Onwards and Upwards

Thank you for those who took the step of writing to me. Sorry to my husband who's querying my use of the word 'squidgy'

As promised, I bring you an entire posting on adoption and surrogacy. Get ready for a five minute lesson on why not to worry about your own fertility if you are, and on the weird and wonderful world we live in.

ADOPTION.

Photo to sum it up on the right

(being realistic about the age of the child in this case...): 

Welcome to the wonderful world of the Hague Convention. Before this was brought in, adopting from the US was a cinch. The Millibands did so for their two sons in 2007.
Now you have to apply for a homestudy in the country where you live. The 'Agrement pour Adoption' in my local language. We took a deep breath and have sent off the first of what I expect will be a barrage of documentation. Surprisingly, the French on the phone I've come across so far have been remarkably nice. This is rare, but perhaps they're carefully selected from amongst maternal nice people.

9 months later, apparently, after criminal record tests, medical certificates, photos, psychological tests and interviews with social services types (11 hours of interviews in total, apparently), you get your receipt. That lasts 5 years and for one child. With it, you can apply to adopt a child in any country within the Hague Convention. Most end up adopting from Africa/Asia because there's less of a time lag. We'd be going Caucasian and hopefully a baby. "I'm writing because we are interested in adopting a Caucasian newborn" go these remarkably surreal emails I've started sending to find an 'outgoing' adoption agency in the US.

Guess that if you didn't get the dream choice, as you couldn't bear the wait, the process would look a bit like this (right): 

The oddest part of this whole thing is coming across, on practically every adoption site, these dreadful photo listings of children who are up for adoption. I pick one, at random, to show you. It's dreadful to see them all lining up like that. For the older ones who are more adept on computers than me, it must be harrowing to see yourself up there for ages and no-one clicking 'interested'. Soul destroying no doubt. It is no surprise that the vast majority are disturbed and 'difficult' children. The 'ads' make devastating reading.
This is not a light and cheerful pass-time.

SURROGACY.

Delighted to say that I think I've made some good discoveries. The fear of surrogacy is that you part with 4 years salary and then the surrogate mother doesn't get pregnant/miscarries and you're left really sad and also really broke.

• Los Angeles (due to US medical fees) is simple but crushingly expensive at around 100-150K$ (depending on whether you need an egg donor too)
• Ukraine is about 20K$, but there are loads of reports of fake pregnancies or trafficking babies to pass off as genetic ones, and people running off with your cash, so I think I'd also opt for 5-10K$ with a legal firm who manage all the transactions and check your surrogate mother isn't a Nigerian with a fat cigar.
• UK we'd need to find a surrogate mother who liked the look of us. We'd have to move back too. There are no fees that swop hands between you and the mother. This is altuism at its best.
• India again is interesting as, while only costing around 25k$, it did have the downside of having to wait 3 months in India post birth to get UK citizenship for your child. My clever husband was born in the US, though, so we could apply for US citizenship which only takes 3-4 weeks, return home to France and apply for UK citizenship from here. As a Brit, you need to add on 5K for a 'parental order' so that you become the mother. This is tedious, but probably necessary.

Of all this lot, I think this agency is taking my interest the most, and answering my emails quickly and efficiently. According to one of the million online blogs/websites I've read on this all, that's something not to be disregarded. This is about efficiency and professionalism after all. It's a 'process'. They have a UK branch, they find you another surrogate if your 'chosen one' isn't able to get pregnant for no further fees and they have legal advisers for the genetic DNA checks and visa applications. Hell, they even send a chauffeur to pick you up from the airport. I've got about 20 email addresses of other 'intended parents' who've gone home with their tiny packages too. Next step blanket emailing 'Hello, I'm looking to etc....'. Again, very very surreal.


That's all. I hope this is more positive than the last update. Onwards and upwards as I said. Who knows, I might end up with triplets.


[If this was useful, you might find a more recent post about a meeting with a surrogacy agency I had interesting too, and - 'pitfalls of surrogacy. Look before you jump']

No Kid Kate

I got the final no-go day before yesterday. I am officially forbidden from having children.

An incredibly unsympathetic, horrible woman ran me through statistics as though she were reading the sports results. 28% chance of pre-eclampsia, 1/3 chance of miscarriage, 8% chance of losing up to 10% of your kidney function = chance of losing the whole kidney. My last biopsy showed a fairly beaten up kidney. If there's a problem, there's a 'technical removal of the child'. All these stats are because my 'creatinine' (ie. kidney function measurement) is at 170 or thereabouts. It needs to be below 150 to call the idea safe, apparently.

A mini part of me feels that it has come down to 170 from 200 over the last month and might, therefore, possibly drop again slowly if we all pretend that we're not paying attention and look in the other direction. I'd love to see that horrible lady next year with a creatinine of 130 and ask her burp my baby, or wipe its bum. Perhaps I should just vomit on her. That should do it.

The vast majority of me (99.9%) knows that the game is over.

This is sad. I am officially, most definitely sad about this. This is a rough punch to add to the beating. I'm bruised. I feel terribly terribly sad for my heroic supportive husband. I wonder what his life would have been like with another woman who could have his children and take on his incredible brains, charisma and squidgy loveliness.

