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 I  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.

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.

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

Out of body Antibody

I got out of hospital for Christmas but without any answers.

The docs had forgotten I was on Aspirin so couldn't do the biopsy until next week in case of bleeding.

I asked for a blood transfusion to put some more red blood cells into me (as that's the answer the UK use when they make the same mistake), but they weren't having any of it here in France. I have to wait a full week (it's 3 days in England...) to let the aspirin get out of my system and have this biopsy before knowing for sure what's wrong with me.

My consultant said it was either:
1. One of the two types of rejection - cellular or antibody - (but I thought it was really rare to build up an antibody against your dad?), or
2. a viral infection (takes 10 days to test for that...), or
3. nothing at all and my kidney's just recovering from being infected last month.

If it's the virus, I'm to reduce my Cellcept which lets viruses take hold. I know that because I've had a few skin growths due to those lovely pills already (Another of the 'side effects' no one told me about at the start. You suddenly find yourself visiting dermatologists with nitrogen oxide being blasted at you because of a kidney problem. It's a slight mental leap).
If it's rejection, I down a kilo of steroids and lie shaking on a bed until they wear off

If it's nothing at all, I hope and pray it's not permanent scarring, but is just a bit of inflammation.

And, in case you thought you understood all of that, if they reduce the Cellcept then there's a chance of rejection creeping back.

Round and round the circle like a teddy bear....

Feeling dizzy? So am I

Magic Pills

I take a total of 35 pills a day. Thank God I can down them all in one. I'm not squeamish like that. It would take up the best part of 30 mins having to swallow them one by one.

My creatinine's at 196 at the moment. Down from 200 a week ago. What an achievement. Not.

The docs put wagers on my Creatinine going down to its 80s as I lay horizontal post the transplant. It was rather a disappointment, and slightly awkward when it then stuck at 100. My norm back then (sigh) was 100-110. Since June and my bout of rejection, I've been on a roller coaster ride of between 140-240, hopes consistently dashed as week after week, while they may suddenly dip by 40 points and make me feel like the Queen of Bloody Everything, they then plummet and I'm back up at 'biopsy land'.

Any kidney person will tell you, though, that, unless you're on the verge of failure (end-stage renal failure), you could be signing yourself up to the Olympics, or booking yourself on a round the world trip the little the signs show. So, like some sort of sick parallel world, you step off the main streets into the warrens of plastic hospitals where you're yet again informed that, yes, you are very ill. These weird numbers rising and falling appear to dictate my life at the moment.

At present, my danger is very low potassium. I tried eating loads of bananas and chocolate (trust me on this one), but it wasn't enough so they added another 4 pills a day to my toxic cocktail. I also can't seem to stay hydrated - the kidney works overtime, especially at night (very convenient...) so I go to bed 56-57 kilos and wake up 52. Despite taking 400mg of Fludrocortisone to combat that, I'm still a leaky cauldron all through the night. Thank god no-one in my close circle of friends/family is a camping fan. If anyone has an answer to this particular problem, I'd love to hear it.

If my results dont go down tomorrow morning, I'm back in for a biopsy. Having just moved to France (and I'll post about the different systems UK-France next), it's all a little up in the air how they're going to handle this procedure. They're talking about a few days in hospital. Perfect timing then - just as my family turn up for Christmas...
Is my rejection back? Did the kidney infection leave some permanent damage? Maybe the rejection this summer never went away? Am I just going to trickle away to a second transplant with no apparent explanation like I did towards the first one? (they've never diagnosed my disease, just saying it's 'lupus-like'..).

About me

I'm 31 and I'm married but without children. Yet.

I have just moved to Paris from London. I had a kidney transplant 2 years 1 week ago from my dad.

I was oblivious to my problem until three months before my operation when a wicked head ache indicated high blood pressure, which in turn indicated that I had practically no kidneys left. They'd been attacked by my immune system. Yet another of the hundreds of thousands whose immune system's turned rogue and decided to attack the thing it's defending. Bit like an adolescent child taking it out on its mother. A child picking a scab. An Indian mother discarding the colustrum and feeding its newborn some biscuits. Anyone taking drugs. Someone with cancer stubbornly smoking. I'm amazing myself at how many examples there are indeed.

Guess I shouldn't be so hard on my immune system after all.

Anyways, 3 months after discovering the headache, I was flat out on a table waiting for my brave soldier of a dad's kidney. He'd been wheeled out and I was wheeled in. The rest of the family lay in wait upstairs for us to come through on our conveyor belt safe and sound to them. We did. Dad was up and about 5 days later. My recovery took 10 days as my wound is larger and I have a cocktail of drugs the docs need to get right.

In brief those 2 years have been good. I will never complain about the chance and luck I've had in being able to get through this without dialysis, and with still being able to get up and go to work each day, bring in an income, get promoted in my job, move countries, go out and party, travel the world and love my friends and family. 

But I've also rejected my kidney for several months (perhaps still ongoing), I've had Ecoli and ungratefully infected my brand spanking new kidney, got myself some septicemia and probably had about 6 or 7 biopsies of my new kidney since it landed in its new home.

Those things don't come without a certain amount of stress. And that's why I started this blog. I crave understanding sometimes.