tick tock

Went to see the kidney team again last week. Got some good news in that none of my blood results have got any worse (in fact they've improved a little since the liver surgery, hurray!), hovering around the 300 mark and a GFR of 15, but the trend is gently and slowly getting worse, so we're looking again at what happens next.

I mentioned that I preferred the idea of home haemo but the Doc thinks I won't be on dialysis long enough to merit that kind of building work in the home, which I suppose is a good thing. People on the kidney BB keep going on about PD but I honestly just can't imagine having a tube in my belly all the time and walking around with all that extra fluid and how it'd make me feel, it just seems so alien. :-/ I'm told I can't have PD for a while anyway, cos I've just had surgery on that area and my insides are probably not ready for it, also the doc seemed to think my kidneys may be too big for the PD fluid to have room anyway. So, the upshot is they want me to come in and have a fistula (access point in my arm for dialysis - basically a very enlarged vein) built soon. I spose it's the right thing to do but it doesn't make it any easier to think about! I'm on EPO now as well which I have to inject myself with. Scary.

Still hoping I can avoid the whole dialysis business by having a transplant, obviously. But my donor has more tests to have  and I can't help thinking that it's becoming less and less likely as time goes on. Madeline seemed to think it's 50/50 now depending on these results. If it's a no, then I've got at least another 6 months of this to go through while we test another donor I suspect.... can't think too far ahead. HATE that. 

Been reading about people's experiences with dialysis and transplant - things like people's hair falling out, and loads of different drug names and doses and the fact no-one can quite agree on what the right doses are, etc etc... I'm freaking out a bit to be honest. What I wouldn't give to be told that all's okay and I won't need anything for a few years yet, wouldn't that be wonderful.

:(

Work is difficult, I can't think straight or do too much, but I keep second guessing myself as to whether it's physical or mental distress which is doing it, or if I'm just using this as an excuse to be lazy. *shrug*

Organ Donation

I'm amazed at the number of people who are still so ignorant of this subject - obviously it's quite important to me now, but since I was old enough to get my own driving license I've been on the organ donor register.... more importantly I've discussed it with those who are important to me so they know what I would wish to happen.

It's probably quite ironic that most of my organs would be pretty useless to anyone else now, but my lungs, heart and corneas are probably still good enough if anything were to happen to me. I'd give blood if I could but for obvious reasons it's not that great an idea for me!

Got really annoyed by an episode of The Simpsons recently as well where Homer is asked to give his Dad a kidney. They were so full of shit - saying things like "wow, you've substantially shortened your lifespan to help your Dad!" and showing him repeatedly running away from the Op. Way to go to encourage selfless behaviour *lol* I know it's only a cartoon but the lifespan thing just isn't true, for a start!

So yeah. I guess the point of this was to encourage people to think about it a little. Whether you decide to go on the Organ Donor Register or not, it's certainly something everyone should try to discuss with their families and loved ones.

Busy!

Clearly I've been pretty busy, it's been nearly a month since I updated this!

So.

We finally moved house on July 20th, thanks to lots of willing hands and mates n things. Had a couple of days to just start getting ourselves together when G headed back up north for work. Then on the 26th I went in for the liver cyst operation at London Bridge Hospital. 

I react badly to general anaesthetic. Just like last time, I woke up and instinctively wanted to get out of bed, which is tough when you can't actually move, having been attached to the bed by tubes and things on all four limbs plus a catheter and an oxygen mask over the face!  Poor G had to sit and watch me sleep and cry and generally be useless all weekend. Got out of hospital on the Tuesday, which was great. Had a week and a bit off work to recover, first day back today.

We've done a bit more decorating, and hopefully I'll be able to paint this week while G's away up north.

I feel pretty good at the moment - better than in months, actually. I think I'd really under-estimated how much the liver cyst was affecting me and bringing me down. I've had flashes of feeling really great - almost feels like I don't need the kidney transplant now. Wouldn't it be great if I went off to hospital next week and they said they'd made a mistake and all's well?!

Assuming that's not a possibility though, donor stuff is moving on at a good pace and I may still be on target for the end of September. Eek.