Hi
I was diagnosed with end stage renal disease in 2007. Since then, I have had no transplant and no dialysis. I am still going strong. My GFR is 12. i am still realtively young (57). As far as I can find, no one has heard of a case like mine. I should not be alive. I was wondering if anyone had some similar experience or had heard of something like this.
First, I’m so glad you made this post! Second, how long have you been in Stage V? What does your treatment plan look like?
Sorry for all the questions, but I’m in Stage V too. I’ve been in Stage V since early January of 2017. I’m not on dialysis yet. No transplant. My nephrologist and his nurse practitioner are both clearly amazed.
I have interacted with a person from the UK who was in Stage V for close to 5 years before she started dialysis. But that’s the only other person I’ve run into who has had a long period of time in Stage V before starting dialysis besides myself.
So, I would love to hear more about your situation.
Jayhawker
Hello I am stage 5 now since February 2019 I am not on dialysis or have had no transplant yet. My doctors is monitoring me closely they were doing blood work every week now I'm back to every month because My creatine at the time was 5.4 it went down a 4.5 10% GFR now at 9% creatinine at 6.0 I am a little scared because this is new to me I currently take care of both of my elderly parents they're both 80 my father has dementia my mother has congestive heart failure I have a son with special needs I have to maintain his affairs also I'm still going strong. Transplant did put me on the list but they're taking forever in a day! My oldest son wanted to get tested to see if he's a match and they're taking their own sweet time so I'm a little confused about a lot I even thought about just packing up and leaving the state of Indiana and going somewhere else in another state hopefully things can move quicker any suggestions but I will say this, praise be to God I'm still here..
My eGFR was as low as yours when my renal function first plummeted—January of 2017.
At that point my creatinine was 4.65 with an eGFR of 9.
Last fall, nearly 20 months later, my creatinine improved to 3.25. It was a gradual improvement that my doctors believe happened because my very low blood pressure improved. At that time, last fall, I was also experiencing drops in blood pressure when going from sitting to standing.
By this past April I was no longer experiencing the drop in blood pressure when going from sitting to standing. I was also no longer having problems with dizziness with any regularity. My kidneys now usually test with creatinine of 3.0 and eGFR of 15.
I’m still actually feeling fairly decent. I have just shifted to a new nephrologist as of May 30th. He’s the one who went into high gear to get me referred in for transplant eligibility testing. Frankly, I’ve been surprised at how quickly this is moving. But I haven’t yet had the first appointment with the transplant center at St Luke’s hospital. I may find when I get there next Wednesday that the testing is actually going to take some time. But I’ll make a post to let everyone know what I’m experiencing.
What special needs does your son have? I’m a university special education faculty member with background working with children with autism. I started working in higher education at the University of Louisville. While there I worked closely with the autism resource center at Indiana University; although, it’s been many years since I worked with them🐶
The oldness has come to my life🐶🐶🐶
Jayhawker
Stage 5, no dialysis, no transplant? Any trouble eating or sleeping? How is your skin and hair?
Glad to tell you more, but there's not much more to tell. I've been in stage 5 for almost 13 years.
I looked in on a dialysis clinic 13 years ago and spoke to some people on dialysis. They all thought it was horrible. I heard I would only live maybe a couple of months without it and so I decided to do whatever I wanted to, which was to keep working and try to enjoy my time. So I waited, and waited, and waited and....here I am today. They wouldn't put me on a transplant list because I wouldn't do dialysis. If they had just put me on the list 13 years ago, I probably would have had the transplant by now.
I would suggest you talk to your doctor. My nephrologist says this can happen sometimes. But don't let my experience be a guide for you.
I am in regular contact with my nephrologist and his nurse practitioner. Frankly, they’ve both been more than a little surprised at my situation which is nothing compared to yours.
My nephrologist referred me in for transplant eligibility testing at the end of May. I’ll go to my first appointment on Wed, July 31st. I’m not sure what the transplant center will do first as they start the evaluation... The transplant center knows that I’m not yet on dialysis.
Do you plan to start dialysis at some point? I’m planning to try PD dialysis first. I’m hoping I’ll feel and function well on PD.
Well, you’re amazing!! Thanks for sharing with us.
Jayhawker
Hi I am stage5 also kidney function is 14 I feel ok but I am booked in for a fistula and was meant to have it end June and I havnt heard as yet, my function dropped in the last year, was your function the same all that time.
I was diagnosed with CKD in April 2015 at eGFR 17% and told I would be on dialysis within 6 months. I did not have any treatment at all as my doctors had consigned me to the dialysis queue from day 1. I reached stage 5 in Sept 2016. I carried on working full time in a demanding job until June last year when I hit 12% and then I had to throw the towel in as I was too tired to keep working. Over the last year my kidney function has gradually fallen to 8% and I get days where I feel very sick and have zero energy but I get other days where I feel ok. My doctor is now urging me to have the surgery to have the PD pipework fitted.
If you check out Natural Kidney Journey, there are many who have not only survived, but also improved their renal function.
So I have been stage 5 for a long time also. I am not on dialysis yet. I did go on transplant list 2 years ago but if you don’t have a living donor, it’s pretty much useless as everyone on dialysis goes before you. I will not be going back for more testing until I’m on dialysis, if then. I know great strides are being made on artificial kidney and hoping it will be in time for me, God willing.
