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...
Sending some smiles!
2 months ago