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Sunday, 7 April 2013

The trouble with French hospitals

Paris, with the fastest growing urban area in the world since WWII, apparently, and no room for new buildings, has not got enough beds to host its ill.

Hopital du dieu where I ended up in Xmas 2011 for my eye infection is receiving standing patients only in one section of its  building, including people with heart and pulmonary problems. This is to avoid the chronic problem in the rest of the building, which one article refers to as 'musical chairs'.

In March, the news was flooded with the horrific story of a pregnant woman who'd been turned away when in labour as there wasn't any room, and ended up with a still birth the morning after.

Last year, when I had septicaemia, a kidney infection and was losing essential % of my fragile kidney function forever by the hour, I still couldn't get a bed. It took me lying on a bench in the kidney area in hospital, and then lying on a bench in a semi-coma in the A&E waiting line for someone to finally give me a drip.

At Christmas when I got the unavoidable noro-virus, I again headed off warily to A&E for my regular revival drip, and was not surprised to wait almost 8 hours in total before they gave me one. People with sprained ankles went before me. I'm sure some hypochondriac made it in there with a snivvly nose as well. Meanwhile, my kidney was likely feeling like a junkie, and looking more and more like a slab of paté by the hour.

I now have a signed certificate from my doctor to hand over at A&E telling them that I only have one kidney (or part of one) and need fast treatment to avoid total kidney failure. While I feel comfort having this printed and slotted into my purse, I know it will mean nothing as I show it to some disgruntled receptionist when the time comes. I know I will not be strong enough without a husband/ brother/friend there to fight the battle of the front desk on my behalf. And I am scared it will not end up so pretty.

I'm not the only one. Imagine having a heart attack and being told there are no chairs but you have to stand in line with the others as at the Hopital du Dieu. I know it's an election issue, too.In January, Hollande visited a hospital: "to know what to do, I have to understand how it works", he said. Thing is, I don't think it's all that complicated: Sick person - needs to lie down - needs bed.

Wednesday, 12 December 2012

France and surrogacy

Apart from the obvious - ie. it is illegal to have a child by a surrogate in France, there are also some less obvious elements which I thought I'd list

For starters, there's no information anywhere. Hence why I bother writing this blog. Even doctors don't know a thing about it. I am apparently the first ever kidney patient in Paris' biggest kidney hospital (Necker) to be going down this route. The IVF lady I'm going off to see isn't sure how she's going to get my embryos released for me to take abroad either.

That takes us to my second point. I can have the IVF treatment in France, link my jewels up with the other conkers and produce little humans, but then I can't have MY (I emphasize the possession here) little beings to do with what I want. I can't then take them over to another country if my purpose is, heaven forbid, surrogacy. I can get a note from the Food and Drugs Association in the US to get through the beeping and lasers at the airports and not frazzle the little humans on their first transatlantic flight, but I wouldn't get that far as I'll be met with security guards and custom officials when I try and open the fridge door in France.

So, we look at our bank accounts once more, and join dots and make calls and recognise that this is a game for stubborn people, and stubborn I'm going to have to become.

Yes, I'll do the treatment here, yes I'll work out how to connect them with someone in the UK (who's more lax on the relinquishing possession front), yes I'll then work out how to connect them with someone in the US, and then, abracadabra, little humans maybe get a chance to defrost.

pics on Sodahead

It's minus 6 outside, and it's almost Christmas. This is a frosty Christmas story for you. I can not believe I'm the first to work all of this out. If anyone's been through all this before, please drop me a line? I'm looking for some thawing advice.


Friday, 16 November 2012

French Social Security Downturn

I go to collect my medicines the other day and am told that I'll only now be reimbursed 100% for those which are 'generic'. If I want the formal brands, I have to pay for them.

This is new French President, Hollande's, influence. And I'm not averse to it.

I try and liken the minor fear I feel at carrying home a shopping bag worth of generic drugs to keep me ticking over this month to something I read in the paper a couple of month's back; in Greece, people were going to the pharmacy to find there were none of their drugs left. People like me will have gone to keep themselves going and found that the door was shut. Absolutely terrifying.

I now carry my pills in my bag with me at all time. I walked past a stupid film poster of Ewan Mcgregor caught in a natural disaster and thought how stupid I'd feel if everyone else was surrounded by devastated houses and lost family members and I'd be freaking out about running out of immuno suppressants.

