How long does ckd take to get to endstage? - Early CKD Support

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How long does ckd take to get to endstage?

Stevo99 profile image
25 Replies

I know it all depends on your health and diet and underlying cause of ckd etc but Just wondering if it’s possible that it may stay stable at a certain stage or is it inevitable to go to end stage?

Does it always mature to end stage? Or do some people stay at certain stages ?

Are here any people here who were diagnosed with ckd in their mid 30s/40s yrs old and still healthy in older age?

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Stevo99 profile image
Stevo99
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25 Replies

Nothing is guaranteed but consider this. What are your options? Stop smoking, cut out or at least cut down on alcohol, check and watch your meds, eat kidney-friendly meals and learn all you can. Is this a sure thing, NO! But it's your best shot of slowing down CKD progression and beyond that what other options do you have? CKD can't be cured. You can only slow it down, and do absolutely everything to avoid dialysis and/or transplantation. Depending on your age and the other factors I mentioned along with your particular CKD not being genetic, there are no other options. Some follow the Ostrich Method. Sticking your head in the sand won't help you. Not thinking about CKD won't raise your GFR. Taking active and proactive steps every day to improve your CKD and overall health may not be what you want to do but it probably is what you have to do.

Stevo99 profile image
Stevo99 in reply to

Thanks for the reply I was just curious,

Im a 38yr old male and was diagnosed in 2015 with ckd and I have been monitored by a specialist every 4 to 6 month since then, my ckd is stable and hasn’t really changed since diagnosis with a gfr of 60+ And traces of protein in urine, my blood pressure is ok at moment. I’m not taking any meds for anything but I do only have 1 working kidney since birth and only found this out during a routine medical examination at work which after tests eventually led to the diagnosis of ckd due to the low gfr number, my 2nd kidney is there but is small and has little function.

So I’m basically just being monitored, I do eat healthily and workout regular etc but I’m wondering if the lower gfr could be due to only having 1 working kidney

It’s a constant worry which I try to keep positive about I have 2 young daughters and a son on the way in July so I try not to think about ckd too much I try to live a normal and healthy life as much as possible.

Hey thanks for the reply and for listening

Ange17 profile image
Ange17 in reply toStevo99

Hi,

I too only have one kidney. Due to a misdiagnosis I lost mine in January 2015 to hydronephrosis. My urinary tube kinked up and it basically killed my kidney.

My GFR is around 58 and I'm 46 years old. I think about what my future holds everyday now. I have 2 nephrologists I go to now .. yes 2! I don't trust doctors anymore after my bad experience. Both have told me if I keep doing what I'm doing with my kidney diet and excercise they both don't think I'll ever have to be on dialysis later in life. I know there is that possibility but I'm trying to do whatever I can now to prevent that.

Also technology is an amazing thing. It keeps getting better and better every year. I've been watching the testings they are doing with the artificial kidneys and the future really looks bright as that being an option for allot of people in the next couple decades or so.

One of my customers at work shared her experience with me when I had my kidney removed. She lost her one kidney in an accident when she was 12 years old. She is now 85. Her GFR is the late 20's early 30's. She said the most important advice she could give me is not to worry. She said her entire life all she did ever single day was worry. It's hard to do but you have to stay positive because in the end you might be just fine like her.

Live life. Enjoy it. Don't spend it worrying because in the end it won't change the outcome anyway.

Crinkster profile image
Crinkster in reply toStevo99

My nephrologist recently told me he has a patient who is been stable it 18 for the last 10 years. Everyone’s different but a positive attitude can really help.

Bet117 profile image
Bet117 in reply to

Well put compassionate, honest explanation!

Life has no guarantees, but being proactive and making good decisions can make a world of difference!

orangecity41 profile image
orangecity41 in reply toBet117

I find this to be so true also.

Amberjay profile image
Amberjay

I was diagnosed at 21 and I'm now 26 and mine has been pretty stable it can take years and years to reach end stage though I have been told there is a certain percentage of people that never reach end stage could be you! If it's in your family history though and they've all had transplants you will most likely go down the same path

I think so much difference can be made with diet and lifestyle. Eat fresh foods mainly. The body finds it easier to digest these. In doing so you will also be setting a good example for your family.

I had a renal crisis almost 10 years ago with kidneys almost shutting down completely. Mine came without early warning signs. At least none I was aware of at the time.

Over quite a period I managed to gain back some function and now am semi stabilised at about 30% between both kidneys. They are both at about the same capacity. But recently I have been made aware of a potential further risk to one of them.

If this risk develops my remaining kidney may not have enough function to keep me from dialysis.

As others have said nothing is certain. One thing that doesn't help is stress. So you have to do what you can to manage it.

You mention that you workout. I hope you don't take those protein powders. I have been told they are not advised for ckd patients.

You say your bp is ok atm. But maybe you could start to be aware of how much salt is in your diet.

