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

Reversal of Proteinuric Renal Disease

I have come across a few articles which claim that proteinuric renal disease (which is what I have) can be halted, and the effects reversed, by taking certain ACE inhibitors or ARBs. These medicines are usually taken to control high blood pressure but are apparently independently beneficial to the kidneys:
http://cme.medscape.com/viewarticle/577765%3Bmeddomainjsession=K8ttKyDhrwqY34pBFmp75zL6x32cy0K682fSZnnh23NZqTTpZQyw!224157304

I was taking Cozaar (losartan), an ARB for around 3 months and saw no improvement in kidney function, at least not in my creatinine levels. Maybe one of the other drugs would be beneficial? Time to try and see a nephrologist again (there are only two in my area. The one I've seen didn't inspire confidence, and the other is always out of town).

Test results

Did another creatinine test today. Result about the same as always: 2.3 mg/dL (this should be about 1.5 mg/dL with perfectly functioning kidneys).

The fact that my creatinine levels have effectively remained unchanged despite all my "healthy" lifestyle changes, tells me either one of two things:

1. The healthy lifestyle, although undoubtedly improving my general health and lowering my blood pressure, has done nothing (so far) for my kidneys.
-or-
2. My kidneys are permanently damaged but thanks to my healthy lifestyle they are not worsening.

I'm planning to do another ultrasound in about a month which may shed some light on what's going on. I'm hoping it will show that the kidneys are no longer inflammed, just scarred, and this is the reason for their sub-optimal (though perfectly adequate) performance.

If the ultrasound shows no change I guess I'll get a biopsy to see if they can give me any more useful information... hopefully something like "don't worry we don't expect any progression, feel free to eat pizza again..."!