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.