Very very anxious : I have been reading... - Early CKD Support

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Very very anxious

Barnhouse
Barnhouse

I have been reading some conflicting things the last few days about the nature of CKD and the inevitability of end-stage renal failure within 10 years if someone is in CKD stage 3. I realize that there has been a lot of discussion about this on health unlocked and I'm appreciative of what I've read here I guess I'm just looking for some further reassurance is this actually true or is that a false statement also I'm wondering if someone could respond about the overdiagnosis of CKD that perhaps is going on in America and around the world again I'm probably looking for some additional reassurance this is been constantly on my mind and I'm having a hard time shaking the worries and anxiety that I'm experiencing thank you so much for your inputs

22 Replies
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If you can follow a medical article - I have the following ..

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

I've posted these before - and if you can follow them even partially, they are worth a look. I can come up with more that might assure you further. Unfortunately, you will find nothing in the "digested for patients" Internet articles, mainly because the digested dogma is published by the people who created it in the first place.

Let me take a look later and see what I can add to these. Good luck. And DON'T WORRY!

Barnhouse
Barnhouse
in reply to Jonquiljo

Thank you Jonquiljo

OK... I've got more. Some are even more patient oriented.

medpagetoday.com/nephrology...

theconversation.com/making-...

bbg01.com/cdn/clientes/spne...

nytimes.com/2015/09/15/heal...

And a British video ...

bbc.co.uk/programmes/b01lt2vn

Now I am not trying to make any anti-CKD point here. CKD is a very real disease. But the thread that runs through many of these articles fits the bill - that in the process of oversimplification, too many people are diagnosed with something they likely do not have. It is commonly expressed in terms of the elderly - in that it is estimated that (by the current guidelines) over 50% of people over 70 have CKD. Now that's a lot of dialysis machines! Looks like too much simplification way too soon.

The people who developed these guidelines meant well. But they failed to do what they tried to do - which is to make a comprehensive system of screening out of CKD. Like quantum physics, some things are forever going to be complex. You can't just simplify them to make life easier.

I am definitely not trying to convince myself (by convincing others) that the criteria for CKD are too wide - too lax. I personally was introduced to the world of CKD by specialists checking out my Chronic Lymphocytic Leukemia (CLL) who needed me to have optimum kidney function when it came time for me to be treated. I am trying to point out the obvious - and what probably 90% of non-nephrology physicians tend to do. The obvious is that we, as patients, need to THINK on our own about all the ailments and afflictions that are thrown at us each day. Some of us have a lot to worry about, some of us have nothing to worry about, and some of us have to be careful.

I am 77 year old male and diagnosed at level 3b 3 years ago. It was not just the eGFR that was considered but other factors, such as blood work results, other tests, and some have to do with aging. I do not think I was misdiagnosed but glad it was caught at mid stage and some action taken to slow down progression. Quality of life is also a consideration.

In the srticles I mention - also in others, the question is raised as to whether aging is being interpreted as a disease state. I am not far behind you (at 65), but do get caught in “aging” as being a reason for changed performance and lab values.

Thats when physicians really have to think and pay attention to wheter what they call a disease state is simply older parts performing normally. Either way, when aging we need to need a closer eye on things and take a bit better care of ourselves. As far as kidneys go, some people have even suggested different criteria for oldervage groups.

The current GFR equation only puts decreased muscle mass in the picture as we get older. I’m not even sure how valid that is as older people are much more active than before. Perhaps it would make more sense to have 60’s, 70’s, 80’s being given different “rules” when scoring potential CKD. Right now it makes no sense to have someone in their 20’s have the same guidelines for CKD determination as someone in their 70’s.

True. Agree someone in 2-'s need not have same guidelines as someone 70. Many things to consider. Lucky too I have a Doctor who has geriatric experience.

I am a 74 year old woman stage 3a. I am curious what action was taken to slow down progression? My doctor has taken no action and I am looking for ways to preserve as much function as I can. I only have one kidney and I guess it has been stressed.

