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.