The option of opting for Organ Donation

I couldn't help but notice that someone has ticked 'no' in my vote on the right of this blog asking people if they would like an 'opt-out' system or not. This is a subject of fascination for me.

An opt-out system is when you presume that everyone is happy to donate their organs in death unless they say otherwise (and 'opt-out'). 65% of people say they'd donate their organs but only 27% have got around to getting a donor card. The opt-out system is meant to capture that missing 40% or so of the population and reduce waiting lists for people awaiting transplants.

I actually had to research online to find what the arguments against this system could be. Mentally, my fizzes and whirrs weren't getting me any answers. The answer appears (if my research isn't missing something) to be philosophical.

The reason why, it appears the opt-out system is not appealing to some people is this. It is assuming an agreed consent by the population. But this necessarily includes people who can't make informed decisions such as mental patients, children or some of the elderly. The opt-out system, therefore, is viewed by our critics as a system that is making assumptions we're not allowed to make.

Sorry, what? Can't you just not take the organs from those people who don't have the mental ability to make informed decisions? Or do what we do in this type of circumstance for other decisions needing done, such as look to the person with the power of attorney?

The only other big argument out there is that moving to an opt-out system might provoke an anti-donation backlash where people throw their arms up in the air, get out on the streets and shout 'GIVE US OUR ORGANS BACK!' Well, not quite, but you'd imagine as much by the way some people talk about it online. Anyway, they think it might backfire with people withdrawing their support. Would it really though? Is it going to reduce the 27% of people who willingly sign up to get donor cards? It might, I suppose, risk a minor reduction in the 65% of people who say they'd donate, but we're only looking to get more than 27%. 100% is obviously going to take some time.

In the online debates, another supposed 'against' argument is that just moving to opt-out doesn't mean you immediately have more donations. ie. you also have to have a supporting system to facilitate the transplants. Is this a reason not to do it? Surely it's just a contextual remark. If opening a door doesn't have an immediate effect, does that mean you should keep it shut? Hell, I wait a heck of a long time for my Calippo to slip down to my tongue sometimes, but I don't give up just because I have to wait a while for it to arrive.

If you think the opt-out argument seems strong, then you'll be interested to see that 2/3 in a BBC poll of Welsh people voted for the system to be implemented in Wales. You'll also be interested to read that the deputy leader in Northern Ireland is calling for the system there too. (they might have a bit more to work on than just availability of organs though. Looks like they need more donated surgeons too.)

The answer, in my mind, to really reaching people on this subject is to ask people to put themselves in the position of someone who would die if they didn't get this organ - like me 2 years ago. In the debate in Ireland, one comment I picked up on was someone saying it 'should be a gift, not a duty'. But, if YOU needed a heart, or a lung, kidney or pancreas, would you be worrying about how the damn thing was wrapped, and presented to you, or would you- YOU- just want the thing straight up and quick while you're at it?

On my shingles update, this is now me. I have a mask. I have no white blood cells - ie. no defence. I'm a walking attraction for bugs, bacteria and infections. I inject myself with some incentive for my bone marrow to wake up and get cracking, but so far no cookies. Gotta stop the anti-viral drugs for the Shingles to get the blood cells back for good. Gotta keep the drugs going to stop the Shingles for good. Gotta... um. Not quite sure what I gotta do. But I'm not going to wear this mask for my party this weekend or I might be spending the next year trying to Getta me some more friends.

Prioritising Organs

I've been talking about prioritising recipients for organs (ie people like me). But I now find myself prioritising between organs.  I feel quite tongue-tied. And that doesn't mean I'm giving my tongue any leg ups in the pecking order. Or my leg if it pays it that service. Etc... (Forgive me. That was fun/stupid).

I just paid a visit to the doctor. They take the 'laissez faire' approach here in France, so I just go in to hospital once a month. Turns out I have been blasting myself with immuno suppressants at 4 times the dose my body needed. That'd be why I can't carry a mug of tea without using two hands at the moment. (And yes, that does get very embarrassing when you're in Costa Coffee bringing a tray of grande café lattés over to your new boss...) Maybe France should be more 'laissez come into hospital more regularly'. 

