Monday, 23 December 2013

Compatibility update

Seems that on top of waiting for the usual 3 - 4 week waiting period, due to Christmas/New Year/people generally being away, there's a good chance we now won't hear anything until mid to end January.

This doesn't bother me.

Remember the post in which I described sitting in a waiting room for 2 hours waiting for the glaucoma patients to go first before I had my blood test, and I didn't mind waiting half as much because I understood the need for priority?
That. Only this is a more metaphysical version of that waiting, naturally.

I've a number of other things I'm waiting on and the fact that I've already been waiting for this long....another month is no big deal. Again, I'm appreciate the state I'm in and realise there are others out there less fortunate. I don't feel 100% a lot of the time, but that's now just part of my every day life. I just don't exert myself and sleep a lot.

(I'm hoping this post doesn't sound preachy or '*chuckle* I'm just so awesome', mainly because today I write this post with the slight headache I woke up with so may be ill judging the tone of this post).

So...more waiting. Would have been an awesome Christmas present, but I'm currently just looking forward to chilling out and spending time with family, seeing a friend I haven't seen in too long (whom I've known since Primary School)....and my birthday in January!

On that note, if I don't write another entry before then....a very Happy Christmas/Festive Season to all who read this!!

Wednesday, 18 December 2013

A week to go...ish

Ok. So having just confirmed another batch to see me til my next appointment in January, I've been informed that the company which creates my anaemia injections will be shutting down over Christmas. Given the fact that, since having these injections, my doctor informs me I'm basically stable and everyone's noticed a difference in me (ignore the need for a nap in the afternoon after going out), my initial thought was definitely this:

 Cue comedy sitcom, inner monologue, single scream: ARGH

Don't get me wrong, I personally find the injection is bit of a pain in the ass (...well...belly) as my skin can go through phases of being particularly sensitive which makes the experience a bit uncomfortable (for about a second, but still!). So, I wouldn't miss them.
Not to mention a part of me is hoping the injections being taken away is a sign and a chance I'll receive good news of a compatible donor around Christmas. You know, take one thing away and replace it with another...better thing?

But still! I've some time to go before that!

My next doctor appointment is in January...a few days after I become 30. There I'll discuss 1) potential new donor 2) a substitute for the injections.

Re: the donor, I AM living in the frame of mind of 'yeeaaahh no this isn't going to be that smooth. It's very unlikely they'll definitely find a new donor with the first batch'. This is to safe myself any disappointment which may hit.

But wouldn't it be...nice? A nice little end of year/30th birthday present.

Monday, 9 December 2013

Looking through the fish bowl

Today I seem to be going through one of my odd, feeling-out-of-worldly head experiences. 
From social points of view, this is most obvious when, having previously flitted from group to group and moving around the area we're currently situated without any concern, I suddenly become somewhat clingy to Tom.
I do this as it brings me back to myself, especially as he's learnt this as a sign and is able to react to it.
I don't know how I come across to anyone else, but in my head, I start misinterpreting situations, picking up on emotions more than normal and feeling a little overwhelmed. It's not anxiety as I'm not worried or's more a kind of mental displacement. 

In fact, I think I become more childlike. It's a very odd feeling to go from completely confident and secure about myself to suddenly becoming dependant. 
I feel spaced, easily distracted. I zone out of conversations with more ease.

When I go through these, I think to myself, 'is this just me? Is this normal?'
My kidney function is as low as 28% and although that's not in the danger zone, it's not far off and I wonder how much effect this has on my mental capability.
I've read that decreased kidney function can cause mental confusion, restlessness etc due to the amount of waste and toxins in the system.
Now, I know I'm an intelligent, perceptive woman and therefore wonder what changes will take place when my physical waste system is upgraded.
I keep getting an image of someone turning on my body's ventilator system and all this weird green murk being sucked towards it and vanishing, resulting with me jumping up and yelling 'I understand how the world works now!!'

I've also tuned into the fact for a while now I can't sit/lie still til I'm completely comfortable as I can become extremely aware of everything about me that isn't comfortable: that strand of hair, the cuff on my trousers is on my ankle, that tiny itch. That fact that the lining of that muscle isn't quite in line with the other. Sometimes, I'm lying on my bed and I have to move because I'm aware of the irregular angling of my torso to my legs. Sometimes, I have to put myself into an irregular angle because I'm aware of a tension in my muscles and that helps it dissipate.
The time when this is the biggest pain is: 1) one I'm on the sofa with Tom and I just can't for the life of me get comfy, but I don't want to disturb him. Sometimes, to work past this, I just need to sit up without anything touching me 2) when I'm sat next to someone. I'm very aware that I'm not completely comfortable, but don't want to keep fidgeting in case I bother the person or they think they're bothering me. I have little ways of working round this, but when I tune into it, dear god is it annoying. 
Sometimes I just resort to sitting on the floor. This awakens the 'yoga' part of my mind as I can stretch out when I need to, or not worry about the way a particular cushion is pushing against the small of my back.

