A personal, non-medical, blog chronicling the experiences and learnings of a regular, healthy, person diagnosed with chronic kidney disease (CKD) in 2009 at age 36. Feel free to participate with your own experiences and remember that works or fails for me won't necessarily be right for you. Please don't take anything here as medical advice and always consult a doctor.
Wednesday, September 4, 2024
Serum creatinine back to 2.0 mg / dL. Why?
I don't think my kidney function has improved but this result may at least mean it's not worsening as much as I thought. My current theories for the results are:
1. I have been exercising less lately. Perhaps the elevated creatinine levels were due to doing more exercise.
2. Inaccurate test results!
The next time I test, I'll try doing more exercise beforehand to see how much that seems to impact the results.
Current lifestyle/diet: No meat or chicken, low cheese/milk (some yogurt), low wheat, oats+berries+chia+olive oil for breakfast, fish a few of times a month, commonly eat: lentils, vegetables, fruits, potatos, rice, corn tortillas, peanuts,
Wednesday, June 30, 2021
2021 Serum Creatinine rising
Since 2016 my serum creatinine has been rising at a surprisingly constant rate (see graph), suggesting a progressively declining kidney function, reaching a peak of 2.7mg/dL (Estimated GPR 26 mL/min/1.73m2, stage IV) 6 weeks ago (13-May-2021).
Shocked and depressed at this decline I met with a new nephrologist to see what she recommends to reduce the rate of decline. She didn't really offer any new advice but ordered more tests which I did on 23-Jun-2021. She also weighed me, 78kg, which is lighter than I expected (I'm 1.82m tall). I have been exercising almost daily the last year or so, so I guess I've lost a few kilos of body fat.
The tests on 23-Jun-2021 showed a creatine level of 2.4 ml/dL which is a change
in the right direction. The things I did between the two last tests which may
have impacted the result were:
- Watch my diet carefully, eating very few animal
proteins and especially avoiding cheese (high salt).
- Meditate with afirmations
in the form of questions like "Why is my serum creatinine at 1.8?" (I didn't hit
that target obviously), "Why do my kidneys work so well?", "Why are my kidneys
no longer inflammed?", etc.
I also tested for Bicarbonate and Vitamin D. Both were within normal range, though the Vitamin D was on the low side and I certainly have the symptons of Vitamin D deficiency (fatigue).
Tuesday, May 12, 2020
Chronic Kidney Disease Research Community
Monday, June 10, 2019
2019 Blood test results - more kidney function degradation :(
Wednesday, February 13, 2019
Kidney degradation not inevitable?
The following article says a recent study shows that while kidney function tends to decline with age in more developed societies, this is not necessarily the case in less developed societies. That is, it seems like there may be something (or many things) about our "advanced" lifestyle which causes kidney degradation with age. No clues as to what that might be yet but adopting a more "primitive" diet (less processed food, more fruits and vegetables) certainly seems like it would probably benefit the kidneys.
https://www.economist.com/science-and-technology/2019/02/13/loss-of-kidney-function-in-old-age-is-not-inevitableSince being diagnosed with chronic kidney disease (CKD) almost 10 years ago I have fortunately so far managed to avoid further measurable kidney degradation. My diet has basically been:
- Relatively small amounts of animal proteins (no beef/pork/chicken/etc., fish/seafood maybe twice a month, eggs once week, yogurt and cheese a couple of times a week, no milk).
- Limited wheat (I found that wheat seems to cause me abdominal swelling).
- Lots of fruit, vegetales and nuts (bananas, avocados, broccoli, carrots, apples, almonds, unsalted peanuts, beetroot, lettuce, tomato, beans, etc.).
- Low sugar and salt (no added salt in cooking. Avoid high salt foods).
- A certain amount of starchy foods every day: Rice, corn, oatmeal, sweet potatoes, potatoes.
Sunday, July 15, 2018
Surefire way to reduce blood pressure without drugs
Thursday, July 12, 2018
The dangers of Internet diagnosis
Friday, February 23, 2018
2018 test results - slight degradation
https://docs.google.com/spreadsheets/d/1G0WEsPxngX-lorVAL3c-jqkqrzy5wqud9iEqOHPB4Qc/edit#gid=0
My blood creatinine is at 2.3mg/dL which apparently isn't a clinically significant increase over the average 2.0mg/dL I've had since diagnosis in 2009, however combined with some other factors, explained below, I feel it does represent a slight decline in my kidney function and a sign I should make more of an effort to look after myself. This level of creatinine gives an estimated GFR (kidney filtration rate) of 33mL/min/1.73m2. Normal filtration is over 100. Filtration of less than 15 requires dialysis. Hoping I never get to that point.