Anyway, apart from the minor overdose, all is great (relatively speaking that is!). I've lost a good 4 kilos somehow over the last month. They don't seem bothered. My skinny jeans are coming back out from the back of the cupboard. If only I didn't have the plague, I could feasibly get away with a crop top right now. My white blood cells have been eradicated, possibly by the shingles, so I should expect to feel feverish fairly soon. They've cut out my 'let all viruses run wild' pill (cellcept) for a week in the hope that maybe my shingles will get got and I'll start reproducing some whities out of my bone marrow. If I don't, they'll give me some for free in the shape of an injection. God dammit they're generous.

And the kid conversation (not my substitute kid (the kidney), but the real deal) looks like it's going to be a tough one if it's going to exist at all. And this is where the prioritisation of the organs come in.

You have a kidney. It's spluttering along. Conversation today went like this:

'You're not about to have kidney failure, you know' she said (my doc)
'How long have I got?' I tentatively ask. I know this is naughty. How the hell is she to know.
'How long is long?' she says. I like that. (My dad's a philosopher).
'Ten years?' I tried. That sounds an age away. An entire 'decade'.
'It's very rare', she said. 'It's possible but...'
'Five?' I interrupt to try again. This was starting not to be so fun.
She wobbled her head. I think that meant a 'yeaaaaah'. And then: 'But everyone's different...blah...blah....some people have awful biopsies.....say never going to make it.... still going on after years and years..... blah.....blah'.

So. Conclusion: I'll be stretched out on that table again in my mid-30s. And that's not that far away.

Package up that neat little summary, and then swallow the understanding that you could try to have a kid - who/how are they to 'stop me' after all (see image of possible method) - but it's going to be risky. My five years of kidney function might turn into a couple of months. And it's a guessing game to know for sure what levels of risk we're talking. 50%? 30%? 80%? It's those blasted statistics again, determining my every thought.

In a month I get to meet the best risk analyser. She's like a gambling champion. She's so quick at weighing up probabilities, she could take most people down over a couple of stumpies, but she's chosen to rumble around in the risks of life-endangering fertility issues instead.

And here's the problem. I know she won't give me a real answer. She can't. She's not really allowed. I found out a month ago that there's going to be 'A' risk of sorts. How much, our poker champion here is going to help me figure out. But then the real gambling and the (work with me here) actual placing of the chips is up to me.

So, can you see the dilemma?
A. I have a kidney. I try for a kid and I lose my kidney so I have to ask someone else to give me a kidney. I might not get to keep the kid either as I'd likely have kidney failure/moved onto dialysis while trying to grow a baby inside of me.
B. Perfect world. I have a kidney. I try for a kid and keep the kid and the kidney.  Everyone feels very kiddy.
C. I pay someone else to have a kid and I keep my kidney, but I've used their womb/ovaries.

Seriously. I hate this next abbreviation, but it probably fits right now: WTF?

Also, why are someone else's ovaries less important than my (first) transplanted kidney? Or, seen another way, I surely can't ask for someone else's kidney because I put my own ovaries before them? Then we're no longer talking about a transplant to save my life, but are talking about one so I can try for a kid. That's quite a different issue. Again, I'm being quite gourmand even thinking about it.

But, seriously, what percentage risk isn't too high, then, for me to do it? And how the F am I meant to make that call.

Anyway, I just have to wait a month - 4 more weeks - till I find out more. ahh. So. What shall I do tomorrow?

This Resolution will not be Kidnified

I made a couple of New Years Resolutions. My first was not to allow 2012 to be dominated by my kidney.
What I've realised though is that, in actual fact, this blog is kidnifying me. Thinking about this blog and kidney news, everything is acquiring a kidney taste (gross). My Resolution has been Kidnified. By me.

I watched The Descendants last night, for example. Instead of taking away reflections on the family's dynamics, anguish, and great acting, I have harboured away my reactions to the doctor's words at the start 'we need to start thinking about organ donation' about a lady in a coma. It made me realise that it's no wonder, I guess, that all those on organ donation lists don't end up donating, because when it comes to the punch, who wants to think about that when they're having to deal with their relations passing away.