Maybe it's not my kidneys....maybe I am just weird lol.

A bit of clarity

First off, I appear to have placed a statistical error in my previous post which was highlighted to me by Anon. I publishing the comment alongside the post rather than change the post to ensure the correction was there and I didn't accidentally change it the wrong way (I'm no good with numbers...I've self-diagnosed numerical dyslexia. Numbers change order in my head). 

Day before yesterday, was the Purple Theatre Company's Christmas party. So I had fun getting all dressed up. It's the end of year month, I plan on enjoying myself at parties.

As I applied the final touches, I started idly thinking about Christmas, New Year and how things are going to change in 2014 when I realised I'm feeling exam relief: that chemical feeling you get when you've spent months researching and preparation then finally writing draft after draft to put the final piece together and knowing you'll be handing it in soon?
I'm feeling that.

It also occurred to me that for the first time since this renal business began, I've started writing again.
The last few years, I haven't been able to just sit and commit to working on the novel I started roughly 7 years ago. I'd try and have another shot at it and find myself highly dissatisfied by what I'd written. And this is coming from someone who used to be able to hammer short stories and poems out all the time. 
I couldn't even contemplate dealing with the block my current novel was facing. And this block was huge. Without resolving it, there was no way I could continue the rest of the story running smoothly. 
I missed the joy of just sitting down and feeling the story flow. 

Then, a few days ago (after the compatibility testing had been done), Tom and I popped out to the shops and I randomly decided to talk to Tom about the block. I think a part of me was frustrated that I, a creative writing student, was having difficulty writing, and he was working his way through short story after short story (see previous post for link).
And as I talked Tom, the ideas just started to flow again. I felt a renewed interest in writing and demolished the writer's block I'd been facing for too long. It's as if making this huge progress in regard to my kidney treatment pushed something in me and the veil just....lifted.

Let's see how far I can make the story progress now!

Wednesday, 4 December 2013

Experience 1: the first compatibility test

[This is an entry based off my recollection from the experience whilst it's still fresh. However, if those who were there remember things or what we were told a little differently, I welcome you to point it out]

The day's activity

The day before yesterday saw myself and my troop go for the first (but what we hope is the only) compatibility test for a new kidney. It was a very, very long, yet information filled afternoon.

We arrived at Hammersmith Hospital for our 2pm appointment, met with our contact, and were led into the room we'd be based in for the next 3 hours. The meeting started with her, for the next half hour, detailing what we could expect from now til recovery. She also handed information packs to each donor.
Then, each donor was taken away, along with their 24 hour urine sample, for the blood/pressure tests.
Oh yeah, don't think I've mentioned that.
Each donor had to collect their pee for 24 hours before hand. I was highly amused by the idea!
Anyway. these were decanted into bigger containers, then approximately 7 vials of blood samples were taken from each and family/medical history noted.
Whilst Tom was being prepped for his blood test, mum and I went to get my ECG done (they stick a number of pads on the left side of the body from legs to arms, your heart is monitored and the results printed out, all within a minute or so, to then give to the contact there and then).
I came back in time to witness Tom have the most interesting blood test experience out of us all.
We're sat in the appointment room, when we suddenly hear a shout. As the nurse had been joking around with us from the beginning, we thought she was just being a bit silly with someone else until my mother perks up and says 'I think that was a shout for help...'
I stick my head outside, see someone run past me and realise the shout came from next door....where Tom is.
Oh dear god!
I peg it there and see he's slumped in the chair....pale as anything.

Yup. Tom passed out.
And as he's a big man, the tiny nurse had called for help, having struggled to keep him in the chair.
Apparently, after the blood was taken, he felt a bit off, closed his eyes, had a random hallucinatory thought (he was out for a couple of seconds), then woke up with the seat lowered so he was lying flat, surrounded by nurses and with my face looming over him. Turns out the reason he's never passed out whilst donating blood is because he's always lain down, so didn't realise he had a chance of fainting with just the 7 vials.
I was already feeling a little stressed and tired due to not having slept properly the night before. And as I have a habit of throwing up, then feeling absolutely awful when I faint these days, I took note of Tom's reaction and decided to lie down for my own procedure. Especially if I needed to drive us home and look after Tom.
In the spirit of Tom having a blah, let me introduce you to the writing blog he's been working on for a while, including some more recent, literary shorts called 'The Aether Collection':

We were finished by 4.45pm. Except for Tom fainting, it was a painless experience. I'm not a wuss at having my blood taken. In fact, I'm pretty much an expert to the point where I know when a nurse is doing something wrong (it's happened). However, this was a big one.

