Sunday, November 8, 2009

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.

Thursday, October 22, 2009

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.

Saturday, October 3, 2009

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?!

Thursday, September 24, 2009

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."

Sunday, September 20, 2009

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

Sunday, August 23, 2009

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).

Thursday, August 13, 2009

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..."!

Thursday, July 30, 2009

Juice recipes

This is just to quickly share what has worked for me in the juicing department:

Watermelon Juice
Lots of sources talk about watermelon to solve kidney problems. I think this is because they have a diuretic effect and therefore clense the kidneys. I've been consuming about a watermelon a week for about 5 months now and can't say I've seen any particular benefit but you never know...

The fastest way I've discovered to consume watermelon is:
  • Fill a blender with slices of watermelon (seeds and all)
  • Blend
  • Strain and serve
Carrot Juice Combinations
The best tasting carrot juice combinations I've discovered are:
  • Carrot Juice and Lime (about 1 lime per big glass)
  • 70% Carrot, 30% Beetroot, Lime
  • 50% Carrot, 50% Pineapple

Sunday, July 19, 2009

Gluten

For some reason I discovered that some people recommend gluten-free diets for autistic people. This sparked my interest both because of my apparent sensitivity to wheat and its possible relation to my kidney problems, and the fact that (coincidentally or not) my personality has autistic tendencies.

http://www.autismweb.com/diet.htm

What I found extremely interesting is that they claim that gluten, a protein, can have an opiate effect on the brain, giving rise to the desire to eat more gluten. Ever since first trying to stop eating wheat a few months ago I have consistently lapsed as the desire to eat wheat was so strong. Currently I have been basically wheat-free for around two months, with the great result that my intestinal gas problem has disappeard, yet I still find myself attracted to odd bites of wheat products (even though I think it's bad for me and may even raise my blood pressure).

Searching, I discovered a lot of cases where gluten-free diet has apparently solved kidney problems (including those with proteinuria). I can't believe I didn't specifically look for this before, or that I didn't read anything about it in my regular kidney research:

http://books.google.com.mx/books?id=w9rGR_rZ__AC&lpg=PA76&ots=uJi7jbE3WR&hl=en&pg=PA76

http://www.ncbi.nlm.nih.gov/pubmed/428155
http://cat.inist.fr/?aModele=afficheN&cpsidt=3046136
http://ndtplus.oxfordjournals.org/cgi/content/extract/2/2/161

So it's settled, I'm going to have to overcome my addiction and try a strict wheat-free diet for six months and see if it has any impact.

Monday, June 22, 2009

Test results

Did another mini-blood test to see how things are going. I was especially curious as my blood pressure has been fairly low lately (without medication) and so I thought (hoped) that might things were improving in the kidney department.

Unfortunately it was not the case and curiously the results came back with EXACTLY the same numbers as 6 weeks ago:

Serum Creatinine 2.4 mg/dL > (normal: 0.8 - 1.5 mg/dL)
Blood Urea Nitrogen 11 mg/dL (normal: 9 -20 mg/dL)

Although it's disappointing not to see ANY improvement after so many lifestyle changes (diet and less work hours), I have to admit that I do feel much healthier for them and so should feel grateful rather than cheated... on other hand, maybe it means that indulging in some of the pizza I crave from time to time isn't going to make anything worse!

Saturday, June 20, 2009

New leads

Two potential aids:

Kundun Kidney Care
This seems to be a traditional indian medicine hospital (in India) founded by a nephrologist. They have a very impressive testimonials page and offer service worldwide (you send your test results (and cash presumably), they send you herbal medicine). I haven't found any objective opinion about them but they sound like they could be worth a try.

Richard Schulze
Dr. Schulze is a naturopath who supposedly has cured lots of 'incurable' diseases in his (now closed) clinic. You can watch his videos on Google Video. I haven't found any information verifying his claims but I haven't seen anything disputing them either. Although he now makes his money selling herbs, he seems to be genuine enough. Here is a leaflet he published on kidney health:

Results so far

This blog was created to chart my progress in trying to cure my chronic kidney disease, in the hope that it may help others. Three months later I really can't report any tangible improvement in my kidney function, however I can say that:
1. It hasn't got worse! And it's current level is perfectly acceptable (Serum creatine 2-2.5)
2. By adjusting my diet my general health and wellness has improved significantly, and my blood pressure has dropped dramatically (from 150/90 to 125/70).

Therefore I definitely recommend experimenting with your diet to see what works for you. For me fasting was a beneficial experience as it brought me in closer contact with my body and made me realize that many of my eating habits were just that: unnecessary habits. The general diet recommendation is:
Less: Salt, Meat, Eggs, Dairy, Wheat and other Grains, Cooked Food.
More: Fresh Fruits, Fresh Vegetables.

The big downside to this diet is the amount of time it takes to prepare and eat the volume of food required to feel satisfied! My solution has been to try and consider food preparation time as a relaxation time and turn it in to meditative experience... even so, many delicous fruits and vegetables go bad in our house because I never get around to preparing them.

I still believe that the ultimate cure (to any health problem) is in being happy, loving yourself and opening yourself up to "universal energy" (or God, or Love, or whatever you like to call it). I believe that adjusting your diet is a step on this path.

Sunday, June 14, 2009

Grains

I came across this nicely researched article that outlines some of detrimental effects of the dramatic increase in human grain consumption in the last 10,000 years. While on one hand human populations boomed after grain agriculture, the incidence of many diseases and nutritional problems increased.

http://www.thepaleodiet.com/articles/Cereal%20article.pdf

The relevance to chronic kidney disease is that grains are also implicated in auto-immune diseases, although, as usual, nothing is very clear.

At a personal level, I had been suffering from a lot of abdominal gas and, after doing some research, decided to try cutting out wheat completely. After a few days there was a definite reduction in the amount of gas. Relevance to the kidneys? My research has led to think of the body (including the mind) as a single organ and that symptoms in any part are caused by an underlying probleming. I believe that eliminating any symptoms (even, or especially, pyschological ones), by treating underlying causes, are important steps on the path to wellness.

Sunday, May 17, 2009

Cures

Not much to report by way of results but I have continued to research possible cures and continue to be astounded by the wealth of information out there (thank goodness for the Internet age!). It is also quite interesting that there seems to be a lot general concurrence in ideas about physical life, even though the terms or perspectives may change between disciplines/teachers.

The general idea that I keep coming across is that true healing of chronic illness can only come from within. There are three main, very compatible, ideas for creating the conditions for this to happen:

1. Diet: Eliminating "toxic" foodstuffs from the diet (which may be causing the auto-immune reactions which cause the chronic condition). "Toxic" foodstuffs are generally considered to be animal proteins (meat, dairy, eggs) and a bunch of other candidates, like wheat (gluten) and an excess of grains/starch in general.

2. Energy: Chinese medicine has the concept of "energy balance" and "energy blockages", which can be fixed, or brought back into balance, by nerve stimulation (acupunture, etc.) and diet. Reiki is "curing with energy". Meditation is also considered to be able to restore energy flow within the body. I think prayer is probably a form of opening yourself to "universal energy" and so could be included in this category.

3. Pyschological: Removing the pyschological issues (self-dislike, need for attention, etc.) that prevent the body from sending the chemical signals required to regenerate the needed cells, or stop the body sending the signals that are damaging itself.

All of these ideas are basically compatible and, in my conclusion, revolve around the key idea learning to love yourself (and hence avoid cumpulsive habits like eating, overworking, etc.). Here are some of the more inspiring people I've come across:

Deepak Chopra: Medical doctor turned "alternative medicine" expert. Writer of many books about self healing.

Sadhguru: A sufi/yoga teacher/mystic who you just know is extremely intelligent from the look in his eyes and the way he expresses himself. Apparently he talks about the bodies ability to rejuvenate itself, though I've yet to find the specific text/video yet.

Eckhart Tolle: Author/Philospher, influenced by Krishnamurti. Talks intelligently about living in the "now" (a common eastern philosphical theme). Haven't come across any specific health advice yet.

Dr Tong: Medical doctor who claims to have invented an improved form of acupunture that has helped (but not cured) people with chronic kidney problems.

Monday, May 4, 2009

Test Results

Another set of test results came back today. I don't think there are any really significant changes. On one hand this is a little disappointing. I keep hoping to see a dramatic reduction in something. On the other hand stability is a lot better than deteriation!

