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This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

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Kaz
Posts: 4
Joined: Tue Feb 28, 2023 12:30 am

New to forum

Post by Kaz »

Hi I’m new to the forum and have just been told my egfr is 47. A big shock as I had no idea my kidneys were not functioning properly. I’ve been doing some research but not sure what the next step is. Plus, it looks like you can’t eat anything. Feeling quite overwhelmed. Any advice or wise words are welcome.
Thumps
Posts: 1307
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: New to forum

Post by Thumps »

Hi there! There's not a huge amount of traffic on the forum these days so I'm glad you found us.

First thing - try not to worry too much about a single result. It's all about a trend and direction, not the number. Also the reason for the eGFR being what it is, is very important. For example, my eGFR is currently between 45 and 50 and has been for 15 years since my transplant, and I live a very normal life with no food or fluid restrictions.

The important things to find out are - what is causing that number to be lower than normal, is there anything you can do to prevent it dropping further and what the outlook is for the future. There's so much that can be done.

The boring truth of it all is that we can do an awful lot to take care of ourselves by simply doing the standard healthy stuff: stay hydrated, eat lots of fruit n veg, not too much salt or fat, do a bit of exercise.

I hope you get lots of answers at your next appointment, do come back if you have any more questions!
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Kaz
Posts: 4
Joined: Tue Feb 28, 2023 12:30 am

Re: New to forum

Post by Kaz »

Thank you for your reply. According to my GP, there has been a decline in the last 3 years from 61 to 47. I’ve never been told this before. He was a bit vague and that is the only Information he gave. I have to have another blood test in 6 weeks time, so presumably I will find out about next steps and official diagnosis from those results.
I’m glad to hear you’re well and able to live a normal life too. That’s very encouraging to hear. Thank you for the advice.
JMan
Posts: 3473
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Re: New to forum

Post by JMan »

Welcome to the forum.
Its daunting, even terrifying, but treatments are good these days. Your GP may refer you to a neurologist in time, (kidney specialist) But this is might not just be yet as you still have plenty of kidney function

We have 2 fantastic support charities in the UK as well, KidneyCare UK and the National Kidney Federation.
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
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http://www.flickr.com/cybercast
Kaz
Posts: 4
Joined: Tue Feb 28, 2023 12:30 am

Re: New to forum

Post by Kaz »

Thank you. I need to book another blood test and find out more information. I think I’ve gone into denial as I’ve not made
Any changes and feel well, thinking my GP has made a mistake, but really I know that the numbers speak for themselves. I’m sure reality will kick in at some point.
Thumps
Posts: 1307
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: New to forum

Post by Thumps »

It's entirely possible to live a full life with that kind of function level, but it's certainly good to know why it's changing. Depending pn your age, renal function does decrease as we get older.
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
lashy
Posts: 69
Joined: Fri Mar 09, 2007 11:45 am
Location: cumbria

Re: New to forum

Post by lashy »

Hi,
Welcome to the forum.
I have not been on here in years, and just popped on to see how people were doing.
I can totally understand your shock st your EGFR, and probably assuming the worst...
Firstly, you are in good hands. Renal units/teams across the UK are fantastic (we have experience of several over many years and they have been outstanding).
Secondly, ask lots of questions. You may have dozens, but you need to know the answers, to get things clear in your mind. The more you know the better equipped you are moving forward with any potential meds or treatment.
Finally, make use of this forum. You may not get answers to specific health related questions, but you will get the emotional support and experiential insight that medical professionals may not be able to offer.
Take care x
PS. Just saying hi to everyone else on here. X
Kaz
Posts: 4
Joined: Tue Feb 28, 2023 12:30 am

Re: New to forum

Post by Kaz »

Thank you for your reply, it’s very reassuring. I’ve now accepted it, but can’t get in the mindset of changing any lifestyle choices. I recently had another blood test which was 51, so slightly higher. The doctors were not concerned as they didn’t feel it necessary to let me know. I had to ring up for results. It seems they just leave you to get on with life until you become poorly and need another blood test. I’m in two minds whether to contact the GP for more answers or just leave it for now.
wagolynn
Posts: 1368
Joined: Thu May 23, 2013 2:49 pm

Re: New to forum

Post by wagolynn »

Hi,
Depending on the cause of your kidney reduction in performance - there can be temporary reduction which are curable or out right kidney failure which is not curable but can only be corrected by a transplant.
If you have outright kidney failure, it will tend to get worse but this is not predictable, the speed of degradation varies from person to person and may well progress erratically.

eGFR is an estimate of the kidneys performance and can be inaccurate, the trend of successive results is more important, than one result on it's own.

For most patients eGFR gets quite low before you show any symptoms say eGFR 20, dialysis is usually started around eGFR of 10 to 12 but this will depend on how the patient is coping. In the past, patients have been usually referred to consultant if they are showing a steady decline, at first appointments may be once a year, gradually coming down to monthly as eGFR gets lower, and other blood results confirm what is going on.

In the mean time, you need to exercise, nothing drastic, a brisk walk for 20 -30 mins 4 times a week - enough to make your heart pump.
Eat healthily, five veg or fruit each day, keep salt intake low - no salt during cooking (replace with herbs) look out for pre prepared foods, bread, crisps and snacks.

Try to get information about your condition, ask questions, if look at the Home page for this website there is lots of good information.
Be warned, there is a lot of rubbish on the internet, you need to check the source before you believe it.

It is not insurmountable problem, rather just another curved ball life throws at us.
A tendency to depression is common symptom but if know this you guard against it.

If after reading about the condition, and this raises more questions, I am sure you find answers here.

Best wishes.
Peter
Posts: 1
Joined: Thu Dec 28, 2023 3:20 pm

Re: New to forum

Post by Peter »

Pre dialysis. eGFR 60 but feeling toxaemic
I am feeling very tired, listless, not good coordination, tender stomach, almost black stool (on 3 separate days incl 27, 28 Dec);
Since aki (reaction to antibiotic whilst dehydrated and low b.p.)
apparently occurred ~ 10-17 November 2023: feeling very cold, with some periods of being very hot;
Burning sensation in one foot: occasionally affects both.

Does anyone identify with these symptoms plse?
Skm
Posts: 68
Joined: Sat Sep 01, 2018 10:13 am

Re: New to forum

Post by Skm »

Hi Peter,

With an eGFR of 60 your symptoms are unlikely to be due to renal toxaemia. You seem to be having a tough time. Black stools can be due to medication (Iron and others) or bleeding into your bowel. This may be related to your tender stomach. You really need to be assessed by a doctor. As you posted a few days ago I hope you have managed to see your GP.
Best Wishes. Hope you get sorted out soon.
Transplant May 2015
wagolynn
Posts: 1368
Joined: Thu May 23, 2013 2:49 pm

Re: New to forum

Post by wagolynn »

Hi Peter,
I hope you did get to your GP.

Best wishes.
wagolynn
Posts: 1368
Joined: Thu May 23, 2013 2:49 pm

Re: New to forum

Post by wagolynn »

Hi Kaz,
Just one more thought, I should have included it in my last effort.

Before going to appointments, make a list of any questions you have, we all tend to forget some until afterwards...
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