Over the last few years I've noticed poor circulation in my legs, with red spots appearing on my lower legs and larger stains around the ankles (see photo).
I'm not sure how related this is to the kidney disease but for a while I used to sleep with my legs raised and it seemed to help. For the last few months however:
a) I've been doing less exercise as my bicycle (previously my main form of transportation) was stolen from my home and I was reluctant to buy another in case it suffered the same fate.
b) I kind of forgot about sleeping with my legs raised.
c) My blood pressure has tended to be elevated.
The reduced excercise has added a lump of fat on my belly and then a week ago I started feeling a strong pain inside one of my lower legs which seemed to fit the symptoms of some sort of blood clot. Ultrasounds have confirmed probable "deep vein thrombosis" and a specialist has put me on a (expensive) blood thinning drug for two weeks and given me some very stylish knee length compression socks to wear.
I've taken all this as yet another wake-up call to focus more on my health and making an effort to eat only healthy food and get lots of exercise and sleep. Regarding diet, I've been eating wheat over the last year or so, thinking that perhaps it wasn't particularly problematic. However given my worsening kidney function, I'm going to try eliminating it again for six months and see if any improvement is registered. I'll also be watching my consumption of salty foods, like cheese, which I've gradually been eating more of than previously. Stay tuned...
Thursday, May 4, 2017
Blood test results 2017
The rest of the results were fairly stable and normal or close to normal, with the exception of Uric Acid at 8.9mg/dL (normal 7.2mg/dL) but this has been up and down since diagnosis in 2009, ranging from 4.7 to 9.2mg/dL.
Full lab test history:
https://docs.google.com/spreadsheets/d/1G0WEsPxngX-lorVAL3c-jqkqrzy5wqud9iEqOHPB4Qc/edit#gid=0
Blood pressure, with treatment, has been around 125/75 during the last year.
So, all in all, things seem to be stable and I'll continue with the same regime:
- Losartan 50mg / day for blood pressure. Without treatment I would probably be around 130/90.
- No meat. Occasional fish and seafood (maybe once or twice a month).
- Occasional eggs, cheese and yogurt (around once a week).
- Lots of fruit.
- Fair amount of vegetables, rice, maize (corn), potatoes, sweet potatoes, beans, avocado, coconut, nuts.
- Fair amount of cacao, mostly in Kicao bars (I work for this company).
- Very little wheat or pure milk (not sure if this is relevant to kidney fucntion or not but it seems to have helped my intestines).
Monday, November 7, 2016
Blog Nephrologist Dr. Veeraish Chauhan
http://www.kidneydoctorbradenton.org/2013/06/can-certain-herbal-medications-treat.html
Friday, September 23, 2016
Stinging Nettle Seed Extract
http://jonathantreasure.com/evidence-research-testimonials-case-history/case-histories/nettle-seed-kidney-function/
The extract he used was the following:
http://www.herbalist-alchemist.com/item/Stinging-Nettle-Seed-NTS--683
Has anyone tried this? Sounds like it would be worth a shot...
Friday, April 29, 2016
Monday, March 21, 2016
http://nutritionfacts.org/video/treating-chronic-kidney-disease-with-food/?utm_content=bufferc8bce&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer
I have had a basically vegetarian diet since childhood and unfortunately it didn't stop me developing kidney disease but it may well be a factor in maintaining a steady level of kidney function loss since diagnosis 7 years ago.
Friday, January 29, 2016
The following video explains how animal proteins increase acid load compared to plant proteins and this seems to be damaging to kidneys. Interesting. The message, as always, is "eat more fruit and vegetables"!
http://nutritionfacts.org/video/protein-source-an-acid-test-for-kidney-function/
Saturday, January 16, 2016
Test results 2016
Diet
- Relatively low protein (protein is believed to damage kidney nephrons). In my particular case this means no meat; fish about once or twice a months; eggs once or twice a week; dairy a few times a week; tofu a couple of times a month; rice and beans quite often, etc.
- Very little sugar or salt (my theory is that these encourage unhealthy eating by making undesirable foods seem tempting).
- Very little wheat. Around the time of my diagnosis with kidney disease I would often have large, hard, balls of gas in my intestines (these were visible on an ultrasound but the doctor I saw at the time couldn't think of any reason for them so just told me to chill out more). Avoiding wheat and/or too many simple carbohydrates seems to keep the problem at bay.
- Light breakfast: Bananas and almonds usually.
- Snacks of fruit and nuts (especially pure cacao).