Triglycerides have risen beyond the target level (bad), probably due to eating more carbohydrates (maybe I should be more disciplined about avoiding wheat... it just tastes SOO good!). Uric Acid has dropped below the target level (good), probably due to the medication Xyloprim.

For those who like numbers here are the current results with (target level) in parenthesis.

Serum Creatinine 2.4 mg/dL Ideally this would be below 2mg/dL. Normal is < 1.5mg/dL

Glucose 86mg/dL (< 110mg/dL) No change.
Triglycerides 190mg/dL (< 160mg/dL). Last month 133mg/dL
Cholesterol 154mg/dL (< 200mg/dL) Last month 131mg/dL
Uric Acid 5.9mg/dL (< 7.0mg/dL) Last month 9.2mg/dL (before medication)
Hematocrit 35.1% (> 32%) Last month 36.5 %

Overall the results show a decline in blood quality (after an improvement last month). Maybe it's something that naturally varies. Or maybe it's because I've become less enthusiastic about eating fruit, drinking gallons of water, etc.

The results of the urine test are basically the same as those of two months ago. Proteins in urine was 100mg/dL compared to 300mg/dL previously but I think this number is highly variable in a single sample (which is why I've had to do 24 hour urine collections, fun, fun, fun).

Monday, April 27, 2009

Motivation to live

Today my six year old daughter, for no apparent reason, asked me "Daddy, what do you have to do to live a long time?" Delighted that she was asking me something I have been researching so much lately, I cheerfully replied "You have to be happy, always enjoy what you're doing, avoid fighting and being angry, treat everyone as your friend, get lots of sleep, and only eat good things..."

What she said next took me completely by surprise:
"Daddy, I want you to live a long time"

I told her I was going to do everything I could.

Progress

Well, two months have passed since I found out about my condition. 

A week or two after the initial revelation, I decided that to reverse the condition I would have to lead a buddhist monk existance, rising at sunrise every morning for meditation on the beach, living only in the moment, working only a few hours a day and without concern, learning to feel at one with the universe, eating only to satisfy my body and not my mind, getting plenty of rest and plenty of playtime (especially with my children), receiving psychotherapy, etc.

So how am I doing? Pretty poorly really. Here I am at 1am writing my blog and in general I seem to find it a lot easier to spend hours reading about healthy living and meditation than to spend half-an-hour putting it to practice. Although some of my diet changes have been radical, a lot of my consumption is still "comfort" snacks rather than needed nutrition. The psychotherapy is still on the back boiler (I would start if a psychotherapist walked up to me and offered his services...!). I still have trouble getting to myself to sleep at a reasonable time. I am definitely working less and spending more time with my girls but even with them, I'm still checking, and responding to, my mail every few minutes.

I feel that finding out about my condition has been a blessing because it has prompted me to reevaluate my lifestyle and realize that I would like to make lots of changes (and in fact need to make lots of changes if my body is to survive). The question is whether I really have enough desire to make them.

In some ways I feel like it's a battle between me, the Father, who would like to continue his journey for another 30-60 years, and me, the dysfunctional person, who wants to have a chronic, life-threatening, disease. My conscience mind wants the father to win but my subconscience worries me... I´m sure there is a lot of baggage in there that needs to be cast aside if I'm to stop injuring myself.

Learning to be children

This as I sat in my Aikido class, stressing about the noise my young children were making in the "audience" I was struck by a certain irony: 

Here we were, 15 grown men, solomnly listening to an Aikido master talking about importance of being happy and living in the present, while my children, with no instruction, joyously played without the slightest thought of anything beyond that moment. In other words, the mental state that requires years of disciplined training in an adult, exists effortlessly in children. Instead of being embarrassed about my girls disturbing the class, I should probably proudly present them as ideals!

I had always worried that maybe I wasn't teaching my children well (or at all!) but now I find they have much to teach me... I now feel that my main parental responability is to simply be a worthy example. The first step should be learning to love myself and especially my kidneys! (maybe I should keep the ultrasound photos in my wallet...)

Sunday, April 26, 2009

Cures in wild animals

Today by pure chance I came across an intestersting book that scientifically documents the impressive healing abilities of wild animals use: Wild Health, By Cindy Engel

I had previously read in a naturopath website that wild animals don't suffer from chronic disease but thought this was probably due to a lack of data than any scientific fact. Now I'm beginning to think that it ties into the theory that all chronic disease starts in the mind... wild animals, as far as I know, don't suffer from the psychological issues that affect man and animals in captivity. 

That almost implies that societal living, which depends on exchange, is a form of captivity because we become dependent on others for our survival. This dependency probably gives rise to expectancies (of reciprocity, of respect, etc.), the unfulfillment of which, seems to me (as my hero, Winnie-the-Pooh would say) to be the primary cause of negative emotions and said psychological issues (which is not to negate the huge benefits of societal living!).

The buddhist goal of "freedom from desire" (which could probably be expressed as "freedom from expectations") seeks to avoid these damaging psychological hang-ups. Perhaps the healthiest option is to learn to live in the trap (of society) without being trapped (psychologically, at least). This is probably what the long-lived communities described in the The Blue Zone acheive.

Of course I'm sure this has all been studied to death but I'm still pretty ignorant. Hopefully the pyschology books I've ordered will help (if only buying a book was the same as understanding its contents!)

Saturday, April 25, 2009

Recipes: Guacamole, Carrot and Pineapple Juice

Perhaps too simple to be called recipes, these combinations have worked well for me:

Guacamole
While there must be hundreds of recipes on the web for guacamole, lately I've been enjoying the following as an alternative to plain avocado:
2 Avocados (soft)
Juice of 1 Lime
Mush together with a fork.

You can raw onion, etc. if you like that sort of thing (I don't)

This works well spread on warm corn tortillas, either alone or before filling with fried mushrooms and salad (lettuce, sprouts, grated carrot, etc.)

Carrot and Pineapple Juice
A big surprise for me has been how good fresh carrot juice tastes. I had tried carrot juice years ago and wasn't too impressed, perhaps because it hadn't been made at that moment. Combining it with pineapple (any ratio from 30:70 to 70:30), however, is really delicious to my palate.

What amazes me is that although I would be hard pushed to eat 10 carrots at once, or a whole pineapple, I can happily drink these quantities once they've been juiced. I don't know if juice is better than eating the whole food (it certainly isn't natural!). Maybe it's better because it fills you more easily, reducing cravings for wheat, etc.

Sunday, April 19, 2009

Body Care - Life's Priority

Today, feeling great after enjoying an hour or so body-boarding with my six-year-old,  I was struck by a blindingly obvious truth: 

My body is the only thing I can't live without, yet in my 36 years, I have devoted almost no time to looking after it! 

Sure I put in gasoline, touch up the scratches, and ride around in it, but preventive maintenance?Forget about it. I guess the reason is that for the most part it works just fine without me bothering about it... until it breaks. Fortunately, in my case, I became aware of a problem before failure so perhaps I have time to mend my ways, and start investing time and effort in looking after ME (the kind of self-attention that Christian society seems frown upon, perhaps the reason I never learned to do it).

I continue to think that teaching "life skills" really should be a mandatory part of secondary school education. It is probably what most differentiates successful people from the strugglers and what gives some children (with parents capable of teaching these skills) huge advantages over others. And if teaching "life skills" meant postponing differential calculus till university, so be it!

Foamy Urine

I had been quite excited lately to notice that my urine wasn't as foamy as before, possibly indicating less protein in my urine, perhaps indicating that my kidneys were working better. Apparently proteins passing through the kidney nephrons damages them further, so reducing the amount of proteinuria would be a big plus.

Then yesterday afternoon and this morning, I had foamy urine again. As I racked my brains for a possible cause, it became quite obvious. Yesterday I practiced Aikido for the first time in two weeks (and I've also been doing less other exercise due to my girls' easter holiday). I'm not sure why, but apparently exercise causes protein in the urine (though I've never seen it suggested that one shouldn't exercise! On the contrary, I've read that exercise has proved to be good for maintaining kidney function in CKD cases). Will have to ask my nephrologist about it. 

Thursday, April 16, 2009

Zyloprim

Today I started taking Zyloprim as indicated by my Nephrologist. I was somewhat hesitant to do so as on a government website it says:

"Start with a low 100mg/day dose, in case of adverse reaction, and only increse if response is inadequate. Exercise extreme caution in cases of insufficient renal function."

