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...

19 comments:

Jac said...

Glad the appointment went well and the lungs are top notch. Must be so frustrating about the kidney's though - at least they are looking at things early and there are some options available. It must be unnerving thinking about changing anti-rejections but you never know, the new one might be even better!
higs xx

BizzleBee said...

Great news that the blowers are in full force :-)
Hope the kidneyness sorts itself out when you change your immuno's, you's sail through it all i'm sure :-)
xxxx

Laura said...

I wouldn't worry about the prospect of changing immunosipresents as i've had to change in the past, cylcosporin caused my kidney problems and thats why i ended up having a kidney transplant, but that was years down the line.

fsgs said...

Get off the cyclosporin as soon as you can Emily as it WILL destroy your kidneys. Tacro may have a slightly higher risk of Diabetes but that doesn't mean you will get diabetes and Tacro is much more kidney friendly.

Cyclosporin use for renal transplants has been phased out by most renal units and the remaining few will be stopping using it in the near future.

Cyclosporin is a nasty nasty drug!!!

The best choice for long term survival of your transplant is Tac/MMF as shown by numerous medical studies and lets be honest here that is your number 1 primary concern!

Diabetes is completely treatable for the majority of people needing only minor lifestyle and diet changes for most (i.e. sensible eating which we all should be doing anyway!)

Anonymous said...

Actually, tacro is just as toxic to the kidneys as cyclosporin as it says on the post...

Holly said...

Keep smiling hun...

Thanks for plugging my blog, not sure that I explain things to well though!

Much love x

Anonymous said...

Fab news about your lungs, Em.

Lets hope all kidney related issues are little ones and that things remain stable for you for a long time.

Audrey xx

Anonymous said...

Glad to hear lung function is tip top Em.

Try not to worry to much about your kidleys, they will keep an eye on you and change when needed. I changed last year to Tac and MMF with no adverse reactions, they might put you on Sironimus (spelling?) they thought about that with me for a while. Take care of yourself

Bobsterxx

Clare T said...
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Anonymous said...
This comment has been removed by a blog administrator.
Clare T said...

Hello Emily
Since I've had this pc I have been unable to post comments on your blog - no idea why (I'll blame Vista - I am currently blaming Vista for All Things including global warming) but a friend downloaded a er.."service.." something or other.. to correct a few other issues, so maybe I'll be able to post now!
I have stayed up to date with your life and just wanted to say Hi really! It's so flab to read of all the things you can now do with ease. Your Greek paradise sounds wonderful.. was it like Mamma Mia?!
Sending strong vibes to your kidneys and lots of hugs and love
Clare x
PS Jordan is now 16! And currently in Egypt no less!!! :o) My baby is growing up.. (and I'm not actually allowed to refer to him as such..) I have got to go and collect his GCSE results for him on Thurs - I doubt he's giving them a second thought; he's just sooooo laid back these days! I am quite nervous!

Clare T said...
This comment has been removed by a blog administrator.
fsgs said...

Anonymous said...

Actually, tacro is just as toxic to the kidneys as cyclosporin as it says on the post...

Check out some medical trials about the relative nephrotoxicity of Cyclosporin and Tacrolimus. Tacrolimus is well known to be less nephrotoxic than Cyclosporin BUT as i said both still are nephrotoxic as is virtually every drug in existence to one degree or another. Just try finding a drug that doesn't say not to use if you have kidney problems.

Here is an example:-

http://www.ncbi.nlm.nih.gov/pubmed/15194300

The incidence of de novo diabetes mellitus was approximately 20% among patients using Tacrolimus. We concluded that Tacrolimus may be less nephrotoxic than cyclosporine. Tacrolimus patients showed better graft function and easier blood pressure control, but a high incidence of post transplantation diabetes mellitus.

--------------------------

As one other poster said there is also the possibility of Sirolimus but that will come with potential problems too such as reduces the bodies ability to heal so may not be suitable plus is more expensive which is bound to be an issue with our lovely NHS!!!!

The loss of 10% kidney function over such a short period of time is a fairly big drop although I wouldn't worry unnecessarily about 50% function as you will get along fine with that amount.

Most non renal transplantee will suffer a loss of some kidney function compared to renal transplants as they are generally more immunosuppressed which obviously has an effect too.

If you wish to learn more about kidneys and these issue I would recommend visiting one of the following sites

http://kidneypatientguide.org.uk/newBB/viewforum.php?f=2

http://www.kidney.org.uk/

lots of very useful information on them both.

Marjolein said...

Hi Emily

Glad to hear the kidneyman thinks everything is still ok :-)

I just had a kidney function test yesterday. At my 2 years post tx follow-up.

They did this test pre-tx and I was at 80% kidneyfunction. However 4 weeks post tx I was down to 32%... A big shock! So they put my tacro level down a bit and put the dose of the antifungal meds to half (the meds I was on at that time that were bad for my kidneys). I had to drink at least 2 liters a day too (when I don't think of it I'm a very bad drinker)..

6 months post they did another test and i was back to 64%. The last one that they did 1 year post was 57%. Hopefully the one from yesterday will tell that it's still about the same.

This is a test where they give you an IV with something radio active for 5.5 hours. Just before you have to drink some juice with something in it to pretect your thyroid. And they draw some blood. When the IV starts they start counting the time and they check your urine and blood after 1.5 hour. After that they check your blood every hour. And your urine twice more, every 2 hours.
This is a very elaborate(sp?) test where they check how much of that radioactive stuff is getting out.
This test is done with kidney tx patients but my hospital does them on all their tx patients because of the meds we are on. I think that very good. They don't only them when your Creatinine is up.

I just wanted to tell you my experiences with my naughty kidneys :-)

Marjolein said...

Just wanted to add to my post above that when my kidneys were at 80% that that was 10 months pre tx so about 11% before I was at 32%.

suzie said...

Hi hun,
Glad to hear good lung news, everything crossed here for good kidney news and sod the holiday weight for now we'll all start the gym....erm sometime soon ;-)

xxx

Anonymous said...

Hiya Emily glad that on the whole your MOT 'as such' went ok. Post transplant can be real juggle with immunosuppressants etc. Rach is in process of changing hers from Tac to MMF as her renal function in long term may be affected so trial and error etc with meds.She had terrible time on Cyclo at age of 2 and had to stop meds then. What suits 1 person s kidney may not another etc...Its reassuring to know the DRs keep good eye on you and regular renal function tests etc bloods scans etc and make necessary juggling act meds etc.

Glad you had a good holiday and ((hugz)) 2 u and your family.
Elaine & Rach xx

Sarah Milne said...

Glad it all went well with the lungs. We were told about kidney issues with the immunos (look at me gettign into the lingo already!). It is a big deal for children as they are on immunos from so young. I hope the change of regime goes smoothly and stops those kidneys from being naughty
loads of love, as ever
Sarah x x x

Alice said...

I HAVE CFRD and they still put me on Tacro....mmmm... should take it up with my Dr!!!! Although I like the fact that it makes the hair on your head thicker!!!