Monday, 23 November 2015

And now...the end is near

Ok so the title sounds a touch more ominous than I meant it to be...but hear me out...

It's been 9 month since my operation and I'm a new person now. I was going to say 'back to my old self' but what's interesting is I spent 5 years with my kidneys slowly deteriorating so in my mind I was a physically weak, somewhat...clouded person and during that time, I encountered a whole load of experiences and grew from them.'s 9 months since my operation...and I'm finally phoenixing my way out of the last 5...6 years. The last year was for recovery.

Either way, I'm definitely healthier. I was thinking about this the other night, actually, remembering how the past few years have been and how much has changed. How much clearer I see things, how much quicker I think and process things now. It's as if the new kidney literally changed the person I was...yet used my personality and experiences as a back up file to create who I am today.

I then realised the other day, I have literally spent the majority of this year...recovering. Couldn't get my head around the fact that it's now November...and I'm finally feeling relatively normal again.

On that note, I'm stepping away from my blog. I'm slowly trying to return to what I recognise as a semblance of normal living and working on the blog can be a bit of a reminder as to what I've been through these last few years. one of the reasons this post took so long to write then publish.
My clinic visits have reduced to monthly, and apart from the odd scar itch or discomfort and the aching in my legs and back which I'm told should pass over time, I'm basically physically fine.

Mentally...well....that's kind of a different case as I'm initiating a course of CBT as my anxiety attacks are back and I'm struggling to go into social situations again....but, that's just me. And not for this blog.

I think now's the right time to step back.

Until the next chaotic thing happens.

Nononono wait, there's more! 
Do you have a kidney scar (either as donor or recipient) you're happy to show off?

Then check out the casting within the link below

Hell...check it out even if you're not!

Tuesday, 8 September 2015

The last few weeks....

I'm very aware I haven't updated in a while. This is due to focusing fully on work and real life other than my kidneys for a change.
These past few weeks, however, have been....challenging. A couple of weeks ago, I went in for my post transplant biopsy check (Ultrasounds and MRI can only tell you so much). And I've been dealing with that and the aftermath.

I was in the Personal Investigation Unit (PIU) at 8am on the Tuesday.
Registered to a bed, waited a couple of hours, the doc came in explained things, then prepared for the procedure.
Companions aren't allowed to stay during the procedure, so Tom left when the equipment was being prepared. Just as he did, tranquiliser was injected via cannula and worked pretty much immediately causing the ceiling before me began to spin and weave. Apparently he was about 5 feet away when he heard me go 'wheeee'.
The equipment was placed on my new kidney, two sharp clicks and I felt the needle go in twice (felt but no pain). Then the doctor applied a bandage, informed me he was tidying up, so I took the chance to turn over to my other side and fall asleep.

Did you know...
During a biopsy, they remove a selection of the filter cells which make up the kidney to ensure they're all in good health. If they have any left over after the analysis, they store them. These are then used to find the right kind of treatment if something happens to the patient without forcing them through more uncomfortable tests.

I woke up shortly after with Tom by my side, though I think they must have given me a lighter dose of tranquilliser as this time I didn't suffer the overwhelming need to go back to sleep.
As biopsies are pretty simple, you can usually go home straight after...once they've ensured the hole they've made in the kidney is fully healed. They check this by having you go to the loo until there's no more blood in the urine. During the first 2 biopsies (pre-transplant), I had to stay as my urine was constantly stained and it took a while for the kidney to re-heal. This problem! I was out of hospital after the second loo visit to ensure the first wasn't just a fluke. Shows how messed up my original kidneys were.
I was informed, as I'd had all the tests done there, I wouldn't need to attend clinic until the next week as that'd give them time to check my samples. No problem.

The phone call
The next day I was absolutely fine, minus the slight ache in my side.
Then my phone goes off. I was to go back to clinic the following day as the consultant needed to speak to me. I explained the change in my clinic visits and she informed me that they still needed to see me asap so the following day.
Cue 24 hours of me fighting off stress and worry, including waking up to a none IBS belly ache at 4am whilst staying over at my parents.

Next day, mum takes me up to the clinic. Deal with the usual, blood pressure, blood tests yadda yadda...then I see the consultant. He takes a moment to read over my newest notes, then takes a sigh and sits back which gives me the signal he's ready to give some unwanted information and take on any questions I have. It's the body language of 'something big this way cometh'.