The Nephrologist started me on 300mg/day and ordered test in a months time :(  I would like to trust that the Nephrologist knows what he's doing but unfortunately my experience with "professionals" in Mexico in general has been pretty poor (especially accountants and arquitects)

My other doctor recommended that I take the drug (though he didn't ask about the dose). So here's hoping it doesn't do any harm (like the diuretic that caused me to faint with super low blood pressure)... I've read that high uric acid can cause plenty of problems (crystals forming in joints and things) so I guess it's worth the risk. My reluctance stems from the fact that I feel really good generally, better than ever, and I hate messing with a working machine.

Recipe: Vegetable sushi

This experiment worked really well. I like sushi, and have read good things about eating seaweed.

You need to buy a packet of sushi seaweed. My packet came with instructions for making sushi rolls, or you can surely find them on the web somewhere. If you don't have a bamboo mat, you can use, as we did, a sheet of stiffish plastic or anything else that can be rolled without losing it's form.

Make the filling with boiled rice and your favorite vegetables: Mushrooms, green beans, cucumber, avocado, etc.

Big thank-you to my wife for making this!

Saturday, April 11, 2009

Recipe: Fish, sauteed potatoes and green beans.

Today I had my best meal since starting my diet, mainly because I have decided to start eating fish and potatoes. I had stopped eating these mainly based on the recommendations of Ehret (the mucusless eating system), who abstains from animal products and starchy food, but I have since found lots of evidence about the benefits of eating fish. There's probably nothing particularly healthy about eating potatoes but they certainly fill the belly!

Fish
Choose your favorite sea fish fillet.
Marinate with lime juice for one hour.
Fry with olive oil and germinated sprouts until both sides of the fish are slightly browned.
Serve the fish covered with the sprouts.

Potatoes
Boil in water until a butter knife can be inserted into the potatoes (don't leave them too long).
Slice into 1cm thick rounds.
Fry potato rounds in olive oil with your favorite herbs until all pieces are crispy golden-brown on both sides.
Serve next to the fish.

Green beans
Fry frozen green bean segments in olive oil until soft enough to eat (slightly crunchy is good).
Serve next to the fish and potatoes.

Happiness - the key to health

After researching all kinds of theories for treating disease, and trying to reconcile the different points of view, I've come to the conclusion that real "cure for all diseases" is contentment. You can interpret this biologically (endorphins, etc.), spiritually, or pyschologically, but it seems to me that it is the overriding factor in all well-being, and also what explains the people who do all the "wrong" things and yet live healthily into their nineties.

Of course happiness is probably the hardest thing to achieve (especially if you try!) but I believe it is where I should be focussing my efforts.

One study on communities which have above average longetivity (Blue Zones) honed in on four important factors: Exercise, Sense of purpose, Diet, Relationships with others and society at large.

I think all of these factors are contentment related. Two of them directly and I believe the other two (exercise and diet) are manifestations of happiness: Discontentment tends to lead to unhealthy lifestyles.

If anyone reading this knows the secret to contentment, please leave a comment ;)

Friday, April 10, 2009

Watermelon Seed Tea for Kidney Stones

I tried drinking watermelon seed tea for a few days but didn't feel my kidney stones moving. I read one post that says it is just a diuretic and doesn't actually dissolve the stones. I can't imagine passing a 7mm stone without dissolving first, so I need to look for something that will dissolve the stones.

The nephrologist prescribed three medicines and investigating these they seem to act to alkanize the blood (right now I have high uric acid levels, which I guess means my blood is acid). This seems to suggest that he thinks my stones are uric acid stones. However, looking at test results from a month ago, when my stones were discovered, I then had low levels of uric acid in my blood...

The medicines also carry warnings not to use when potassium levels are high (as mine are) as they tend to increase potassium levels (which is apparently dangerous)! It's tough not having much confidence in your doctor, or having the kind of relationship where I could discuss these issues with him (while he seems to be a nice guy, his professional style is "do this and don't ask questions")

Theory of my illness: Apnea

One of my original theories of my illness was that an inability to breath well through my nose was causing night apnea (stopping breathing) and that this was causing my high blood pressure (a proven possibility), which in turn had damaged my kidneys. I later dismissed the theory as I believe the kidney problems predate the high blood pressure.

However, after having a cold symptoms for a few days, I'm beginning to think that breathing may be a factor. While having a slightly stuffy nose, I have been needing to urinate a few times during the night. Apparently this happens to apnea sufferers because attacks cause a toxin to be produced which needs to be eliminated by the kidneys.

After I started my dairy-free diet, one of the first things I noticed was that I was no longer going to the bathroom at night. This may be because I had less mucus in my nose and therefore was able to breath better and therefore avoided apnea periods. My blood pressure also dropped almost immediately and this could also be due to avoiding apnea (lately, with the cold, it has tended to be higher).

It's probably not the whole picture but it could be a very important element, so I think sleeping well is very important. This will probably mean finding a way to avoid our children creeping into our bed every night (or getting a bigger bed) and buying a better mattress. The best I've tried costs about $700 for double size.

Thursday, April 9, 2009

Diet

Today I ate my first slice of bread in about a month. It tasted fantastic, so I ate another. The TBM doctor banned wheat from an allergy standpoint. The nephrologist has restricted me to 4 slices a day. I'll probably try and stay off it generally but it's tough. Dairy products, on the other hand, have been very easy to give up and now I really have no desire for them at all (not that they repulse me either).

Both the Nephrologist and the TBM doctor have permitted rice and oats, so I'll try and eat more of those. Potatoes are allowed too. I had kind of been avoiding these as they are starchy foods that are "bad" according to Ehret (The mucus-less eating system) but I think everything in moderation is fine and they certainly eat plenty of rice in asia where people tend to be healthier than in the west.

From a few things I've read, I think it would be good to eat a bit more fish, for the essential fatty acids (omega-3). I'll try and eat a little twice a week.

Doctors' review of the results

After getting my latest results I went to see my two doctors: The Total Body Modification (TBM) doctor and the Nephrologist (kidney expert).

TBM
The TBM doctor seemed a little disappointed with my results but still optimistic that we would be able to solve the problem. He told me about his client who had a creatinine level of 7mg/dL who got it down to 1.5mg/dL in six months. That's a pretty incredible results. Maybe it means that that persons kidneys weren't permanently damaged. Or, more optimistically, perhaps we just need to give it more time.


Nephrologist
The nephrologist was quite upbeat (maybe he was just in a good mood because of the upcoming easter holidays!). He said the results were good and gave me a list of the five important things that need to be controlled (see below). All my results are within target range except for uric acid (whatever that is), and he prescribed a new drug for this (Zyloprim). He also weighed me and it turns out I've only lost 3kg since going on the low protein diet (previously I was a slimish 88kg (1.82m tall). Now I'm a slimmer 85kg).

Targets
The targets the nephrologist gave me (with my current level in parenthesis) are:
Glucose            < 110mg/dL  (86mg/dL)
Triglycerides  < 160mg/dL  (133mg/dL)
Cholesterol      < 200mg/dL (131mg/dL)
Uric Acid         <   7.0mg/dL    (9.2mg/dL)
Hematocrit      >   32%           (36.5%)
"clean" urine

Drugs

Steriods: The nephrologist reduced my dosis of the steroid y prescribed a month ago and which I haven't been taking. He said he would reduce the dose again in a month. The TBM doctor (who is also a medical doctor) recommended not taking it. Even though I was tempted to start taking it after not seeing progress in my results, I think I will hold off for at least another month.

Kidney stones: The nephrologist prescribed three drugs that, taken together, will supposedly disolve my kidney stones in three months. I've read about loads of natural "potions" that supposedly do the same thing but I think it would have occurred to medical researchers to try these things out. Three months is a long time to be taking three medicines (one, every 12 hours, one, once a day, the other every two days - phew - tough to remember!), along with Cozaar, aspirin, and Ketosteril (which I keep forgetting to take despite paying $400 USD for 6 boxes). 

Aspirin: The Nephrologist said that aspirin helps "protect" my kidneys and told me to keep taking it. I haven't read this anywhere but I doubt it will do any harm (and it's cheap) so I guess I'll start taking it again.

Wednesday, April 8, 2009

Cozaar

Yesterday I started taking Cozaar again. Not so much for the blood pressure (on which it didn't seem to have much effect) but for the possible kidney protection. 