'Go in peace' they say. And can peace involve organ donation?

Going with my kidnification, I found an incredible NYTimes article this morning talking about regulations on which patient on which list should get a kidney going spare first. Currently, these regulations are a 'little bit like the Wild West'. “There has to be some regulation' says Dr. Robert A. Montgomery, a transplant specialist at Hopkins, 'and it has to be fair, because if people don’t think it’s fair, they’re not going to donate organs.” Well said.

Because the US is so sprawling, and has such a (subjectively speaking) warped health system, there's no joint pool of kidneys that can be used for paired kidney donation (where you give for your sister, for example, but aren't a match, so your kidney goes to another couple, and their kidney comes to your sis).

“Organs should be seen as a national resource,” were the wise, well put words of Dr. Sandy Feng, a transplant surgeon at the University of California, San Francisco,

Without this national pool, you see, you have people making their own calls in their own registers/states as to whether a patient who rejects more/faster than others (and here we might be talking about me if my kidney doesn't hold on in there) should get a kidney before or after others who might be perfect hosts.

What do you think? If you're younger, should you get a kidney earlier so you can get back out there and play? Or are you fitter and can hold out on dialysis longer than someone in their 60s so should be put to the back of the queue? What about me? If my dad's kidney doesn't hold out longer than three years in me, for example, should I be put to the front of the queue because of my tough journey, or right at the back because I wasn't appreciative enough the first time around?

And doesn't it seem odd that there aren't regulations on this already? If you were given the job tomorrow of looking at kidney transplants, wouldn't that be one of your first questions: 'how should we distribute kidneys that become available? and shouldn't there be standard rules on this?'

How many people have to pop off every year, fall sick with kidney disease, weigh down on health systems and sell their personal stories to the media to get your attention?

A donation by a Good Samaritan, Rick Ruzzamenti, upper left, set in motion a 60-person chain of transplants that ended with a kidney for Donald C. Terry Jr., bottom right. 

I talked about paired donation before in a previous post. This image above comes from an article explaining how one dude gave his kidney in an altruistic donation, and it sparked a chain of no less than 60 kidney donors. The article is amazing. It runs through so many personal stories of nephews giving to cousins, ex-husbands giving to much hated ex-wives for the sake of their children, lovers giving to each other, sons to mums and more. There's more emotion wrapped up in that little photo above than can be contained in any blog post/article or documentary. And it shows that waiting lists are pointless when there are enough donors out there to fix the problem.

It also pointed out some stats (I told you I live by them) that I didn't like. A third of donors won't match the people they want to donate to, even if they share the same blood type. I was lucky the first time around, for example, because not just my dad, but also my brother and my cousin were matches. And that was out of just 6 people tested (my husband, mum and other brother, much to their chagrin, were not). But I read in this article that part of the reason that matches are so hard to find is because of antibodies that can build up due to previous transplants, pregnancies etc... These antibodies mean that, close matches in terms of blood types etc..., would just be rejected if plumbed in. I have an antibody that's just arrived. Does this mean that my brother and cousin are no longer matches? That's my safety net right there. And I've just found a hole in it.

Happy as a Bean

Audio interview: If I had four kidneys, I'd give three, says a man who gave his kidney to a friend who was number 8003 on the waiting list who was going from flying to dying before his eyes.

So nice to hear in his voice how happy he is. 

Reminds me of my dad's smile when I woke up after the operation.

'You look like the Cat who's got the cream' my brother told him when he saw him. [click link to see fellow beeming cat]

There, another heartening story. Racking them up.

It is excellent that these sorts of stories do get picked up, and on BBC's flagship morning news programme no less. More work needs to be done so that it's at the top of the news more frequently. The underlying warning to take away from the heartening story above, though, - the shriek behind the giggle - is that his friend was 8003rd on the waiting list. That's no laughing matter.

In Canada, there's a shortage of donations, so over 200 people died last year when their bodies couldn't take dialysis any more (the swarm of chemicals it sends through your veins is not natural). I would go insane if I ended up in the same situation. Every night, I'd be thinking about all the organs going to waste every day. Each could so, so, so easily be giving these exhausted, dialysis soldiers a break.