It also reminds me of a recent campaign a friend of mine has started, #icancer. 'What price a life?' asks Dom, a former colleague and friend of mine who has a type of cancer which there is as yet no available treatment for. Or, I should say, which there is a treatment for, but, because it isn't a treatment which will bring phamaceutical companies profit, is still stuck in a freezer in Sweden. He, and some hard core campaigners, are trying to raise the £2 million it would cost to get the treatment out and in use to stick two fingers up to protocol.

The whole idea of likening money to health is odd. If we provide people with medicine, shouldn't we also provide then with food, and a bed and a roof over their head? Isn't it odd that I can carry my bag of medicines back to my flat and walk past a tramp in the street?

Is it odd we can feel so outraged by families in the US becoming bankrupt by losing their house because of medicine bills and then forget to continue counting how many have died of malnutrition in a food crisis?

What I do know is that, when I went to the pharmacy, I felt that surely something was wrong and that would be given the same medicines as before. I felt I deserved it. Some sort of superiority.

Similar to another feeling I don't like in myself since the operation but which I think I just about understand. I would walk up steps in the metro surrounded by commuters and in my head, think, 'look, I can walk up these stairs faster than you and I've had a transplant'. Gross. Not proud. Let's pass that off as a warped version of self-motivation and determination.

Anyway, this is a rambling blog because I've (touch wood) not been ill since March or thereabouts. My doctor actually called me 'healthy' a couple of months back which made me giggle. My creatine is stable at 200-2010, whatever that means! Seems odd to be stable when you know, if you looked a little deeper, you'd see the knees were starting to buckle, but I'll take it. This means I've had time for reflection and realised that I'm actually pretty lucky.

It means that my new year's resolution not to be kidnified has actually happened and I've realised it just in time.

Tuesday, 26 June 2012

Moon Face

Steroids give you a moon face. They bloat up your cheeks and make you look like a pre-preppy teenager who might break out in a tantrum, acne or love angst. I believe it's an odd redistribution of fat that sometimes creates a hunchback, and can also land on the face. I am 32. Thanks to my daily pills, If you don't look too closely around the eyes or forehead, I could pass for a high school kid. When I smile, the tops of my cheeks have been known to touch my glasses. A sort of chipmunk. An exaggerated version of Renee Zellweger. A mOOn.

I guess, if this is your thing, it has certain advantages: A woman in a coffee shop asked if I was old enough to vote the last month. Someone in a party asked when I was going to graduate. Personally, however, I don't want to be seen as an adolescent buying organic goods and ground Colombian roast. I feel uncomfortable in meetings with strangers at work, and dress up to make up for it.

There are oodles of postings online of people desperately seeking a way out of their exploding cheeks due to prednisolone to no avail. I'm only on 10 mg of the stuff but it's been almost a year now and the side effects are growing roots.  I have been noticing my face appearing remarkably similar to an apes shiny bottom in most people's photos on facebook all of a sudden. Studying the development, I realise my cheek bones are now paling in comparison to the cheeks that are propping them up.

This is vanity, pure and simple. And obviously no one is going to bother weighing up health against a thin face.  I asked my doctor if I could stop the pills and she told me no. It could bring back my rejection. 'You look sweet!' she said. Hmmmm

When I get a new kidney, hopefully I'll come back off these darned things and my face will morph into that of a supermodel's. That's the thought that gives me the confidence to blast through my squidgyness when I need it. Inner beauty etc... Buried under a layer of insulation. It is a shame, after all, to spend what is meant to be the prime of my life looking (and therefore feeling) like I've just quaffed a gallon of bacon butties. 

This is a day when I'm taking full advantage of the fact I write a blog. I'm having a whine. It suits my image.

Tuesday, 19 June 2012

Meeting with a Surrogacy Agency

Having spent 3 hours listening about adoption from the French, we thought it only fair to listen to 3 hours about surrogacy from an Agency. A US agency, of course, for whom 25% of their clients come from France. Clever monkeys.

I learnt several odd things.
For our roughly $90K, we could start with IVF in France, bringing over frozen embryos on the plane with a piece of paper from the 'Food and Drugs Association' in the US to show to their customs officers explaining why we're carrying 'blood related materials'. (Made me laugh to think that, if we were to do this, that journey with the embryos in a box under my seat would be the closest I'd get to gestation). Hey, gee, to be sure we get enough embryos over time, we could buy an 'Embryo package deal'. How simply marvelous.