My basic understanding at this point is that when kidney function is reduced, the kidneys work the remaining capacity harder by narrowing the nephron blood vessels (nephrons are the functional parts of the kidneys). This has the effect of damaging the remaining capacity. Cozaar supposedly stops this narrowing, hence reducing kidney function slightly but hopefully slowing new damage.

I don't like taking drugs that react against the body's natural response (as oppose to aiding it) as I don't believe such an approach can solve anything. In this case, however, I feel I need to buy myself time.

Tuesday, April 7, 2009

Test results

Today I got new test results. Unfortunately they don't show the improvement I was hoping for and in fact seem to show a worsening compared to tests a month ago. 

This is very disappointing and a little depressing. I don't want to passively submit myself to the standard medical prognosis of "gradual decline until failure" but it is disheartening not to see any results after making fairly big changes in my lifestyle. 

Of course I still have many things to try on my "possible solution" list but this condition is taking a lot of my time and energy as it is. More drastic steps might even involve moving to another country for better medical care... but does it make sense to end most of my life's activities just to try and preserve my body? Spending the rest of my life dedicated to trying to stay alive doesn't really appeal to me... maybe it would be better to quit trying to solve the problem and just get on with making the best use of the time I have left?

Creatinine
The main marker for renal (kidney) function is creatinine and my history has been as follows:

23-Feb-09: 2.0mg/dL (start taking Cozaar, which I've read elevates creatinine levels 20%)
06-Mar-09: 2.1mg/dL
12-Mar-09: 2.5mg/dL
17-Mar-09: 2.5mg/dL
07-Apr-09: 2.3mg/dL (about two weeks after stopping Cozaar)

Creatine Clearance Rate
This is an estimate of GFR, the measure used to compare kidney function and categorize it:
06-Mar-09: 42.0 mL/min  (normal is over 61mL/min)
07-Apr-09: 33.0 mL/min

This level is categorized as CKD stage 3 (moderate). Below 30.0 mL/min is stage 4 (severe). Kidney failure is below 15 mL/min. My understanding from the studies I've seen is that the time period for kidney function to halve can be as little as 3 years.

I don't really understand why there has been such an big apparent drop in kidney function in this last month, after all I've probably had the condition for years. I feel it must be related to the changes I've made in that time (drugs and diet) but who knows what? Or maybe a result of thinking about it constantly?!

Urea and  Blood Urea Nitrogen (BUN)
Previously I had slightly high levels of urea in the blood. Now I have slightly low levels. According to Wikipedia this suggests malnutrition (i.e. low protein intake). Apparently urea in the blood isn't toxic but it is marker for other toxins, so lower is better. Some GFR estimatiations take BUN into account, and so these estimate more kidney function than those shown on the lab results.

Protein in urine
The two 24 hour collections of Urine I've done show:
06-Mar-09: Total protein 1,881mg/día (normal: 42 - 225mg/day)
07-Abr-09:  Albumin         1,485mg/día (normal: 42 - 225mg/day)

As one test is total protein and the other is just albumin (the most common protein), I'm not sure if this shows an improvement or not. In any case it's obviously still way to high. This is importante because apparently proteins passing through the kidneys damages them further. How I wish I'd paid more attention to this when protein was first found in my urine 7 years ago! (In my defence the doctor at that time didn't suggest further investigation)

Sunday, April 5, 2009

Units serum creatinine

In the UK serum creatinine is measured in µmol/L while in the US (and hence Mexico), it is measured in mg/dL.

To convert µmol/L to mg/dL, you need to divide by 88.4



Recipes: Oat mush, vegetable fajitas

Here are some of my more successful recipes that comply with my diet restrictions:

Banana - Chocolate, or Banana - Mango, Oat-Mush
Mash a banana and about half a cup of oats together. Leave about 30 minutes for the oats to soften. 

Alternatives:
  • Add a teaspoon of unsweetened cocoa powder for a chocolatey taste.
  • Add a diced mango (inexpensive mangos are one of the main advantages of living in Mexico).
Portabello Mushroom and Nopal Fajitas
Slice up a couple of Portabello mushrooms and "Nopal" (cactus) pieces. Fry in olive oil for about 5 minutes or until the nopal is soft. Serve on heated corn tortillas, which are wrapped around the vegetables to make a taco.

Proteinuria

It seems like reducing the amount of protein in the urine is also an important goal (along with lower blood pressure) in slowing the progression of reduced kidney function. This very useful article proposes a target of 500mg/24 hours:

My last test shows 1850mg/24 hours, so clearly work to be done here. I feel that my level hasn't changed much so far because my urine continues to create foam, a sign of protein. Tomorrow's test results will tell me.

Progression of CKD

I found a useful explanation of the mechanics of chronic kidney disease and why it tends to worsen over time:

Mushrooms (Agaricus Bisporus)

A lot of naturist sites say that Mushrooms (Agaricus Bisporus) help people with kidney failure by purifying the blood. By chance one of my staple foods has become portabello mushrooms, which I find to be one of the tastiest foods still on my permitted list.

Jon Barron

Someone tipped me off to Jon Barron who is another natural health advocate similar to Richard Schulze (who's inspiring videos can be seen on http://video.google.com ). It was much the same "detox" advice and herbal formulas but did mention a new concept to me: "kidney sludge" which supposedly interferes with the correct function of the kidneys. According to the site, kidney stones are an extreme manifestation of this sludge:


He then describes his magic herbal potion for cleaning the kidneys which apparently had amazing results with one patient who has a testimonial on his site. Might be something to try if my current efforts don't work.

Why I find difficult to have much faith in the "herbal remedies" approach is that it is really just the same approach to medicine as conventional drugs so if the remedies really were that effective, I'm sure they would have been readily adopted by conventional medicine (I don't for one minute subscribe to the conspiracy theorists who claim that "doctors don't want you to know" about these secret cures). On the other hand, there seem to be individuals that have positive results from natural/herbal treatments... maybe it's just the placebo effect?

UpToDate.com

This post is just to recommend a very informative and well-written medical website I've found:


Drugs: Cozaar (Losartan)

Here is a decent description of Cozaar, the anti-hypertension drug I stopped taking a couple of weeks ago:


In general my blood pressure has been good without any drug treatment (yesterday as low as 120/75) but occasionally I have peaks of around 140/90 and the day before yesterday I read as high as 145/95 so I have been wondering if I should start taking the drug again because I keep reading that maintaining low blood pressure is the most important factor in slowing the progression of kidney insufficiency (even though the drug really didn't seem to have any effect when I was taking it and I had even higher blood pressure then).

It also seems that the drug, which is an ARB (angiotensin receptor blocker) can specifically help with certain kidney conditions (caused by type II diabetes). Some websites suggest that they are beneficial to retard kidney disease progression of all types and especially when there is proteinuria (which is my case):
I also read that it is recommended that blood pressure be maintained below 110/80 when there is proteinuria, suggesting I should lower my blood pressure still further.

If my next tests don't show a dramatic improvement, I may start taking Cozaar again, for proteinuria benefits if not for the hypertension.

Reduction in kidney function
I did read that Cozaar can REDUCE kidney function, so this could explain my higher serum creatinine reading (indicating reduced kidney function) two weeks after starting to use the drug. One document said that an increase of 20% of the serum creatinine level should be expected after administering the drug. This is quite a relief as my big jump (from 2.1 to 2.5mg/dL) in serum creatinine had been worrying me. The nephrologist did indicate that it was normal that the serum creatinine level should rise "with the drugs" but I wasn't sure which drugs he was referring to as I am not taking the anti-immune system steriod he prescribed.

Saturday, April 4, 2009

Sea Salt

Found a long diatribe about the benefits of sea salt. Some of it is quite interesting but it's a shame it's written in such a fanatical, non-objective, non-referenced way. Makes it hard to separate the wheat from the chaff:

http://www.curezone.com/foods/saltpage.asp

Watermelon seed tea

I'm going to try drinking watermelon seed tea. Supposedly it helps get rid of kidney stones and with kidney problems generally (and I have a LOT of watermelon seeds as I'm eating about a kilo of watermelon for breakfast every day).

The recommendation comes from "Edgar Cayce", who it turns out, what was a psychic who discovered cures through psychic readings! Very interesting, though, that I've come across many sources recommending watermelons for kidney problems. I suppose trying the tea is unlikely to cause any harm.

WATERMELON SEED TEA
Watermelon seed tea is a diuretic recommended in the Cayce readings, particularly as a stimulant to cleanse and purify the kidneys and bladder.