- Filling lunch (dinner): Usually a small amount of protein, some carbs, vegetables and salad. Avocado and beetroot feature quite often.
- Light supper: Sometimes amaranth and yogurt, sometimes humus and carrots, sometimes an apple.
Exercise
Sleep
Meditation
Tuesday, September 2, 2014
Blood test results 2014
The good news: no change
The tests show no signs of kidney function degradation. Serum creatinine is 2.0mg/dL, exactly what it was when I was diagnosed with Chronic Kidney Disease over five years ago. All other parameters are pretty consistent with the results obtained over the last five years and are within, or close to, the normal healthy range.This either means that:
a) My hard work watching my diet and trying to live a healthy life is paying off and protecting my kidneys from further damage, or,
b) None of my lifestyle changes have made any difference whatsoever!
Truthfully I don't know which statement is correct but there are other benefits to being healthy and I'm convinced that in the long run it will help me extend my life. In any case my dietary choices are more about moderation and avoidance rather than total exclusion... though I haven't had any pizza in a really, really, really long time...
View lab results (5 year history)
GFR: Glomerular Filtration Rate
Kidney function is measured by their GFR, basically how much filtering power they have. Normal is over 90mls/min/1.73m2 and "failure" (inability to filter sufficient toxins from the blood) is 15mls/min/1.73m2.Previously I've a few creatinine clearance tests to estimate my GFR. These tests require collecting ones urine over a 24 hour period so the lab can measure how much creatinine has been filtered from the blood, compared to the level remaining in the blood, and use this to estimate the GFR. Unfortunately it's apparently not all that accurate and my own lab tests have shown a lot of variance: as high as 52.5 and as low as 30.0, which frankly is a bit an emotional roller coaster ride. Given the questionable utility of the results and the inconvenience and cost of the process, I decided to give it a miss.
This interesting article suggests that estimates based on serum creatinine levels adjusted for body weight, etc. have proved to be more accurate than creatinine clearance tests and I believe it given the that my serum creatinine level has been fairly constant: 1.8mg/dL to 2.4mg/dL. Variations in the serum creatinine level are probably due to variations in protein intake. Unfortunately they say the estimation formulas may not work well in cases where the subject differs significantly from the population used to develop them, giving the example of a vegetarian diet. I don't eat any meat or chicken but I do it fish and eggs, so hopefully the formulas will be somewhat accurate.
In my case the MDRD calculator gives a worst case estimate of GFR of 30mls/min/1.73m2, which is consistent with the creatinine clearance tests.
Apparently GFR tends to decrease by around 1mls/min/1.73m2 every year. If this happened to me it would imply that I have around 15 years of healthy life left before reaching kidney failure (15mls/min/1.73m2). Hopefully I can beat the "average" and extend my mileage by looking after my body.
Lifestyle
As a reference, my current lifestyle, which may or may not be optimal, is as follows:Exercise:
- Sedentary office job 8 to 10 hours a day. I try to get up and move around during the day however to avoid sitting for long periods.
- Cycle everywhere. About 40 minutes a day.
- Occasional moderate exercise (body weight exercises, swimming, etc.). I should probably do more of this.
No meat or chicken. Occasional fish and eggs. No gluten (I feel I may have sensitivity to gluten, though I'm not 100% sure). Very limited consumption of products with added sugar and salt. Limited starch, mostly rice and potatoes. Lots of nuts (almonds, pecans, cacao), fruits and vegetables.
Sleep: Try to get enough sleep so I wake naturally shortly after dawn. For me this is around 8 hours.
Medications
I've been taking 50mg/dL of Losartan (Cozaar), an ARB, fairly steadly since diagnosis of CKD. This was initially prescribed to reduce my blood pressure. A month ago I fasted for a day as a kind of "body reset" and found that my blood pressure dropped to around 100/60 so I stopped taking the medication. Since then I have been checking every day and my blood pressure has remained below 120/70 even without medication (or further fasting). I will probably start taking the medicine again at some point, as the experts seem to think that it is beneficial to conserving kidney function for reasons other than blood pressure reduction.Tuesday, August 12, 2014
Living with Reduced Kidney Function
Tuesday, July 23, 2013
Dr McGregor is a very amusing doctor who recommends a plant based diet based on the health benefits discovered by mainstream medical research. He has a little bit to say about kidneys here but I recommend you view his general presentations like this one as they're pretty amusing and informative.
Personally his presentations have inspired me to limit my animal protein intake. Let's see how it goes.
