Is this age-related decline in GFR or kidney disease?

Hi,
Dysautonomia is to do with all the controlling nerves of the body that do what they are supposed to do without our thinking or input. My particular bent is Autonomic polyneuropathy which is the two main nerve systems of the body being compromised. So all the organs and all the extremities of the nervous system give me heaps of trouble when they like. My digestive system from top to bottom including bladder and bowel are permanently compromised which impinges on the amount and what I can eat or drink and get rid of. The other side is T2 neuropathy problems but luckily I have built up a high tolerance to pain and it rarely impacts my hands and feet, the chest pains are dealt with by ignoring them, knowing I have a good heart although enlarged helps.
For the last 13 months I have been reduced to a daily diet of no more than 6 slices of quality bread with a slice of shaved ham, the thickness you can see through and 6 cups of tea. Once a week I get to have a very small serving of peas, carrots a small sweet potato and a small piece of grilled chicken. By rights I shouldn't be able to do what I can do, my Dr tells me I'm just bloody minded, and I know that's what keeps me going. I'm finding I have to forgo more and more food types as this crippling disease progresses.
I am fortunate that other than the digestive symptoms the other symptoms are random and don't stick around to long each time, varying daily. I deal with what I wake to find and that can set the nature of my day ahead. It helps being retired and doing what I wish to do at my pace, usually at great rapid pace. The habits of a workaholic, I don't know how to slow down and probably don't want to. Keeping busy diverts the mind from the problems and allows me to move forward. I have found keeping moving helps more than sitting idle.
I can be paralyzed from the waist down glued to the spot for a few moments at a time, to being totally unable to cope with the body and brain not to function and anything in between. Usually the only thing I can do is wait them out until they resume transmission. I have even woken unable to remember how to speak with no concept of speech. Once the first time has passed the panic goes as next time I know what is happening and have to handle it.
In short it is like an electrical cable with a fault in it, sometimes it works and sometimes it doesn't, other times it can cause a lot of sparks! Dealing with it is relatively easy for me, I know it can stop the heart without notice and instantly. No different to anybody dying and we all do that eventually. Mix in all my troubles with a rash of TIA's last year and my life can get interesting to say the least. There being no alternative I have to manage it. It is permanent and progressive so I just let it do it's own thing while I try to fit in my things.
I don't think anybody is silly to be concerned about their health. I research everything I can about my ailments referring to recognised authorities and not the anecdotal stories. Once you know what the alternatives are it is up to us each how we deal with our illness.
I maintain I no longer care about my health, but the truth is I still am mindful of what I should and shouldn't do to preserve life. I'm not totally stupid, yet!
It took me a while to get past the death sentence with a diagnosis of CKD, but you do when you realise there are many of us dealing with CKD every day, just fine. Being told my kidneys had been inactive and shut down for over 18 hours didn't panic me. Being told I'm going to die from AKD did. Now I just have plain old CKD, life's a breeze, at least that is what I try to keep telling myself.
There is always the hope, I suspect that is why I keep going. It maybe missguided but that is it in a nutshell, I can't let go of hope.
Life is not too bad after all, I still wake every day ready to fight another round, stops me getting bored. It is kind of funny in that I'm testing my brain against my body, a fight I can't win.
Cheers

Hi,
Thank you.
I'm not awesome. I'm just like many others I'm playing the game of life with the cards I'm delt, the best way I know how, resisting folding as long as possible.
Cheers

