I’m seeing the trend! Like me, so many of us with CKD 3 weren’t told of their CKD, the diagnosis was minimized, or counseling/resources/treatment strategies weren’t provided. Why is this such a frequent occurrence? Do the docs feel powerless in the face of a progressive illness so don’t empower us to try to slow the illness? Do they lack training and resources? Do they not empathize with with the shock, fear and grief that goes with receiving such bad news? Are there docs in the forum who can speak to this? Has anyone had this conversation with their providers? What have you learned?
Trying to give docs the benefit of the doubt…. - Kidney Disease
Trying to give docs the benefit of the doubt….
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MyStarr
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orangecity41NKF Ambassador
I had a Primary Doctor who would not recognize level 3 as needing remediation. I changed Doctors , who diagnosed me with CKD, and prescribed a diet. You have to be proactive for yourself.
So true! And this forum has been very helpful.
I disagree that there is little that can be done for CKD stage 3. I was in stage 3b and was able to reverse it to stage 2 by diet, exercise, and drinking water. My doctor advised me every step of the way. Watch what you eat, take all your meds, drink lots of water, and most importantly, don’t get your knickers in a wad. God bless!
My Primary Doctor, that I changed to, prescribed a CKD diet which I stay on and has helped me greatly. Fortunately my Doctors are monitoring my CKD. Thanks for sharing your experience.
I agree 100% I also had 58 ckd 3 and reversed also diet, exercise and I watch the meds I put in my system and yes with God help Amen.
I was reading about CKD, and one thing that surprised me was an excerpt that I read. If I am remembering it correctly, it said back in the 1980s what is now considered by many to be a kidney problem, wasn't considered to be a kidney problem. Somehow or another, the standards changed since then. Maybe they realised it is best to tackle the problem early before it becomes too bad. It is interesting then that some doctors may have the earlier mindset.
Yes, kidney function is known to decline with age - it's been known for quite some time and now it's being looked into again. Here's a link that explains it rather simply. If you do a search, you'll find more recent reports with more intricate language. It's probably why kidney transplant centers generally don't transplant "old" kidneys into younger individuals, and so on. It's always good though to extend your "expiry date" as far out as possible. ncbi.nlm.nih.gov/pmc/articl...
That's very interesting, Joe100. I've wondered about that, because when I was younger we never heard about kidney disease or failure in my neighborhood. Do you suppose we're being a little 'too alarmed'?
It is hard not to consider the possibility. Medicine has become a major industry. I mean, didn't most people rely on a house doctor in many places in the past? And wasn't it about 10 or 15 years ago, that there was talk of screening all the children in schools, I believe starting at age six. Perhaps I am misremembering it, but I believe this caused an uproar and there was talk of over-medicating when this issue came up.
So, yeah, it does make one wonder. And yes, when I read that information that you are referring to, it did make me think that at one time, some of these "issues" were not looked upon as an issue. Now perhaps I misread it or have misremembered it, but I think it stayed in my memory because I was surprised.
On the other hand, being more aware, as long as it isn't outright alarm, might be better for our health choices.
It's probably best to live life happily and not worry unnecessarily.
BassetmommerNKF Ambassador
The issue is at stage 3, there was little that could be done. There were little to no medications for early CKD until recently. And most of the newer drugs are for folks with diabetes. Just recently, there are some new ones out not that are not diabetic. One in Finerenone. So at stage 3 and even 4, there was little to be done other than diet change and medication review. Providers stay in their lanes. They can recommend a dietician, but rarely will provide diet planning. If you are not on other medications, then .....there is nothing to change.
As far as relating to your shock....its your shock. They see 10 to 20 patients a day and there has to be some distancing for a provider. Otherwise, they would not last as a provider. It is not that they are not concerned, they are desensitized. I spent years working with clinicians and providers and they actually are taught this desensitizing in their education. Think about it,..... would you really want a doctor to fall apart?? I don't. And it is not that they are not concerned about your situation, there is just not much to do about it at Stage 3. And CKD, unlike other diseases, any treatment is basically the patient changing their lifestyle.
If your doctor is not providing what you need, look first to yourself. Do you come prepared to your visits with questions? Have you asked out right if your doctor can recommend some mental health support? Have you asked for a dietician referral? Have you asked if there are any medications or clinical trials you can participate in?
I am not sure what you expect from your doctor. But the bottom line is if you are not happy with them, find another doctor.
Thank you for your perspectives. I’m am indeed fortunate to have a provider with a high enough emotional intelligence to be caring without becoming traumatized in the process, possessing enough leadership skills to direct me towards some great resources without becoming dismissive, defensive and disengaged, and secure enough to collaborate as a partner in this journey rather than condescend. I am sincerely grateful and only wish that all of those on this forum could find the same kind of mature and compassionate caring, subject expertise and thoughtful guidance that I have. Too often this doesn’t seem to be the case. As I said, I’m trying to give the providers the benefit of the doubt. No doubt we can all do better.
so very well said....I have seen some pretty lousy docs and some very good ones.Bottom line it is up to us to review our labs.. researh and ask appropriate questions
I find it odd, too, the most primary care doctors are not alerted to seeing kidney disease when lab results come back with low GFRs. It is so consistent that it had to stem from their universal medical training. Now that life style changes especially diet has shown to slow the progression, let's hope medical schools are alerted and start teaching that stuff.
