Wednesday 22 February 2012

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?

Sunday 19 February 2012

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.


Thursday 16 February 2012

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

Wednesday 15 February 2012

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


Saturday 11 February 2012

Jingle Shingles

I have Shingles. That's what the abdominal/back pain was. From a weird stomach discomfort three days ago, it developed into immense pain last night, waking me at 7 am with spasms of nerve endings being electrified from my spinal column where the virus is nesting.

I was a bit like one of those David Attenborough elephant seals, flopping around my bed and the floor trying to find some relief. I found some paracetamol - fat lot of good that did me - and continued to flop around until I found 3 hours of peace lying in the position that a Muslim man at prayer might find himself in if he fell asleep mid-worship.

I rang my uncle - my dear sweet uncle - who, because he was a GP once, must forever find himself dealing with frantic, panicking friends and relations like me hoping he can diagnose them down a phone line. After snotting quite a lot down my free.fr landline, I hung up, hoping it was muscular ache that, for some reason, was just nailing me to the floor. Oh yeah, to add insult to injury, I had to do a pregnancy test just to check it wasn't a baby growing in my fallopian tube causing the insane pain. Nope, nothing doing there....

I felt it was pathetic to be so in agony over muscular pain. I was far stronger than that, I thought, before the transplant. The operation and subsequent infections - injections - complications n' 'conflictions' have left me a weaker woman, there is no doubt about that.

So it was almost with glee that I noticed I had a rash on the right side of my back where the pain was. At first I thought it must be that I had a poisonous kidney infection bubbling to grow out of my body. But after googling 'back pain and rash three days later' I diagnosed myself with the old lady's plague - Shingles.

Shingles is a virus that hangs around in your spinal column from the days back when chicken pox arrived to join the pimples settled on the peaks of your cheekbones. Later in life, when your immune system is low (hello all transplant patients and elderly people) it comes out to get you. While I associated it with depression and bubbly spots, turns out it's god damned painful too. As though someone's injected your muscles with some stiffner, and, for good measure, has got hold of the corner threads of your muscles and is regularly twisting the end of them so they contort in pain.

My journey down to the hospital both yesterday for my scans/xrays and today to finally be diagnosed, I felt like the people sitting around me on the metro must think I had muscular dystrophy of some sort as I writhed around out of control. Makes sense, in fact, that they give you the same drugs that they hand out for epileptic fits. Shingles do give seizures as it turns out.

Anyway, another infection to add to the list. I'm really racking them up.

They say that every transplant patient's journey is different from the next. And the first person who said that to me said her journey had been a breeze. I am fast getting the feeling that mine is a bloody nightmare. Perhaps I should shut my mouth and let others, like me when I first heard that line, believe the transplant's a one stop shop for a permanent fix. Not that I'm saying I'm not eternally grateful, and that this life is a gazillion bambillion times better than dialysis. I guess I'm just allowing myself a little grumble. That's allowed isn't it?

[K49KKZKMVN6H]

Thursday 9 February 2012

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.


Thursday 2 February 2012

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...

The possibility of the Immaculate Conception

Stop the press. Rebekah Brooks has child by Surrogate
Do you think she's got an injunction on the name of the surrogate mother?


If, at the age of 43, on police bail, and, at one time, named 'the most hated woman in Britain, she can find someone to carry your child for you, surely we could too?

While we're reporting the news as well, I just discovered, relevant to my last post, that in 2008, one in five of every pregnancy was aborted. That makes a staggering total of 43.8million abortions in that one year. I'm most definitely pro-choice, and I don't want to suggest that I'm not, just that all these things take on a different perspective in my current situation.

The immaculate conception, given all the wonky tonky medicines and procedures that you can do nowadays just doesn't seem all that impossible. Mary was really onto something.




Wednesday 1 February 2012

Adopting an attitude towards Adoption

Turns I was right to try and join the dots between abortions and baby adoptions.

With abortions in Europe no longer such a taboo [see left], and single mothers are fairly commonplace (In the UK about 1 out of 4 families with dependent children are single-parent families!), it's no wonder that there aren't so many babies up for adoption.

This means that the UK and France (countries I have an interest in given that I straddle [sic] the two) find that adoption campaigners pick on the same subject: social services are slowing down the adoption process because they're dealing with a child who is often a few years old, rather than a newborn. The problem being, of course, that, by the time social/legal services have digested the issue, the child's likely a few years older again and even less easy to adopt for potential parents like me hoping for the 'Traditional Family Dream'. [see right]

America, meanwhile, holy land that it is, does have stronger views on Abortions, and adoption agencies have picked up on that, resulting in the Juno phenomenon.

It appears, that for between $4-10,000 you can adopt a baby in America straight from delivery. Meanwhile, however, Americans appear to be adopting faster from abroad than from their hood. The U.S. Department of State reported 12,753 immigrant visas issued to orphans entering the U.S. in 2009. 
Why? It's a question of waiting time (families are more particular about what they want when adopting from their neighbourhood than if adopting from abroad), fees, legal complications (that differ per country) and many other quagmires of complicated footnotes, secret costs and emotional pitfalls.

And here I sit, feeling like I'm oddly online shopping for a child.

I'm weighing up the costs, delivery, the ability to congest all the terms and conditions before I sign on any dotted lines, different countries/companies' policies and the knowledge that I'll probably never know for sure if I've made the right choice until it's been delivered to my door step and I'm making it part of my every day life.