And now the facts learnt on the day:

Compatibility testing involves 2 levels:

1) The ones we did was for blood, antibody and tissue compatibility
  • Blood type - I'm 0+ which annoyingly appears to be one of the less common ones. Of course!
  • Antibody test - recipient and donor blood is put together in a test tube and checked for a reaction. No reaction is what you want as that means there's less chance of rejection.
  • Tissue compatibility - again, our tissue has to work together to further prevent rejection. This is why a family member, especially the mother, is the ideal candidate.
2) Once we've chosen a donor from the available successes, the donor gets a full physical to check their overall health. They check everything. No really...e-ve-ry-thing. There are MRI scans and X-rays involved. Donating a kidney is probably one of the healthiest things you can do as they give you a full service and, if your kidney suits, will help treat any issues which may come up (if they can).

The blood samples are sent off and, within 3-4 weeks, each donor will be contacted and informed of the result. My specialist is then given all the information required, I meet up with him and we go over all the options, for example: it's possible one donor might have 2 out of 3 elements which match, whilst another donor is the reverse. Based on which donor would work best for me, I could potentially undergo treatment to give me a better chance for one of those kidneys.
The most common match is a relative. Though, if mum's a match, she's also a mature woman so her organs will be older than mine. If I get hers, I MIGHT need another transplant in the future. However, she's also extremely healthy which might increase the chances of success and longevity. 

If we're lucky enough to have a successful candidate from the blood tests, we undergo the second level of testing: the scans, x-rays etc. There are a lot...and they can take time. And if during this time something comes up in the donor's results to catch the doctor's attention, this is then investigated and potentially treated, adding even more time. It might even turn out that after all that, we're not as compatible as originally hoped or the donor is unable to undergo the surgery.
This right here is the reason I'm eager for a living donor. The emotional intensity of deciding to have the transplant, then the emotional and physical intensity of finding a donor is heavy enough. But if that doesn't come to fruition, and I go on the waiting list, the waiting list is approximately 3 - 5 years. Then there's a chance that even if they do find a kidney, although you're prepped for surgery, you might not be compatible.
What I'm going through at the moment is pretty tiring and can be exhausting.
I can't imagine what being on the waiting list must be like.
Especially for those on a time limit. I'm one of the extremely lucky ones.

One thing that's struck me throughout this whole experience is how relaxed medical professionals seem to be about kidney transplants. Seriously. The leaps and bounds medical science has made to improve such an operation and chances of success is amazing!
The only issue faced is lack of donors. People are often put off due to work, possible pain and the recovery. Chatting with our contact, we were informed of the following:
  • Work: 
the donor needs a week or so to recover in hospital depending on their level of fitness. Then they need to take it easy when they come out. However, recovery is a hell of a lot quicker for them than the recipient. Also, the hospital can help reimburse financial loss as you're taking the time to help a patient out. I'm a little foggy on the details here, but help is given to the donor. 
  • Any pain?: 
It's surgery, there's going to be some, but they combat this two ways - 1) they monitor you almost as much as they monitor the recipient 2) in hospital, you're given a morphine button, so you're able to admit your own pain relief when you need it.
  • The aftermath: 
they ensure you have someone to look after you after the operation. 
Now, the link I'm putting here isn't a preach, plea for myself or pressure to those who've read my blog. It's a request to potentially consider something you might not have considered before.
Organ donation is one of the most amazing things you can do: it involves giving someone a new lease of life and is one of the most rewarding things you can do. And you've read the experience I'm currently undergoing. Imagine someone further along than me with less chance of a living donor.

So, consider donation...and the difference it makes.

So what now? Yesterday, I was exhausted and slept like a log, but I'm feeling pretty fragile at the moment. The tests pretty much took it out of me. 
And am I in anticipation of the next few weeks? Nah not really. The months have passed pretty quickly and I've some things coming up this month which should keep me nice and busy. I know roughly when I should hear back and that helps. 

We should hear around Christmas time whether or not I'll have a potential donor (they have to pass the physical tests too, but still). One hell of a Christmas present, huh. 

Friday, 29 November 2013

A deep breathe and...

The reality that on Monday I might be walking into hospital with a potential donor by my side is starting to hit home. I feel like I'm preparing for an intensive holiday. Of course, this might not be the case and we might have to keep on looking.

Either way, I find myself preparing for the hoooooooours of waiting from the testing to the actual recovery period.
I'm no stranger to waiting in hospitals. In fact, when something happens quickly, it actually throws me: 1) my second biopsy. We had a full day planned out, including parents picking us up from the hospital post a prior engagement. Ended up making our own way home as wasn't needed. 2) going for a blood test after work and literally walking in then out in 2 minutes. Now that's nearly unheard of!
Hospitals have a history of long waiting times. These can be for a number of reasons, some of them unforeseen circumstances. When they're 'patient actually doing badly' issues, I don't mind.
It's when I'm forced to wait due to admin error that I get pissed.
(On that note, I found this after writing this post: reason to try to not to feel frustrated when waiting at the hospital).

