Test results - the complete history

I finally had the brainwave of putting all my test results into a spreadsheet to make it easier to view changes over time.

You can view them here if you so desire:

https://docs.google.com/spreadsheet/pub?hl=en_US&hl=en_US&key=0AhX6YZKS2qpCdFpObVlQQXNmMjBfT19kUUdxUHAxaEE&output=html

The progress points are:

• Serum Creatinine back to same level of 18 months ago.
• Proteinuria (protein in urine) way down.
• Increased Serum Hemoglobin (reduction of anemia)
• Blood pressure reduced.

The "lack of progress" points are:

• Serum Creatinine and Creatinine Clearance unchanged (i.e. no improvement in kidney function)
• Uric Acid high (being controlled by Alopurinol)

After experimenting with many different things, I believe the main factors responsible for the progress are:

Healthy, balanced diet
I ate pretty healthily before but I've improved some areas and feel like I could improve some more. After researching and experimenting, my personal advice is to eat whatever foods you feel like in their natural form. This means avoiding anything with added sugar or salt (which I believe trick you into thinking the food is better for you than it really is). I recommend experimenting with removing wheat from your diet for a month to see if you notice any improvements.

Sleep
I try to make sure I get just enough of it.

Happiness
Possibly your mental state is the most important factor in your wellness, so I recommend trying to only do things that make you feel good and avoid things that make you feel bad. Again, I recommend experimenting to see what really makes you feel good and what doesn't. It may not be what you expect. Sleep is probably very important for feeling happy as any parent of small children will tell you...

Test results

Just did another 'full-blown' set of lab tests.

The results are basically the same as those of 7 months ago, which can be considered good news as they show no decline in kidney function.

The general prognosis for Chronic Kidney Disease is a gradual worsening of the condition until dialysis, so avoiding disimprovement can be considered progress.

Here is a summary of the results:
* Serum Creatinine 2.0mg/dL (same as it was when my condition was discovered 18 months ago, and lower than the high of 2.5mg/dL of about a year ago)

* Creatine Clearance is calculated at 41mL/min. This can roughly be interpreted as meaning my kidneys are functioning at 35% of normal, which is asymptomatic. Below ~15%, however, and death (or Dialysis/Transplant) is not far away... (and frankly, provided my children are grown, I think death may be preferable to dialysis or a transplant)

* Protein in 24-hour urine 375mg, about the same as the last test and way down from 1,800mg when my condition was discovered. I understand that this is important as because proteins leaking through the kidneys may damage them further. Normal is less than 225mg.

* Uric Acid 7.6 mg/dL. This should be kept below 7 according to my first nephrologist. Taking Alopurinol controls it pretty easily but I'd prefer to be controling it naturally through diet. Will have to research this a bit.

Next Steps:
* I've been taking Co-enzyme Q10 for 3 months and this doesn't seem to have had any effect so I'll stop that.

* I'll probably continue taking a half a teaspoon of bicarbonate of soda every day. I'm not sure if it's helping but it doesn't seem to be doing any harm and it's cheap and easy to take.

* I think I need to work harder with my diet. I have a little more body fat than I'd like yet I'm often hungry, which suggests I'm not eating the nutrients my body requires, however I'm not sure what I should be eating (and it's frustrating not being able to eat many of the things I crave because of protein/salt/gluten restrictions).

* I'm tempted to dedicate 15-30 minutes every day to "mental programming" activities for a month to see if it helps.

Sonic Healing

Apparently listening to this "harmonic overtone" style of singing can help your kidneys regenerate and generally help you to be healthy:

http://www.sonic-healing.com/store/index.php?act=viewProd&productId=61

The program can be downloaded but costs $99 USD. If they offered a money back guarantee I might try it!

Herbal Remedy

This herbal remedy claims to improve creatinine levels and proteinuria. I'm skeptical but I may give it a go at some point if I don't see any improvement from the other things I'm trying:

http://www.getwellnatural.com/chronic-kidney-disease.aspx

Update and reflections

Lab results

Creatinine
My latest creatinine tests show no change at 2.1mg/dL. This level has remained constant since about january.

