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.

Book: Coping with Kidney Disease: A 12-Step Treatment Program to Help You Avoid Dialysis

I've just read the following book and recommend it for anyone with kidney disease, or susceptability to kidney disease:
Coping with Kidney Disease: A 12-Step Treatment Program to Help You Avoid Dialysis

The book distills the 45 years of kidney experience of the doctor who wrote it and is written in a strictly factual style regarding what has shown to be useful and what not. The basic message I got from the book is "we're still fairly clueless about the kidneys but a low protein diet, with amino-acid supplements, is the only thing that seems to conclusively slow or stop the progress of the disease". What I found interesting was the clear explanations of the different kinds of disease and the significance of the different tests and treatment options. Despite having read just about everything about kidneys on the Internet, I found the book provided some very useful information and clarifications.

In my particular case, the good news is that I'm doing everything the book recommends with the exception of monitoring serum carbonate levels to check for acidosis (excesive acidity in the body). In the case of acidosis, the recomended treatment is sodium bicarbonate, a treatment I had been trying previously.

If you have an iPhone (I borrowed my wife's) you can buy the kindle (electronic) version of the book from just about anywhere in the world.

Doctor's opinion

The nephrologist reviewed my latest test results on the 10th of October and said he was very pleased with my progress. He said that the movements of various indicators suggest that the kidney function has improved and that this is having a beneficial effect on the rest of my health.

Based on my urea levels, he said my protein consumption had increased but could still increase a bit further. The only things in my diet that he recommended restricting were salt (completely) and proteins (to a certain level). Personally I have decided to stay off gluten until my test results have stablized and then try eating it again to see if there is any change.

Calcium supplements were prescribed as my calcium level is borderline low and this is the probable cause of occasional cramping. So now between medicines and supplements, I'm taking 6 pills every morning... starting to feel like a junkie!

The nephrologist said that in the majority of cases people with my level of kidney function manage to live out the normal lives without requiring dialysis or transplants. Maybe he was trying to make me feel optimistic but in my personal case at least I am determined that his prognosis will be correct!

Blood pressure
After a period of highish blood pressure about a month ago, my pressure levels have been in the 120/75 range lately, which is excellent as high blood pressure is one of the things that further damages kidneys.

Generic Drugs
I discovered, somewhat belatedly, that the generic version of Cozaar (Losartan) costs about 30% of the branded product (meaning $0.50 a pill instead of $1.50 USD), so I'll be purchasing the product from now on.

Body Weight
My current body weight at 76kg is about 10kg lighter than when I started restricting my diet six months ago. Although, at 1.82m (6"), this makes my pretty skinny the doctor said I was at my theoretical ideal weight but if I wanted to fatten up I could eat more carbohydrates. I'm quite happy at my current weight but I'm making a bit of an effort to eat more protein to ensure that my diet is not causing any muscle shrinkage.

Test results - progress at last!

The test results the new nephrologist ordered show the first significant improvement in kidney I've seen since my initial diagnosis en February. Perhaps the results a just a favorable "blip", just as the previous results were unfavorable "blips", but nonetheless they cheered me up a lot and gave confidence to my belief that improvement is possible.

Serum Creatinine
To put things in context, the results aren't all that different from those of February but after months of serum creatinine levels in the 2.3 to 2.5mg/dl range, it was great to get a 2.0mg/dl result ("normal" is 0.8 to 1.5 mg/dl, and "dialysis" is something like 7mg/dl).

Creatinine Clearance
The Creatinine Clearance Rate (CCR) showed a dramatic improvement. The Creatinine Clearance Rate measures the ability of the kidneys to process creatinine (a substance produced by the muscles) and it is used as an aproximation for overall kidney function as it is fairly easy to measure (just collect all your urine in a bottle for 24 hours - simple!)