He informs I have BK Neuropathy.

BK Neuropathy comes from a virus which is dormant in a majority of people who can live their whole lives without knowing they have it within them. The most susceptible people are those on immuno-suppressant drugs - *waves* yo - as the virus will occasionally peak out, see where it can go, spot the immune system and slam the door back closed. Then the immune system is lowered through medication, the virus will peak out again, see it's all quiet, then sneak out for a happy little attack, mainly on the kidneys. Which is why...if not caught on time...can cause issues to the grafting of the new kidney into the system.
When you get BK Neuropathy, you don't know you have it. You only know via tests or when symptoms start to appear. And by then the virus is fully active and in action.
Thankfully, mine was caught in time.

So I was given the option of immediate treatment that day of an Intravenous Immunoglobulin (IVIG)

Here I'd like to say a huge, huge personal thank you to all those out there who give blood as the IVIG contains the pooled, polyvalent, IgG antibodies extracted from the plasma of over one thousand blood donors. You save lives....for some many people.

The IVIG reduces the immuno-suppressant enough for the immune system to groggily wake up, look around, witness the attack then go screaming forward to the rescue.
Well...I say given the option. Truth is when I asked the doctor if it could wait, he looked me in the eyes and said 'No. Not really. In fact, I would highly recommend taking the first treatment today'.

Where did I end up? In the same ward, and in fact the very same bed I'd had post transplant recovery! Cannula applied, drip turned on...prepare for a long day.
During the first treatment, the drip is set at a very slow rate the ensure the patient can handle it, then slowly increased every half an hour. Thankfully mum was there, so every time an alarm went off or the bottle emptied, she'd notify the nurse.
We were done by 6.30ish, delighted that I didn't have to stay over night.
Tom came by after work, mum took us back to hers, and that's when it hit me how tired I was. I'd been there for 6 solid hours, just sat in the bed, with no fresh air, pumped full of medicine. My head and body were in a slight state of wobbly. So Tom took me home.

Woke up on Saturday, and something felt off. I was fully expecting side effects, but I was shocked at how quickly everything escalated. I had a headache, I felt like I was fighting flu without the fever and I knew something was wrong (I'm not kidding here), when I couldn't even finish my bacon breakfast. My appetite was gone. And the headache got worse.
By mid afternoon, I was lying in our darkened bedroom, with Tom working on his laptop, keeping an eye on me.
My legs and arms ached feverishly, I was ridiculously warm but then too cold if cooled down and my head....I never want to experience that again.
I was dealing with the side effects like an initiation by fire, Tom cooling me down with a flannel and paracetamol my only friends.
At one point he called the hospital and they told him I should be fine as long as my temperature and blood pressure didnt peak to 38. He managed to keep me down to 37 pretty much the whole day.
At one point we considered going to hospital, but the idea of going downstairs to the car, let alone the drive and waiting in hospital made me want to die. So he nursed me best he could. Tried to stay hydrated but even that failed as after drinking water, it immediately came back up again.
Night was the worst as I had the pain somewhat in check when I was awake, but when I slept it would come back ten fold.

The next day, although I managed to make it down stairs, I was now dehydrated and malnourished (I couldn't manage water let alone food!).
However, I read up that salt and sugar were the key, so my slow release sodium tablets worked there, and I worked my way through glasses of squash based liquids. By the end of the day, the headache had dissipated and I was sitting up again.
I never want to relive that. Especially as I had an event I'd been looking forward to for a while literally just after my second treatment. So I did research. Into everyone and everything that had encountered IVIGs and, on doing some detective work, I confirmed how I could potentially avoid the next batch of hellish side effects. And here...I pass them onto you...