Hi,
I firmly believe in pushing the envelope, not sitting back and trusting everyone else to fix my problems. Proactive and not reactive as far as I'm concerned. I have a vested interest to do better.
My typical day starts at 6 am with a cup of tea, a splash of slim milk ( looks like shoe whitening!) and a few grains of stevia, feed my cat with more than I can eat! Take my prescription multivitamin.
10am a cup of tea.
around midday either 2 boiled eggs or 2 slices of wholemeal bread plastic butter and a slice of wafer thin ham and maybe a gingernut biscuit, find they help settle the stomach
4pm a cup of tea and the gingernut again.
5;30 pm time for the gut meds and at 6pm there is a choice. The ham sandwich or a chicken tender on bread or in the weekend grilled chicken with very small portion of peas, carrots and a spoon full of sweet potato, no gravy but a dollop or real butter. or as the potato is small potato on my butter! If I'm adventuresome it could be half a chicken kiev. Usually followed up with the good old cup of tea.
9;30 pm a cup of tea and gingernut.
As the hunger pangs are always present I can have two slices of wholegrain low cal bread toasted with plastic butter anytime during the day but no usual. It takes me 3 weeks to finish a loaf.
I have to balance the amount I ingest incase I decide to have something cooked for evening meal. Last night I made salmond fritters with a small amount of leftover potato and veg in it. 5 2.5 inch patties with salt on and 2 slices of wholemeal bread and the plastic stuff on. Wham the mouth started getting, sticky the forerunner to acid spilling into the mouth and stripping the lips. Downed a spoon of Acidex, same as gaviscon but free on script. Doesn't usually work but it did this time as I got on to it immediately. I will have to reduce the amount of patties I eat in future.
Finally creeping into bed around midnight.
I'm starting to notice the amount of food I'm able to eat is slowly reducing, I hope it is not permanent.
If I vary the amount of food then I have to reduce something so the total amount for the day is doable.
If I ignore the restrictions and push caution to the wind I can push myself into a state of SIBO which has become a recurring problem as hunger can out weights my reality reality. I keep antibiotics on hand for such event now. I take meds for the stomach and laxative but the stomach meds do nothing for the stomach but they do help in emptying the bladder. Two months ago I discontinued my insulin and BP meds for the sake of feeling better and I do generally. One thing I have learnt is I can tolerate a lot and always manage to rebound regardless. Died once as a child and came close again with campylobacter which has highlighted my symptoms 13 years ago. I have always had sugar hits knowing it was likely diabetes, family history and from time to time had stomach problems. Extreme cholesterol and blood pressure but it left me alone so I left it alone. In hindsight what a fool I was to believe the Dr's back then that it was OK. Now I pay the price for stupidity.
The curious problem I have it matters not what time I go to bed I will always be up on average 5 hour later.
I understand Dysautonomia can do this but I have a lifetime of this pre-existing. When I lived in Detroit I used to go to work around 3am and shut up shop at 6pm, on occasions working around the clock. The power of commision work!
I have spent 13 years wondering what is wrong with me, finally getting to the point of almost believing everyone else, it is psychological, only to find this is what dysautonomia can do to you, anxiety, depression and brain freeze. The big problem I have is I don't look my age , look good on the outside and am reasonable fit able to out work anyone my age, therefore I must be good to those seeing me. Little do they know or understand the reality of my life and I find it is easier to leave it that way than go through all the ins and outs, over and over again. It's bad enough having to go through this with every Dr I run up against, educating them on Dysautonomia.
Despite my problems there are people worse off than me, so that tells me I can do this if they can, so why not try.
Cheers

@cheyne you have been very informative about your Dysautonomia. It sounds similar to my gastroparesis which is an autonomic neuropathy. In my case it is one of the many complications of my 50ish years of diabetes. We don’t diagnose or prescribe here at Mayo Clinic Connect but I wonder if you might find something useful in one of the discussions in the Diabetes & Endocrinology or the Neuropathy groups. At the very least you will see that you are not alone in dealing with ailments such as this. Also you mentioned insulin and BP meds. If you don’t mind answering, do you have diabetes &/or hypertension? Those are the 2 leading causes of kidney problems.

@cheyne what does this mean: "I regularly run to 18/20 for glucose. Since I have bothered taking notice I now argue the point that 7/9 is the prescribed max." Does this refer to an A1c?

I have a kid who has had type 1 diabetes for 30 years. When blood sugars are high (even over 200) they have all kinds of symptoms. How many of your symptoms are caused by high blood sugars- both in the short term and the long term?

My kid maintains an A1c in the normal range using an insulin pump and CGM. Before those technologies they tested 15 times/day. Are a pump and CGM available to you?

Hi,
18/20 mmo/l metric glucoes measurement not the scale US uses. I did know the conversion but time and memory loss, I think 200 was around 20mmo/l, don't quote me on that though. I'm so used to the high glucoes levels it is not until I breach 20mmo/l that I start having symptoms. By the same token when I drop between 4/5mmo/l I have some serious symptoms not usually seen until below 4mmo/l with most people. The guide line is 4/7mmo/l with up to 9mmo/l 2 hours after food. Oddly when I drop into hypo state the rapid acting glucoes tablets take over an hour to start working with me. All the times I have checked my glucoes levels when I'm having serious symptoms, glucoes has not been the problem, that was always the first test I went for then BP testing and finally oxygen levels neither relating to symptoms at the time. When I start struggling for breath yes the oxygen levels are down slightly.
Patches are exceedingly expensive here, residing outside US now, never mind the instrument cost itself. Aside from that I have taken myself off insulin and no longer check glucoes levels. I'm betting Dysautonomia and my digestive system will kill me before diabetes or kidneys get a chance.
Cheers