Just a quick question for everyone.......We have had a lot of "newbies" on HealthUnlocked lately and it seems like everyone has been grouped together as having CKD. Just as everyone of us is unique there are many causes and types of kidney disease. Maybe a "newbie" can relate to you if you both have the same kidney disease!#@
So, what is your kidney disease? Do you know what caused it? Let us know your story.
I have FSGS (focal segmental glomerulosclerosis). My native kidneys are all scarred up inside. My cause of FSGS was from strep/nephritis that I had when I was a child. It was 40 years later that I was diagnosed with FSGS. I had a transplant in 1999.
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WYOAnne
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Chronic Kidney Disease is Chronic Kidney Disease. I believe you may be referring to a possible underlying cause. In my case, it's Diabetic Nephropathy with an assist from being Hypertensive. It doesn't change the fact that I have CKD. In addition to the precautions, I take as a patient with CKD I have to extra vigilant on my blood sugar/pressure issues. To further highlight my issues I have known for about 14+ months that I have CKD. For that same time, I have also been off all medications for T2D. My blood pressure is also under control and has been for the last 2 1/2 years. That doesn't mean that I can ignore those issues now and just deal with my CKD. For many, many years they were the underlying reasons that caused my GFR to decrease. I have to watch everything.
For those with genetic conditions, they still have CKD but must be aware of the underlying issues and watch them all. It's a balance but it's also CKD.
That would mean that many people are also unaware that the "underlying" issues which they knew about, were usually not aware that it could lead to CKD. That makes me one of those patients. I knew for years that I had Hypertension but although I tried many things to lower it, I never had a physician tell me that it could lead to CKD. Same thing for Diabetes. I had T2D for almost 17 years before I was told that it was a leading cause of my CKD. The reason I bring this up is to further point out that many doctors are failing their patients by not informing them of this possibility.
After speaking to many folks from other countries who face the same situations as we in the USA face with regard to being notified early enough of their complete health issues.
Even with years of this happening to me I never thought it would be kept from me and did nothing to research each specific illness. Once I was told I had CKD my desire to research it and its causes kicked into overdrive. I've spoken to all of my doctors and the consensus from them it's really up to the individual doctor to take the time and openly discuss all issues with their patients. Sadly, this does not occur with the frequency it should.
I think this is all subjective. I cannot get a physician to agree on anything. Most ignore my high serum creatinine blood labs and only now they are because I have a completely unrelated disease that requires that I keep good kidney function.
As far as I know, I am not diabetic. I've had borderline hypertension for about 10 years, but the ranges and classifications keep changing. Kidney disease IMO is bizarre in that it assumes from a 1 to 5 scale that it is a degenerative condition. The reality (from the literature - NOT the Internet nonsense Mr. Google comes up with) is that someone with Stage 3 CKD has a 1 in 6 chance of progressing to stage 5 and kidney failure. Those odds are revealing. Certainly at 65, my odds are better because my life expectancy is shorter.
Somewhat recently I have developed Stage II hypertension, which is now under being put under control. I am a skeptic as I started out as a biotechnology scientist years ago. What I see when looking at the literature on CKD is that most of the diagnosis is based on eGFR which is solely based on age and serum creatinine levels. (that is ridiculous!) When I started treatment for HT, the Drs finally (after at least 15 years) noticed that my creatinine was around 1.3 + or - depending on the lab and the full moon I guess. I checked back in my records and when I saw them next, I told them that I had creatinine levels of 1.2-1.38 consistently since 2003. My records do not go back farther. Only because I have been getting older does the GFR formula now make me in the mid to upper 50's. So, if you look at trends, my numbers for creatinine are the same. If I had CKD in 2003, then I am at a loss to figure out the cause. Then again an analysis which is only based on creatinine - which has been said to be unreliable - I have no idea of what I am looking at.
Even more strange is the fact that my other kidney related values were and still are completely normal. Two weeks ago my BUN was 12. Looking back, it has always been normal. None of this makes sense. Same is true for CO2 and serum proteins. If I am truly stage 3a - it's got to be based solely on my GFR. I have a recent (May 2018) urinalysis after an illness where I had no detectable protein or albumin (presumably dipstick method) - but I did have trace blood. When the urine was manually counted for blood it came to 0-2 RBC's and 0 lymphocytes - meaning they could not find anything to count. Other than that, I have had no abnormal urinalysis that I know of - if that is even abnormal.
