When to be concerned or when to panic

This seems to be the big problem with newly diagnosed CKD folks.

From my own relatively recent experiences we tend to panic initially until we can get our heads around the problem. Until good information is had life is hell, regardless of the gfr number. For me it has been a task to find good information and come to the realisation that it is not good at gfr 43 stage 3B, but once I had been able to see my past results it is not all bad either, other than the Dr's had not bothered to tell me. I think the critical point is stage 3, it really is time to make some changes to my/your life. At age 67 my understanding is gfr 60 is the norm for kidney function. What I have learnt is that attention to diet, and attention to prescribed medications are important and that if you can keep your gfr stable you should be concerned with your health, not panicking. I have never been a big drinker (non alcoholic!) and still I don't drink the amount of fluid I'm told I should. I found some information that suggested drinking copious amounts of water is not the smartest thing to do. The suggestion was to watch the urine colour, if it is clear to light straw coloured your drinking enough to flush the kidneys. If it is darker in colour your not drinking enough to flush your kidneys. If it is red tinted then possibly like me you have eaten too much beetroot!

For my diet I don't eat a lot of red meat and stick mainly to chicken and fish. Despite producing large amounts of meat here in NZ it is relatively expensive here. I try to get through as much vegetable as possible and have started eating the proverbial apple a day to keep the Doctor away. I read somewhere the apple helps facilitate the body to function. If not I'm enjoying them anyway!

When I fall to gfr 30 then it will be time to panic and I'm not to sure that is the right term at that stage. In theory I should know more about CKD and be better equipped to handle the situation when and if it comes.

So to those just beginning the CKD journey, above stage 3 be concerned, at stage 3 make changes to your life style and below stage 3 you really do have to get serious and get sorted.

I still don't know how I ended up with CKD, my best guess is self induced or total kidney shut down for 24 hours, with severe campylobacter. It does't much matter it is what it is, I have to deal with it as best I can. It has been 2 years of frustration and hell for me, I hope now that I know more about it and my body, this calmness I'm experiencing will continue.

I have ordered my life, secured my wife's financial future and made significant changes to my life style and my gfr is rising.

I'm not a Doctor and have no medical training, this is just how I cope with CKD .

I'm comfortable with death, I tried that one already in my early teens, I'm comfortable with kidney failure, I tried that also 4 years ago and I have seen death from kidney failure first hand and I'm comfortable with that. What I'm not comfortable with is what it does to those about me and that is what pains me the most.

I hope the way I deal with CKD can enlighten those new to this game of CKD and dispel some of the initial fears you will experience on your journey with CKD. 2 years ago I was ready to order my coffin, now not a chance in hell.

I have only recently joined this group, although I'm half a world away there is great support here. I only wish I had found it 2 years ago.

Cheers

[MAS_Nurse]

Hi Cheyne13 and thank you for your post. It is really good to hear that you are finding this forum to be of great support. You sound so much more positive now which has a very good effect on both physical and mental well being. Sharing information with other members of the forum will help you to support one another. I hope you have found the links [CKD and its progression and how to maintain healthy kidneys useful--MAS Nurse reply]. Also, please have a look at the Pinned Posts on the screen for more useful information. Are any forum members able to help Cheyne13, please?

Thank you and best wishes

[orangecity41]

Thanks for sharing your CKD journey. I am age 78 and was diagnosed at stage 3b by my new Doctor almost 4 years ago. The previous ignored the stage 3. Doctor prescribed CKD diet and exercise has helped me. I also have other conditions to deal with. It seems medical conditions are part of aging. Our health is our wealth.

[Bassetmommer]

Hi Cheyne,

Great post. It is the right attitude and you are a warrior. When I was told that I should prepare for dialysis within six months, it scared the crap out of me too. But that was over a year and half ago and guess what... I am doing just fine. I was angry at first because I blamed everyone and everything for my situation. But it was a waste of time and not productive.

And like you, I became educated and supportive and that has been the best medicine.

Keep posting here because it does help all of us.

Thanks for being you!