Tuesday, April 30, 2013
The good news is that nothing much has changed. My current blood creatinine level, the most common marker of kidney function, is 2.1mg/dL. The lowest reading I've had was 1.8mg/dL while the highest reading was 2.4mg/dL. The doctors say that a significant change is 1mg/dL, so probably my kidney function is about the same as when I was first diagnosed four years ago. This is pretty good because I've seen some progression graphs that show people going from my level to failure in around seven years!
Creatinine clearance is a supposedly more accurate measure of kidney function, as it directly measures how much creatinine gets filtered out of your blood and into your urine, but my results have been quite variable. My best result as been 52ml/min (which corresponds to around 50% of normal kidney function) and my worst has been 33ml/min (about 30% of normal). My current result was 37ml/min.
The amount of protein in the urine is also around the same as previous readings: 815mg in 24 hours. 300mg is the upper "normal" limit. The lowest I've had is around 335mg and the highest 1485mg.
One interesting change was an increase hemoglobin to 14g/dL, which takes me out of the anaemic range (less than 13g) for pretty much the first time. Not sure what caused that. Possibly increased cacao, bean and cabbage consumption (I've been experimenting with homemade fermented cabbage) which contain iron.
My current thinking on surviving chronic kidney disease
Current medical opinion is that damaged kidneys can't be repaired and their function worsens over time. I haven't, unfortunately, found any evidence to contradict the essence of this opinion but there does seem to be evidence that the decline in kidney function can be slowed (or even stopped) by adopting healthy lifestyle habits, which to me mean:
- Avoid all refined sugar and salt. Apart from being bad in themselves, I believe these ingredients trick your body into thinking what you're eating is more nutricious than it really is.
- Limit the amount of starchy foods you eat. Supposedly these turn into sugar pretty quickly in your body which may be a problem if you have excess body fat or at risk of diabetes.
- Eat mostly plants. Here is a very entertaining and informative presentation about the reduction in health risks that vegans apparently enjoy.
- Experiment with your diet to find out if any foods seem to have negative effects on your well-being, e.g. milk, wheat, coffee, etc.
- Do enough exercise to keep yourself in shape. High intensity training is in fashion right now and has the advantage that it doesn't take much time out of your day.
- Learn to be happy. Figure out what makes you happy and do more of that. If you really think about it, you'll probably find that nothing else matters too much. On the subject of happiness, I found The Happiness Hypothesis: Finding Modern Truth in Ancient Wisdom
to be a very interesting analysis of ancient wisdom from the viewpoint of current psychology research.
Tuesday, June 26, 2012
Progress report
Comments on this blog
Thanks to all the people who've taken the time to comment on this blog. I have just noticed I had almost 2 years of comments pending my approval. These have now been posted and I will try to answer them.
Background information and lab test results
For anyone interested in the technical details, I have a 40 year old male of British/Dutch/Austrian ancestry living in on the caribbean coast of Mexico. Height 1.82m, current weight ~76kg (previously 85kg). You can review my complete lab test result history here:
https://docs.google.com/spreadsheet/pub?key=0AhX6YZKS2qpCdFpObVlQQXNmMjBfT19kUUdxUHAxaEE&output=html
In April I consulted with a nephrologist in England, Dr. Rowe, and also took blood tests. The UK test results were consistent with all my previous test results done in Mexico. The nephrolgoist provided the following information:
- Natural decline: The natural tendency of a healthy kidney is for a reduction in function with age of around 5 to 10mL/min per decade, so based on my current estimated GFR (glomular filtration rate) of 30 to 40mL/min, he would expect "renal replacement therapy" (kidney transplant) to be necessary in 10 to 20 years, as a GFR of 15mL/min is the level at which toxins are no longer adecuately removed from the body.
- Ultrasounds: Ultrasounds don't provide good diagnostic information for kidney disease and the measurements are highly variable, depending on the operator, etc. I have had three ultrasounds (one a year) but in his opinión they can't be used to observe any changes, just to confirm the presence of damage (scar tissue). He also doubted that the number of kidney stones had changed as no stones have been passed (the first ultrasound showed 4 stones, the most recent only 2).
- Diet: In his opinion diet options should be based on reducing the kidneys workload and for this reason salt should be avoided as much as possible as well as excessive protein. He noted that protein reduction may reduce the measured serum creatinine levels but this doesn't necessarily indicated improveed kidney function, it may just indicate less creatinine in the blood due to less protein consumed.
- Blood pressure: He believes strict blood pressure control to be very important and recommends continuing to take 50mg/day of losartan.