The bottom line is that I do not know what to make of any of this. I presume I have CKD, but to what extent is not clear. I do know that some medications can artificially raise creatinine or interfere with the assay, some I have taken for years. So perhaps I will see problems in the next week, year or ten years. I don't know. No nephrologist will see me, and no physician will say I even have CKD, when obviously I have something. It seems that the medical community only looks at CKD until it is string them in the face. So underlying problems? Nothing major. I don't know when the "creatinine problem" started, but I do know that there is little else to substantiate it. That still doesn't mean there is not a problem.
The reason I care is that I have Chronic Lymphocytic Leukemia. It was diagnosed in mid 2018, but has likely been present for a couple of years prior. I am asymptomatic and so far been very lucky in that all prognostic indicators are good and I am asymptomatic. I could easily stay this way for well over a decade or more - possibly not. What is troubling is that should I need CLL treatment, my kidneys need to be in good working order. If I had any symptoms of CLL and needed treatment, poor kidney function would be a serious problem. So the bottom line is that I have no idea of what extent my CKD is - even though my life could depend on it. Crazy, huh?
Hi, I did not quit medicine. I have worked hard, controlled my "bad" habits, exercised daily and was determined to not have diabetes control my life. It took me 16 years. In June of 2017, my doctor told me I could stop taking my final medication to help control diabetes. (At one time I had been taking four different ones. Slowly, by getting my numbers under control I was told I could stop taking the last pill for T2D I was taking). I got a second opinion on that because while that was my goal all along the fact that I succeeded was nothing short of miraculous. At that time my A1c was 5.5.
Since then my A1c's have been 5.4, 5.3, 5.4 and just in June 5.3 again. I'm due again in late September for another one. I don't expect it to be much different. Also, in June of '17, I had lost 140+ pounds on a diet that was developed by a nutritionist. Also, at that time I was told that I was at Stage 3 CKD. I bike, hike and exercise every day. No set mileage or time. Weather permitting, I walk or bike on local trails, if the weather is not cooperative, I go to the local (wherever I happen to be since I travel around quite a bit) senior center or similar place and work indoors for a period of time. I take Saturday off during the most of the year and when I'm traveling I take off on travel days.
Since finding out I had CKD I haven't been able to lose much more weight But it doesn't change my routines for exercise. What has changed is that I have had to switch from the nutritionist recommended diet to a Renal Dietitian meal plan based on my numbers. I don't cheat as that would be counter-productive to my hoped-for end result, staying off dialysis for as long as possible.
Did you have surgery to help you lose weight or did you do it all on diet and exercise alone. Congratulations of getting off the T2D meds. That is my goal also.
All diet and exercise. It was suggested that I consider a gastric sleeve. I watched the video and that was my motivation to do it on my own. Even though I knew it would be difficult I nevertheless felt I had no real options. I've kept it off and lost an additional 16 pounds since finding out I had CKD.
Your success with weight loss is inspiring. I have lost 203 lbs in 5 years with several periods of slacking off. I could have reached my goal a long time ago if I had had your determination. In May, I had a massive piece of pannus (lower belly area) removed that hung past my knees. It weighed 48 lbs. Another 9 lbs from the area not hanging down. All dead fat tissue. I was very determined while home health therapies in place. Since then I have slacked off and can tell the difference. I share all this to say. Despite all this I am truly blessed to have all this and posts like yours give me back that drive. Many of you have shared that it is up to each person to learn, decide on your own best path and go forward. Thank you and the others for sharing your knowledge and insight.
Alot of hard work and taking care of yourself has been wonderful!
Kudos and support as the journey is not an easy one but a new road can be followed.
👍
Sixteen years of T2D and as many years with high blood pressure without accompanying symptoms (just higher than normal numbers) is what my doctors believe were the major underlying causes of my CKD diagnosis.
I have no idea why I have CKD3a. In fact, my blood tests pointed it out for 5 years before I picked it up and my GP had to apologise. But whilst the markers were described as CKD, the strap headline was basically, 'No Action Needed'.
I do not have any of the known precipitating causes. I am waiting for the next blood test, assumed in February, when I will ask to have a cause investigated. Only advice I have had is to stop it getting worse, so I drink more water and stop using salt.
I should love to know the cause - but would it make any difference?
Yes to knowing the cause. Maybe not in all cases, but CKD is often brought on by something else such as diabetes or hypertension or another disease such as Lupus, Psoriasis Arthritis and more. Also, certain drugs can cause issues such as the over use of OTC ibuprofen or supplements. Get those things under control, and the you can slow down the progression of CKD.