Men don't have the same problems with freezing or thawing their own jewels. Sperm could survive if used to stick down a stamp on an envelope and sent like that hrough the post to the US. That means women could still get pregnant from that stamp if it was inserted in the right place. Makes you think twice about sleeping in dirty sheets, doesn't it...?

Anyway, you hand over your genetics and they're 'transferred' into the surrogate (for $5K) who you've already chatted with on skype to introduce yourself and check you get on. This is a relationship, according to the agency we met. You're going to be in close contact with this lady - to the extent that some might demand to have you in the delivery room at the end of the day - so your relationship is very important from Day 1.

You spend the weekend with her and her family, and then potter back home. You can then make trips for the 3 month scan, finished with a trip lasting roughly 2-4 weeks (depending on how easy the birth is and if they're twins) for the birth.

I'm 32 so my eggs are almost of 'donor value'. That's to say, they shouldn't be too far off the gold standard that they get from their donors. (Super donors, I discovered are 23 years old and have given eggs that have been successfully implanted in the past. Sigh. It's sad to be told up front you're past your prime.) If frozen, my eggs/the embryos lose about 5% of their success rate only so my probabilities of success per transfer are as follows:

1. 65%
2. 77%
3. 93%

Not bad.

All told, with legal fees, medical fees, insurance fees for the surrogate if they don't have it, travel for the surrogate to the clinics, monthly charges for food/clothes, and the fee that goes to the surrogate for her time, it's 90K. Add on 5-8 for twins, add on 5 per extra transfer you need to make, add on 10 if you can't get frozen embryos and need to go to the US for IVF, and you're getting the full picture.

They explained that not many of their 'intended parents' (ie people like us) were of our age because this thing is so darned expensive.

They said more French do it than Brits because while French think about science fiction behind it, so do the Brits but they also care deeply what their neighbours think of it too --->

Those are the options. Question now is if we want either of them, or whether the hand that Fate has dealt is the option we should take instead. The update on the kidney, so you know, is the results got worse again, going up to 190 and then 193 over the past month (I need to be at 160 maximum). My chances of getting a 'oh go orrrn and give it a go' from the doc are now not very likely. What would you do?

Thursday, 10 May 2012

Adoption - it ain't easy.

Yesterday was an 'information day' we attended to be steamrollered with the reality of stats, waiting times, and massive punches to the head about adoption.

There are 24,000 people in France who have a certificate saying they can adopt children. That's the same amount of children as there are in the entire world who are up for adoption.

There might be millions of children in poverty and in need of loving, caring parents, but they're not up for adoption unless a judge has ruled as such. Quite right too.

Once they're up for adoption, it's a mad scramble by hopeful parents and adoption agencies from loads of countries trying to get their feet in the door first. This leads to countries creating incredible demands for adoptive parents.
  • Colombia put up ads, like Job ads, saying they need 15 parents. First come first served if you tick all the boxes. The rest of the applications get shredded. 
  • Russia demand that you report back for the next 18 years of the child's life once you've adopted.
  • In Bulgaria, you have to define on a 5 page questionnaire the child you're looking for. It's not about what you're like as parents-to-be. It's whether the child up for adoption fits exactly the child you want to look after. 
  • Some African countries demand papers signed by priests.
As for adopting babies, we were told that it simply wasn't possible from abroad. You might be able to from Ethiopia, but you'd have to be under 35 years of age in four years time. The whole room of hopeful French parents sitting around me snorted.

You might be able to adopt a baby in France. The huge total 24 babies who were adopted last year did go to parents. But before you get too comfortable, we were reminded that most of the mothers were alcoholics or drug addicts. Drink while you're pregnant and your child can have serious development issues that only show up as they grow up. Age six you might discover they can never read or write. 

A 'celibate' (as they're called in French) next to me who was obviously hoping to adopt was told she'd have no luck in Africa. Most African countries demand five years of marriage at least. I tick that box. Shame then that I was only in the market for caucasian. The only time my neighbour could start scribbling in her book is if she would be comfortable adopting a handicapped child from China.