So, knowing I'll have a lot of waiting around, I've evoked the word of creativity in the form of film and literature and requested my friends throw their recommendations my way.

Oh, the flood gates! I now have a little booklet of titles I'm looking forward to either watching or reading when I'm in hospital. Some of them I've already seen, some I've heard of, others have my curiousity.
I've a mini-treasure trove! I may need to categorise them as watching a depressing film when I'm feeling blue might not be an ideal move. I'll save those for when I've focussed energy and I find myself wanting to watch something intense. Like those days you watch a scary movie just to give yourself a bit of a shock.

But having this list is actually making the transplant experience seem that little more exciting. I'm going to go through some uncomfortable stuff and having these things to look forward to will hopefully make them more bearable.
Not just for the waiting rooms either. Last time I had major surgery at 14, I spent a week in Intensive Care and as I began needing less sleep, I got SO BORED I used my breathing monitor as a form of entertainment. I also had a TV, but it was daytime TV so I spent most of that time, watching programs with my eyes glazed over.

SO! This time I wish to be prepared. I may be in hospital up to 2 weeks. I don't want to risk going nuts doing that time..

In other news, when my previous larp character went through a huge emotional horror, I decided I could either make her lose it and go a bit funny, or don armour and dive head first into doing something worth while. I figured I'd do the latter as it would be more productive for this particular character.
Despite having a huge urge to do so, I can't...really...don armour in real life, no matter how cool it would look. So, I decided to do something which sends out the same message as doning armour: getting a pixie cut. I've had long hair for a while...I'm about to undergo a huge experience. Might as well show I'm ready for it.

A rather lovely picture I found of Mulan pre-war on google from here:

Had one years ago. Must have loved it as I kept going back to have my hair trimmed
This is my way of putting on my armour and preparing for 2014.

Monday, 25 November 2013

A step forward

[This entry is written whilst under the influence of a head cold, so I'm hoping it makes sense. I've re-written it about 10 times]

Intravenous Iron Infusion update: my doctor informs me I won't need one. This is a good thing.

Transplant update: today it was confirmed that potential donors and I are going to the doctors on Monday to do compatibility tests. If there is a match, it's possible I'll have a transplant in 2014. A combination of 'oh cool' and a comedic 'ARGH' are currently in my head.

2014 is going to be a big one if this happens.

If we do find a match, I'm hoping the progression will help settle the lack of concentration/heightened memory loss/need for control which seems to have increased over time. I've developed some habits which I find particularly irritating:

  • I can ask the same question several times, but forget asking the question as soon as the answer is given. And I mean, several times
  • I'm now more aware of germs than before
  • My side seat driving is a hell of a lot worse than it was before (I combat this by sitting in the back seat so I don't keep squeaking or flinching when Tom drives)
  • I zone out during a conversation then can't remember what was said about 2 seconds ago, or the reason why I zone out. I then have to follow up with 'I'm so sorry, I didn't catch that last bit'. It's not because of boredom or disinterest. I just seem to develop a block for a second or two, then realise and pull myself back in. It's a little weird! One example: this evening, Tom spoke to the donor living team contact, then came and gave me an update. As he spoke to me, I actively felt myself zoning out and had to get pen and paper to make a note of everything he said so I'd take it in. 

I'm usually quite a distracted person who gets confused easily anyway, but I think it's on the rise.
It's one of the reasons I'm looking forward to the transplant: I want to know if I'm actually like this or if it's due to the higher level of waste in my system compared to someone with fully functioning kidneys.

And finally, last night I dreamt I was being prepped for my operation. I think it may have been a combination of our light alarm turning on and bordering consciousness after a night of Night Nurse induced sleep.
Since I can remember, I've always had thoughts of waking during intense procedures. Literally every time I've had an op, just as I'm being put under, I imagine what it would be like for the anaesthesia to fail. I then wake up, out the operation, just fine and dandy.
It's not a FEAR worry, but a 'wow...can you imagine!'
I dreamt that I was being put under and that was my last thought before I actually woke up.

How'd I feel? Actually a little disappointed it was just a dream.

Wednesday, 6 November 2013

The owie

Thanks to renal failure, I now have flu-jabs every year. And mine was today.

After being reminded by hubby, I briefly surveyed my clothes, selecting my warmest 'injection friendly' items (injection friendly = giving nurse easy access to arms whilst not stripping off) and grabbed the most suitable finds: a T-Shirt, an armless wooly jumper and a thick wollen cardigan (which mum bought me years ago and I'm still extremely grateful for).

