Monday 30 January 2012

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.

Sunday 29 January 2012

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

Friday 27 January 2012

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")


Creatinine at 200

Well at least it's a good looking number.

Thought it was 485 for a minute and literally almost had a baby (joke). Turns out that was Creatinine in the urine?!? Anyways, by thinking it was almost transplant time, and then landing back at 200, I somehow have managed to make myself delighted with my results.

Well done me






Thursday 26 January 2012

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



Wednesday 25 January 2012

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.