New here

Diagnosed in 2017 with CKD stage 3A. I have struggled with this news for some time until this week. I have had a gfr drop of 15 points in 8 weeks and then subsequently regained that drop over 90 days. This is the second time I have had a lift in my gfr over 2 years, but the most rapid. I have come to the conclusion my Dr doesn't really have my best interests at heart, the latest drop was from medication prescribed by her. Luckily questions were raised 7 days into it by another Dr and I able to stop all meds until I did my own research. Anyway I'm back up with my gfr. I'm now questioning if in deed I do have CKD at all. I accept my kidneys are a problem but as they are not supposed to repair, how is it mine do. I have long heard that detoxing is B..S..t at best but it rather looks as though my kidneys may well be doing this. Unfortunately with the amount of rubbish I have feed them over the last 40 plus years I'm solely responsible for the decline. Anyway I'm now taking extremely good care of what goes past my lips these days, probably to extremes but the resulting increase in function would justify the changes I have made. I'm slightly over weight, have IBS am diabetic, have Osteoporosis going on managing to put up with Arthritis and have premature muscle depletion going on. So I'm not a picture of health by any means but do make sure I eat correctly, I don't have a choice as any meds required to fend off problems only kill off more of the kidney function. I'm comfortable with the CKD diagnosis now and starting to get on with other things. I no longer worry about it so much and will only start to be concerned when and if my gfr drops to 30 and holds there. The big changes I have made is to drop all soft drink and definitely never down another glass on coke in my life. I have had to forego the pure orange juice as well because of the natural sugar content. Other than this there have not been any really big changes and still the gfr climbs. My next target is to reach over gfr60.

Cheers

[MAS_Nurse]

Hi Cheyne13,

Welcome to our community! I hope you will find the folks here are very supportive, knowledgeable and able to give you some answers.

eGFR can't be the only indicator of developing CKD, and other contributing factors need to be considered. eGFR is an estimate of GFR taking in factors such as age, sex, and other information. Please click on the links that will hopefully help you to be more informed about CKD and its progression and how to maintain healthy kidneys.

Edinburgh Renal Unit:

1) Blood Test results: edren.org/ren/edren-info/bl...

2) Chronic kidney disease and its progression: edren.org/ren/edren-info/ck...

Kidney Research UK:

1. Chronic Kidney Disease - what it is:

kidneyresearchuk.org/health...

2. Stages of Chronic Kidney Disease (CKD) :

kidneyresearchuk.org/health...

3. Healthy Eating:

kidneyresearchuk.org/health...

4. How can I help myself:

kidneyresearchuk.org/kidney...

5, Diabetes and kidney health:

kidneyresearchuk.org/condit...

Keep in touch.

Ok, folks please pop by and welcome this new member.

Best wishes,

MAS Nurse and Moderator

[babysaurus]

Hello! Sounds like my situation is very similar to yours. Good to find people in common. Im in UK. Hope to see you again on here. I only dip in from time to time as I don't want to get obsessed but its great to have a community here. ☺☺

[MarBea]

Welcome Cheyne!

Thank you for such a well written post.

Sadly, I became a member of this club last week.

I agree with you 100% that WE have to be our best advocate and vigil about our health!

Don't be afraid to respectfully ask questions, and go beyond basic care.

My PCP is new, and she is helpful and seems concerned to a point.

She has dropped a few comments I did not care for, and I have my eye on her.

There are many supportive people here, and we are in this together.

[Hidden]

It is nice to know there is support out there. I was going to say it is nice to hear I'm not the only one going through this, but that is kind of wrong it is not nice to hear other have to go through this.

With little or no help here in NZ it has been a struggle to find out what it all means for me. I was given until 2022 to survive which caused a lot of angst. I set about putting everything in order and have started disposing of my workshop equipment that I seldom use, retaining enough to potter about filling in my days. Unfortunately every part of my body, apart from my heart and liver is trying to kill me, and taking it's time about it.

I found that the local response to CKD was just ho hum, yawn, so what. Not a particularly helpful response when newly diagnosed and feeling like your on the cusp of life and death. The local CKD support group has closed and there is nothing left here.

For me the big worry has been not knowing what is happening, what caused it and where to from here.

Fear of death didn't faze me as I died in my early teens and was resuscitated, my kidney function stopped for 18 hours 4 years ago and were kick started up again lastly my mother died in front of me with kidney failure. So there is no fear of death and I'm well aware of how it will happen, unless the next bus along takes me out!

Now I feel in control of my body, diet and my future, life doesn't look so bleak. Then again I'm probably totally wrong and have lulled myself into a false sense of security!

I no longer wait with anticipation for the next test result, worry about if I'm eating right, drinking enough fluids or any of those stressful things. I'm starting to sit back and chill and let life take it's course, not bad for a control freak.

Cheers

[RhenDutchess123]

Welcome....We can get busy living or we can get busy dying....not today