GFR down from 58 to 43.8 over 3 years

Hello, my GFR went down as yours did. I had formally been drinking a gallon of water a day while I was on immunotherapy. Since I've been off for 4 months I laxed a bit. My egfr went down again so they suggested I see my primary and start drinking a gallon of water a day again. PC did an ultrasound on my kidneys and and I was back up to the -50s and the ultrasound showed no damage to the kidneys, although my egfr was in the '40s off and on for the last year. Hopefully hydration will help you also

@tiglet Sometimes a long-term medication can indeed cause side effects with our kidneys. Or a new combination of meds. It's may be worth looking in to, you know!

Little things can contribute to feeling fatigue, feeling "down". The weather, family/friend concerns, if you splurged on a few meals that were not your normal, and the old hydration issue. Many times it is a small combination of more than one thing, too. Please don't be too hard on yourself. Pick yourself up and be kind to yourself.
Ginger

Hi,
Stupid Dr's attempt to get me to take medication for other issues. I have always declined medication I can do without. It took me awhile to figure it out and get it out of my brain. Now when I see her I remind her I'm still in the land of the living with glee. She told me/us some pretty stupid things over the few short years with her, she is no longer my/our Dr for some obvious reasons. The last straw was telling my wife her foot pain was arthritis when it was discovered with self funded X-rays she had 3 broken bones in that foot!
My CKD journey started with zero kidney function from AKD. Kidneys were down for 18 hours at the end of 2 weeks of severe Campylobacta, before I realised I needed help. During this event they decided I had T2 diabetes, really high BP and high cholesterol levels. I often wonder if I should have not allowed them to do what they could, but let me die.
The Champylobacta caused AKD now CKD and Dysautonomia, combined with T2 diabetes and unchecked high glucoes levels it is more likely to kill me first than kidneys.
So far it has taken over my bowels, bladder, digestion and is interfering with my blood pressure, brain fade, eyesight, cognetive skills and stability issues. With no cure and no known help I'm in the world of, suck it and see. Frankly I'm tired of being a lab rat. It has the ability to stop my heart without warning, instantly, that kind of focuses the mind to the here and now.
My mother-in-law at 95 has a GFR 18 and is still managing without help, intervention or dietry constrant. I have decided no dialysis for me, if she can survive it, so can I.
Each morning I wake I deal with what is ahead, the day I don't wake, I won't be caring.
Cheers

What is AKD?

My kid has type 1 diabetes and is well-controlled. It sounds like you need more help with blood sugars. These days there is a lot of technology to assist with control.

Hi,
AKD is accidental kidney damage which becomes CKD when they don't bounce back to "normal".
For some unknown reason I react to all oral BP and T2 meds and have gone on to insulin, antibiotics have to be injected now. Because of the Dysautonomia and the refusal to script me with fast acting insulin I still get highs and lows. I believe with the kidneys, uncontrollable BP and Dysautonomia my glucose levels are being interfered with. With readings in the range of 4.5 to 7 normally I can suddenly drop to below 4 for no known reason. Fortunately that I can deal to, but with glucose tablets they take 3 hours to start working, not the 15 minutes they are supposed to. The sudden spikes of around 20 I have nothing that can help but hope in time it will return to "normal", for me. If I eat one small "normal" meal the glucose level goes berserk. I now live on 4 slices of wholemeal bread with plastic butter and a slice of shaved ham per day mixed in with 6 cups of tea. Yes, not ideal but what the stomach tolerates best. Of a weekend I will try to stomach a small plate of vegetables and some chicken. If I eat more than that with the slow digestion from Dysautonomia I end up with SIBO. It is a delicate balance to stay out of SIBO. I have just recovered from the last bout and now I'm back to stomach acid backing up into the mouth and stripping the lips. I do best when not eating, just my good old cup of tea. Now with the revelation that Dysautonomia is present it kind of starts to make sense to me. A great pity they never looked at it 12 years ago when it all kick off.
To date there is no cure and no form of help, so each day I learn a little more of what I can do or not to work with this disease.
Cheers

Do you think it could be gastroparesis? Has any doctor tried Reglan?

My daughter had undiagnosed celiac and the resulting GI issues made blood sugars go crazy. You also don't have fast acting insulin or a pump.

It is unfortunate that the only food that goes well for you is a carb.

Do you have an endocrinologist?

Hi,
I'm under a good Gastrologist and have been for some years. We have tried all manner of medication with little or no success.
As it stands the major problem is Autonomic polyneuropathy to be more specific, which is the 2 main nervous systems being affected. Being Dysautonomia means a lot of the minor symptoms are random and intermittent and very difficult to see/diagnose. I have arrived at the point where the message from the brain to contract the required muscles to empty the bowels rarely gets through and the same for the bladder, it takes twice as long to digest the stomach contents as my wife does after the same meal all be it, a fraction of what she eats. I have very little control but fortunately I am not incontinent with it. I get the urge to do something and the message is clear, but the required reaction is missing in action.
I'm on the last BP medication know and am reacting to it as well. Fortunately I'm able to push past the effects as the alternative is the severe migraine. My back stop is codeine which I use sparingly if at all. My BP is out of control with readings from 137/84 to 197/114 this morning, it can change that much through the day. It is not unusual for me to see 240/120. Just such an incident sent me to ED 2 months ago for 8 hours with no let up. It was at this time the Dysautonomia/Autonomic polyneuropathy was discovered.
The worst I have ever been is paralyzed from the waist down unable to move or step for several minutes, left standing looking at my feet wishing they would do something, but no, not happening. I go through periods when I can only move about with walking sticks to the now very rare occasion when the Dysautonomia decides to take a break for an hour or three. On such a rare occasion I get stuck in and do everything I can before my normality returns. I'm lucky in that there so far is no real pain or numbness to the body just no tactile sense, but then I can and do suck up a lot of pain in preference to painkillers. My only task is to get through every day as best I can, hoping for something better to happen, or the miracle cure we all seek.
Cheers

I hope you also get an endocrinologist and a good neurologist. Nephrologist might be needed. Stage 3b is eGFR 30-44 over 3 months.

Hi,
I've been refused several referrals to nephrology as it is not time yet! A referal to eurology came back "we are to busy to see you"!
There is nothing for an endocrinologist to look at and I've been waiting for neurology to do a MRI scan since November last year when they thought I had Meniere's. Which I don't as the hearing has not been affected as it is with Meniere's.
I think I have become ----ology intolerant!
As my good friend tells me the only Dept I haven't been refered to is maturnity!
Unless there is a miraculus cure there is no hope. The state of my kidneys really doesn't factor into the bigger picture with Dysautonomia. If I can't wrestle control back there is little hope of ever being comfortable again.
It has come down to how long I will put up with this discomfort before I call time.
I only wish a few people around me had to go through a week of my life, their view of my life would change dramatically. They may truely understand my predicament.
Cheers

@cheyne Is your PCP refusing to do the referral to nephrology? Go to head of the practice and tell them! Complain! Does your insurance allow you to self-refer? If you don't know, ask them. Worst they will say is, "no".
Ginger