Facebook is rough at times like these. Photos of others moving on to the next phase are tough viewing. Walking down the street can occasionally be a bit of a battle too if you're in mummy-ville. Pharmacies have baby rows, supermarkets have prams in every aisle. One couple I met a fortnight ago who got married a year ago and were expecting their second asked if my husband and I had just got engaged. Having been married five years already, it was obvious their assumption was due to us not yet having kids. Even looking at my belly in the bath and realising it wont ever be pregnant as every girl imagines it might be as they grow up is an odd thought.

One could get dramatic about it - I've lost my purpose/I'm not a woman etc. I could beat my chest and wail like a banjee but that's not my bag. But, as my generation start popping them out, discussing names, genetic similarities and school options, it does nonetheless feel odd to be starting to take the pill for the first time in three years. (Let's at least hope they give me some enormous Wabs).

I will be practical about this again in the days to come. I will fill these blog posts with research I've done about adoption and surrogacy and I will be positive about the 'wealth of options available to us in this century of modern science'  etc. blah blah blah. I may end up feeling lucky as I adopt a wonderful child and feel special at the individual relationship our modern day nuclear family builds together. A battle won is a satisfying thing. And if that can translate into love and union then I can be hopeful I'll feel I got the golden ticket rather than the short straw.

Yes this is personal. And yes I'm posting it on the web.  I need people who know me to know. Then we don't have to talk about it.

Postherpetic Neuralgia

I have the dreaded fear. I'm 6 weeks post the start of my shingles. I am still itching. I'm also still not sleeping. This is called Postherpetic Neuralgia. The nerves where my shingles were have been frazzled and are having spasms. They like to spam out at night time when I'm trying to sleep. This is what over 60s and immuno suppressed people get apparently with shingles. 95% of us will get over it within a year. The remaining 5% keep on squirming and scratching till kingdom come. Please, dear lord, let mine subside soon.

I'm currently writing this with cling film wrapped around my belly to stop my clothes setting off the itch. I, of course, married a particularly hairy man, and so cuddles are proving a little hard at night too. I will create myself a body sized condom so I can give him a night time hug. Maybe on alternate nights, or full moons, he'll let himself be wrapped up instead of me, or both side by side, like two chrysalis ready to hatch out when it's feeding time.

 

Met a renal consultant at a wedding over the weekend who shook my hand and bet with me that my next kidney would last forever. He said I looked ridiculously healthy to not be doing well on the current kidney and said he wouldn't be surprised if I defied cautions and lasted on my current transplant with pregnancy and the lot for a good few years yet.

He went on to explain that renal consultants treat their patients like china dolls because everything is a complication waiting to happen. In no other walk of medical life do you get patients treated with such kid gloves. He is a renal consultant hoping to take this approach through to cardiac treatment. I am a renal patient wishing I wasn't practised on in bars and weddings and parties. I get so excited to meet renal doctors, but it's unfair really for them to talk to me as they can't tell me anything I don't already know and what I do know I don't want to be told again when I'm trying to ignore it all. On the other hand, how they're meant to know any of that when I'm always so excited at the possibility of learning something new is beyond me.

I'm a medical addict. I know I want more, but I know it's probably bad for me. I get so excited when I hear that there might be some of it/them floating around at a party, but it would be better for all of us if the two of us never hooked up. Reminds me of when I first got sick and didn't know any better. I was told kidneys lasted only a few years by someone (no comment). I was told that my heartburn (from not having enough iron) might give me a heart attack if I didn't stop moving (yup. that stopped me in my tracks for a good few weeks!). All these naughty bits of information I got from people on their down time and then wished I'd never heard once I'd digested them. Especially when they turned out not to be correct anyway.

There is but one God and one mediator between God and men and that's my consultant. Let's hope my Lord and Father will prescribe me some itchy-scratchy tonic when I visit my chapel in the morning. Amen

Hot Diggidy

Also, while we're on the good news vibe, I just found my creatinine has gone down to 173 (must mean I've gained about 5% kidney function back = a few more months?) and I have a plethora of white blood cells. Literally. I have thousands of the things. They're just hanging around socialising with each other whiling the time away.

'How it's goin?'
'yeah, good, yeah. You?'
'yeah. great'
etc...

C'est tout. I'm going to log off and enjoy the sunshine. x

MASSIVE ORGAN DONATION DEVELOPMENT

This article sent to me by my mother in law shows that they are making amazing advances in organ donation. If you put in stem cells of your organ donor with their donated kidney, then the recipient can wean themselves off immuno suppression within the year! At least 5/8 managed to do that in the first trial that just took place in the US.

Can you imagine!?!? It makes me seriously excited to think about it. I would be just like You hoo hoo again. No face masks, gross infections and cancer risks. No night sweats, and hand alcohol gel, and fear of traveling to developing countries and constant colds and, most importantly, no kidney rejection so likely no more operations. Come on you little doctors in your little blue coats with gloves and big brains and hats on. If this can speed up and happen successfully in time for my next transplant, things could be looking up!!!

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.