And South America is suffering some odd, inexplicable kidney epidemic at the moment, with people falling left right and centre, and doing 'home made dialysis' to keep themselves alive (no idea how that works). Hell, even Hugo Chavez was struck down, albeit for slightly different reasons.

These stories aren't one off. All of them are really pretty dramatic. And the answer is so blindingly, bleeding obvious. It is more than insane that we, in the 21st century of surrogacy/IVF and laser eye surgery can't join the dots.

1 + 1 = 2. We learnt that aged 3.

Roar

Campaigner or Complainer?

Having made this blog public, I'm now rather self-conscious. I'd been hiding behind a 'I'm just as good as the Jones'' front but I just blew it in 24 hours. oops

It has made me look objectively at my musings and I've realised I sound like Moaning Myrtle. I am making kidney transplants, and organ donation out to be a bad thing. I am not encouraging donation. I'm probably terrifying potential recipients. I'm likely upsetting my dad.

I don't want to lie. But it's unfair, and unbalanced of me to use this as a groaning board. When I cycle on a velib around Paris, go to parties, head out for dinners, dangle my feet over the Seine, feeling like I could be Mrs Jones/Mme Bertrand (maybe better than her even), I don't write about it. And that's not fair.

Given that it's the 14th Feb, I wanted to tell you a heartening story that's happened to me since September 2009. First though:

Happy Valentines Day

An old lady, probably in her 80s or 90s, sat in the bed opposite me in my Hammersmith ward last year. I don't know her name. (It's odd, but I really like old people. They have figured their stuff out. Unless they've turned cranky, which in itself is probably just honest, they're usually always kind, because they know that kind is good, unarguably so, so why not shout about it). She had come in for emergency dialysis. She hooked herself up to the machine, which looks like this (right) for those who haven't seen one before. Your blood goes out to the machine in one tube with a whirring noise, gets filtered and heads back to home all clean through another.

She sat there for the 3 hours that it took, and then she lay, quietly there and we had a natter. She had been on and off dialysis for 8 years and was scared of the operation, so hadn't pushed for it even though her son had offered his kidney. She was tired. Dialysis tires you out. We talked, she was very kind (you see?). Her face had rivers of smiles etched all over it. If you find someone you connect with in a kidney ward, even if they're decades older than you, it's very hard not to feel like you're deeply invested in them. Odd, inexplicable probably, but true. 

I got back to my book after a while (Love in the time of cholera - my docs kept encouraging me to read something a bit more uplifting....) and I noticed that she was crying. I HATE seeing old people cry. I gave her a hug, frail that she was, and her shoulders relaxed. I wanted to bundle her up and do puzzles together in my flat, eating baked potatoes and playing cards, but she might have asked to move wards if I'd suggested that so I came up with a better plan. 

(Don't know who this is, but it's pretty bang on)

I gave her my massive whoopa (Made that word up. It works) headphones, and my Apple Mac and set her up watching 'The African Queen'. She seemed very bemused at the technology, but turned the volume up to the max so the whole ward could hear it and sat back in her bed. A few minutes later, it felt like raining gold when I peeked up and saw her giggling to herself at the film. Her shoulders were actually jiggling up and down, she was so loving the movie and the romance between Humprey Bogart & Katharine Hepburn that never gets tired.

Now, though it seems like a sad story, tell me that doesn't make you feel warm inside. It most certainly warms the cockles. And just before the 14th Feb comes to an end too. 

I treasure that memory and I wouldn't have it, nor plenty others like it, if I hadn't been plonked in the strange situation that I'm in. 

ps. my shingles has got one heck of a lot better thanks to tramadol and 2 other pain killers, and time. My back looks like a horror movie in a gruesomely exciting way but I won't upload a photo of it for fear of losing one of my two followers of this blog (one of which is me).

pps. My creatinine has dropped to 181. Big smiley face. 

ppps. I had to spend Valentine's Evening in a Gp ward to check out my shingles rash. Slightly drooping smiles on my face. 

lastly  I realise I'm now publishing this the day after Valentine's Day due to nasty GP waiting hours (and they say the NHS is bad). But every day is the 14th, as says Outkast, right? So let's all be jolly, everywhere, all the time.  I'm a campaigner after all. That's right. x

Welsh Supremacy in Kidney law

It makes me warm inside to think of Wales pioneering their way forward in the UK as regards laws about organ donation. I sometimes hide the fact that I'm all of 1/16 Welsh, but today I'll say it loud and proud: Rwy'n dy garu di, Wales.