It wasn't til we got home, I had a mini 'my arm huuuuurts' whine and hug from Tom that we realised the irony of the t-shirt I'd chosen for the event; the t-shirt and jumper working together to create a wonderfully sad little image -

'I jus' wanna be your friend....' - sad faced pulled for the photo. I'm fine.

The t-shirt I'd subconsciously decided to wear was my cactus captioned 'Hugz?' shirt.
The little face peaking out is a statement to flu-jabs everywhere: it just wants to help...even if it does hurt when you let it.

When life offers you a big 50/50

So...a couple of updates since my last entry:

My donor list has been given to the living donor team. Now waiting for action. As I'm not an urgent case and I don't want anything huge done until 2014, they won't be in contact for at least a few weeks.

I recently received an e-mail from the nurse who supplies my anaemia injections, suggesting I ask my specialist about starting an Intravenous Iron Infusion treatment.
I'm informed, although my hemoglobin level is fine, there may be an issue with  my iron level. She said it might explain why, despite weekly injections, I'm still very tired.
The iron treatment should reduce the number of times I need the injections and on top of that, I'll get a renewed burst f energy.
I'm happy to agree to this as I used to be able to run full pelt around a field and now I can't even walk up the stairs in my own home without getting out of breathe and light-headed? Come on.
My main concern is that the treatment will end up being a little like dialysis. However, this is based on worry, and vague online comments I've come across, so I'll leave any concerns to my appointment with the specialist on 15th.

And finally, my December meeting with the renal pregnancy consultant was moved to earlier this month due to a cancellation: an opportunity I grabbed with both hands.
Where the renal specialist gave a vague over view of what we could expect a pre-transplant pregnancy to bring, the renal pregnancy specialist filled in every possible blank.
What she said wasn't necessary fear inducing but made me think: 'yup...still shoving a new kidney in there!'

Basically, if I were to fall pregnant now, there would be a 50/50 chance everything could go wrong with the baby, preeclampsia being the biggy (
On top of that, my general renal failure could prevent the baby from receiving the full care that it needs, resulting in not just numerous health issues for both of us, but forcing the doctors to push the birth forward to save both myself and the baby, thus creating a premature child who would need even more assistance keeping alive. I would have to be seriously monitored throughout.
On hearing all the information the consultant had to give...and paling a little...I jumped in quickly as she took a breathe mid-sentence: 'this is before a transplant, I'm assuming?'
'Oh yes, with a transplant, everything would be completely different and I'd be more than happy to encourage conception.'. I'd still need monitoring, but not half as much as if I fell pregnant now.
As long as everything was successful, not only would I feel a ton better, but my body would reach a new level of fertility and I'd be able to procreate as normal, with a now increased chance of a healthy baby.

How did I feel after this talk? Not much difference than what I felt before I went in. I'm now wiser, but it didn't really come as a shock as she just detailed what we knew.

I've also just been reminded I have my flu jab this afternoon. Commence feeling pretty pants for the next few days. Joy. But worth 'feeling a bit pants' against 'oh god I can't move and I'm dying'.

Thursday, 10 October 2013

The importance of exercise

Whilst employed, I walked at least half an hour to an hour a day. In addition, I'd get up a little bit earlier to work out (exercising in the morning sets off a chemical reaction which warms up the brain and allows a person to be more responsive and productive during the day. As someone who can have concentration/memory issues, I embrace this!). I use Wii Active 2 which uses arm and leg bands to moderate your pulse and match your movement up to the television screen. After a week or so of this regime, getting up in the mornings is a lot easier as the body adjusts your chemical levels to prepare you for a work out it knows will be beneficial in the long run.

Then anxiety/overwhelming stress/a need not to feel tired hit after I got a cold and it all stopped. I tried to reignite the regime a couple of times, but then the battery in the arm band died along with my motivation. I generally felt an epic case of 'oh just sod it'.
I can come across as a very positive person as I prefer to laugh than feel like crap, but during this time I was aware that I was missing an important element in my routine.

As time passed, I've felt what lack of exercise has done to me. I've been at home for approximately 1 month and a half now(?) and I'm tired, stressed, fidgety. I even paused working on a new creative project I'd just started because my motivation just plummeted. That and my appetite hit a new low. I'd finish a plate, really slowly, but for the sake of keeping energy levels up rather than enjoyment.