Thanks. I can rule out diabetes and hypertension. Did you mean to have a comma after psoriasis? Because I DO have osteoarthritis. Could that be it? I know about NSAIDs and have never taken it much and barely at all last ten years. Do you know what supplements are implicated? My husband is a supplement fan and passes various tablets on to me. Otherwise, what medicines?
A lot of what you ask - you should be asking your nephrologist. For me they did a kidney biopsy early on and found the cause. They also did an IVP kidney x-ray that ruled out for me, that my ckd was not from NSAID use.
Do not take any supplements without having them OK'd by your nephrologist.
Well, thank you WYOAnne. Trouble is, Stage 3 is regarded as being dealt with by the GP. Nephrologist for next stage. If I have to see GP (or just phone these days) about anything else I will raise this, but am very conscious I have been a frequent doctor visitor this year. Shouldn't matter but they are so overworked, it does. I wonder if you saw a nephrologist 'early on' (when? What stage?) when the NHS was in better shape?
Ya, early on my Primary Doc referred me to a nephrologist. Now, you also have to realize that this was 1992. I had my transplant in 1999. I was never told that I was in a certain stage of ckd. Today, I know that I was in Stage 3. A nephrologist can watch your labs better than a GP and knows better what is OK for your kidney health and what isn't. That goes for blood pressure meds and supplements.
Not sure where you live, but I have never had any issues with my health team. If you are not happy with your GP, you should switch doctors. You sound reluctant to call or visit because they are "overworked" - remember to be your own advocate. This is your health and your life and you need to have complete confidence in the doctor you have put in charge of it!
Thanks, WYOAnne. Not the first time I have been advised not to be reluctant. Will try to overcome it. 7 years between this stage and a transplant. That's frightening.
Don't be too worried......they do things really different today then they did in '92. Now there are "kidney diets" and there is the internet so you can find out all about CKD
I wanted to leave you with one last thing. When I was diagnosed in 1992, I had a close friend give me this poem. Ever since, it is something I try to live by. My close friend, by the way, was going to be tested on Oct 18th('99) to be my living donor. I was called for my transplant on Oct 15('99) and here I am almost 19 years later living well!
ATTITUDE
The longer I live, the more I realize the impact of attitude on life.
Attitude to me is more important than facts.
It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people say or think, or do.
It is more important than giftedness or skill.
It will make or break a company, a church, a home.
The remarkable thing is, we have a choice every day regarding the Attitude we will embrace for that day.
I am convinced that LIFE is 10% what happens to me and 90% how I react to it. Charles Swindoll
The most important thing I remember when I was admitted to the hospital for my transplant........a nurse said to me "you'll do great. You have the right attitude."
Hi WYOAnne, Mr_Kidney et al. Re the thread with regards to myself, I got a response from the live chat yesterday: "Thank you for contacting the National Kidney Foundation. Generally, the only dietary changes for early stage 3 CKD involves cutting back on sodium intake and red meat. Sodium is not just the salt shaker but the sodium in all foods. You should aim for no more than 1500- 2000 mg per day. Red meat can be consumed occasionally but not in large amounts." So that seems to answer the food question and I don't need to see a nephrologist. However, I also have worked out the cause: years of taking Clonazepam for a lifelong health condition. Upset it has had this effect as the only reason I knew I had CKD was from the blood test results, which started for the liver years ago as that is the main concern, but changed strangely to renal tests. So as I have been advised so many times on this site to see a dietician/nephrologist for the CKD3a, i now don't know what to do, but have written to my GP asking for a referral before I found the link from a medical source. Goodness knows what we can do about it.
Remember too that the answers on any website regarding diets are canned answers. They are generic at best. That's why you have to bring your labs from the past 6-12 months with you to a renal dietitian. When the RD looks over your labs and health history, they tailor your kidney-friendly meal plan to you specifically. I have T2D and Hypertension along with CKD. Someone else with the same health issues may have different options in their suggested meal plan than I do. As I have repeatedly stated... There is no "one-size-fits-all" meal plan for everyone with CKD.
Additionally, many of us have bemoaned the fact that we weren't made aware of having CKD early enough. The whole purpose of knowing early is to make changes to your diet, exercise, medications, et. al. to delay ESRD for as long as possible. The fact that the medical and insurance industries have not yet fully realized the importance of early notification to patients is a sad state regardless of where (country) the patient lives. The long-term benefits of seeing an RD are to make significant lifestyle changes and improve their overall health and by doing so will dramatically lower future medical costs. Just cutting out/back sodium and lowering protein intake is not necessarily enough to stay healthy. You have to watch your potassium, phosphorous, calcium, magnesium, exercise, hydration, and medications and make adjustments after each series of blood/urine labs. Usually, just a phone call or an e-mail is enough for me to notify the RD of any changes to my numbers. Of course, this is just my opinion and I could be wrong.