Leektone, I find your story encouraging. I'm CKD4 with an eGFR of 27-29. R kidney removed in 2016 due to cancer originating in my bladder (it was removed a year earlier). I'll be 80 in October, so I'm not eligible for a transplant should I lose my L kidney. My current thinking is that I would not start dialysis, unless it could be machine-assisted PD at home while sleeping. We're selling our home within the next 6-12 months to move into an apartment complex. Storage of the dialysate required would then be an issue. It's in the Lord's hands, but I'd rather leave this life without pain and discomfort rather than win a longevity contest.
Thanks for sharing this! I couldn’t agree more on your comment about length of life. For me quality of life definitely trumps length of life; it’s all about how I’m feeling and functioning on a day to day basis.
I believe one of the innovations currently under development, although I’m not sure when it will be ready for use, is a tap water delivery system for the dialysis fluid. I’m hoping that comes to fruition very soon as not having to store upwards to 60 boxes of dialysis fluid a month would certainly make in home dialysis, eg, PD dialysis, much less burdensome for us.
Jayhawker
I'd say, with almost 30% GFR, you're in good shape, as long as you take care of your diet etc. I don't think PD is coming your way soon, so...have fun .
Leektone thanks for sharing your story. It's very interesting that you've gone this long without dialysis. Do you know the cause of your renal failure?
I have never heard of that. My nephrologist had me start dialysis when my GFR was 6 and I was in stage 4. I was on a no potassium diet and bounced between 4-5 then up to 6 where he became concerned Prior to this I was put on the transplant list for 2 years. I had all the necessary testing done to put me on the list. One month after starting PD dialysis, I was fortunate to receive a kidney transplant. It's been 7 years now and I am doing well. If you ever proceed to dialysis, I recommend PD. It's a lot to learn but worth it.
The cause of my renal failure seems to have been some sort of infection, since the total process took about a month to go from 100 function to a GFR of 10. And I have been living a normal life since then. No medications, no special diet, no nothing.
I originally posted here to see if there was anyone else out there like me, with a similar experience. If there is, I would love to hear about it.
I waited until I was at GFR of 9 before getting ready for dialysis. My doctor said that if I went below 8 there was a chance of getting some kind of infection or heart related problem. I can't remember exactly. I decided to go on while I could still do it on my timing and under my control. I quit work about 3 years before as I was too tired to do my job. It took me at least three years to go from about 21 to 9 and start dialysis. I found a book by Lee Hull that explains all the food things that can affect your kidneys. It has extensive research studies in it. People that adapt his eating style are starting to reverse their disease some. I got it too late to keep me off of dialysis, but he just came out with the diet book and I just got it. I am going to try to follow it to see if I can get my symptoms to improve by not overtaxing my body with food I shouldn't be eating.
Hey there! So happy to have stumbled on your post and great job with beating the odds!! I have had IgA Nephritis for over 20 years and this summer my GFR unexpectedly dropped to 12%, after being at 30% for the last two decades. I was working a lot and eating a lot of meat which I definitely think kicked things up. I have switched to plant-based and feel good. What is your secret? So nice to hear that you are living comfortably with 12%!! Take care, Julie
I happy to hear you're doing well! My husband is 53 and has had CKD for 3 years now. He is currently in ESRD and has a creatinine of 10. He works hard ever day as a landscaper and has no real physical symptoms. He isn't on dialysis yet thank god! He goes every 8 weeks for blood work and his doc watches him closely. The only symptoms he has is sleeplessness.
My husband hasn't had any dialysis or transplant but is still going strong. Do you mind if I ask what you do to stay healthy any home remedies?
There is a guy on YouTube the DadAdvice Kidney guy who has a similar story. He has had a doctor on who has said unless you are 10 GFR or below do not do dialysis. Change your lifestyle and eating habits.
Yes, I love his show.
Any trouble eating or sleeping? How is your skin and hair?
There are many like us. I'm currently at 10% but other vital signs are good. Obviously I'm not healthy like I was many moons ago but it's possible to increase the GFR slowly if you stay focus.
Hi there. Same situation here. In 2019 i had a gfr of 14.8, which jumped up to 19 after increasing my bp meds. Then back down to just under 15 within 6 months. I feel ok most of the time, other than suffering from terrible insomnia and having really dry skin and hair. Take medications for potassium, a statin and bp but so far all but my pth has remained within range. There was a great hoopla for me to get on the transplant list, which i did. But after that everything stabilized. A good thing, but kinda confusing.
iamastage4CKDdiet!!!Kidneysremovephos&potassium,samewithdialysis...answer:stopeatingfoodswithphos&potassium
Wow a 3 year old thread revived! All with information that could confuse some newly diagnosed with CKD. OP had AKI and kidney failure from a reaction to an injection according to her story, not CKD. Unfortunately CKD that leads to ERSD is not recoverable back to a normal life as described by the OP. Often times AKI is as the kidneys if not damaged too much can recover from an outside insult.
Just wanted to provide some perspective and to not give false hope to true suffers of CKD. There is too much to be hopeful about currently for those of us who suffer from CKD to be misled by false hope.
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