Friday 23 December 2011

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

Monday 19 December 2011

Hospitalised

Breakfast. Oh, and my contact lenses!
Another blood test this morning. I was so nervous throughout the night I didn't sleep. I then tried downing almost 2 litres before 8.30am so I could be sure my tests wouldn't show me as dehydrated but I'm not sure I succeeded. I can't beat it. I drink 1 litre and I pee 1.5l. What to do?!

Verdict: Creatinine at 190. Down 5 points. "Stable", the doctor said, so they could either put me in hospital for 3 days before Christmas or 3 days afterwards. I went for the former. My whole family's here, but at least I'll get out before Xmas eve and can get into Christmas mood instead of worrying about it the whole way through. Passing the port will be my Xmas moto. Pass it....on to the next person. Pass that.....to someone else.

They think it's either dehydration or perhaps the kidney is dilated/enlarged as a result of the infection. If it's not that, they don't know what the problem is. My potassium is really low still (3.2 and has been that for 3 weeks). They don't understand that either.

SOMEONE GIVE ME AN ANSWER PLEASE.

Most importantly, please don't let me ruin Christmas. I couldn't bear it.

Saturday 17 December 2011

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'..).

Friday 16 December 2011

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.

Thursday 15 December 2011

Steak and Kidney Pie

My 'kid', my third member, side kick, spare battery, secret whistle..  I don't know what to call it. A third kidney actually gifted from someone, my dad to be precise, because not one but both of mine packed up secretly behind my back (or in it) quicker than you could say 'eek'.

Funny thing to find a vital organ you didn't know anything about apart has just packed it in. Kidneys. Umm? They taste gross in my grandmother's pies.  Boxers use them and bullies threaten them in playgrounds. They're also vegetables? Beans are named after them. Aren't they meant to be good for you? You put them in chilli con carne. They're oddly linked with cystitis. And cystitis is linked to too much sex. Serge Gainsbourg's definition of sex is that:

'Tu vas et tu viens. 
Entre mes reins'.. 

Beautiful rhyming. Wonderful visual...

All combined, I think my pre-op vision of what kidneys really were about was really rather warped. Who'd blame me.

The learning curve didn't stop there.  Doctors and nurses and hospitals and needles and enormously long and odd names of medicines suddenly rolled off your tongue and became second nature within the space of a couple of months. Hell, I'd go as far as to say I've discovered a whole new community-stroke-family out there [sic]. You're not meant to breach the patient-doctor codes, but if someone saves your life, trust me, it takes more than a few months and a blue coat not to feel that you want to give them a hug, say thank you and shower them in gifts and emotional speeches. It gets awkward, but no-one's pretending really, right? Everyone knows this is earth-shattering stuff.

I want to start this blog because, even though the very nature of a transplant means that you're not on your own, I feel alone sometimes in the daily roller coaster of my health and I know that I would benefit from finding a blog by someone like-minded to read. I am a charity campaigner and I can't help but feel this is a campaign I should be rallying behind. Lord knows, maybe I should be packing in my job and campaigning for this? Perhaps, if my health doesn't improve, I will end up campaigning with my life for my life for this. Hmmm. That became complicated...

I want to educate about what transplants mean for recipients, about what it's like for a donor, about the politics behind these operations, about the vast chasms between different countries' policies on the issue and about what each and every person could do to make a difference.

And I want to feel I can speak my mind about days that I sometimes find difficult. Although I have the most supportive, loving husband and family in the world, I still feel I want to tell other people about what I'm going through because sometimes, although it's wrong, I want recognition for the tough times. I hope that's not bad. It probably is and this is no way to start a blog. But there's really no point in going on if I'm not going to be honest about things.

If you're like me and want to get in touch, think I can help with a campaign, want to help me campaign, are worried, hesitant, passionate or angry about anything to do with kidney transplants, or organ donation of any kind, please email me or write a comment or tweet at me or any of those various tweemailable comms and I'll find the time. I think I'm on a mission.