Wednesday, August 27, 2008

One of the biggest differences in life now compared to life when I was ill is change (this blog is a bit of a stream of consciousness, bear with me).

Whilst I was waiting for my transplant, the only thing that would ever change was my health status, or at least that's the only really significant thing I can remember changing. I am not sure if this was carefully manufactured (people ensuring stability in all other areas of my life) or whether it was logical (if you can't get out and do stuff then nothing really changes) or even whether it's just my memory focusing on the part of my life which captured most of my time and attention. But I am fairly sure that in everything else there was a reassuring yet dull consistency, one which is artificial, whatever caused it.

I am still quite surprised at how fast the course of life can change this side of things, and I’m not sure I’ve quite taken it all into my stride yet. I always prided myself on being so independent when I was ill but sometimes when change occurs now I still find myself reaching out to someone just for a bit of reassurance (normal behaviour? I am unsure). Luckily for me, the tight-knit circle of people I had when I was ill have gone nowhere, but we just have a much more balanced support relationship now. For example baby sister number one (middling) is turning 21 this week (sob) and it was jointly agreed that her room needs a bit of a make-over (there are still toys of mine in there from when I was 8). I was able to spend the entire morning there helping tidy, dispose of and clean and it felt fantastic just to be able to chip in and do my bit. I don’t think I’ll ever get over that joyous feeling of doing something “normal” and remembering how impossible it used to be. And I never want that feeling to fade.

So yes, change. I’d like to ask for some feedback actually; whatever stage you are at in life (not ill, transplantee/patient/CF whatever) how do you adapt to change? Am talking about larger movements in life (job, house etc). Are you confident with where you are going next or is life still a bit of a mystery that you’re feeling your way through? I still love the adventure; it's exciting and has movement, pace and opportunity...I’m just wondering if I’m the only one without a map.

Tuesday, August 19, 2008

So yesterday I went to see the Kidney man.

This is not his name because he a)looks a bit like a kidney or b)consumes them on a regular basis, rather that I can never remember his name and he is the Dr who looks after our kidneys post transplant.

As you should have read here (if you've been paying attention) my kidneys have been being ever so slightly naughty so Dr C booked me in to see the Kidneyman to have a good look around and check that there aren't any other factors which are causing my Kidneys to muck around.

I had a Kidney ultrasound, which apparently I also had in Feb 2007 but I don't remember at all (suspect I was knocked out as I was still ventilated at that time). For those who haven't had an ultra sound, they squeeze what they promise will be a warm gel onto a probe (which I think looks a bit like a barcode scanner at the supermarket) and then dig about on your abdomen. Whenever I squirmed a bit (they have to push around quite firmly to find the kidneys I think, not really sure) the radiographer commented "ooh, ticklish?" to which I had to bite my tongue to refrain from commenting, "no and you need to look up tickling in the dictionary as this is certainly not it".

It all went OK however and isn't painful at all and I was informed that my kidneys look fine which is a big yay moment. I then went and completed all the regular tests (stonking lung function - think Greece must agree with me and am considering requesting holiday funding on NHS) and then my lovely mother who accompanied me as it is the summer holidays (she is a hardworking teacher. OK she's a teacher) took me to Uxbridge to buy lovely things. YAY! After our shopping expedition and lunch (as we were a bit fatigued after all the shopping) we returned to clinic to see the kidneyman.

He was very nice and extremely reassuring – I have been pretty nervous about all this as it’s something new. I am pretty used to my lungs mucking around but I was asleep when I went on dialysis post transplant so am only used to having good well behaved kidneys, and would like them to stay that way please. Anyway he was quite clear that he is not alarmed as yet, however there is an evident drop in kidney function and he estimated that my kidneys currently have about 50 – 60% function. That came as a bit of a shock; to be honest I didn’t even consider that they might be able to measure how well they were working through those minor tests.

Apparently it looks like I am just one of those patients who is going to be more sensitive to cyclo. This means that at some point we will have to change my immunosupressants to try and preserve my kidney function. Not particularly thrilled at this prospect as I have been incredibly lucky so far and not had a single bout of rejection (touches all the wood in the vicinity) but as they said, my kidneys are young and strong and we’d quite like to avoid dialysis (it does make me smile how lightly they drop these options in, as if they are mentioning the need for a new haircut or something).

So yes, the summary is: currently nothing to worry about, so we watch and wait as I am still fairly “new” post transplant therefore let’s not rock the boat before we have to. However at some point we will be changing my immunos. Incidentally massive thanks to those who responded saying they’d had their immunos switched as it helped to read other people’s experiences. I am lucky to have such a fabulous team as they are constantly pre-empting anything that might happen which means I have lots of options open to me and my kidneys are being well looked after. If anyone is medically inclined and (like me) curious to know why I am not on Tacrolimus and MMF, the reason is that Tacro can cause diabetes and as I am pre-disposed (is that right?) to it anyway cyclosporin is the better option. Plus Tacro is equally as toxic to the kidneys (or nephrotoxic – check out me and my medical vocab). For anyone who wants to learn more about kidney...ness I suggest you check out Holly’s blog; she is one of our LLTGL advocates and is waiting for a kidney transplant and explains things ever so well.

Looking back at yesterday it was a very good day; no huge current issues with my kidneys, my chest X-ray was described as “pristine” – all I need to do now is lose a little of my holiday weight...

Tuesday, August 12, 2008

We went to a gorgeous little place on the coast in Greece; a little bit of paradise that my family and I discovered way back in 1993, and due to falling in love with it went back a further 6 times. On that last visit, I knew it would quite possibly be the last ever one for me. I loved it as much as I always had done but merely being in the heat was exhausting, let alone walking along the beach or up the small rocky steps to our apartment.

As I mentioned in a previous post, this was the place which I went back to in my mind when things were at their most tough. Whenever I was undergoing procedures or trying to keep myself calm, I’d picture myself, eyes closed, lying on the white sand listening to the waves with the Greek sun beating down and warming every inch of me. Needless to say I was rather excited about returning, plus this time A was coming so he’d get to see what all the fuss was about.

The holiday was fantastic; 2 weeks of heat, sunshine, good food and lovely people. I couldn’t believe how different it was for me, and the lack of effort (compared to last time) it would take to do things still surprised me, even though I knew me and my old lungs had had to work very hard to keep up.

I got a bit of swimming confidence back too which was lovely. When the turquoise Mediterranean stretches before you, cool and inviting, it’s much easier to overcome the fears developed over years of tiring quickly and suddenly, and by the end of the holiday I was swimming right out to the buoys that marked the end of the bay and back again. I walked to the cliff edge one evening and stood and watched the evening sun dance and sparkle on the sea, before throwing some flowers in for my donor, and watching them drift out slowly and disappear into the glittering waves.

It’s strange being back home; that feeling of “was I really there?” (which I’m sure hits all holiday makers when they return to normality) has hit home and I am now trying to catch up on real life where I left off. I had the most amazing two weeks and really cannot believe my luck that I was able to return to such a gorgeous place that is filled with so many memories from over the years.

Busy (but exciting) week ahead, so more to come soon, but for now here are some more pics which whilst they don’t do it justice, demonstrate slightly just why I love our little Greek paradise so much.