So, due to this week's horrifyingly high stress level, I decided enough was enough. Finally remembering to buy some new batteries whilst out shopping, on Tuesday I got up at 7.15am(ish) and decided to start slowly: 10 - 15 minutes, full body exercise on the easiest setting. I used to manage short bursts on the hardest setting and feel great afterwards. Yeah. It just goes to show how my stamina has plummeted since I've been going through mental (which can turn to physical) stress.
Of course, as it's been a while, I'm in the early stages, so having to work past the 'gack I'm tired' part of exercising and muscle ache, but I know it's a good ache and I'm happy to ignore it over the fact that my appetite has finally gone up again meaning I'm eating better and sleep's improved. Also, (despite having my moments of feeling tired) Tom seems to know when I've exercise as I bounce around the house with more energy.

As well as being a known way to help combat depression, another reason I've started exercising once again is as prep for my body and mind.
In the future, I'm going to undergo one of the biggest operations I've ever faced. To me, exercise is like warming my body for a marathon: preparing every muscle and joint and making sure my heart, genetically connected to a history of cardiac issues, is fully prepared for a procedure that holds potential trauma. This might not be the case at all and exercise will just make a little bit healthier, but that's where the mind comes in: I need to be positive throughout. I need to be able to mentally pull through the hardest obstructions because I get the feeling saying 'yes' to the transplant and then saying 'yes' to someone else's kidney aren't going to be the hardest things I go through so far (they've felt it, but there'll be more hurdles....I'm thinking possible rejection, facing dialysis, potential illness, and so on). I want to be mentally ready. So I'm pushing those endorphins to my brain so I can be. That's how it works, right? Well, works for me anyway.

Blog site update

[Brief non-medically related update]

It occurred to me, after starting this blog, that people might want to actively follow and receive updates when I've submitted a new entry without having to worry about checking the site independently.

Therefore, I think I've successfully adjusted the site so buttons on the right are now available to both follow and be informed of an update via e-mail.

Monday, 7 October 2013

A little insight into the future

Today I received the Consent for Transplant form and a 20 page leaflet detailing everything to go with it.

It...covers....everything. No, really...everything. and it bought back the following memory:

Several years ago, I went to a private doctor for a mini-procedure involving an implant completely unrelated to my current issue. After the procedure, he recommended I read the leaflet that comes with the implant. After taking a minute to read it to himself, in silence, he muttered ''s probably best you don't...' scrunched it up and put it back in his draw. Then summarised the leaflet for me, leaving out the medical fear factor.
Medicine leaflets are designed to warn patients of every possibility, including some which leave the patient suddenly wanting to adopt the life of a hermit on that tiny island waaaaay out there cos its safer, ktxbai, but in reality, only an unlucky 1% might actually encounter them.

On reading a 20 page leaflet based solely on 'the process of a transplant, before and after' plus side-effects, I had an overwhelming need for a doctor to come along, take the leaflet and say 'yup, enough of that, you'll be fiiiiiiiiine'.
It may have been my common sense popping up in disguise, reminding me that the leaflet was highlighting ALL possibilities and the entire process may well be a smooth run for me.
Don't get me wrong, it's a ridiculously useful and informative read, but I'm honestly hoping some of the stuff they've written in there is based on the 'we have to tell you about everything, including the possible scenario of a meteorite hitting earth and nudging the surgeon's hand a cm' factor.

Since receiving then reading the leaflet, I've gone through a number of emotions.
(actually, my first, original reaction on opening the envelope was to poop myself as first I saw the words 'witness signature' and, I kid you not, honestly thought someone was suing us for something! Hello, anxiety!).
These were as follows:

  1. Excitement - 'oh cool, that arrived quickly' 
  2. Curiousity - 'oh wow...this is interesting....lots of info'
  3. Consternation - ''
  4. A little bit of fear - *silence*

My final reaction - Numb: I stood up from the sofa, and stood in the centre of the living room. Tom walks in, sees me, gives me a hug and I burst into tears.

I yeah.

I started writing this entry straight after the hug, but I've gone over it a few times to ensure it makes sense. The emotions and thoughts I had whilst reading the leaflet are fresh.
I won't deny it: a part of my brain thought 'do I really want to go ahead with this...'
My brain immediately started reminding me what the doctor said, my final decision based on logic before shock hit, then reminding myself how much better I'll feel after a successful operation.

It's just...there are SO many factors to consider, more than I think I was willing to realise. So many.
The transplant process involves numerous tests, before and after, countless check-ups, so many possible side effects to watch out for (am I highlighting the quantities of things enough here?).
Admittedly, the doctor said to me 'you'll have a lot to think about after the transplant...' and my response was 'yes, but I do that anyway. After the operation, it might still be the same, but with energy and clarity of thought!'

As I write this, my head is clearing and logic is starting to glimmer through. Yes, it was a lot of information to take in (fortunately my living donor contact warned me in advance so it wouldn't knock me out from the shock), but I think a part of me felt like there was a ridiculous amount I had to do and generalloy went into overload: 'ohgodIcan'tletanythinggowrongaaarrgh!'
But truth be told....there's minimal I need to do my end. At least, not until I've had the operation and I've recovered enough to be able to handle it.

