by the charity, £55,000 has now been put towards a 3 year study to combat transplant rejection:
“One of the ways the body rejects the kidney is to produce antibodies, proteins that stick to the transplant and flag it up to immune cells as something that needs to be attacked. 
“Currently we use lots of strong medications to dampen down the immune system and prevent this attack; however these medications have side effects, including increasing the risk of infection and cancer. 
“I’d like to find out what is different between a patient whose immune system starts to attack the transplant, and one whose immune system is controlled by the medication.  So my research aims take a few steps back from the point where antibodies are produced to try to pinpoint an earlier part of the process where a change begins. 
“I will be looking at the way patients’ white blood cells (or immune cells) interact with each other, particularly those that are important for producing antibodies. By looking at these cells in more detail, I hope we can discover new ways of preventing this interaction and find new ways of predicting, in advance, who is at risk of attack.” 

Wednesday, 15 July 2015

They're calling to me again

Ok this is one of the toughest things I've written in a really long time. But as my brain works 50/50 now after the operation (negative/logical thoughts are now even), the logical part of me is saying that I need to let people know what's going on. Especially because I've been struggling to talk to friends for this exact reason. And I'm only doing this now, because this just occurred to me yesterday. It's been a gradual process.
The reason this is difficult for me is because I've written blogs and done vlogs on how to help people through these moments. And I'm now being told this is hypocritical and I can't write this because it'll make me into a liar.

Which is exactly why I need to say this. In fact...this is one of the ways I deal with this. I take the black mail it uses against me and show it to the world myself.

Let me clarify...

The voice is back. 
Sad to say I'm not referring to the show in which members of the public go on television and show case their musical talents.
I'm talking about the little imaginary...being...that sits on my shoulder and whispers sweet, extremely negative nothings into my ear. Constantly. Come to think of it, literally...constantly.
I was going to write 'Voice' with a capital V instead of 'voice' with a lower case v, but I feel the capital V gives it more importance than it deserves. A lower case v gives me minute control over it's importance. One more brick in the wall of my own personal defiance towards it.

For those who don't know what I'm talking about, this is the voice that sits there waiting for me to fuck up either verbally or through action. And if I do...woe betide as I will then encounter the most crippling brain freeze ever.

Actually the brain freeze you get during eating ice-cream is a pretty good description for what I personally feel - 
That feeling of immense discomfort with a hint of stabbing pain to the point where you're not longer able to think and just need to grab your head, squint your eyes shut and pray each gesture warms up your head just enough to get rid of the razor that's just dug itself into your skull.

voice led brain freeze (otherwise known as panic attack) -
Keep that intense feeling of discomfort, but remove the stabbing pain and replace with mind filling numbness, a gauze of grey tunnel vision before your eyes and the feeling that you're trapped in a room that has no escape and is slowly filling with a toxic gas that will kill you in the most painful way possible.
Add a hint of chest pain, inability to breath without hyperventilating and hey presto, the voice has achieved it's result.
It then takes a smug back seat as your forced into which ever small space you can find, whilst in tears, followed by a tasty dose of depression.

Now, that's not what I get alongside the voice. That's simply (heh) what it constantly keeps me alert to. The voice sits there and warns me that if I do or say anything remotely stupid, it'll lock me in that room. And's constant.

Frustratingly enough, this isn't the kind of mental state which is resolved with exercise, healthy diet, meditation and positive thinking. This is a chemical reaction. It's the lack of serotonin which even exercise and a good diet won't help. I realise those helped me in the past....when I was on the Anti-depressants. I just gave the drugs a boost.
I now have a feeling I stopped taking the drug when I started to feel better...thinking that was me feeling fine post op. I thought I was back to normal and didn't need it any more. Nope. That was just it working it's magic on me. So the progression of the voice returning to it's throne has been happening gradually, has been happening.

It's also increased my social anxiety too. I feel atmospheres. I pick up on tension, excitement, pretty much any emotion in the air if it's strong enough. Which is why particular social settings can often make me feeling like I'm going insane. The panther in my brain wakes up (remember the panther I mentioned pre-op?). It wakes up, growls and I get aggressive. So I have to protect others from getting bitten.
To deal with high energy social situations, I tend to sit with my back to a wall, with a piece of technology to hand. This helps me 1) feel safe and in control 2) keeps the panther in check. I tend to use my tablet because it's like an electronic baby sitter for the bad part of my brain. Keeps it busy whilst I enjoy myself.

Yesterday I returned from visiting my parents and, instead of feeling good after a really nice day with them, the voice was ridiculously active.
And that's when it occurred to me that every day is now a personal battle to keep that voice at bay.
I found myself thinking at one point 'I can fight this, I always do...I'm strong'.
Then another...smaller, quieter voice... my gut instinct, spoke up (I knew it wasn't the voice because it didn't have as much venom) and reminded me that this was now a daily...hourly battle. Was I really just going to keep fighting? How much inner strength did I have before it knocks me down again?

So I'm returning to the Anti-depressants. And I'll try and sort out my life, my career and my finances before I consider coming off them once again. But for now, I need them. And that right there, boys and girls, as someone who sees herself as strong and a fighter, is why I was so reluctant to write this post.

Thank you...

to all of you who've so far told me that it's not taking a step backwards or defeat. It's being self-aware and taking control. And that's what I'm doing.

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.