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]

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...

Plans unveiled to increase live kidney transplantataions

Plans unveiled for increasing living kidney transplantation in the UK at any rate

Apparently, this means that different ways of donating, including paired and pooled donation and altruistic donations for any recipient in need are going to be invested in (and heavily marketed I assume). 

 

Paired/Pooled donation being this [right] 

Altruistic donation being this [left] (imagine the giver also being blindfolded):

 

In my bed in Hammersmith, London, where I had my transplant, I was next to a couple who'd been part of a triplet transplant. He needed a new kidney. His wife wasn't a match. She donated and her kidney was received by someone in Scotland. The person in Scotland's partner's kidney was received by someone in Birmingham whose partner's kidney was received by the man sitting next to me.

If that scheme could be invested in more, then maybe we wouldn't be relying on waiting lists turning around as we currently do. Only this week I found out that, of the 400 deaths each day of 'declared donors' only 2 have their organs used for transplantation.

The starkest statistic is that, in 2010/11, there were 1.5K kidney donations from dead donors and 1K from living donors. Of all the millions in the UK who say they have donor cards, only 1000 are turning into kidney transplants a year. Given that I'm 2.5 years into my kidney transplant and look like I might soon need another one, I'm invested in getting this system working better. Deeply invested, in fact. Scarily so. 

This weekend I found myself thinking through the order of priority in which I might ask my relations for their kidneys. My ever generous uncle, my brother, my cousin, my in-laws... If my kidney is on its way out after a couple of years and I'm not even 32, I might actually have to project plan my way through to survival. Please would someone get cracking on the stem cell research. 

Watch this moving appeal from Michael J Fox.

I hear ya.

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

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.