BTW, I don't think everyone has the empathy we'd like to see in our doctors and I guess burn out does occur. But, for those of us who have experienced those caring individuals, be blessed for that experience.
Having a doctor who is caring doesn't make him a good doctor. I had a very caring doctor once. He misdiagnosed me, told me to go home and take it easy. Thankfully I took him at his word, I retired and because of that I had to change insurance companies and also had to change doctors. So, I got diagnosed correctly. That was about 20 years ago. It was CKD but COPD.
Sorry. I should have expanded "caring" to mean care for us properly and treat us appropriately and understand how we feel when we get diagnosed. I've had a few doctors not necessarily empathic, but who did a very good job with my issues. It's just nicer if they're there for you when you're worried.
Actually yes...once I was aware of the problem...at stage 3a, I wanted to work with diet/meds and asked for access to a dietician, but was refused and when I ask questions, such as I did last week, about protein in my urine, I was told all my tests we normal...so then the next question begged to be asked...if its all normal, how do I have ckd?! Mental and emotional support was 6 sessions of cbt...which is not much good for lifetime chronic conditions
I had similar experience and thankfully the Doctor practice I changed to, did diagnose me and put me on a CKD diet. It has helped me greatly. Thanks for your good explanation.
So with you guys talking about things we can do to help ourselves, I just learned something that I haven't heard before. You would probably know if it's true: instead of drinking water quickly, for instance a glass full at a time, we should sip all day long. Otherwise our kidneys would be overwhelmed. I had been gulping down my water and consequently feeling so bloated I was never comfortable. I think I was doing harm. I hope I explained this okay, and someone can answer this for me.
Bassetmommer, I appreciate your views on this. I would still say that when I questioned my doctor at least a year ago about the red flags, I said, aren't you concerned about any of this, and she shook her head no. It would have been good if she had said, are you watching your salt intake, water intake, etc, for the health of your kidneys? That way I would have begun taking more precautions early on, and yes I do believe I just may have done myself some good without doing the freaking out that some doctors dread from their patients. And to ask for recommendations regarding my mental health, I'm not sure I see your reasoning. Just some points I wanted to make. I don't think I need to change my doctor, because otherwise I find her to be very good, but I do have an appointment with a nephrologist and dietician.
I suspect there's people of all ages on this forum. However, if one is getting along in years, there's considerable controversy about the role of age in determining kidney health too. Current standards simply state that an eGFR below 60 is an issue for everyone no matter how old. Some feel this is untrue as kidneys slowly lose function over time as do our eyes, hair, bones, etc. So most doctors look at a lot of variables, including age, before sounding the alarm.
Yes find that true, that age plays into it, and some Doctors feel that our functions decline as we age and level 3 is what they expect age related. (had a Geriatric Doctor who thought that way). IMO it is about quality of life as one ages. I have more energy and feel better since on CKD diet. Thankful have a Urologist practice, that is monitoring CKD too, as likely my CKD caused by that condition. Yes being proactive as we age is important.
I completely agree. It's all about how you feel and your labs. Unfortunately, no one is leaving this world alive, but it's good to push one's expiration date as far down the road as possible. And diet modifications and medications can certainly help those whose labs or physicals show out-of-range values, in that regard. In my opinion, good medical oversight is vital, since age makes us more fragile. Diets, such as the renal diet with it's electrolyte focus, can impact other organs. It simply worries me when people are told to do things without fully knowing their history. We're all different. And yes, the kidney and urinary tract are definitely linked. My hubby too has issues with that too. We just gotta keep on keeping on!
Agree. I am glad my CKD diet prescribed took into consideration my other blood work results. Doctor had to tweak it as time went on.
in reply to Darlenia
I read that your kidneys start losing 1% function each year starting at age 45.
Darlenia in reply to
I think that's pretty accurate. I remember a friend of mine, a registered nurse, announcing that her mom had reached her 100th birthday with an unbelievably low kidney function. Interestingly, her mom died peacefully shortly afterwards in her sleep when she refused to replace the battery in her pacemaker. So her heart stopped before her kidneys did. I suspect most of our organs don't go much beyond the century mark. I know my body isn't acting like it's 20 years old now. Lol.
doc said to lose weight, I’m heading to my basement stairs for a pre bed workout
Mosaic of stairs
We’ll done!
many docs don’t know to look for it.
That said, there are meds you can start in stage 3 if appropriate. I started meds when I was 3a, I also incorporated diet changes and was more proactive about an exercise routine.
As for the shock, I find docs don’t really deal with the emotional or mental side, their job is the physical symptoms. However, the shock, grief, and fear are real. It’s our job to ask for help. It’s not fair, but it’s the way it is. Hopefully there are people you feel comfortable talking to about your needs and asking for that kind of support. #stopthestigma
Thank you.