Little Wales is moving to an opt-out system where everyone will be on a organ donation register unless they've said they do NOT want to be. It presumes consent unless told otherwise.

Already, Wales has shown that it's full of a mature bunch of citizens with donation rates of just under 30 per million deceased, far beating those of England (only just over half that), France (around 24/1m), Italy (21/m) and Belgium (20.5/m).

And, for those who have always poked fun at the Welsh, you should understand that there are no boundaries to where the kidneys donated by Welsh could go, so that people needing transplants in England will likely be receiving Welsh kidneys by the time this law comes into effect in 2015.

If England doesn't catch up soon, therefore, there'll be 1000s of us turning partly Welsh every year. Now I'm delighted, even proud, especially on this particular day, to know this. For those of you who find this strange, well there's only one thing to do about it - join the opt-out campaign for the whole of the UK. I'm just saying...

Plans unveiled to increase live kidney transplantataions

Plans unveiled for increasing living kidney transplantation in the UK at any rate

Apparently, this means that different ways of donating, including paired and pooled donation and altruistic donations for any recipient in need are going to be invested in (and heavily marketed I assume). 

 

Paired/Pooled donation being this [right] 

Altruistic donation being this [left] (imagine the giver also being blindfolded):

 

In my bed in Hammersmith, London, where I had my transplant, I was next to a couple who'd been part of a triplet transplant. He needed a new kidney. His wife wasn't a match. She donated and her kidney was received by someone in Scotland. The person in Scotland's partner's kidney was received by someone in Birmingham whose partner's kidney was received by the man sitting next to me.

If that scheme could be invested in more, then maybe we wouldn't be relying on waiting lists turning around as we currently do. Only this week I found out that, of the 400 deaths each day of 'declared donors' only 2 have their organs used for transplantation.

The starkest statistic is that, in 2010/11, there were 1.5K kidney donations from dead donors and 1K from living donors. Of all the millions in the UK who say they have donor cards, only 1000 are turning into kidney transplants a year. Given that I'm 2.5 years into my kidney transplant and look like I might soon need another one, I'm invested in getting this system working better. Deeply invested, in fact. Scarily so. 

This weekend I found myself thinking through the order of priority in which I might ask my relations for their kidneys. My ever generous uncle, my brother, my cousin, my in-laws... If my kidney is on its way out after a couple of years and I'm not even 32, I might actually have to project plan my way through to survival. Please would someone get cracking on the stem cell research. 

Watch this moving appeal from Michael J Fox.

I hear ya.

Sick Kidney Humour

This is just that incy wincy little bit too tongue in cheek. But I should let you judge for yourselves. Sit back and enjoy: Seymour Jones and the Temple of the Chronic Kidney Disease.

This time I'm not joking. They, however, are having a whale of time.

(slightly incredulous that a comment at the bottom of this video on Youtube really says: "This is a hilarious video with a lot of really great acting")

Social media campaign to find surrogate mother

 I read a remarkable article about a Social Media campaign to find a bone marrow donor on Mashable which got me thinking. The possibilities are endless, I thought. Why not look for a surrogate mother in the same way. '#FindKateaSurrogate'. Accompanied by a twitpic of me and my husband, it could be an extremely effective message board. The army of mummy bloggers out on the net might actually feel they could get to know me through this blog.

My hands would still be tied, however, by the fact that I live in France where surrogacy is illegal. Check the story of the French couple (left) whose twins were denied French citizenship because they'd been born by a Surrogate in California.