[airborne77]

Good post and a great attitude. Gotta love the Kiwi's. I am also in stage 3 and was quite surprised when the test results showed up. I caught it and not the doctor and I explained that by the high overload the General Practioners have on their plate. I am treating it aggressively at this stage and every 3 months will take blood tests to check effectiveness of the new way of living. It is a new way of living but not all that bad. Some benefits to the new lifestyle and a few downsides. I comfort myself remembering that I didnt pass up very much of life to get to this point. Now it is time to pay attention and take care of myself. Age 76 and GFR 48.

[MarBea]

Bravo Cheyne13,

Thank you for writing such a detailed and thoughtful post.

Many of us are overwhelmed, when we discover we have CKD, it is just out of the blue.

It is normal to panic and be alarmed.

I agree that educating yourself, and doing all that you can to protect your kidneys and your health is the way to go.

[Hidden]

Thank you all for the kind words.

One thing that I have noticed is that each country seems to use a slightly different formulae to work out the gfr figure. For NZ Government they have their own formulae but the blood processors use the Australian formulae which tends to read lower than other formulae. I stick to the Australian one as it gives me a lower gfr despite really wanting the higher figure. With a creatinine of 121 it is the gfr difference of 5 points. Not inconsiderable when every point counts.

Sadly the only parts of the body I'm able to exercise are the brain and knees, oh, and the mouth, to some peoples displeasure! So I don't do a lot of exercise which does not help the body function. I maintain a healthy diet in so much as I can, but only intake 60% of my daily dietary requirements, I drink around a litre of fluid a day, usually by way of cups of tea and very little actual water itself. I refuse cholesterol meds, won't take pain killers, only take 1/4 of the prescribed blood pressure meds, I refuse antibiotics and have never been inoculated for anything in my life. Yes I probably have black marks on my medical records and obviously am not helping myself any, but the results speak for themselves.

For the last 6 months I have been unable to use my arms and hands to any extent, which is improving slowly. So I have had an enormous amount of time to sit around and get thoroughly depressed over my CKD, and Dr.

One starts to wonder what sort of life this is, in fact I don't think it is a life to be blunt. Finally the penny dropped when my gfr rebounded to a new high. I'm not in imminent danger of death, yes I have CKD but I'm still alive and with every gfr point higher there is every reason to believe this will not kill me any time soon. I often wonder what the last 2 years might have been had CKD been explained to me fully and had my wife not asked the Dr how long has he got.

I have read countless pages of info on CKD and never actually found the one that really helped. You understand what needs to be done at the various stages of CKD but that just doesn't really impart any revelation. The understanding of CKD and where you fit in, what you can do for yourself, what is next and where can I get help/support. All elusive.

My rule of thumb is now nothing enters the body with out research and scientific fact, nothing gets taken that can hurt the kidneys and always second guess medical opinion. My kidney health comes before all the other problems trying to kill me. Fortunately there are drugs for anything else but as far as I'm aware nothing to fix the Kidneys.

It would be nice to see a fact sheets to dispel the panic and fear of those newly diagnosed with CKD, may be we need to start a thread devoted to putting their minds at rest and leading them through their time of great stress with facts and useful support .

Cheers

[Bluejean11]

There is a lot negativity out there on the web. So it tends to scare people when they first realize they have diminished kidney function, maybe in a way that’s good since it motivates people to take better care of themselves. But on the other hand it’s not good to worry excessively. When I first heard my kidney function was down , in the fifties my initial research on the web was kind of scary as many articles claim the disease is relentless so I just figured I would need dialysis in a few years, that was 5 years ago and my kidney function has never been lower than 50 or much over 60 the main thing being kidney function is stable. With medication, exercise and diet this disease can put in remission.

[Hidden]

I can't say I found much negative CKD info on the web, possibly I just skimmed over it not paying attention to it. I just didn't find much that helped alleviate the panic mode maybe I missed that too! I am very cautious talking about gfr figures because what is a normal gfr figure for a given age group is where the focus should be. So 60's plus age group the normal kidney function is gfr 60, so I read. The difference between the normal gfr for your age and your gfr figure is the important figure. Over that figure and life is relatively sweet, under that figure and it's time to make some changes. Bottom line is a healthier diet does no harm.

Cheers