I was put on a renal diet and restricted on Sodium and Phosphorus as blood work showed those items were high. Later on I was restricted on potassium also. So I have to watch those 3 items. I also use Davit diet planning and tracker. There are other diet trackers also available on line. It is good you are being proactive

Thanks Orangecity41. All my markers except for Creatinine and Bun and protein are normal at this point. I have ordered Lee Hall’s Stopping Kidney Disease and his kidney diet book. It is an adjustment, since both my parents lived until 93. I have 4 older brothers, my oldest brother is 92. No one in my family has had kidney disease. I haven’t had a issue being born with one kidney until now, multiple peripelvic cysts appear to be affecting function.

Good your other blood work is in normal range. Consider letting your Primary Doctor know of any diet you put yourelf on in case it effects some of your bloodwork outcomes.

Well as I’ve said before I’ve been at stage 3 for about 10 years and have actually improved my GFR so end stage renal failure is definitely NOT inevitable in 10 years!!

There’s this from the UK NHS which has a very reassuring first paragraph:

nhs.uk/conditions/kidney-di...

I also found a document a while ago that shows that only a very small proportion go on to have renal failure (I think it was only 5%) but I can’t find it again. If you search up my posts on this site, you will probably find it.

Although being diagnosed with CKD sounds scary, in the vast majority of cases it is NOT a death sentence.

Barnhouse
Barnhouse
in reply to Julesboz

Thank you Julesboz. This has been such a HUGE unanticipated blow that few people that I know can talk to me about. What's so strange is that I feel fantastic and just ran 6 miles I have zero symptoms and yet I keep thinking to myself I'm a sick man who's on his way to dialysis and I can't get the thought out of my mind

Julesboz
Julesboz
in reply to Barnhouse

Try not to think like that. I don’t think of myself as sick (as I’ve said I don’t really think about it and only come onto this site to try and reassure people who are going through the same thing) and I’ve spoken to several doctors who have told me that our kidneys are ridiculously over engineered and having a GFR at our level is fine!

Julesboz, What have you been doing to preserve kidney function? I’m recently diagnosed as stage 3a.

Hi, I eat healthily. I avoid too much salt, processed foods and never drink fizzy drinks. I cook meals from scratch and eat lots of whole foods with lots of veg. I’ve also got food intolerances and can’t have dairy, gluten, soya and alcohol. I’ve noticed my GFR reduces if I eat dairy, so avoiding that helps. Most people will tell you to reduce red meat too but that’s my one weakness! I drink water and try and avoid too much caffeine. I also make sure I exercise regularly but not madly (I swim and walk). They key thing is that at stage 3, I don’t go mad, just eat sensibly.

Thank you Julesboz. Time to eat better, my diet is not that bad, but I can do better and need to start walking on a regular basis.

I have had CKD since 1999, mine has remained relatively stable, I have had a few times over the years when I have dipped, my renal consultant does not feel that I will ever get to the point of end stage renal failure.

I have Iga nephropathy, medullary sponge kidney and a renal cyst.

Every Dr that looks at my strange kidney numbers and scratches their head. Not one talks about CKD , lifestyle modification, nothing. I mention CKD and they tell me not to jump to conclusions.

The only reason my high creatinine was brought up was by my hematologist/oncologist. He wanted to make sure that I would be resilient for treatment if I ever needed it. When I saw him last and told him that the numbers had been stable for 15 years and that I wasn’t leaking protein - he nodded his head and said we could move on. Generally kidneys and leukemia have nothing to do with each other in the earlier stages - like me.

My cardiologist tried to convince me that my numbers were just unique to me. He’s been doing this a long time - and CKD in later stages manifests often with cardiovascular problems. He wasn’t worried at all.

If you were sick, you would know it. Remember, the CKD staging is dogmatic and oversimplified. The reason I try to make these points is that I see dozens of people come here every week or month with really nothing remarkable about their kidney function. But they are scared to death - for no reason. This fear has to stop at its source.