So maybe I could do a twitter campaign for the UK only and then uproot my husband and myself back to England so we count as UK residents to be able to apply for UK laws on surrogacy? It's a thought, albeit a fairly destructive one.

I can see why people in the UK opt for the surrogacy clinics in India - you pay more, and you have to stay there for 3 months at the end to get your paperwork, but it only takes 9 months. Or California where you pay, but you earn back fourfold in the time you save looking for a surrogate who 'clicks with you' in the UK.

What strikes me every time I sit back and think about this is that my kidney disease was the tip of the iceberg. It has led to a kidney transplant (that involved dragging my family through the treadmill too), to numerous infections and snotty noses, to an insurance nightmare, to an inability to travel (and so visit developing countries which the organisation I work for supports), to a high risk of cancer, and now to what's equivalent to infertility.

That first day when the doctor in Ladbroke Grove, London, told me I had scarily high blood pressure and I locked up my bike and, in my flip flops, rang my husband to say I'd best go and check it out in hospital, I did NOT think it would translate into an avalanche of problems like this.

Thankfully doctors break the news of each of these delights to you bit by bit and not all at the start. Managing a transplant patient is a test of empathy, patience, humanity, and, I would have thought, must be an absolutely exhausting job. I rocked up all jolly, and 2 years later, I feel I've been battered round the head by Mohammed Ali

Kidney has permanent scarring

Feel like I've got a world record. I've been incredibly successful in failing to keep the kidney I was so kindly given happy and welcome in its new home. I rejected it unceremoniously for a few months, and then I got it nice and infected for good measure. I lost 100 creatinine points in so doing, landing at a round, and nasty sounding 200. That's 30% or so of kidney function remaining for those not in the medicinal know. You don't need to have any sort of degree to know it doesn't sound good.

I had an odd, almost out of body experience as I said, numbed and placid before a matronly consultant I've never met before and heard her say, in French, that I was unlikely ever to have children. They can't say for sure as it's such a big thing to say with just one biopsy that is, after all, not representative of the whole kidney given that they only take out such a tiny part, but it's not looking promising. My 'vascular' whatevers apparently aren't doing all that well after the long beating I've given them over the past 6 months. Whoopideedoodar.

I immediately, being female, a planner, and (although struggling a bit more now...) usually optimistic, have started looking at my options. They are:
1. Nothing. hope I'll defy all medical history and pop out a couple of beeming children, to the applause of all my friends of family. 'What a trooper' they cry. 'Only Kate!' etc... Yah right.

2. I go down the SURROGACY route. A friend's sister is in fact Avey in this blog . This is the surrogacy clinic that manages the whole thing. You have to stay in the country for 3 months when you pick up the child because that's how long it takes for the UK Embassy to administer a passport for your confused child.

3. Adoption... I just see words like 'Conseil General' and find myself downloading spreadsheets and ven diagrams and power point presentations like this one

Hard not to notice the big words, '9 MOIS' or 'AGREMENT REFUSE'.

Given my kidney luck, I'll probably be rejected a nice two years into the process.

And let's not forget the wonderful confusion of us being two Brits living in France.

Am I resident in the UK? Can I apply for Surrogacy UK? If I adopt a kid in France, is my kid then also British or would my own child then be of a different nationality from me?

Obviously, if anyone is in the same position as me (highly unlikely I now realise) or thinks they can help, I'd love some advice.

Feeling more than a little bit lost.

Out of body Antibody

I got out of hospital for Christmas but without any answers.

The docs had forgotten I was on Aspirin so couldn't do the biopsy until next week in case of bleeding.

I asked for a blood transfusion to put some more red blood cells into me (as that's the answer the UK use when they make the same mistake), but they weren't having any of it here in France. I have to wait a full week (it's 3 days in England...) to let the aspirin get out of my system and have this biopsy before knowing for sure what's wrong with me.

My consultant said it was either:
1. One of the two types of rejection - cellular or antibody - (but I thought it was really rare to build up an antibody against your dad?), or
2. a viral infection (takes 10 days to test for that...), or
3. nothing at all and my kidney's just recovering from being infected last month.