My research and experiences to date have reduced my expectations of finding a "miracle cure". Even though kidney tissue does not normally regenerate I had originally hoped to somehow (through some "alternative" therapy) find a way to turn on the gene responsible for kidney growth and achieve miraculous regeneration of the damaged tissue. However, I have found little evidence of this type of miracle, even among people involved in advanced spirtual/meditive practices. My focus, therefore, has shifted away from looking for a cure and more on accepting the cards I have been dealt and playing them the best I can. This means striving to be as healthy as possible and trying to enjoy as much as possible whatever time I have left. More on this below.
Patient involvementI think it's very important for anyone with any kind of disease to get involved and learn about the disease and your body, and not just blindly follow your doctor's orders. I have consulted with three Nephrologists, as well as reading a wide range of materiales, and there have been significant differences in their treatment recomendations. This doesn't mean any of them are "wrong" but the reality is that a doctor is just a human being and the state of medical science is advancing all the time. However well trained your doctor is, and however much experience he has, he has never experienced what it's like to be you and live inside your body. He also doesn't have as much time or interest to think about your case as much as you can.
Probably the best defence against any disease is maintaining your body in as healthy condition as possible. I always considered myself healthy before but now I am much more so. After much research and reading of conflicting opinions and experimentation, I believe the pillars of health are:
- Sleep. Make sure you get enough of it and wake naturally every day.
- Happiness. Make sure you enjoy what you do every day.
- Diet. There are so many conflicting messages regarding diet that the area has become a veritable minefield. After looking at the evidence of healthy people living on an extremely wide variety of diets, my personal philosophy is to eat whatever you feel like provided it contains no added sweeteners or salt, as I believe these substances trick your body into believing a particular food is nutritious regardless of its real benefits or otherwise to the body. I also think there is a lot to be said for eating foods as close to their natural form as possible. My personal diet contains nuts, fruits, vegetables, yoghurt, some rice, some corn, some low-salt cheese, some fish/shrimps, no wheat, no meat.
- Excercise. There is also lots of conflicting advice about types of excersise but I think everybody agrees that at least 30 minutes a day of some sort of excercise is important for your health. In my case excercise is limited to walking at least 30 minutes a day and maybe once a week doing something more streneous but I feel like I would benefit from doing more! Yoga is probably an excelent option for people suffering from chronic disease as it may help your whole body (and mind) to work better.
- Immune system. I've read that a large part of your immune system resides in your gut (intestines) and therefore to have a healthy immune system you need to have a healthy intestinal tract. If you are intolerance to a certain food (e.g. gluten or wheat) its consumption may cause damage or inflammation of your intestines and weaken your immune system. It could be coincidence but since avoiding wheat, and being careful about my diet in general, I have not missed a single day of work due to illness. I have certainly been 'sick' and been aware of having a virus but have only experienced mild symptoms. Previously I would usually miss one or two days a year due to colds or flu (at least that's my perception).
Most experts believe that avoiding high blood pressure is a very important for conserving kidney function.
At the time of my diagnosis my blood pressure was in the 140/90 range (and often higher). For the last few months it has been in the 120/70 range. I was prescribed losartan (cozaar) but didn't notice any effect from this until I made changes in my diet. Without medication my blood pressure would be in the 130/80 range and taking 50mg of losartan a day keeps it in the 120/70 range (often less). It's hard to be very specific as exactly what foods increase or decrease blood pressure but I would recommend trying the following to see what works for you:
- Avoid/reduce foods with added sugar
- Avoid/reduce foods with added salt (cheese, for example)
- Avoid/reduce starchy grains.
- Avoid excess fruit consumption (after eating 4 bananas one morning I noticed a spike in my blood pressure. Since then I have cut back on bananas and enjoyed low blood pressure).
- Unsalted peanuts with the skin (I eat a fair amount of these and some sources say the skin contains something which reduces blood pressure).
Diuretics
There are any number of natural cures for kidney problems, e.g. dandelion tea, or things that are "good for kidneys" that are really just diuretics that excercise your kidneys by making them generate more urine than normal. Some of these cures talk about cleaning your kidneys and removing the 'sludge' but I have never read anything about kidney sludge in any serious medical literature. It is possible that some diuretics may be good for some kidney conditions, or for healthy kidneys, or for passing kidney stones, but I am unaware of any benefit for chronically damaged kidneys.
That's all folks
That's everything I have for you now. The bad news is that if you have damaged kidneys there is no known way of repairing them. The good news is that it may be possible to prevent further damange if you make an effort to live a healthy life. This blog has been written to share my experiences with other people with kidney problems in case it helps them in anyway. If you want to ask me a question please leave a comment and I will respond (eventually!)

