Creatinine Chart

I think you should be able to click on this and make it bigger in another window.

Before I bore some of you senseless over internet discoveries regarding reproduction, let's remember what brought us here in the first place - Kidnification.

I just wanted to draw your perhaps wandering attention to the little slide in results that's happened recently. That slide has happened over the past 3 months, and it's still sliding. 150 points is where I need to be to be able to produce that vomit for that horrible doctor lady I met. 120 is where I started. You might say I'm feeling a little proud/hopeful/excited/impatient at the moment while I wait for another month to pass.

Seriously. Where do images like this come from?

Remember that Creatinine rises with a curvy line on a graph so that a slight rise when you're at 120 means a lot more than a rise (or fall) of 10 when you're up where I am.

Remember too that I was up at way over 300 when I presented myself to my GP in 2009 with a headache before my transplant.

Lastly, remember that kidney health doesn't just mean time-consuming things like kids, but also time saving for whosoever might be the generous Donor No.2.

Little Miss K is a lot like Heather here. Proud as Punch.

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?

Is surrogacy greedy?

Well some just don't think twice do they. Story: Chinese parents have eight children by surrogates. 

(and, yes, all of these children are RIDICULOUSLY sweet. Especially the dumpling [sic] in the middle. Oh and the crying one. Asian children are always very cute, infact. Hmmmm. Nope. Back to own race. More on this later. Am garbling... In actual fact, though, this is a transparent portrayal of my thought processes these days. Garbled, dizzy thoughts that could all have huge implications if they don't land in the right formation.).

Interesting stat in the article, though, that 10% of couples have fertility problems. While my particular kidney related problem might be my current fascination, I do realise that I'm not on my own in facing these questions. In actual fact, knowing up front that this is my deal - nul points - is no bad thing. The waiting, the endless hoping and failing, must be the most soul destroying process, no doubt.

It seems stark that, while 10% of people are going through this, 10% of people aren't having children with surrogates. I think I might have got a little greedy thinking that it could be an option for me.  I've already had one borrowed organ. I shouldn't just move onto the next one so easily (ie. maternal functions on top of a kidney). I could be seen as just a little 'gourmand'?

I woke yesterday to this dull annoying ache positioned right above my kidney. Behind my ribs. In my back and  my stomach. Having been a hard nosed anti-hyperchondriac dudette prior to my kidney troubles, I now find this little stomach pain makes me go to bed early, tucking the sheets up under my nose and feeling terrified at what it could be: appendicitis? Pancreatitis? Something gross in my colon? Kidney infection/stones? Fallopian tube pregnancy? I ring the doctor to be comforted and they've prescribed me an xray of the kidney and my abdomen and a whole series of blood tests. I will woop like a chimpanzee on my way into hospital and hope I don't come out with blue skin.

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.

Pro-life and adoption agencies

Someone isn't doing the maths. One one side you have women who are pregnant, don't want the baby but can't face abortion. On the other you have couples desperate for children who can't have them. Mix the two together and you get explosions of fizzy pop and marshmallows.

Seems that Prolife doesn't much care about what happens once the child is born, though, just that the child is born at all.

I recognise that, if you've made the step to adopt a child that's not your own, some might say it's not that much further a push to consider adopting a child that is 3 or 4 years old and comes with a difficult upbringing. The heartstrings are sensitive after all and they're talking to a primed, overly effusive maternal audience.

However, Adoption UK have this terrible Wall they put up showing how wonderful healthy children have perfect upbringing with love, security, milk, cuddles, education, trust, family, attention, friends etc.... Watch, then as they bring the bricks crashing down one by one in this excrutiatingly painfully slow process with explanations for dummies where they say, eg, 'Love. They may not have had any and might not want yours'. 'cuddles. They won't have had many due to abuse and won't trust yours'. 'FRIENDS. Coz they didn't get cuddles they might not want friends etc...'. I sort of expected them to then write 'HUMAN NATURE. Due to not have all those previous bricks, they might not be normal'.

Anyway. You get my point. It seemed rather over the top, although I know they're just trying to ram the point home. Smashing that dream again I guess.

POP

Fox News - what a load of B****

Colored Drinks give you kidney disease says Fox News.
What a load of *****

There is an almighty amount of balls on the net. Hoping my high class selection of some of the offerings our there might help confirm that.

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.

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'..).