Reduced Kidney Function

Thanks Helen,

I will aim for the same route I think and hope it works out!

KenR

Keep us posted on how you are doing.  Candesartan is a good one for getting bp down but I was on that and they advised weekly bloods on day 4 my potassium went up so good at the bp thing bad at the rest.  I was on 200mg of moxonodine and 10mg of amlodipine, on dialysis could drop the amlodiphone but after transplant the anti rejection drugs play havoc for a bit then I was on none then they posioned me and I got norovirus lol so on steroids was back on both which helped off the steroids after 3 weeks dropped amlodiphine and will look to drop the other when I am sure its ok.  My team are ok they leave most things to me as long as I tell them what I am doing.  The only thing I never mess with is my anti rejection, but they are really good with me if I tell them its not right they check and amend not like the specialist hosp who poisoned me twice!.  You will get there just keep going, may also be worth mentioning be aware should you need antibiotics as there are loads you cant have under 25% these are things I have picked up along the way so worth asking if need be ever

Hi Helen,

Thanks for your advice.  I am a suspicious b......... to start with and will do the research when offered anything.  It is saddening to hear that  you have had some poor care  events, these just should not be happening!

Take care,

KenR

Hi,

Ooh I am like you, won't take anything until I have investigated.  They tried to put me on statins once I told them to jog on (my GP this was) my cholesterol was up on a Jan blood test they only told me in April wouldn't do repeat bloods and wanted to give me the highest dose possible with no weekly reviews as you should get.  i said I had been eating cheese the whole of Jan as that was all I could stomach but they wouldn't listen so I didn't take them,  My hosp did my bloods and it was fine so I would have taken them horrible things for no reason.  Always ask and investigate completely agree with you. Don't be sad I am not backward in coming forward they know exactly what I think at all times and luckily I don't have to go to that so called specialist hosp any more

Hi,

I wonder if anyone can tell me what routine checks on kidney function are available on UK NHS, and at what frequency you have them.  My eGFR at 28% would appear to indicate a need for checks, but from a hospital contact I understand that this might be 3 monthly, and may only be another eGFR test.  From what I gather a wider suite of tests is common in the US, but it would seem that in UK they wait for a problem to appear before testing for it!  Any advice would be appreciated - I am all for avoiding the problem!

KenR

hello Ken,

Of course this depends on your current GFR, and to some extent, which part of the country you live in.  I am in the south east of England and when I was at Stage 3a I began to have six monthly visits to the nephrologist with blood tests every 3 months which included full blood tests, Ferritin, Transferrin, Transferrin saturation,  Vitamin B12 and folic acid.albumin and bone profile. Now I am at 3b and for a while, had the same until my iron levels and Hb dropped despite taking oral iron.  At present I see a nephrologist every 4 months, have the same blood tests but also visit the anaemia clinic to have EPO and intravenous iron when I need it. I also have 3 monthly Vitamin B12 injections and take folic acid.  (You need iron, Vitamin B12 and folic acid to make red blood cells) The clinic now gives me monthly blood tests (weekly at first) and phones me if I need to change the EPO dose or have more iron.  I feel less tired than I did and my immune system seems to have strengthened as I have fewer chest infections.  I  am relatively well on this regime.  My GFR is around 24%.  I am 74.

Hi,

You do seem to be getting the right sort of support.  I am not too confident that this sort of help is easily organised here in the SW!

KenR

Gosh, Lyn, whereabouts in the south east are you?  I'm also in the south east but don't get the number of blood tests that you get.  Mine are simply those for kidney function, ie eGFR, Urea and Electrolytes, Creatine and Potassium, and occasionally the liver function box on the form is ticked.  I don't think I've ever had my B12 tested.    My sole kidney eGFR is at present 38%, and I am just 75.  Think I'll have to move near you!  Mind you, I was in hospital for a couple of days recently and I guess they may have done all the tests then.  Unusually for me, I did have 3 chest infections between December and February/March so did wonder if something was amiss in my body.  At the time Iwondered about my Vit D levels as they were found to be low a few years ago.  Since then I have been advised to take a 3-month course each winter but I didn't start it until late in December this time.  I asked for a Vit D blood test after I'd been on the Vit D supplement for about 5 weeks and it was found to be just 45 so, no doubt, even lower before the start of the course.  By the end of the 12 weeks it has risen to within normal range at 84.  Must start the course earlier next winter in case that was the reason.  I hope your eGFR remains stable, Lyn and that you feel well.

You don't get the VitaminB12 and Folic acid tests until your Hb drops below 10 indicating anaemia.  And the monthly tests are not done until you are on EPO and intravenous iron.  This is because EPO can raise your BP to levels that are too high and also to check whether the EPO is working and moderate the dose if necessary. EPO first raised my BP too much and I now have a reduced dose.

Hi,

Good luck with the checks.  I know that the  U S scan is not great at identifying something specific.

  Although I was at Stage 3 before my right kidney was removed I had no specialist appointments or meds, and the need for kidney removal was found accidentally when doing a bowel check.  Now I am keen to have regular checks and think I will have to ask for these rather than having them offered!

KenR

Many thanks for your kind wishes, Ken - must say I'm not looking forward to the camera jobby!  Lucky you for your problem kidney being found during a routine bowel check - did you not have any other symptoms, such as UTIs, apart from the reduced function.   I must say I'm amazed how many times I hear patients say that something is found by accident.  Just last week a friend's hubby went for his usual prostate cancer monitoring and they found a spot on his bladder that turned out to be cancer.  I expect your remaining kidney will now start growing larger to do the work of two.  My sole kidney is apparently slightly larger than normal.   Stay well, Ken.

 I do hope that it proves to be nothing serious Mrs O- will be thinking of you and hoping!

Many thanks, Lyn.  It's going to be a long few weeks!

Many thanks for explaining that - I won't feel left out now!