My previous doctor told me but didn't give me any suggestions on lifestyle other than to hydrate and get exercise. I'm starting to wonder if the insurance companies have a hand in the lack of intervention in the early stages.
Good question…..
It could be also lack of knowledge and/or experience with CKD by the Doctors.
I'm stage 3b. My kidney disease is Fibrillary Glomerulonephritis, an autoimmune kidney disease.. There are others out there with an autoimmune kidney disease which differs from "regular kidney disease" so can't lump all kidney disease patients together. They have different treatments and different symptoms. And there are treatments for Stage 1 and Stage 2.. My primary care physician refused to treat me for anything related to my kidney disease, after i was diagnosed by the Mayo 6 years ago, actually told me this.. He said he had heard of it, but had never learned about it in medical school and didn't know anything about it.. I was his patient 5 years before being diagnosed. I believe it was a combination of his ego, his fear of medical malpractice and his unwillingness to do any research and learn about the disease and its easy to get paid from insurance to see patients with colds. I have seen many physicians about my disease over the past 6 years.. I have learned that you must advocate for yourself and don't stop until you find a doctor or doctors that listen to you and work as a team.. You must know when your body feels different.. These doctors are run by insurance companies.. If you do not complain of symptoms, there is no way to justify a test. Without symptoms the insurance companies are not paying.. So, check your blood pressure...High blood pressure is first sign of possible kidney issues...Be your own advocate.
My GP is just that a General Practicioner...not a specialist is anything. I don't expect her to be either. When I get my labs I work with her to determine if a specialist is needed, such as when my thyroid went crazy and I had no idea what was happening.
I think most people go to the doc either once a year of when they are feeling ill. At which point they either ignore the labs or get whatever med is needed for the illness. And most people unless they get a bad report where their life is now threatened will not change lifestyles.
When I was doing ultraruns I wanted to know if they affected my labs so after each one I had labs done and went over the results with my GP, and tracked on a spreadsheet. She's not a sports doc so we looked at liver enzymes and I noticed something called eGFR was trending down so she suggested a referral to a nephrologist. The first was useless but the one I have now I much better.
Again I went through and explained my running, etc and he listened and suggested several tests and recommended to cut way back on my training. So if your GP won't or can't work with you and if you get referred to a specialist make sure you work with them also.
It's a 2 way street, you have to work with your docs, understand what the labs means and advocate for yourself. If your docs won't or can't then either educate them or find new ones.
For me, prior to my diagnosis..I trusted my primary physician to do what's best for me and my body...I trusted him to get me to a specialist if he thought i needed one.. I put all my trust in my doctor... When he saw my blood pressure was high, he gave me a script of blood pressure meds and sent me on my way... because high blood pressure is common... so I complied... fast forward 5 years later when i saw visible blood in my urine I realized my doctor was not looking out for me and i was not advocating for myself. My primary doctor never ran urine tests on me ever!
For myself, I was distraught, and reminded my doctor that I had called to her attention at least a year ago some disturbing red flags, and said, 'you clearly said you were not concerned about them'. Her reply was, 'that's because you always said you felt good'. Well many people feel fine even when they have early stages of CKD. But I let her off the hook with that one. That was a weak excuse, given that I had been showing her all the swelling and 'pads' of swelling on my legs. Plus a few more symptoms. So no, I do not give her the benefit of the doubt. However, I am not mad at her and I'm still going to her, but I'm being a better self-advocate, and being angry/upset with anyone creates stress for me. I now have an appointment with a nephrologist, and hopefully a nutritionist.
A weak excuse indeed but the grace you are showing is very admirable.
Thank you, MyStarr. Your encouragement means a lot.
There isn't much money to be made in prevention.
so true.
Oh me, that's such a scary thought, but all too often true.
I've seen a primary doctor that doesn't care for your medical problems and would never do the right thing for what's wrong with you! It's time to find a new primary!!!
She did save me a lot of leg pain by taking me off a certain drug because of potassium. Other things too, so I'm not ready to rush out the door just yet. But my CKD will be in the hands of someone else.
well now with the widespread use of electronic records we are able to see for ourselves when we have issues and ask questions.
Yes, and I love that, bubbles53. I don't understand it all, but at least it prompts me to ask good questions.
they will usually give you the normal values next to your own numbers.
I've been up on this soap box more than once, but I feel the need to repeat myself, again. "CKD" is not a disease in and of itself. The term "CKD", in my mind, refers to a condition, and not a diagnosis. My CKD is a result of Polycystic Kidney Disease. ADPKD is my diagnosis.
I'm requesting that anyone posting the types of questions that OP has, refers to the actual diagnosis in order for us to grasp what may or may not be a result of their illness. After several years of progression, my kidneys have grown and displaced my other organs, causing me to look pregnant! That may not be true of someone with a different diagnosis.
All I'm asking is, Please, be clear.
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