Tuesday, June 26, 2012

Progress report

It's now been three and a half years since I was diagnosed with Chronic Kidney Disease (CKD) and began my quest to cure myself. Although I have not achieved the dramatic recovery I was hoping for my condition appears to be generally stable and this can be considered an acheivement given that the tendency for CKD patients is to gradually lose kidney function until replacement or death becomes necessary. Here are my findings and tips to date so that others may benefit from them (none of which should be construed as medical advice!):

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:

UK consultation
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 opiniĆ³n 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.
No miracle cure
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.

Staying healthy
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).
Blood pressure
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).
Sodium Bicarbonate
There a few e-mails going around touting sodium bicarbonate (baking soda) as a 'cure-all' for all sorts of things. They say that the one of the signs of a 'quack' treatment is if it claims to work for lots of different ailments and this has certainly been my experience in general. I have experimented with taking half a spoon of sodium bicarbonate daily (mixed with water and a little grape juice) for extended periods with no obvious impact (positive or negative). Lately I have stopped taking it regularly but I do still take it now and again if I feel like it. It could be my imagination but I feel it like it helps ward off common colds.

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!)


  1. Wow - good news for you and I love how thoroughly you have scoured and found answers that so many people neglect. Well done, friend.

  2. Hi, my name is Alex Alves and i live in Brazil. I have CKD and i am in stage 4 close to 5. I found out about my disease a couple years ago when i used to live in the US. I'm not doing dialysis yet but i'm afraid that i am knocking on the door. In my last exams my GFR was about 17mL/min, with was a month ago and i am looking for all kind of information that i can use to slow as much as possible my dialysis treatment. I found out your blog on the internet and would like to share information with you since it seams that you already have done lots of research. It was very nice to have someone like you sharing your experiences. Thanks for that. I'm looking forward in knowing learn as much as possible from you.

    1. Thanks for your comment. Unfortunately I'm not an expert so all I can share is what reputable information I can find on the web and my own personal experience (which may be different from yours).

  3. Marie Benz, MD said...

    You might be interested in the perspective of nephrology and kidney disease researchers available on http://www.Hemodialysis.com.

    Best regards,

    Marie Benz, MD

  4. Hello, i have found your blog extrememly helpful, we have just found out that my boyfriend has CKD and we are in the initial stages of learning about how advanced it is. He has type 1 diabetes that he manages quite well. How difficult were your dietary changes? Any suggestions? I know im so scared for him just because its all new. THanks!

    1. My only suggestion is to research reputable, scientific sources (ignore anything that talks about being "good for kidneys" as this is likely to just be some herb with diuretic effects and probably not particularly helpful) and experiment.

  5. for chronic kidney disease additional u must also prevent high potassium rich fruits and vegetables, especially bananas, nuts and potatoes.

    1. If your serum potassium levels are normal I'm not aware that there is any known benefit to restricting your consumption?

  6. Hi,

    You might want to check out Dr. Robert Morse.

    He has a very interesting view of health and he would say that he could totally fix your kidneys using a raw food diet and herbal formals.

    Best wishes.

  7. Thankyou for sharing your situation. I have finally accepted I have ckd and my diet is pretty much like yours. I noticed that every time I eat brussel sprouts my bp drops! So now I try to eat them @ least once a day.

    Do you eat any oils?

    1. Hi. That's an interesting observation about brussell sprouts, I'll have to try that. Yes, I eat coconut oil (cooking), olive oil (in humus) and avocados (which are rich in oil).

  8. Thank you for your blog. I have read that Hawthorne Berry Extract helps to lower blood pressure, taken after each meal, 3 x per day. I am wondering if a nutritious heart food like hawthorne would help lower blood pressure and keep your good health, rather than blood pressure drugs which are heart-damaging pharmaceutical? Perhaps you have looked into this?

    1. Hi. I would love to stop taking medications. Currently I just take losartan which drops my blood pressure from around 135/80 to 120/70, and supposedly has other beneficial effects on the kidneys by relaxing the nephrons (or something). I haven't heard about Hawthorne Berry Extract (and don't have access it) so can't comment on its effectiveness.

  9. This comment has been removed by the author.

  10. CORDYSEPS do a search, some amazing findings. Best wishes..

  11. Hii.. my father is 67 yrs old..
    his GFR is 30..
    his left kidney is functioning 69% and right one is 31%.
    Critinine is 2.2
    Doc said it seems to be Chronic kidney disease.
    All life he had uric acid and had several stones in kidney, which removed few days back. These above results are tested after stones removal.
    I would like to ask.. if there anything serious?

  12. I think you should ask your doctor if your father's condition is serious.

  13. Hi,

    I have recently been diagnosed with some form of chronic kidney disease and found you blog a great source of information during this tough time. I am at stage 1 as my GFR is normal but I have significant Protienuria and Hematura.

    I just wondered if you have ever had a kidney biopsy as this has been recommended as my next step and I am fairly concerned about it. I am only 31 so this has come as a real shock

    Thanks again for this great source of information and I hope everything remains steady with your blood tests/kidney function.

  14. Dear Anonymous. No, I have not had a biopsy. This was recommended by 1 of the 3 nephrologists I have consulted (one of the other ones said it wouldn't provide useful treatment information). I've read that a biopsy only causes a little pain for a few days afterwards.

    You are lucky to have discovered the problem at an early stage. If you take steps now to live a healthy lifestyle you have a good chance of avoiding much progression. Good luck.

  15. I have been following your blog from last 2 years. Pretty inspirational for other CKD patients. I was diagnosed as a renal patient in 2013 but hopeful that I can keep myself fit as much as I can.