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!)