And sure I'll be taking a lot of medication which have some...apparently interesting potential side-effects, but I've been taking vitamin pills for years (had about 5 daily as a kid) and I'm taking stuff now, so it won't be new and I might not suffer any side-effects at all.

Cats: making any serious moment funny since the internet was born

Yes, this leaflet gave me a huge shock, highlighting exactly what I'll go through, but then I've undergone so much in my life, what's one more thing that could actually help the next 10 years be brighter and full of so much more energy.  On top of that, the consent form actually that the transplant is voluntary and I can withdraw at any point, without giving any reason. Further highlighting the fact that this operation is for the recipient and it's the recipient's choice....making the choice all the easier to make.
My contact, bless her, wrote a post-it on the consent form, stating there was no rush for me to sign it, but just so I'm aware. Making me feel all the more like it's in my control.

I'm in safe hands and I know it. It's just each step close I take towards the actual op, I get hit by a tide of shock.

If you've got this far, it may be obvious by now I'm still in a bit of shock and I'm not sure how to sign this particular blog off as, despite writing so much, it's still raw and there's still a lot going through my head (the feeling I wanted to capture in this blog), so instead of writing some inspirational randomness, let me leave you with this:

Then reality hits home

Did you know:
In the UK between 1 April 2012 and 31 March 2013 - 4212 organ transplants were carried out, thanks to the generosity of 2313 donors -

Received a call from the living donor team Friday. Nothing makes the prospect of an impending transplant a firmer reality than being asked 'do you have anyone you'd like to put under consideration?' and being informed you'll be joining the database (this happens whether you have a living donor or are put on the waiting list).
I think my first reaction was 'Holy sh*t...this is actually happening' and found myself cupping my head whilst trying to sound as normal as possible on the phone.

After talking to my contact for 20 minutes, my brain nearly cracked when it occurred to me the first difficult decision I had to make (having the transplant) was actually pretty easy.
The next one might be the hardest: I might have to make a huge decision which would not just involve me, but also the lives of the people I have as possible living candidates.
This right here is a terrifying concept....
Of course, I could just go on the waiting list and see what the system brings up, but I had it advised that if I have a living donor option, it's worth looking into.

Fortunately, I've already had a couple of people step up and offer themselves for the test. Despite fretting, both the doctor and the volunteers told me 'let's concern ourselves with whether there's a match or not before worrying about actually deciding if you'll accept it'. Which is a fair point and one I'm willing to go for: I could fret, fret, fret over a possible donor, finally decide yes, then it turns out, they're not a match.

3 tests have to be made:
1) blood test to make sure the donor and the recipient are all good and healthy
2) tissue test
3) test tube match: blood from both donor and recipient is put in a tube and they're checked for compatibility

And if a match is found? My delay on taking an offered kidney from a live donor (especially someone I know) is based on how the donor will be after the transplant. Will having donated affect them in a big way? Who'll look after them? Do they have anyone else who relays on them?
And let's not mention the guilt if they offer a kidney and it's rejected ('well, sh* probably could have kept using').

However, I'm informed a kidney transplant is actually the easiest transplant there is and there'a huge success rate. The doctor's tone on discussing it was almost like it was a walk in the park. Not a 'I must reassure this patient', but a genuine 'no really, it's so simple'. This was one of the key factors in pushing me towards having one.
The donor also recovers a hell of a lot quicker than the recipient and, although they undergo their own doctor visits, the recipient is the one who undergoes extra medication, tests, and doctor appointments (that's not new to me).
They're also treated by a different team than that of the recipient to ensure both receive full attention, rather than divided attention from one team looking after both.
The only difficulty kidney transplants face is...there aren't enough donors.

One thing I'm particularly grateful for is I have time. I'm not in dire need, so I can think about every action before I take it...which is great given I rarely jump into big decisions. Especially if they're something this huge!

January 2014, I'll be hitting 30, and it seems our 2014 is going to start with a bang. Therefore, I'm happy to do some tests these next few months, but I'm not going to undergo anything big until the new year.
I want to start my 30s as I mean to go on: up and about, looking the world in the eye, not lying down on a hospital bed, waiting. If I can help it. If the next few months see me in a hospital bed, then....I'll stare that
clock in the eye. Yup.

Next stage: I'm going to give it a week...have a think, consider all angles, then next Monday I'll be making the call and giving her the list.

Thursday, 3 October 2013

With just a little help from my friends

Due to the response my linking this blog on Facebook has received, I wanted to add a second update today:

There's a selection of things getting me through experiencing this medical crazy: an awesome specialist who seems to take a personal interest in making sure I stay positive and live a full life, my parents managing to keep it together whenever I discuss this with them or raise new news, and of course Tom, my husband, for being a rock and being able to put a smile on my face during the darkest moments, but also knowing when I just need to curl up into a ball and stop for a moment.