Ever the expert, Mr_Kidney. I shall print this out and have it in my hand when my GP rings, having backed down mentally after the NKF reply. What do you think of self-test strips too?
If you are referring to the Glucose Monitoring systems that are now available they are (to my knowledge) for those who are insulin dependent. I'm not in need of that constant monitoring. My doctors have me doing one daily stick in the morning (fasting) and they monitor that with my monthly results sent to them and my A1c's every three months. As long as I don't have any unexplained spikes and my A1c's are where they are they know I have it under control.
Just remember that while an excellent and top-notch organization, NKF refers people to their site. When I was an Ambassador for them on this site I was told to limit my postings to reputable sites. Their idea of reputable sites couldn't be explained to my satisfaction and I continue to use all research-based information I come across online.
Using only one site for information is like looking through a cardboard toilet tissue roll while you are on a ship looking out for the icebergs. It's rather limiting. I'll continue to use a wide angle lens in my camera and my monocular (binoculars for those with central vision in both eyes).
I saw these and there must be very many more. Your comment about NKF and relying on one site only is point taken, a good point. The connection of CKD and clonazepam came from this site, although others had referred to it vaguely. It fits the bill for the cause for me. Partly as I have no other predisposing factors, but mainly because of the length of time I have taken this and the nature of it; but, as you say elsewhere, sometimes you have to make a considered choice about taking something which you know to be kidney-unfriendly:
I can see the value of doing a home test for CKD if insurance coverage was not in the cards but, as an example, for me, my coverage does cover it and I'm more likely to go with the physicians' lab results. I'm not familiar with all of the ins and outs of the British medical coverage but I do understand that it can be problematic for some. All I can reiterate is that personally, I would not rely on something I had taken over a lab result. Especially a lab with a lengthy positive track record and the trust of my personal physicians.
Have you asked your physician about weaning yourself off clonazepam and beginning a different drug without the pitfalls of your current one?
Oh I quite agree Mr_Kidney on the pre-eminence of NHS lab tests. Re clonazepam I am awaiting the response (heck: I may not get one!) from my GP, but like you had to, I am now weighing up the pros and cons and would almost certainly drop the dosage but not eliminate it. As for other drugs, they are too terrible to contemplate, and this is the right one for the condition and the PLMD experienced. I have no chance of theses disorders going away, as they are genetic, but have found yet another medical paper to say they might! Information overload now. But I would rather take a small kidney risk than live in fear without some protection from Clonazepam.
I would not take any supplements without a physicians approval. If you have already put together a Care Team of your doctors, check with all of them. If you need to check any prescribed medications use drugs.com to see if any are counter-productive. Hope that helps.
That is an extraordinary website. Thank you Mr Kidney. Juggling medicines is truly a fine art. So much help from everybody; I have decided to write to my GP and seek more guidance, as previously advised on this site and especially by you. All I have ever had is a few minutes' on the phone. A letter is easier than asking for a telephone appointment, and more effective.
Remember too, as you look at medicines, what may work for one person may not work for you, or vice versa. We are all different and how we react to certain medications. Good luck getting in touch with your GP. Be strong!! Be your own advocate!
Well stated Bassetmommer. There can be many causes of CKD, including organic and the other reasons you state. It does show up more as we age, as do other conditions, in my opinion.
I have Membraneous Nephropathy and am physically A-Symptomatic and work hard to keep myself as healthy as possible.
The consensus at this point is that it is idiopathic and possibly connected to an autoimmune issue as I have had controlled Hashimotos Hypo Thyroid disease since 2011.
In July 2016, I was fortunate that my doctor decided blankly to test me for proteinuria along with glucose which he did annually due to family history. At that time I was spilling 103 with normal kidney function. Stress was questioned as I had just lost my mom after a battle with cancer.
The test was repeated in November - by then my spilling had increased to 888. I was then referred to a nephrologist who found traces of hematuria in the urine as well.
Quite a shock...
My January CT scan as well as a Cystoscopy which were both negative and I was put on watch as I have low to low normal BP and no edema.
At that point I began researching kidney disorders and diet as all the nephrologist suggested was to continue to eat heart healthy.
I increased my diet to more fresh vegetables and kidney friendly fruits as well as a close watch on my sodium, potassium and phosphorous intakes. I also changed to a plant based, low protein intake.