INDICATIONS AND USAGE
Watermelon seed tea was specifically recommended by Edgar Cayce for kidney stones. It was also suggested to simulate underactive kidneys.

CONTRAINDICATIONS
No known contraindications.

DOSAGE AND ADMINISTRATION
At least once a day, three days a week, take watermelon seed tea prepared by pouring a pint of boiling water over a tablespoonful of watermelon seed (ground or cut) and allowing it to steep. Let it cool, then strain and drink. If practical, the tea should be made fresh for each use.

Juicers

As an aside, I bought a new juicer: a Moulinex Juice Machine but unfortunately I was a bit disappoionted. I bought it as I thought it would save time because it automatically pushes out the juiced pulp (whereas with my current antiquated juicer, you have to open it every glass, or so, to scrap out the pulp by hand). Also the basket lifts out by hand for cleaning, where with mine you have to unscrew it and then force it out bit by bit.

Unfortunately the Moulinex has so many pieces, and much bigger pieces (allowing you to process more fruit or vegetables at a time), that I'm not really sure there is any time saving at all:

Moulinex: Pusher (about 20cm long), adapter tube (about 20cm), top with input tube (20cm long) plus pulp extraction channels, blade, basket, base piece, pulp collector.

Old juicer: Pusher (about 10cm long), top with input tube (10cm long), blade, basket.

I also felt after that the Moulinex extracted less juice because it generates a moist (sticky - uck) pulp, whereas the old juicer has a dry pulp. However after closer examination, I think the juice output is about the same (but the Moulinex juice has less air in it).

Parasitic causes

Someone suggested Schistosomiasis, a parasitic infection, as a possible cause of my kidney insufficiency (due to the antibodies that the immune system produces to attack the parasite), and reading about it, it is plausible.

http://renalfellow.blogspot.com/2009/02/schistosomiasis-and-renal-disease.html

In any case, this study suggests that anti-parasitic medicine is ineffective at preventing the progression of chronic kidney disease:

http://www.nature.com/ki/journal/v35/n5/abs/ki1989114a.html

Also, I think the fact that my immune system tests were negative (no antibodies in my blood) means that the cause is of my condition is not due to something external to the kidneys.

Monday, March 30, 2009

Donors and a theory for my illness

Donors
I've just found out that my mother and sister are blood group A+. I think this means that they are not suitable kidney donor candidates as I am O+ and unable to receive blood from any other blood group. On the other hand my blood type is able to donate to anyone ("universal donor"). That's nice to know. My wife is also O+ but I don't know if she is genetically compatible (I've read that there are two specific genes associated with organ rejection and that the ideal scenario is that both are compatible).

I think not having my family as potential donors is a good thing as it removes from my mind that "last resort escape clause". Now I know I have to get better (which I think I'm doing in any case - in one week the test will confirm).

Blood Pressure and health
I've been amazed that my blood pressure seems to be maintaining itself at an acceptable level (around 130/80) without any drug help. I think the radical diet change is what brought it down.

In general I've been feeling exceptionally well. I really feel that finding out about the kidney problem was the shock I needed to turn my life around and become the spiritual, healthful, person I've always desired to be. This morning I could even dicern the outline of my abdominal muscles (another one-time of goal of mine that I've never really done anything about). In fact maybe I've never felt better!

Unified Theory of Everything

With all the information I've collected I'm starting to form a theory of my illness along the lines of:
1. Psycological problems causing allergic reaction to certain foods (probably dairy).
2. Allergic reaction causing damage to kidneys (probably through an immune response).
3. Kidney damage raising blood pressure.

The kidney stones fit nicely into this hypothesis (body not processing calcium correctly (found in dairy products), resulting in stones).

All of this is complete unscientific of course and just a layman's interpretation of the facts based on limited understanding.

Tuesday, March 24, 2009

Reiki

I came across a story about someone who has improved his CKD with self-administered Reiki. I will have to try that. Actually I wrote to a Reiki teacher in my area but she never responded :(

http://reikiretreat.blogspot.com/2008/02/using-reiki-with-chronic-kidney-disease.html

Here is an even more promising Reiki success story. Apparently a failed kidney of a 10 month old baby were restored to normal function (according to the story, the child is 12 now and considered normal by doctors).

http://ezinearticles.com/?Giving-Reiki-to-Children&id=193820

What struck me about this is that the patient was a child, i.e. no psychological hang-ups. I feel that the to let the body perform the miracle I desire I will have to return to a babylike state, both mentally and physically (of course my friends say I act like a child already, so I may already be someways down that road).

Monday, March 23, 2009

Break fast

This evening I decided to end my fast as I noticed that I was a bit blotchy under the eyes and my body felt a little sore (probably from the Aikido and trampolining over the weekend). In the morning a colleague at worked mentioned that my face looked thinner, which surprised me.

Although the four-day juice-fast (a more correct term would probably be "juice-only diet") didn't have any big magical effect, I think it was beneficial as:
1. It helped me see that a lot of my eating was a "comfort" activity, rather than something my body needed.
2. I think it verified that my colon is basically clean (nothing too unusual came out).
3. It gave me a chance to use the juicer that my wife bought a year ago and has used exactly twice (and I have to say that fresh pineapple juice really is delicious!).

The Healing Power of Illness

My "alternative" doctor read me an interesting section from a book that I think is called "The Healing Power of Illness" ("La enfermedad es un camino" in Spanish) by Thorwald Dethlefsen y Rüdiger Dahlke.

The book says that the kidneys are related to the way one relates to other people. I found this very interesting as inter-personal relationships are definitely one of my weaker points. Coincidence? I'll have to read more to try and find out if it has any feasible basis or not.

After all my research I'm finding that most "alternative" remedies seem to fall into three theories of health:
1. Diet - unhealthy food causes disease.
2. Psychological - disease is caused by the mind.
3. Energy - disease is caused by energy obstructions or imbalances.

I believe all three to be valid and plan to improve all three in my attempt to rebuild myself. I realized today that growing new tissue in my kidneys (something that doesn't usually happen) would be akin to being reborn in some way, so perhaps to achieve it I really need to become like a newborn person, free of all the emotional baggage of my past. I believe a psychotherapist is in order...

Goal setting

For a while I've been day dreaming about getting my next test results back and seeing a dramatic improvement. For some reason in my dreams I see a serum creatinine level of 1.8mg/dL (a bit below my first test a month ago of 2.1mg/dL and a lot lower than my last test of 2.5mg/dL), so today I decided to set 1.8mg/dL as a firm goal as some people say that specific, visualizable, goals are are more likely to be acheived (of course it never worked out that way when I played the lottery!)

So there it is: By my next test (in about two weeks) I want to see serum creatinine of 1.8mg/dL !

Painless kidney stone removal

I came across this "too good to be true" solution for kidney stones. Just drink a liquid that disolves the stones:
http://kidneysite.com/

My nefrologist said he wants to wait a couple of months before treating the kidney stones. Will have to ask him about this solution. He'll probably tell me it's not safe for my kidneys :(

Sunday, March 22, 2009

Found an interesting quote from from EdREN, the website of the Renal Unit of the Royal Infirmary of Edinburgh:
"For some reason, once kidneys have been damaged, they may continue to get worse over months and years, even long after the disease that caused the damage has gone. This is more likely if you have high blood pressure, and if there is much protein leaking into the urine."

http://renux.dmed.ed.ac.uk/EdREN/EdRenINFObits/CRFLong.html

This is a bit scary as it suggests that the kidneys usually continue to degrade even in the absence of anything attacking them. I hadn't considered this previously and had imagined that if I managed to convince my immune system to stop doing whatever it's doing to my kidneys that things would be okay. Unfortunately I have had both high blood pressure (controllable) and significant protein in my urine (1881mg in 24 hours in a test on the 06-Mar-09). I don't know what can be done to stop protein leaking into the urine. Possibly eating less protein (which is probably why the nefrologist has put me on a low protein diet)

The website also shows a graph showing a patient's kidney function degradation over time, taking only six years from treatment (which led to initial improvement) to dialysis. Scary, scary stuff!

Fabry disease

I discovered a new cause of kidney problems today: Fabry disease, a genetic disorder leading to a toxic build up of GL-3 (whatever that is) in the blood.
http://www.fabrycommunity.com
http://www.bbc.co.uk/dna/h2g2/A471296

A lot my symptoms fit (with some probably significant exceptions) but apparently there's no cure anyway so even a diagnosis of this as the cause wouldn't help me.