However, another truly important element is my friends. Knowing I've got mental support from people around me is a massive help in itself. And the last two months have been the biggest demonstration of this.

Two months before I informed my doctor of my final decision, I began having anxiety attacks.
I'm a natural worrier and always concerned with how things are going to turn out. I'm also fairly empathic so can pick up on emotions bouncing around and know when tensions are rising.
As my decision began to sink in, despite knowing it was for the best, every little daily decision, every little concern and every 'I may have let someone down' was suddenly magnified to intense proportions.
And now I could not only pick up on the slightest nuances of emotions that were normally there, but my brain now created some exaggerated worries of its own.
Instead of being able to take a step back, evaluate the situation, then deal with it: the problem was now put on a huge projector before me, a klaxon went off in my head and there was nothing I could do which wouldn't just make the problem worse despite the comments of (when seeing me freak out) 'take a breath, it's not that bad.'
Logic agreed with them. The wall in my head flipped the bird and said 'No, it's worse!'
It appears, waiting for my appointment and not knowing what to expect was too much for my brain to cope with so it displaced the worries onto normal, every day things.

So I had to leave my job. I used to thrive under pressure. Not any more. Even booking train tickets started giving me 'moment's.

Since leaving, I've calmed as I can now focus on myself. My moments still arise on occasion, but are far fewer and I feel like my world is slowly starting to make sense again. I'm now looking into acting work as I've always been passionate about performing and I feel that's more in my control. Plus it gets me out the house and meeting new people as I was verging on Agoraphobia and I wanted to stamp on this as soon as possible.

And the support I received from friends was like a life raft.

During worry dreams expressing my fears, and even moments of anxiety, in the back of my mind I've always had a shadow of people behind me, sending me their well wishes and their good vibes. It's almost like an invisible hand on the shoulder and whisper of 'you'll get through this'.

And I can't think these people enough for this. The difference knowing I've got support is amazing.

The beginning

The last 4 years have seen me undertake test after test and visit a variety of specialists and doctors, all due to the fact that over 4 years ago I kept 'feeling a bit tired' and getting headaches over the most ridiculous reasons.
(I actually feel like I've spent the majority of my life in a doctor's waiting rooms or having blood tests).

After 2 biopsy's, several blood tests and specialist after specialist, I was diagnosed as having kidney failure [] and put on a selection of medication for: my blood pressure, my Vitamin D deficiency (the kind the body produces itself) and a weekly, self-applied injection for anaemia. At the beginning, I'd been told the injection should become monthly. This is yet to happen.

The second biopsy revealed that the failure was due to scarring. This was a result of a combination of things: the headaches I suffered ignored paracetamol, so I resorted to Neurofen for relief, not realising that 1) my kidneys had an issue 2) Neurofen could increase their failure.
I later learnt the headaches were caused by high blood pressure. Part of the reason I had high blood pressure was my kidneys were failing, but kidney failure also increases blood pressure (one beautifully vicious circle).

My perspective of this situation: this whole time, I've been flowing down a river, pulled by its currents and heading directly for the waterfall.
My specialist saw me, and threw me a rope (high blood pressure tablets). However, due to how strong the currents were, he was unable to pull me out (kidney failure can't be reversed). He tied the rope to a sturdy rock and has been waiting for me to give the signal before going to find me a net to land on if the current becomes too strong (transplant). In the meantime, I have to hope the rope stays strong (keep taking medication).
However, deep down, I hoped that despite being stuck I could still go ahead and carry on as normal (would the rope support both myself and a baby?).

It's a terrifying image...but this is a terrifying situation/choice to make.

LATEST NEWS: The rope is fine....for now. It's possible 10 years time the currents will become too strong and a net will definitely be required. But the rope is ok for now.
However, if babies enter the picture, the rope won't manage and the currents win.

I went away and thought about it for a while.

When, for the time being, the current's pulling persistently at your legs, you're getting progressively more tired, slightly achy, and are just tired of being tired, then someone who can help whispers 'cut the rope...I'll catch you. You've a strong chance of landing in the net I've found you....'
What choice do you take?

On 27 September, I finally made the decision which will effect me for the rest of my life and agreed to have the transplant.

So, I thought I'd start a blog, which might give people an insight into the process.I know there are probably hundreds of these blogs out there...but this one's mine. It might also help me put things into prospective too.
I hadn't thought of the river/rope/net analogy until now....but it fits.

Am I scared? No...ok a little...but less than when I was waiting to make the choice. If anything, I'm really tired of feeling tired.