Some parents worked out a quicker way than working through the Hague Convention of certificates and regulations and went for 'individual adoption' where you run to a country outside of the convention, find an adoptable child, and get your signatures down on some papers fast. Russia fell under that category last year and subsequently found hundreds of its children adopted by French (the third biggest adopting country after Italy and the US). Those doors are closed now, apparently, and all eyes are on Vietnam.

Made me realise that people who say Adoption is a wonderful thing - giving a home to a child in need etc... - aren't quite right. There must be about 50 times the amount of parents than there are children. The only really selfless adoption, and where the parents deserve medals, are when a disabled child is adopted, or a child who's in his or her teens.

Made me realise too that you can't quite weigh up the alternatives of a newborn adopted child verses a newborn child from a surrogate because that's not realistic. The reality is a newborn child from surrogacy that costs you more than a college education in the US, versus a 6 year old from Africa or Asia that would join us in about five years time. Easy to see why surrogacy is now turning up in articles in OK! Magazine, in the Daily Mail, in daily conversations and on many peoples' bank balances.

Thursday, 26 April 2012

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.

Monday, 23 April 2012

The pitfalls of surrogacy – Look before you jump

No-one else is writing about it, so I’m stepping up to the plate. Turns out that official advice on surrogacy is something that is a dangerous game. Defy anyone to mess with a money making business after all.

I’m not saying that I’m suddenly a nun. I just had my eyes opened to the realities of a fast growing demand on a deregulated market. Add to that the complexities of my dearest country, India, with massive poverty, a douse of corruption and a lot of discrimination and things get a little messy.

Look before you jump.
Children born to surrogates in India are paperless. They’re stateless. They have no citizenship. You have to apply for that citizenship, creating that child’s existence on a blank piece of paper. I suppose in a similar way to the process of creating that child’s existence in a petri dish that you did nine months earlier.

If the surrogate mother is married, you have to acquire permission to parent the child that was born to her and her husband, despite the fact that the child’s made from your genes. You acquire permission and then you apply for a passport. Thus rack up the months. 

If the surrogate mother is not married, you’re on to an easier ride. But don’t get too comfortable. Remember your context.
Money makes the world go around
Clinics in India are making a fair whack through this sudden infertility escape route. Of the $23,000 you pay for your child (or, as the Embassy told me “they quite often come in twins. I should warn you”), only $1000 goes to the mother. Do with that what you will.

The rest of the money is swallowed by the clinic.  These clinics are businesses, and they have ways of squeezing more profits. It does seem a coincidence that many of the blogs out there hear of the children being born at 7.5 months, instead of 9. An earlier birth makes for a faster recycle of the mother, and a higher pay per month for that woman than if they waited the full term. A more vulnerable pre-term baby needing medical attention can put pressure on a faster turn around of papers in Embassies too.

Are the clinics telling the truth when they say the mother’s not married? One Immigration officer noticed that the name of a surrogate mother on the exit visa of one happy couple with their new child was the same name as had been on an exit visa used just 5 weeks earlier. If you’re not sure, and the Embassy’s not sure, your waiting time just increased a few more months again.
Back to healthy basics
Lastly, remember your values and live by them, despite whatever yearnings you may have. We’re all humans. These women are taking a health risk for your sake and because, no doubt, they need the money.

Where do the surrogate mothers live? What are the conditions like? If six appear to be living at the same address, it’s likely they’re not being housed anywhere as the clinic says and are probably just sloping home, possibly to a slum.  If the moral argument’s not doing it for you here, think of the future health prospects of your newborn. It can get murky.

FACT: 30% of the papers that are put into the British Embassy in Delhi for citizenship of surrogate children are fraudulent. 

BUT Surrogacy can be a smooth process if you've done the right research  
Follow your nouse
  • Ask questions. Visit the clinic. 
  • Ask to meet the mother. 
  • Ask to see where she lives. 
  • Ask about the conditions. 
  • Ask if you can get proof of marital status. 
  • Ask fellow clients how smooth the process was. If it took them 12-14 weeks and not 1000 questions, likely the clinic they went through is known by the Embassy and the papers they produce are legal.  If it took much longer, think again. 
  • Ask how many children the mother has had. Surrogacy’s been a phenomenon there for 2-3 years, and women can only have 5 children by surrogacy by law in India in their lifetime. Think of how many births they’ve been through, what it’s done to their body and if there are any implications there for the medical supervision your clinic is offering them
  • Read this page of guidance from the British Embassy in India
And then, then, you decide whether to take the plunge or not.