Preparing for IVIG treatment

  •  Hydrate - Drink at least 3 litres of water the day before. Then drink at least 2 litres throughout the process
  • Sugar water - Kidneys won't let me drink sports drinks. But, they are highly recommended post IVIG therefore, I drank very diluted squash. 
  • Speed of flow - I didn't let them push it past 200ml an hour. Last time they pushed it up to the point where I could feel pressure flowing through me and that made me a touch uncomfortable but thought that was the way it should be. This time, I asked them to slow it down and it seems to have worked a charm.
  • Painkillers - I'm banned from Ibuprofen (which is why I suffered the migraine) so I took paracetamol before the treatment, 4 hours later then again 4 hours later. This helps the body pre-empt any pain.
I'm not, however, going to lie...this was not a completely fool proof method as, although I awoke the next day feeling fine and even managed to get to the event feeling ok, the next day I got hit by a headache which gradually progressed, though not to migraine proportions. My legs ached all weekend but nothing compared to the last treatment. On the Saturday, I nearly didn't make it back to the field as my head was pounding. However, no way of sitting or lying down soothed the pain, so I decided to head out to the field for fresh air and surrounding distractions. Slowly but surely the pain finally abated. On the Sunday, I was forced to lie down in a friend's tent and managed a selection of naps which saw me back on track.
So suffered some pain and lack of focus, but was also able to run around here and there so the IVIG treatment preparation appears to have worked.
Still fending off some of the side effects today, but I just compare them to the first treatment and am suddenly grateful things could be (but arent) a lot...lot worse.

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.

Tuesday, 2 June 2015

Diary of a Transplant Patient - Part 4

'Diary of a Transplant Patient' sections:
Part 1
Part 2
Part 3

I woke up exhausted the next day. And when I finally did get to doze, that's when rounds started: blood pressure, temperature, getting generally judged by doctors on state of health. I was always last for rounds so if I knew I had any big decisions coming up, I always had to endure another 15 minutes in deep anticipation, watching them move from bed to bed. And given being in this ward meant I was a day closer to home, every doctors' round was filled with anticipation.
When it was my turn, I remember listening patiently to completely differing advice from each consultant with a dazed smile on my face. Finally, the chart on my own bed was consulted and yes, my catheter, central line (neck) and one wrist cannula were to be removed. I double punched the air at this news and nearly cracked up when the most serious looking doctor there copied me then suddenly looked around in awkward confusion at to what he'd just done.

Catheter removal (a touch graphic)
Now, catheters don't come out easily. Unless you know what you're doing. Which many patients don't. As they try to remove them themselves. Once inserted, a tiny balloon is inflated to prevent it from falling out. This therefore causes the....'braver' souls who wish to remove them by themselves more pain than needed.
For me, the nurse talked at me the whole time to distract me, then told me to take a deep breath. I felt a weird pluck then it was pulled all the way out.
I have never appreciated getting up and going to the toilet by myself more. Yes, I now had to measure my urine input/output to ensure I was drinking enough, but quite frankly, I couldn't give a rats.

Central vein line
As this cannula was connected to a central vein, she informed me that she was going to add extra pressure to ensure everything stayed where it should after the removal. She did this, then stuck the world's largest bandage onto my neck. The other nurse came in, saw me and exclaimed '.....did...did you just try to hack her head off?'
I was now left with a major, and I'm talking 'vacuum with teeth' style, love bite. The bandage was later replaced with a transparent plaster which unfortunately gave the impression that I'd developed a bizarre skin problem. I hadn't realised this until I had guests and a friend stared at my neck in concern.

So. I now had the one cannula in my arm and the drain in my side (which required me to carry a bottle which I had to keep lower than my waist everywhere). But now I could go to the loo and get more comfortable in bed. To celebrate, I decided to go to sleep at 10pm, ready to conk out.
Sadly, this was not to be.
Just as a settled, I was given an injection to help the new kidney meld with the rest of me. I thought nothing of it until I realised I was getting so physically warm, I was longing for ice. Not to eat...but to lie in. I've been sunny warm, I've been running around warm. This was internal furnace warm. I've never felt anything like it. On top of that when I lay down and tried to relax, I was hit by a demon of an adrenaline rush, which coursed through my body for several hours. My entire body, and I mean literally every muscle, would tense for about 2 seconds, every 3 seconds. And those 3 seconds were bliss after the clench. I've never felt so physically furious in my entire life and I literally had no reason to feel that angry. Turns out I'd been given a light steroid injection and due to my metabolism, it was having a seriously intense effect on my body.
At one point, I actually tried gumming my arm to distract me. I soon realised this was a bad idea as I was actually at risk of biting a chunk.
So after half an hour of trying to get comfortable, I surrendered, sat up and continued writing my blog then watched a film, with my legs outside the cover and one foot desperately massaging the other. That seemed to focus the energy and placate me enough to ride out the hours for it to pass through my system.

I knew I was ready for sleep again when my legs gradually slowed and relaxed. And I knew that wouldn't be the last time I endured that.

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...

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.