Ultrasound
An ultrasound scan revealed:

1. Three of my four kidney stones have disappeared (without specific treatment). This is a relief as it's something less to worry about. My first nephrologist had prescribed what I felt was an aggresive course of 3 different drugs to try and clear the stones, and I decided against taking them (I stopped consulting that nephrologist). The remaining stone is 6mm and apparently it's position is favorable for "passing" (although I wasn't aware of passing the others, one of which was about 8mm).
2. There is now good definition corticomedullary differentiation (previous it was poor). I'm not sure of the significance of this but it's supposedly a good sign.
3. My kidneys are now smaller than previously: 8.2cm and 9.1cm (compared to 9.9 and 10.6cm previously, and "normal" kidney size of around 10 to 12cm). The ultrasound doctor mentioned that the kidneys were no longer inflamed and 'back to normal', so maybe lack of inflamation is the reason for the smaller size.
4. The kidneys still show "moderate to severe chronic inflamatory changes".
   

Reflections
When I started this blog I was hoping to be able to document the spontaneous recovery of my kidneys by drawing on the healing power of the universe or something. While this hasn't happened (perhaps because I couldn't get into any kind of meditation), I have at least halted the progress of the disease and in the field of chronic kidney disease this is considered a victory.

Based on all the test results, the suggestion is that at some point in my life something was causing damage to my kidneys and now it no longer is. Exactly what that "something" was is what caused it to go away is very hard to tell. Maybe not too important as I think the same cure probably applies to various causes:

The "Cure" (based on the personal, non medical, experience of one person)

1. Become healthy. The basics of health are the same for everyone (exercise, eat in moderation, don't be overweight, don't smoke or drink in excess) but I strongly believe that different people have very different needs (and this explains why there is so much conflicting advice out there). Try and listen to your own body and figure out what's right for you. I found that juice-fasting for a week was a great way to "reset" my body's food cravings and to figure out what my body really needs. Just for reference, my diet is quite simple and consists principally of: Avocados, White Rice, Tuna Fish, Amaranto, Raisins, Almonds, Pecans, Bananas, Beans, Peas, Mushrooms, Corn Tortillas, Potatoes, White Fish, Shrimps, Grape Juice, Pineapple Juice, Grapefruit Juice, Eggs, Seaweed, Lettuce. I specifically avoid meat and gluten, and moderate my consumption of milk products, refined sugar and salt.
2. Get plenty of sleep. I discovered my blood pressure becomes elevated if I don't get a good nights sleep. I recommend sleeping as much as your body needs. In my case about 8 hours a night.
3. Enjoy life! I believe that genuinely happy people are naturally healthy as they instinctively make the right choices for their bodies. Worrying about the future doesn't help you today and today may be your last...
   

Gluten?
In my particular case, I have a suspicion that an intolerance to either gluten or wheat could be responsible for my kidney damage. The reason I suspect this is that:

• I discovered that removing bread from my diet resolved long time problem I've had with "balls of gas" in my intestines. These actually felt like hard lumps in my belly. This suggests that my intestines at least are affected by gluten and it isn't a complete stretch to imagine that the problem is an auto-immune one where the body's own response to detecting gluten (or some other component of wheat) in the blood causes damage to its own organs.
• The gas problem first occurred at the same time that high levels of protein were first detected in my urine.

It is a bit annoying not knowing for sure if wheat is the problem, as I LOVE the taste of bread but I love my children more so I'm going to play it save and avoid it as much as possible.

The future
Short of achieving regeneration of my kidneys (something medical science believes to be impossible) I don't think there's too much more I can do for them, so my experiments will probably reduce (and with them, the amount of blood tests and blog updates).

Another test. No change

As three values from my last test results were suspiciously identical to the previous test my doctor suggested changing labs. An unexpected benefit of this is that the lab he recommended is about half the price of the one I'd been going to AND they send the results by e-mail (this is mind-warping efficiency for a Mexican business!).

Unfortunately the second lab gave exactly the same results as my last two tests:

Serum Creatinine 2.1mg/dL (normal is less than 1.5mg/dl)

This means that my kidney function isn't deteriorating (something I should be very grateful for) but it isn't getting better either. This is kind of consistent with the prevalent medical view that kidney tissue can't heal itself. Damn those doctors! I want a miracle!!