Day three of fast

Day three of my fast, a Sunday, has been pretty uneventful. I really feel very little hunger, mostly just occassional psychological cravings (mostly for things that are on my banned list anyway, like a cheese sandwich).

My blood pressure has been really good, around 130/80 despite not taking the medicine for a few days. Maybe the fasting is keeping it low. Have to see what happens when I start eating.

Physically, I've felt absolutely fine which has surprised me a little, no weakness at all or lack of energy at all. I did a little exercise playing with the children on their trampoline and managed 3 somersaults. The somersaults were perhaps a little more dizzying than normal.

Somehow I really feel convinced that I'm going to solve the problem with my kidneys, though I'm already feeling a little nervous about the results of the blood test I'll do in a couple of weeks. I desperately want to see an improvement! If I don't, I will intensify my efforts...

My father sent me an e-mail today asking about my blood pressure (as he has also been treating hypertension). In my reply I finally mentioned the kidney problem, the first family member I've told. Will e-mail my mother today (she's traveling and unreachable by phone).

Saturday, March 21, 2009

Day two of fast

Fast: Day Two
I've gone about 48 hours without eating solid food (have been drinking fruit and vegetable juice) and I'm starting to feel hungry. The white supermarket bread that my daughter insisted on buying today seems incredibly tempting... but bread is on my banned list of foods in any case :( Think I'll juice some watermelon instead.

In general though I've been feeling suprisingly good with very little hunger and no other ailments. If the naturopaths are to be believed this may mean that I don't have many toxins in my body (they say it's normal to feel bad during a fast because the toxins in your body start getting flushed out... or something)

Exercise: Aikido
Today I even participated in my first Aikido class since discovering the extent of my kidney problem. The nefrologist said that it was fine, and I've read that exercise in general is a good thing. I think Aikido might be especially good because it has a spiritual dimension.

Blood pressure
It's also been two days since I stopped taking Cozaar, the drug which is supposed to lower my blood pressure. So far the pressure remains a fairly stable in the 130/80 range, which is great. I'm not sure yet if the continuing absence of high blood pressure is because the drug is still in my blood stream or if it's proof that my previously high blood pressure was brought down by diet rather than the drug. It is a relatively expensive drug, so I will be happy to find that it's not necessary.

Friday, March 20, 2009

Pulse during fasting

One interesting thing I noticed is that after almost 24 hours of fasting, my pulse is down to 46 beats a minute. Very interesting and not sure why it should be.

Fasting take two

After reading more naturopath stuff, I've decided to have a go at a multi-day fast which many suggest should be the start of any "cure" program. An Arnold Ehret document mentions that many people feel better on day 20 of their fasts than on day 5 (!). I don't think I will be going that far but I have read in a few places that it is on around the fourth or fifth day that the insides get truly cleaned out. Not even sure if this is a good thing but I'm game for anything at this stage!

It is very difficult to go without eating and it makes me feel that my normal eating patterns are more like an addiction rather than a biological necessity. Although I've had some hunger pangs, my biggest craving has been to have food in my MOUTH, not in my stomach. I have been feeling an almost uncontrollable urge to chew something. So much so that I've been chewing my rubbery toothbrush handle.

For lunch I turned a delicious pineapple into juice as apparently pineapple juice is good at expelling parasites. I've discovered that many "alternative" types are obsessed with parasites and consider them to be the cause of most illness, tiredness, etc. and after reading so much (and seeing horrific photos!) I've started wanting to make sure I don't have any major parasites. The "alternative" doctor said he didn't think I did.

Update

My blood pressure seems to have come under control and is generally in the 130/80 range (sometimes more, sometimes less). I'm not sure if it's due to the diet/lifestyle changes or the medicine (Cozaar + Aspirin), so I've stopped taking them yesterday to find out. So far so good.

I took yet another creatinine test which gave 2.5mL/dL (compared to 2.6 a week ago), however the urea level was up. What I still can't fathom is how rapidly the creatinine and urea levels have gone up since discovering I had the condition. The nefrogolist (kidney expert) said it was normal because of the "drugs" (I didn't tell him I wasn't taking the main drug he prescribed). The "alternative" doctor suggested it may be because now I had conditioned myself to having a kidney problem, my body was acting in a manner consistent with that conditioning. My personal theory is that having lowered my blood pressure, less blood is getting filtered through my kidneys every day. Hey, it makes sense to me.

The nefrologist gave me the same prognosis that I've read online: gradual progression of the kidney disease until failure. He continued to prescribe Colcort, a steriod that supresses the immune system, thereby slowing the damage to my kidneys. From what I gather, it is my own body that is damaging the kidneys, attacking them as if they were are foreign body. I haven't started taking the Colcort as it can have permanent undesireable effects on the immune system

The goal of the nefrologist is to delay the progress of the disease as much as possible, hence the low protein diet, immune system supression and blood pressure control. He prescribed "Ketosteril", a pretty expensive drug ($200 USD/month). From what I've read it seems to be nothing more than an amino-acid food supplement to compensate for the low protein diet. The nefrologist however said that it would help repair damaged (but not dead) kidney cells. I guess anything that may do that is worth a try!

The "alternative" doctor remains optimistic that his treatment will work. He's asked me to take 6 sessions and have another creatinine test to see if we're making progress. I hope to God that we are! I still have many other things to experiment with in my search for a cure but none offer such a tangible chance of success as this doctor.

Sunday, March 15, 2009

Sunday Indigestion

Blood pressure has been in a good range today: (112-138) / (77 - 86).

Suffering from light-headness when standing up suddenly. My head feels dizzy and my vision clouds over for 10 seconds or so. Although I've often experienced light headedness, I've never had my vision affected so strongly before.

The Fruit and Veg diet went well from the point of view that I didn't have any strong cravings for anything else. On the negative side, I'm suffering from the most severe indigestion I've ever experienced (at least in the last 5 years, which is about my memory span for these sorts of things). I think it's my stomach over producing acid to break down all those raw carrots and beets I ate. I'm sure if I can take an indigestion tablet or not but I think I'll risk it. One tablet can't hurt all that much and not sleeping due to pain will probably have worse consequences. Of course I've no idea if the tablet will help, indigestion is really not something I've evered suffered from. My health seems to have been downsliding ever since I started trying to get better!

Saturday, March 14, 2009

Body reprogramming

Blood pressure has remained at a fairly good level lately. Not sure if it's the medicine (Cozaar) or the healthy eating. I haven't kept up the meditation, so it can't be that!

Talking of eating, cutting out dairy, and reducing wheat, has been harder than I thought. I feel very hungry with cravings for pizza, or something, and no desire for fruit or vegetables at all. After I eat these things, though, I do feel satisfied... for a while at least.

Today I had my first appointment with an "alternative" doctor. He is a medical doctor who now uses a technique called "Total Body Modification" or TBM. He told me he had success with a four other patients with chronic kidney disease (worse than me), so he thought the chances were good that he would be able to help. I neglected to ask how many (if any) patients _hadn't_ responded to his treatment!

Diagnosis
His diagnosis technique was very interesting and left me wondering whether he has a special gift or whether it's just training:
  • He asked me to raise my arm and resist his trying to lower it.
  • He than proceeded to touch different parts of my body, which he said corresponded to different organs, and tried to lower my arm.
  • When touching a healthy "organ" he had trouble lowering my arm. When touching a sick organ he was able to lower my arm easily
While I have no idea of the validity of this techique as a diagnosis, what was very interesting is that there was a definite difference in my ability to resist him moving my arm, depending on where he was (lightly) touching my torso. Fascinating.

The technique also reminded me of "ki" exercises I've read about. "Ki" is an eastern concept describing a "universal energy" that flows through all living things. In these exercises someone who can control and "extend" their ki can extend their relaxed arm and noone can move it. I've heard of similar things with hypnosis. All very interesting and a great treat to experience something like that first hand.

It's not the first time I've had "unusual" experiences like this with "alternative" healers, so it seems clear to me that there is more to the working of the human body than is covered by the Western medical system. If there are such clear, scientifically unexplained, effects (in me at least) I wonder why the research doesn't seem to have been done to explain them and therefore use that knowledge in medicine. Then it occurs to me that perhaps it doesn't work with everyone and perhaps that is a big flaw in medical research: for something to be proven to work, it has to work in everyone, with the implicit assumption that all human beings are identical, mechanical, beings. I somehow instinctively believe, however, that many illnesses are caused by the mind and I don't think anyone would claim that any two minds are necessarily alike!