Hidden
Hidden

Conflicting information in the medical field is a reflection of the seed of deceit fears, worries and lies our adversary the devil has planted in this world to steer people in the part of destruction which is always the adverse effect of worry and fear. Inevitability or certainty or what is sure is that you are alive now for a purpose and whether its 10 years the speculation stands at or you hoping for more, what is inevitable is that you cannot die if you find the true purpose of your existence. There are so many conflicting informations out there cause none is based on the truth. There is only one truth whether we all believe or not and its the word of God. That which you seek shall not be found in man. Reassurance is certainty and only the one that knows the begining and the end can offer that. Ever wondered why alot of people have lived extremely longer than thier prognosis of 6 months? The word of God is alive and true. It holds the power of hope and reassurance. The reassurance that you are in a safe hands. The reassurance that death has been overcomed by the power of ressurection and its sure to take us all home someday to a place where no disease thrive. The peace and joy in the Lord that bring rest in the midst of rage.any assurance offered on the bases of experience is sure to fail as that which you fear can happen in as quick as 3months and not 10 years. That goes further to prove to you that any information gathered on the speculation of Mans common knowledge and experience is a Lie cause none can give an accurate prediction of that which is to happen and when. But there is only one truth and its in Jesus the hope of glory. I Place my trust and seek my assurance in Him and if you do too you shall find out that which He has to say about you and hold on stead fast to that and you will have rest. Rest is the end product of reassurance. Contracding information is an indication of confusion which proves the presence of the devil. Maybe am wrong but what if am right? What have we got to loose believing in the word of God if the medical world cant give us the answers we seek anyway? But What have we got to loose if the word of God is true and we dont believe? I also was told i might have stage 3a but what does it matter when the Lord says behold i have given you the power of life and death so choose life that you might live and not die. I choose life and no kidney disease can take me down. I have life and live above sickness and disease cause Jesus paid the price for that. I am aware of that now and my consciousness is alive. Its a reap off for me to keep paying for what my savior had paid for. We could never afford the price of redemption and until we realize the price has been paid by He who could afford it, the enemy will keep lying to us that we can never be free from disease and afflictions. The price has been paid and we just have to lay claims on our right to health. Its real people. Jesus is Lord.

Don't think anyone can predict how long you can be in any stage. It all depends on so many things. Do the best you can with diet and exercise. Continue to have blood and urine test to determine what dietary changes you need to make. Live life to the fullest each day. As time goes on you worry less, focus on today. Good luck in your journey.

You have a lot of good replies. What you are going through is something we all did when told of so called "CKD". You have to remember something. You can get on the internet and find such statistics as you found. You can also get on the internet and find statistics that someone else mentioned, and I too have seen somewhere, that less than 10% reach end stage and death from CKD. All these facts and figures do not report some basic things. Why are you labelled stage 3. Is it really some failure with the kidney or disease. Or are your Creatinine levels simply higher than the so called normal for other reasons. And you are looked up on a chart and called CKD. CKD is and can be a real and serious disease. No doubt. But I you go out in the street and randomly bring in 200 or 300 people and test them, you will find there are many who would end up on the chart as having CKD, who have no concept of having any disease. HAve nothing seriously wrong. Each of us are labelled CKD for different causes. Myself because I have just one kidney, so naturally my Creatinine levels are higher than "normal". But is my remaining kidney really failing or diseased? Who knows. Many have high levels because of other conditions, or infections, or medications, or blood pressure problems that are not controlled, or, or, or. Each case is different. Yes many have serious problems, are at stage 3 now because of it, and may pass within 10 years. But to think this is all, or even a majority, is a falsehood. Work with your doctors to determine what is causing your labelled stage 3 CKD. Is it high blood pressure? Then control it. Is it a tumor or growth, the get rid of it. Is it some other reason. Don't read studies on the internet. Work with our medical team. For every study you find about life expectancy, I can find you one that will say differently.

Apart from when I was first diagnosed with CKD and I have to go for my annual blood test, I forget most of the time that I have it. I have been watching my diet since being diagnosed with high blood pressure, so it has become a way of life.

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