Kidney Patient Guide

I have had a dramatic drop in my GFR of 18% in just two weeks. The GP just said to have my bloods retested again (this seems to be her go to response and have had them repeated and repeated) but is not helping with the swelling to my face and ankles/hands. She said it will go away eventually, which it won't as have had the swelling for a year now.

I really concerned as have yet another Kidney infection for which a different GP at practice prescribed Trimethoprim, which the first doctor said I couldn't have due to my low level GFR. I just can't seem to get rid of the infection it keeps coming back.

At what point should my GP actually put me on the meds for swelling and joint pain? I did have an improvement in my GFR which I was overjoyed at but now it seems to be rapidly declining. My GRF was 52% 2 weeks ago which was fantastic news as had been 13% at Xmas, but now I down to 37%.

Hello Mrs Travis,

GFR is usually an estimate (eGFR), and is notorious for being inaccurate, hence the retest.

Trimethoprim, cannot be used in cases with low kidney function so what your doctor is doing is the safest option. This medication is used for kidney infections.

Swelling of, face, hands, ankles, along with some joint pain are a symptom of poor kidney function, if whatever is causing your poor function can be corrected then these should clear away.

The first step will be to try and discover what is causing your poor kidney function, then steps can be taken to cure it, if this is possible. There are many reasons why your kidneys are behaving in this way, and diagnosis a process of elimination. To this end, it is best to stay with the doctor you are attending at least until you are fully diagnosed.

A eGFR of 37% is not a big problem, dialysis (an artificial kidney) is not usually started until eGFR has fallen to around 10%.

You did not mention blood pressure (BP), it is usual, in cases of poor kidney function to aim to get BP down around 120/80, high BP is not good for healthy kidneys so not helpful to sick ones.

I hope this is of some help, best wishes.

Thank you for replying.

My BP is only slightly higher than it should be so that's just being monitored.

I do know the cause of kidney problem. I had my right kidney removed last September as it was blocked and full of UTI infected stones and I couldn't shake the infection. I was put on long term antibiotics and had a nephrostomy tube and drain in situ, but the kidney was deformed and enlarged. I was warned I may never get rid of the infection.

I just don't want to take the Trimthorpim if it's risky, especially since the first GP said no to it but the second GP disagreed and told me to take it.

Hi Mrs travis,

Trimethoprim - My strategy, in this situation, would be to printout the data sheet (you can find this on the internet if you have not got an old one) and show this to the second GP (the one saying take it) and ask him if the manufacturers recommendation (not to be used in cases of kidney failure) are relevant to your case.

I think this medication is eliminated from the body by the kidneys, if used in cases of kidney failure the level of medication in the body would get too high. However, your kidney function may well be adequate to safely process the Trimethoprim.

If your GP practice has several GPs, you will almost certainly have been assigned one of them, if so, you would be much better to stick to that one or if you prefer another one always go to that one. This way, I think, you will get better treatment.

Best wishes.

Sorry to hear about your situation.

I went from 50 eGFR last summer to about 5 eGFR now.

Big drops were October eGFR 35, November eGFR 25, December eGFR 20, then I started dialysis around 12th February, I was in hospital by this time, sick as a parrot.

One thing they do seem to emphaisise when the number goes down, is that the number is not important, it is how you feel.

But typically most people feel like shit.

The problem with fluid swelling is that it increases your weight and therefore can increase blood pressure.

Tell the doctor/nephrologist you WANT action on the swelling now. Or a reason why he or she has elected not to treat yet.

Remember, the doctor works for you.

my GFR also drop in weeks/ month

creatinine shoot up from 150-240 in just 3 weeks time.

[quote

The problem with fluid swelling is that it increases your weight and therefore can increase blood pressure.

Tell the doctor/nephrologist you WANT action on the swelling now. Or a reason why he or she has elected not to treat yet.

Remember, the doctor works for you.[/quote]

I think this is dubious - High blood pressure is likely to cause retention of fluids (swelling), and Kidney failure will as well. Left untreated, it can cause breathing problems and finally interfere with heart function. Doctors and Consultants are well aware of this, and will be monitoring the situation to intervene before any damage is done. Confrontation doe's nothing to help the patient Doctor relationship.

In the early stages, intervention is usually in the form of diuretics (water pills) to push the kidneys into passing more water, however, as most patients do not like taking pills, and the resultant frequent trips to the toilet, the treatment is delayed as long as possible.