I paid another visit to my Nephrologist a few weeks ago and asked him all my questions. His responses were:

• A biopsy isn't very useful when there is chronic (permanent) damage to the kidney's as the treatment is the same regardless of the cause.


• It would be worth getting another ultrasound to see if there is any physical change in the kidneys. I've been curious to do this.


• To test the blood bicarbonate level, and hence determine if treatment with sodium bicarbonate would be helpful, requieres an arterial blood sample and is not very common. It is a treatment that is considered at more advanced stages of disease.


• It is possible that an intolerance to wheat caused the damage to the kidneys. Unfortunately he didn't give me any pointers about how to investigate this further. This is frustrating as obviously I don't want to eat wheat if it may cause further damage but on the other hand it is a major sacrifice to avoid it for no good reason!


• He has seen cases of kidney function improving, and has even seen patients come OFF of dialysis, even though there is no medical explanation for this.

I watched an interesting presentation about kidney disease to a Medical Audience on YouTube:

http://www.youtube.com/watch?v=4KC2CEowZSk

The basic message I got from the video is that:

1. All kidneys with scarred kidney tissue continue to lose function over time at a constant rate.

2. The rate of decline varies a LOT from individual to individual.

3. ARB drugs (like Losartan which I'm taking) signifcantly helped reduce further scarring in lab rats (at least I think that´s what the result was - the presentation got a bit complex!)

So... it seems that the only sensible course of action is to do the few things that are known to reduce the rate of decline (low protein diet, normal blood pressure) and try and have as much fun as possible in whatever time I have left!

Test results 1 year on

I've just had more blood tests and another 24-hour urine tests. I was disappointed to find the results showed no significant improvement, although my doctors tell me I should be happy that there is no worsening of the condition:

Serum creatinine: 2.1 mg/dl

The calculated creatinine clearance rate (an estimate of kidney function) was a lot worse than my previous test showing 43 ml/min compared to 53 ml/min previously. This is the same rate as measured in March 2009 and better than my worst measurement of 33 ml/min in April. Something tells me that the test results vary a lot...

A positive sign was that amount of albumine released into my urine over 24 hours has continued to reduce significantly: 335 mg/day in these tests, 989 mg/day in October 2009, and 1485 mg/day in April 2009.

My blood appears to be healthier, showing less anemia (hemoglobin 13.3 g/dl, normal is 14 - 18) and almost "normal" in most other measures. This could be the result of (prescribed) multi-vitamin I've been taking, or the liter of fruit/vegetable juice I drink a day.

My serum Uric Acid levels have shot up. Not sure what the cause of this is. It's easily controlable by taking Alopurinol but it would be nice to know what causes it to be high in the first place (instead of just supressing it...)

Next steps:

I learned something very interesting about genes recently: apparently our DNA (contained in every cell in the body) is more than just a set of instructions, it is actually a logical program causing certain things to happen when certain conditions are met. This is very interesting as it suggests that the body has the ability to grow new kidney cells but this may never happen because there is no apparent way for an adult to activate the appropriate genetic program.

The convential view, therefore, is that any damage done to my kidneys is done and the best I can hope for is avoid further damage (which is difficult if no one knows what was causing the damage in the first place!)

Miracle believers on the other hand, believe (even if they don't see it this way) that the body can somehow be persuaded (through prayer, positive thinking, etc.) to produce the appropriate chemical signals to activate cell production/reparation. I personally believe this to be possible but it also seems to be hard work with a low probability of success!

Therefore my list of things to try is:

Physical:

- Try drinking magnetized water again. I was doing this for a couple months prior to my "big" improvement when serum creatinine dropped from 2.3 to 2.0 mg/dl. The problem is that my supplier has closed down so I'd have to buy the filtration device. I think it costs about $600 USD and I don't really believe in it yet!

- Start taking ketosteril amino-acid supplements again. These are very expensive (about $600 USD a month) and I'm not sure they're beneficial as I continued taking them after I reached serum creatinine of 2.0 mg/dl and in my next test the level had risen slightly to 2.1 mg/dl.

Metaphysical:

- Ritually dedicate a few minutes every day to consciously "programming" my body for healthy kidneys.

- Try Reiki (an "energy" treatment technique). Haven't found a local practicioner yet.