In April tests showed a CCR of 33ml/min (normal is 61 to 166), which can roughly be translated as "30% of normal kidney function"

My current test shows a CCR of 52.5ml/min ! I haven't consulted with the nephrologist yet to see what his interpretation of the results is but to me it seems like a big improvement!

Proteinuria
Another improvement was in the amount of protein in my urine. The last 24 hour test in April showed leakage of 1485mg of albumin (a protein) into my urine (and the test prior to that showed 1881mg of total proteins). Normal is between 42 and 225mg.

The current test shows 989mg of albumin leakage in 24 hours. This could just be due to less protein consumption, will have to see what the nephrologist says.

Other
The rest of the measurements were pretty much the same as ever, slightly anemic but not too far from normal.

Theories for the improvement
As I said at the beginning, perhaps there is no particular reason for the improvement and it is just a "blip". However, if the improvement came about as a result of my actions it is probably due to one (or more) of the following:

Elimination of Gluten. I completely eliminated gluten from my diet on 15-Jul-09. Although my test on 13-Aug-09 showed no noticable improvement perhaps it is something that took time to have an effect. Ironically I was actually planning to starting eating gluten again if this test showed no improvement. Now I guess I'll stick it out until at least the next test to see if my current results are stable.

Sodium Bicarbonate. On the advice of a couple of people and some studies, I took sodium bicarbonate between 13-Aug-09 and 10-Sep-09. I stopped taking it as I felt that it may be raising my blood pressure (I now think it was actually lack of sleep that was raising my blood pressure). Incidentally, my current blood test showed slightly elevated sodium levels.

Magnetized Water. A month ago, somebody came selling me magnetized water as the perfect solution for regenerating kidney tissue. I don't really believe in such things but thought it was worth a try and so have been drinking it (have drunk 30L so far). Guess I'll keep it up for a while, 'just in case'.

Prayer. About a week ago I read Dale Carnegie's book "How to stop worrying and start living". I enjoyed the book and for some reason found the section on prayer quite compelling (even though I don't follow any organized religion). I believe that chronic is diseased is caused by the brain and that part of me actually wants to be ill (to get sympathy, I guess) and it occurred to me that fervent prayer may be a way of reprogramming the brain with a strong affirmation of a desire NOT to be ill, so I have been trying at night and in the mornings to "pray" to be cured. I actually believe that this prayer is the main reason for my improved results. One cause of doubt is the speed of the change (only a week) but I guess miracles are traditionally reported as being sudden, so why not?!

Kidney News website allkidney.com

Dr. Roger Smith MBBS, DM., the Webmaster of All kidney News, says:

"We provide new on topics such as chronic kidney disease, kidney stones and dialysis. All articles are evidence based and written for patients."

New Nephrologist

I went to see a new nephrologist (kidney expert). Although I didn't get any big insights from the visit, his advice seemed more in line with my own research than the previous nephrologist so it was good to confirm this.

A quick summary of what the nephrologist said:

• At my stage of kidney disease (aproximately 30% kidney function), maintaining function is considered an advance as the tendency is for function to reduce.

• Kidney function is maintained through three main levers:

1. Diet: low salt and protein, to avoid stressing the kidneys.
2. Blood pressure.
3. Can't remember the third thing... (pathetic, I know!)
   

• That in the majority of cases it was possible to maintain, or even improve kidney function of people at my stage.

• That Cozaar (losartan) is considered a kidney protector drug, so even if it doesn't lower blood pressure it is worth taking.

• That my blood test results indicate that I should be eating more protein.

• That the main thing to avoid is salt. Protein-rich foods like milk, eggs, meat, seafood, nuts, beans, and anything else can (and should) be eaten in moderation provided they contain no salt. The previous nephrologist had banned these items.

• That ketosteril (the amino acid supplement I'm taking) is very beneficial to the kidneys but is very expensive (tell me about it!).

• That it was very difficult to tell what caused the kidney problem.
  

The doctor ordered another 24 urine test (fun, fun, fun...) and prescribed a special vitamin supplement: Autrin