Wednesday 28 March 2012

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']


Friday 23 March 2012

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.

Monday 19 March 2012

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

Friday 9 March 2012

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

Thursday 8 March 2012

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!!!

Friday 2 March 2012

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.