If it's the virus, I'm to reduce my Cellcept which lets viruses take hold. I know that because I've had a few skin growths due to those lovely pills already (Another of the 'side effects' no one told me about at the start. You suddenly find yourself visiting dermatologists with nitrogen oxide being blasted at you because of a kidney problem. It's a slight mental leap).
If it's rejection, I down a kilo of steroids and lie shaking on a bed until they wear off

If it's nothing at all, I hope and pray it's not permanent scarring, but is just a bit of inflammation.

And, in case you thought you understood all of that, if they reduce the Cellcept then there's a chance of rejection creeping back.

Round and round the circle like a teddy bear....

Feeling dizzy? So am I

Hospitalised

Breakfast. Oh, and my contact lenses!

Another blood test this morning. I was so nervous throughout the night I didn't sleep. I then tried downing almost 2 litres before 8.30am so I could be sure my tests wouldn't show me as dehydrated but I'm not sure I succeeded. I can't beat it. I drink 1 litre and I pee 1.5l. What to do?!

Verdict: Creatinine at 190. Down 5 points. "Stable", the doctor said, so they could either put me in hospital for 3 days before Christmas or 3 days afterwards. I went for the former. My whole family's here, but at least I'll get out before Xmas eve and can get into Christmas mood instead of worrying about it the whole way through. Passing the port will be my Xmas moto. Pass it....on to the next person. Pass that.....to someone else.

They think it's either dehydration or perhaps the kidney is dilated/enlarged as a result of the infection. If it's not that, they don't know what the problem is. My potassium is really low still (3.2 and has been that for 3 weeks). They don't understand that either.

SOMEONE GIVE ME AN ANSWER PLEASE.

Most importantly, please don't let me ruin Christmas. I couldn't bear it.

Magic Pills

I take a total of 35 pills a day. Thank God I can down them all in one. I'm not squeamish like that. It would take up the best part of 30 mins having to swallow them one by one.

My creatinine's at 196 at the moment. Down from 200 a week ago. What an achievement. Not.

The docs put wagers on my Creatinine going down to its 80s as I lay horizontal post the transplant. It was rather a disappointment, and slightly awkward when it then stuck at 100. My norm back then (sigh) was 100-110. Since June and my bout of rejection, I've been on a roller coaster ride of between 140-240, hopes consistently dashed as week after week, while they may suddenly dip by 40 points and make me feel like the Queen of Bloody Everything, they then plummet and I'm back up at 'biopsy land'.

Any kidney person will tell you, though, that, unless you're on the verge of failure (end-stage renal failure), you could be signing yourself up to the Olympics, or booking yourself on a round the world trip the little the signs show. So, like some sort of sick parallel world, you step off the main streets into the warrens of plastic hospitals where you're yet again informed that, yes, you are very ill. These weird numbers rising and falling appear to dictate my life at the moment.

At present, my danger is very low potassium. I tried eating loads of bananas and chocolate (trust me on this one), but it wasn't enough so they added another 4 pills a day to my toxic cocktail. I also can't seem to stay hydrated - the kidney works overtime, especially at night (very convenient...) so I go to bed 56-57 kilos and wake up 52. Despite taking 400mg of Fludrocortisone to combat that, I'm still a leaky cauldron all through the night. Thank god no-one in my close circle of friends/family is a camping fan. If anyone has an answer to this particular problem, I'd love to hear it.

If my results dont go down tomorrow morning, I'm back in for a biopsy. Having just moved to France (and I'll post about the different systems UK-France next), it's all a little up in the air how they're going to handle this procedure. They're talking about a few days in hospital. Perfect timing then - just as my family turn up for Christmas...
Is my rejection back? Did the kidney infection leave some permanent damage? Maybe the rejection this summer never went away? Am I just going to trickle away to a second transplant with no apparent explanation like I did towards the first one? (they've never diagnosed my disease, just saying it's 'lupus-like'..).

About me

I'm 31 and I'm married but without children. Yet.

I have just moved to Paris from London. I had a kidney transplant 2 years 1 week ago from my dad.