It's all a learning process, but you are quite a way from the cliff edge.

Louise5027 profile image
Louise5027

I was diagnosed stage 3 in my late thirties, I'm now 53 and still at stage 3

I don't follow a strict diet, my BP is well controlled and it hasn't changed my lifestyle at all. There are slot of reasons for CKD so it depends on what's going on with your kidneys and their functions. Etc

Stevo99 profile image
Stevo99 in reply toLouise5027

Wow that’s really great well done,

Basically with me Iv only had one kidney doing all the work all my life and I have only been made aware of it due to finding traces of protein in my urine,

I didn’t lead the most healthiest of lifestyles before knowing this but I do now

Thanks for the reply

What caused your ckd?

orangecity41 profile image
orangecity41 in reply toLouise5027

Thanks for sharing. It gives encouragement to those on Chronic Kidney Disease

hankshardscapes profile image
hankshardscapes in reply toLouise5027

So have you been passing protein the whole time and would that be acute or chronic?

Stevo99 profile image
Stevo99 in reply tohankshardscapes

Yes and chronic I believe

Freckle1000 profile image
Freckle1000 in reply toStevo99

ARB's and ACE inhibitor class blood pressure medications reduce protien leak and keep the strain off damages renal cells.

The introduction of Candesartan had a near magical effect for me during my last GFR/protenuria saga three years ago where I thought I might come close to loosing them.

I've had CKD since the age of 13. Was very lucky to keep them back then. Now they're still chugging along pretty well at the age of 51.

lowraind profile image
lowraind

It is more than possible to live well with one kidney. Think about live donors who donate their kidneys to others. You spoke about exercise. I believe they prescribe "moderate" exercise (perhaps someone can explain what that means in terms of ckd). You also mentioned that you eat healthy. What that means in renal friendly terms is different from what many other diets mean. Control amounts of sodium, potassium, phosphorous and protein. If that is what is prescribed in later stages of kidney disease, does it not make sense to take steps now to prevent decline. 60 is still a good score. With all that you have that makes life worth living, do all that you can to protect what you have!

Good luck!

Stevo99 profile image
Stevo99 in reply tolowraind

Thanks for the reply and words of encouragement xx

WYOAnne profile image
WYOAnne

There is no guarantee that you will even wind up in end stage and need a transplant. If you follow doctors' orders, take your prescribed meds, moderate exercise, follow a kidney diet, quit smoking, no alcohol.......you may be able to live with it. For me....I had glomerulonephritis and it took 8 1/2 years to wind up needing a transplant. For me that was the 90's and kidney education and meds have changed a lot. I am living well 18 years after my kidney transplant!

hankshardscapes profile image
hankshardscapes in reply toWYOAnne

At what stage did you find out you had glomerulonephritis?

WYOAnne profile image
WYOAnne in reply tohankshardscapes

If I remember correctly, I was at Stage 3 when I was diagnosed with glomerulonephritis, so was considered in moderate kidney failure . That's when I started the high blood pressure & that was the first symptom.....before being treated for it, was 190/110. But I guess that is the problem with kidney disease, you don't realize anything is wrong until it has progressed. That is why it is so important to KNOW early, when for some, you can do something to prevent it from progressing. My transplant was over 18 years ago and the NKF has made great strides in educating doctors and the public about ckd.

Saaba profile image
Saaba

Hi stevo 99

I can understand what you are currently undergoing. I feel the same way. With children to take care of it is very difficult not to get stressed. But one thing I would like to know, you mentioned traces of protein in urine, was it only traces since the beginning or it has now reduced to traces?

As long as you eat healthy, keep BP under control and sugar within normal range then you would not hv to fear anything.

Have faith.

Stevo99 profile image
Stevo99 in reply toSaaba

Hi thanks for the reply I believe it has reduced to traces since they originally detected it

Cheers

toeragthecat21 profile image
toeragthecat21

hi having been through the complete jurney from chilhood infection at 6 to a transplant at 58.i can give you some idea..i had one kidney left at 6 which lasted for52 years.and if id had better care during the years between i think it would have lasted all my life but im sure people from my past would argue this..so al i can advise is keep away from pain killers .low salt diet..no red meat..and plenty of water..and keep weight to bmi levels...take care regards chris

Stevo99 profile image
Stevo99 in reply totoeragthecat21

That’s amazing thanks for sharing yeah Iv had a lot of antibiotics in the past for chest infections etc usually brought on by hay fever

But Iv not had any in the last 2 yr and plan to keep clear of any unnecessarily meds as much as possible

Take care xx

toeragthecat21 profile image
toeragthecat21

thanks for reply..regards chris

Crinkster profile image
Crinkster

My nephrologist recently told me he has a patient who is been stable it 18 for the last 10 years. Everyone’s different but a positive attitude can really help.

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