By February my proteinuria was slowly climbing and the nephrologist put me on 2.5 mg of Lisinopril for the proteinuria and to protect the kidneys.
In late March 2017, after a second opinion as to what this was, my proteinuria hit 2.0 and a biopsy identified my problem.
Since my spilling has continued to climb and in February of 2018 I was put on 3mg of Tacrolomus along with 20mg of Lisinopril which lowered the proteinuria, with RBC side effects and low albumin which he refused to address or stick to his own plan.
In June, I sought another opinion who felt Rixuximab would be a better treatment as many cases of MN have had successful remission with it.
He removed the Tacrolimus and did many lab tests prior and post. My spilling is now around 2.2 which is too low to medicate. My GFR and creatinine levels are excellent, but my albumin tends to run slightly low.
I recently had an issue of low blood pressure as well as dehydration as the Nephrology Team who put me on the Tacrolimus told me to limit fluids to 2 sport bottles of water due to low blood sodium. The doctor who removed the Tacrolimus saw me twice for 15 minutes a visit with no time for questions.
My GP has been amazing as she lowered the lisinopril and is helping me seek good nephrology care. My creatinine and GFR remain normal and the electrolytes at my last tests were in the normal range as well.
In the meantime, I eat healthily, drink a reasonable amount of water and keep a positive attitude that I remain at low to moderate risk for progression as we seek a nephrologist who will work with both my GP and myself.
I have IGA Nephropathy. I've told my long story many times here so I will keep it brief. They feel it is caused by a poor immune system and food intolerances. It was verified by doing a biopsy after I began having hematuria and proteinuria. If I keep my food intolerances and my immune health under control, so far I am able to keep my GFR stable. I did develop hypertension after I was diagnosed, but put on a very low dose of Lisinopril which is controlling my blood pressure and proteinuria. I still have mild hematuria.
It was caused by having psoriatic arthritis PsA. Many people think that PsA affects only your joints, which is totally untrue. It affects everything. So my kidneys have scarring. My kidneys created very large stones also due to the PsA. PsA makes your blood have very high uric acid which is what caused the stones. The kidneys also were very affected by the combination of very strong drugs that I had to take for the PsA. The last issue that dropped my GFR was a change in my prescription for diabetes (T2D). I have T2D from the PsA. My glucose was not being controlled and my sugar was too high for too long and it dropped my GFR four points. Just recently, being on vacation and not being careful with my eating, I dropped 2 points because my sugar was high for only a week. Have to keep my sugar under control.
By simply changing my diet and losing some weight, I was able to turn around my labs. I actually had brought my GFR up a point. Diet changes are a lifestyle change and have to be for life.
I was diagnosed with Polycystic Kidney Disease (PKD) at age 21. I also had high blood pressure. I then acquired diabetes. I started dialysis at age 44 (2002) and had both diseased kidneys removed in 2006. I've never had a transplant. It will soon be 17 years on dialysis, 16 on home hemodialysis. Blessings
I had angioplasties to put stents in my heart after a heart attack. They knew I was at risk but went ahead and used iodine contrast dye and my gfr went from 78 to 18. I have now struggled to get it up to 28.
I'm curious if you don't mind answering. Since you were at Stage 1 of CKD prior to that procedure, were you told that the iodine contrast dye could possibly place you into ESRD? Did you even know about the risk factor at all or did the doctors make the decision for you?
I didnt have ANY idea un til after the event, now I know.. They knew I was dehydrated. Knew I was female . Was over 60. Etc etc. Knew I was allergic/sensitive to many many medications. Didnt care.
I have had NO help since. Not even been able to see a renal dietician as they dont have one any more!!! Just as well I can use the internet or Id be dead now..Lol.
I understand that the UK health insurance can be an issue but since you are in Stage 4 of CKD are there no other options available to you? I know it sounds heartless but if you have no other alternatives you may have to go it alone for the time being. If you have your last years worth of labs you can determine where you are at and but back on things like sodium, protein, potassium, phosphorous, and calcium, increase your exercise regimen and watch all medications, including over the counter supplements. What other suggestions have others made for you to stay healthy and avoid ESRD?
Yes keeping eye on the labs carefully and cutting out or careful with those you say. Just to drink only 1ltr a day, watch food, excercise if poss. Only take diuretic for edema once a week if poss. Thats about all really. Im doing the best I can. Just relying on me and all the info I can glean as there is no-one else to help!
Health ins would cost an impossible 1300 a month with heart and kidney probs!!
Hang in there. You'll find many here including a number of your fellow countrymen who might be able to chime in and help you with ideas and information to make your journey easier.
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