Intestines
The doctor made a possible diagnosis that made a lot sense. Perhaps something I ate once had triggered an immune response from my body and that same immune response was attacking my kidneys. For whatever reason, the immune response never "turned off". This possibility seems consistent with a non-painful intestinal condition I've had on and off for seven years (the same time period that protein was first detected in my urine). It may also be consistent with a "gas" problem I've had for the last four months or so (about the same time period as my blood pressure got higher).

Treatment
After the diagnosis, he proceeded to stimulate certain points of my body with some kind of mechanical hammer. This was a tool with the same form as an electric drill but instead of a drill bit it had two plastic rounded hammer heads that move back and forth alternatively, contacting the body. He also put pressure on other areas by placing some hard foam wedges under my body.

Medicine
He asked about my medicines and recommended that I stay on Cozaar and Aspirin but didn't recommend that I start taking the Calcort (that the nefrologist prescribed), unless I didn't get better with his treatment. Calcort is a steriod that supresses the body's own immune system. What scares me about Calcort is that it can have a permanent debiliting effect on the immune system, and if I depend on it to protect my kidneys it probably means taking it for the rest of my life. That's why I would like to find a "non-drug" solution to the problem.

Diet
He reviewed my diet and made it even stricter (!) cutting out sugar and honey, boxed cereals, and wheat.

Next steps
The doctor recommend two sessions a week until my blood creatinine levels start to go down, and one session a week thereafter. It will be a bit of a commitment as his clinic is about one-and-a-half hours journey away but if it works it will be more than worth it!

Friday, March 13, 2009

Creatinine

Got a blood test result result back today. It shows a big jump in creatinine levels - suggesting that kidney function has dimensioned in the last week (which is hard to believe).

Plasma Creatinine Levels:
23-Feb-09 2.0 mg/dl
06-Mar-09 2.1 mg/dl
12-Mar-09 2.5 mg/dl

Thursday, March 12, 2009

After faint

By 09:00am my pressure is back to something normal (around 120/80 - very good) but I still feel light-headed. May be due to being anemic (a condition that not eating much could have aggravated). 

Went in for immune system tests today but the results won't be back until Tuesday. They will also do a creatinine test, which is the basic measure of kidney function (creatinine is a by-product of the muscle function and it's level in the blood is maintained by the kidneys). 

Fainting

At about 5:30am I woke up with a horrible cramp in my leg (something that's happened a few times lately). I got up to pee.

While standing in the bathroom I suddenly had a strong, swooshy, dizzy feeling in my head and I remember thinking, "Wow! I've never felt anything like this before". The next thing I was aware was being woken from my dreams by my wife screaming my name and shaking me. That seemed a bit strange and I gradually realized I was "sleeping" on the floor of the bathroom. I heard her say "an ambulance is coming". I just told her "I'm fine, I'm fine", which was true apart from feeling seriously "out of it". Then I passed out again.

After a few more episodes of drifting in and out of consciousness. It occured to my wife that perhaps my pressure had dropped and she strapped on my blood pressure monitor in a complete panic, poor girl. The reading was almost unbelievable: 80/65 with a heart rate of just 42 bps. I didn't believe it so I took it again. Same kind of reading.

Slowly, over a period of about 10 minutes, I regained enough consciousness to get back to bed. My pressure was going up a little but still very low. I asked Mónica how she found me and she said that I was making strange noises as if I was vomiting. No idea why that was. All I remember was being deep in dream.

Waking again at 07:00am my blood pressure is at 107/65 with a relatively normal heartbeat of 67 bps.

This experience just about shatters my already low opinion of drugs. Yes, I know I probably brought it on by fasting or the pure fruit and veg diet but if diet can have such an effect, why didn't the doctor recommend trying this before prescribing the medicine. I really don't understand why the medical profession is so hung up on prescribing medicines instead of looking for underlying causes, after all I do believe that most doctors sincerely want to help their patients.

Wednesday, March 11, 2009

Break fast

I broke my fast of around 40 hours with a Banana. I didn't actually feel that hungry but I'm going to have some blood tests tomorrow and thought that fasting might give non-typical results, which wouldn't be useful to the doctor (after all, I don't intend to fast forever!)

Ultrasound

My first ultrasound confirmed the seriousness of the problem along with the unexpected surprise of four kidney stones between 5mm and 7mm in size. A new problem to research! An initial search suggests that that this size is now too big to cure itself but no so big as to be present a large problem. Not sure what the cost of removal will be of course...

The ultrasound doctor said something to the effect of "sometimes these cases can be cured, let's hope in God". Hmm... when a Doctor acknowledges that a cure will depend on God, you know you can't expect too much from the medics.

The results of the ultrasound say:
  • Kidney size 99x37mm (right) and 106x43mm (left), which is only slightly less than normal. This is a good thing.
  • Low cortex/medulla ratio (or "low cortimedullary differentiation") - I think (spanish translation). this is a bad thing.
  • Chronic inflamation, mostly on the left (bad).
  • Bladder normal.
Blood pressure today has been around 130/85, which is relatively good for me.

Tuesday, March 10, 2009

Nefrologist

This evening I had my first visit with a nefrologist (kidney expert). He confirmed that I have a serious kidney problem and ordered more studies (ultrasound and immune system). He upped my dosage of losartan (Cozaar) and introduced a new medicine deflazacort (Calcort). 

A bit of research shows Calcort to be quite powerful, a steriod that supresses the body's own immune system (possibly desirable as possibly my kidneys are being attacked by my own immune system).  What I don't like is that once you go on it, you have to stay on it because the body stops producing its own immune response. Maybe I'm wrong but I feel that millions of years of evolution are better at looking after our bodies than one or two hundred years of medical science, so I'm not too happy about taking this drug.

Second meditation

My temples aching and blood pressure high again, I decided to do another meditation session. Unfortunately the results were not as good as the first time. My blood pressure actually INCREASED to a maximum reading of 155/95. This is going to be a long uneven path...

Fasting day one

2pm on my first day of "juice" fasting. My head hurts a little and I feel pangs in my stomach... I think I'm suffering something similar to drug withdrawal systems... well maybe not that bad but it does at least let me appreciate how hard it must for a drug addict to quit.

The stuff I read about fasting talked about your body liberating itself of toxins but I have experienced that (yet). My urine has been almost clear. I wonder if this means I don't have any toxins or if the fasters are making it up. In any case, I think it will be good and interesting to empty my body at least once in my life just to see what happens (nothing bad I hope!)

Meditation - relaxation

I tried my first serious attempt at meditation to today and it was very interesting.

My pressure before starting was 145/91, after working from home a few hours.

After 30 minutes of meditation (lying on my back trying to be an observer to my thoughts) the first pressure reading was 120/84. Taking two more readings gave an average of 127/87. I think getting a 20 point drop in 30 minutes is pretty impressive (much more impressive than the drugs I'm taking which haven't seem to have done anything)

40 minutes after the meditation ended, and having an "annoying" work-related episode, my pressure was up at 137/87.

This seems to indicate to me that my blood pressure is at least partially stress-related. 

While meditating I wondered if maybe the reason the kidneys send a hormone signal to increase blood pressure when they are damaged is because they requiere higher pressure to filter properly or something? This is why I think that, long term, the only valid treatment is to remove the underlying cause. This evening I'm seeing a specialist who will hopefully shed some light on this.

First reading 127/81

Wow! My first pressure reading of the day is within the desired range (to help prevent further kidney damage)! In fact one of the three readings I took was as low as 118/78 (normal)!

This is really remarkable and hard to know what to attribute it to. I also recall last night I slept very well without getting up to urinate (previously I was getting up three or more times a night). Possible explanations:
1. Semi-fasting/change in diet. This is the most likely explanation in my opinion as it's the most dramatic change. Yesterday I ate very little and only fruit and vegetables.
2. The diuretic (clortalidona) I've been taking on Thursday morning (today is Tuesday). This could be having some effect as it was two days after starting this (Saturday) that I started getting lower readings in general.
3. The Losartán I've been taking for 16 days to (supposedly) lower my pressure. It seems unlikely to me that this would "suddenly" kick in, so I don't think it's responsible. In fact I don't think it's having any effect whatsoever. It will be the first drug I experiment with not taking once my pressure stabilises.
4. Mindfulness meditation/Positive attitude. Although I have just started investigating mind exercises, it seems way to soon for them to have had any effect, so probably not responsible.