I was oblivious to my problem until three months before my operation when a wicked head ache indicated high blood pressure, which in turn indicated that I had practically no kidneys left. They'd been attacked by my immune system. Yet another of the hundreds of thousands whose immune system's turned rogue and decided to attack the thing it's defending. Bit like an adolescent child taking it out on its mother. A child picking a scab. An Indian mother discarding the colustrum and feeding its newborn some biscuits. Anyone taking drugs. Someone with cancer stubbornly smoking. I'm amazing myself at how many examples there are indeed.

Guess I shouldn't be so hard on my immune system after all.

Anyways, 3 months after discovering the headache, I was flat out on a table waiting for my brave soldier of a dad's kidney. He'd been wheeled out and I was wheeled in. The rest of the family lay in wait upstairs for us to come through on our conveyor belt safe and sound to them. We did. Dad was up and about 5 days later. My recovery took 10 days as my wound is larger and I have a cocktail of drugs the docs need to get right.

In brief those 2 years have been good. I will never complain about the chance and luck I've had in being able to get through this without dialysis, and with still being able to get up and go to work each day, bring in an income, get promoted in my job, move countries, go out and party, travel the world and love my friends and family. 

But I've also rejected my kidney for several months (perhaps still ongoing), I've had Ecoli and ungratefully infected my brand spanking new kidney, got myself some septicemia and probably had about 6 or 7 biopsies of my new kidney since it landed in its new home.

Those things don't come without a certain amount of stress. And that's why I started this blog. I crave understanding sometimes.

Steak and Kidney Pie

My 'kid', my third member, side kick, spare battery, secret whistle..  I don't know what to call it. A third kidney actually gifted from someone, my dad to be precise, because not one but both of mine packed up secretly behind my back (or in it) quicker than you could say 'eek'.

Funny thing to find a vital organ you didn't know anything about apart has just packed it in. Kidneys. Umm? They taste gross in my grandmother's pies.  Boxers use them and bullies threaten them in playgrounds. They're also vegetables? Beans are named after them. Aren't they meant to be good for you? You put them in chilli con carne. They're oddly linked with cystitis. And cystitis is linked to too much sex. Serge Gainsbourg's definition of sex is that:

'Tu vas et tu viens. 

Entre mes reins'.. 

Beautiful rhyming. Wonderful visual...

All combined, I think my pre-op vision of what kidneys really were about was really rather warped. Who'd blame me.

The learning curve didn't stop there.  Doctors and nurses and hospitals and needles and enormously long and odd names of medicines suddenly rolled off your tongue and became second nature within the space of a couple of months. Hell, I'd go as far as to say I've discovered a whole new community-stroke-family out there [sic]. You're not meant to breach the patient-doctor codes, but if someone saves your life, trust me, it takes more than a few months and a blue coat not to feel that you want to give them a hug, say thank you and shower them in gifts and emotional speeches. It gets awkward, but no-one's pretending really, right? Everyone knows this is earth-shattering stuff.

I want to start this blog because, even though the very nature of a transplant means that you're not on your own, I feel alone sometimes in the daily roller coaster of my health and I know that I would benefit from finding a blog by someone like-minded to read. I am a charity campaigner and I can't help but feel this is a campaign I should be rallying behind. Lord knows, maybe I should be packing in my job and campaigning for this? Perhaps, if my health doesn't improve, I will end up campaigning with my life for my life for this. Hmmm. That became complicated...

I want to educate about what transplants mean for recipients, about what it's like for a donor, about the politics behind these operations, about the vast chasms between different countries' policies on the issue and about what each and every person could do to make a difference.

And I want to feel I can speak my mind about days that I sometimes find difficult. Although I have the most supportive, loving husband and family in the world, I still feel I want to tell other people about what I'm going through because sometimes, although it's wrong, I want recognition for the tough times. I hope that's not bad. It probably is and this is no way to start a blog. But there's really no point in going on if I'm not going to be honest about things.

If you're like me and want to get in touch, think I can help with a campaign, want to help me campaign, are worried, hesitant, passionate or angry about anything to do with kidney transplants, or organ donation of any kind, please email me or write a comment or tweet at me or any of those various tweemailable comms and I'll find the time. I think I'm on a mission.