Monday, March 9, 2009

Fasting

Following links on natural eating I found a few advocates of fasting as a way to cleanse the body of toxins. Apparently fasting followed by healthy living can cure "any disease" so it sounds worth a try! Tried starting today but found I got too hungry at lunch time (despite having eaten breakfast!) so I had a couple of bananas. Anyway, I read a 5-day detox program for the kidneys in which the first and last days were light fruit meals so I will try that and have a go at fasting tomorrow (for the first time in my life). It really is surprisingly difficult to go without eating, at least for me (I was supposed to do it for charity once but never managed to) and I believe in listening to my body so lets see what my body tells me tomorrow.

Blood pressure 136/83, my best reading for weeks. I don't know if it's the diet/relaxation that's doing the trick or just coincidence that the medicine is starting work. Seems like too big of a coincidence that the moment I start to actively try and heal myself the medicine should start working, so I'm going to believe it's my own efforts for the moment. Later, when I have stable pressure, I will stop taking the medicine and see what happens.

2 hours after waking

An average of three readings two hours after waking give 141/83, which is in the right direction. So it seems my pressure increases during the night. I wonder why this might be? I've made a list of possible treatments and getting better sleep (with a better bed) is on it.

In general I feel nervous with "butterflies in stomach" (or maybe it's just hunger from my vegetable diet?!). I can see it's going to be an enormous task to completely change my pyschological make up if I'm to have any hope of defeating this problem using "mind-body" techniques.

Vicious circle

My wife managed to take my pressure in the night 144/85... perhaps the diatolic (second number) pressure is a little lower than during the day. I took my pressure firsting in the morning before getting up: 149/95. This is really quite depressing and now I feel myself entering a vicious circle of worrying about a kidney problem caused by worrying... it's going to take a big change in mental attitude to break out of this one.

Sunday, March 8, 2009

Stress kills!

I'm pretty sure that stress (due to a nervous disposition) is the root cause of my health problems and so I looked around for some information on the subject. I found this article to be well written and helpful and well worth reading by anyone who suspects their reactions to stress may be unhealthy.

In my case, a troubled infancy/childhood fits perfectly with the suggestion in that this is associated with "hypersensitivity" to stress in adult life.

Moral of the story: If you want your children to lead happy, healthy, lives, let them live as free from worry as possible and demonstrate your love for them daily, even if it annoys the hell out of them at the time!

Tomorrow the experiment begins

The "no starch"/"no mucus (milk, etc.)" diet is leaving me a bit hungry, which I don't particularly think is a good idea. On the other hand, I think it would be a good idea to have a complete internal scrub, so I should try and eat as little food as possible and drink tea to fill myself until I get to the "water in, water out" stage.

Finally got the hot water working and took my first hot shower in a month or so. Previously hot showers had reduced my pressure readings from 150/95, after arriving home from work, to around 135/85 after the shower. Today, however, I went into the shower at around 140/90 and came out at 140/90... that 140/90 seems like a barrier that I can't break through. This evening I went for a relaxing walk with my girls but that equally didn't have any immediate effect on my pressure. Let's see what happens after a month of peaceful, healthy living.

Today I read that the kidney disease sends hormones that raise the blood pressure... I wonder why? and if this is the body's natural response, is it necessarily a good think to try and interfere with it with drugs? On the whole I don't agree with drug use, especially long term drug use, as they always seem to discover that interfering with the body's natural workings causes other, unexpected problems. Of course when it's life or death this is preferable to dying but in general I think the body has to be given the tools it needs (good nutrition, good sleep, and good mental state) to solve it's own problems. Easier said than done, of course.

Transplants and anti-immune system drugs

Just read this thrilling information "Compared with the general population, kidney transplant recipients are 10 to 15 times more likely to develop cancer". This is probably due to the use of anti-immune system drugs (which stop the body rejecting the donated kidney).

Unfortunately dialysis patients only last a few years, so a transplant is really the only viable option if things get to that stage. It would be much better, however, to avoid getting there and that is where my efforts have to be focussed.

Other negative news is that kidney failure is only detected in blood tests (as mine was) when 60% of kidney failure is lost. The damage is supposedly irreversible but I genuinely believe that the body is capable of far more than is typically observed in the "west"... I instinctively feel it is somehow necessary to open myself to the "universal life force" (my made-up term) through correct mind training, sleeping and eating... I also instinctively feel that this will be very difficult for a 36 year old with no prior training. I guess now is my big chance to try... although it also worrys me that I may need to become so self-absorbed in order to achieve my goal that it becomes pointless. After all I see little point in living just for living's sake.

Lower blood pressure: Breathing and Meditation

The RESPeRATE is an interesting device that seems to be an electronic meditation guide, helping the user peform specific breathing exercises. They claim an average pressure reduction of 14/8, which is about what I need.

Apparently meditation has been clinically proven to lower blood pressure and given that I suspect that my high blood pressure is related to incorrect breathing (because of stress and a half-blocked nasal passage) the idea of breathing/meditation seems quite promising... will try meditation/breathing exercises on my own at first and see what happens.

Alternative Cure Arnold Ehret

Fishing around for an "alternative" cure for chronic kidney disease has been suprisingly unproductive given the number of "quacks" out there.

I did come across the story of Arnold Ehret, however, who supposedly cured himself of uncurable kidney problems in the late 1800's by following a "natural" diet of vegetables, fruits and nuts, as well as fasting for cleansing purposes. He then went on to be a leader of a general movement towards natural living (before being killed by an accident at 55 years old - you can't win them all). One of his books, The Definite Cure of Chronic Constipation, is online and I found it sufficiently interesting that I think it will be worth trying a diet change along his recommendations to see what happens. My only worry is if taking my (probably toxic) medicine will be a good idea while on a reduced food intake.

Hurricanes and CKD

I called a friend and he asked me if I was well... "Very well" came my eager reply, and when I thought about it I realized I wasn't really lying. Physically I feel great. That is what is so frustrating... to be alerted to an impending doom and being powerless to do much about it.

It's a bit like observing the approach of a hurricane from our home in Playa del Carmen, Mexico. Even though the weather is calm and beautiful, you know days ahead of time that something terrible is coming but there's not much you can do about it except make the best use of the time available (and pray for a miracle, which is my current stratagy with my kidney disease!).

I also get flashes where I think, or want to believe, that this is all just a bad dream... after all "I'm fine"! Oh if I could just turn back the clock...

Sunday

Blood pressure while sleeping
Had wanted to take my blood pressure while sleeping as apparently this determines if high pressure is caused by sleep apnea (the pressure should drop 10% during the night. If it doesn't, sleep apnea is the suspected cause). Unfortunately my wife slept through the night and I forgot to measure during the 2 or 3 times I woke up to urinate (a sign of kidney malfunction, by the way).

I measured my pressure after getting up and putting bathing water on to boil (you know you're in the 21st century when your home has broadband Wifi Internet but no hot water). The first reading was 148/90. After two more readings, the average is 141/90. Still a good bit off the 130/80 target to avoid further kidney damage but better than it's been generally for the last few weeks. Perhaps the medicines are starting to work or perhaps the shock of discovering my mortality has forced my mind to relax my body.

Education
In the shower I get annoyed, yet again, that it took me so long to discover my problem. Annoyed that I never knew about the dangers of high blood pressure... about not being able to breath properly through my nose... about protein in the urine... about looking after yourself generally. Who is supposed to tell you these things? Your parents? Or does the (Irish) government assume that everyone has a friendly family doctor to look after them? If the state invested so much in teaching me diferential calculus (something I have yet to find a use for in my own life), would it not have made sense to have invested in a single visit of a health care professional to my school to explain the basics of looking after yourself? Perhaps a free physical exam (with explanation) as you finish secondary (high) school, before sending you out in the world to fend for yourself?

Over squeeze?
As I take my pressure for the second time today (141/92, average of three readings), and feel the discomfort of my arteries being squeezed yet again, I wonder if there are any dangers inherent in the measurement process itself!

Averages
Lately I've always been taking the average of three succesive readings. This habit started whenever I got a reading that I couldn't believe was so high and so decided to ask for a second opinion. Now that I've been doing it as a habit, I find that the first reading is almost always higher than the next two (at least in the systolic pressure (the first number)). Often the difference is as much as 10 points. Why should that be? Is due to anxiety in the first reading followed by forced relaxation in the second?