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?

Saturday, March 7, 2009

Today is Saturday, the day after receiving the Lab results last night and learning the severity of my condition (at least based on my web research - I have yet to see the doctor to confirm any of it).

The day has been spent in bed researching anything and everything that might help me, from "mindful meditation" to "sleep apnea". Things that jump out:
  • Target blood pressure. To prevent further kidney damage, blood pressure should be maintained below 130/80... my levels have been around 150/90 WITH medication. This is going to be fun... it seems like I am going to have to make some serious lifestyle changes to reduce my blood pressure (like acheiving a zen like state that allows me to relax my arteries...)
  • Causes. It's not clear if the kidney damage was caused by high blood pressure, or the other way around. On one hand I have a suspicion that my restricted nasal breathing (due to a childhood accident) could have caused high blood pressure and this could be the culprit. It was first mentioned to me that my blood pressure was high when donating blood at age 20 (but feeling healthy I didn't do anything about it). On the other hand, I feel sure that my blood pressure must have been measured during the couple of medical exams I've had since then and it was never mentioned (whereas protein in the urine was, so perhaps the kidney disease came first).
  • Prognosis. All the literature talks only about 'slowing' the onset of the inevitable kidney failure. Not too optimistic. One particularly cheery piece mentions that most (> 50%) of people with chronic kidney disease never experience kidney failure... they die of cardivascular problems before that. I'm looking for grains of hope, I really am, but so far I have found very little to go on.
So, it's time to think about ones life and ones priorities... what do I most want to do? Is it really important any more? Shouldn't my main concern be setting my children on the right path in life? Maybe the best thing for them would be for me spend all my remaining time with them, teaching them the little I have learned so far in this life... so that might carry on where I left off in some sort of way. What about the natural world I have always so desperately wanted to conserve? What can I do now to make a difference in the world? Will I have any kind of legacy at all?

Costs
At some point in my reading, it occurs to me to wonder about the cost of a kidney transplant. While there is no conclusive answer on the web, the amounts are quite staggering... a total cost of around $100,000 USD for the first year's treatment, followed by about $15,000 USD a year in medication for the rest of my life (maybe around 20 years after the transplant). Dialysis costs around $45,000 USD a year so it seems like a transplant is the way to go... my wife has already offered (and is the same blood group) but I don't think either of us expected it to be a reality. A near relation would be a better option but I would never ask my only sister (who is about the same age and also has two children) and my father has his own health problems. My mother is healthy but does it make sense to put a 55 year-old kidney in a 36 year-old body? A website mentions children as close relative donors... I don't think I could ever do that, what's the point of taking from your children just so you can live a little longer...

Then I also have to wonder if it wouldn't be better for our children to save the cost of the transplant and the treatment and to let nature take its course... and then I begin to sob for about the first time in my adult life. It's so frustrating for me to be have been let down by my body in this way and to have to make an economic decision between life and death... especially as I'm such a rational person. As the tears subside it strikes me how the passing of many people close to me never moved me to tears, considering their deaths to be natural and "in the scheme of things" but that my own pending death is quite another matter!

Likewise, I was never previously in favor of expensive life-preserving treatments, considering that all that money would, rationally, be much better spent on other things, like third-world children who don't even have clean drinking water (although I have always known that I would probably see things differently if it was my life we were talking about!).

Thoughts about death
If it wasn't for my children, the whole idea of dying in 10-30 years time really wouldn't bother me in the slightest. In fact I had often thought that it would make a lot of sense to set an artificial death date for ones self, ej. 60 years-old, and then work out how to fit everything you want to do in that timeframe. If you reach your death date, you kill yourself. But now with two beautiful girls, it is almost too much to bear thinking about them not having me in their lives, the "strong" father I promised them they could always depend on to protect them no matter what.

Life extension
Now I am in search of a miracle... I intend to completly change my lifestyle and start practising meditation and yoga, improve my diet, improve the structure of my life to avoid stress, stop worrying about the future, enjoy every day for what it is, actively help others, and dedicate myself more fully to my children.

Will it work? Stay posted.

Introduction

In the last few days I have unexpectedly learned that I have Stage 3 Chronic Kidney Disease. This has become such a life changing event for me, I felt I would like to document my thoughts, feelings, experiences and findings, as perhaps they might be helpful to someone, sometime, in a similar situation... or perhaps even my children when they are older.

First the obligatory background:

Blood Pressure
I discovered that my blood pressure was on the high side (140/90) about a year and a half ago but after doing some web research I decided it was "essential hypertension" and there wasn't much I could do about it. I was already living the advocated healthy, low-sodium, regular exercise lifestyle. I did, however, get around to purchasing a home tester (or rather my wife did) and promised my wife I would see a doctor. I took blood pressure readings every week or so and my readings were normally a bit below the 140/90 limit, beyond which it is classified as "hypertension".

Then one day, about a month ago, and after not having measured for a while, the reading was something like 160/95. This shocked me enough to finally go and see the doctor. The doctor wasn't too concerned about the blood pressure level but prescribed medicine (Losartan and Aspirin) to lower it to a "safe" level to avoid possible damage to my heart and kidney's. She also prescribed a urine test.

At this point I remembered that in 2002 a urine test had shown proteins in the urine and the doctor at that time had recommended further testing. About six months after that I had another, unrelated, urine test and it also showed protein but the (different) doctor didn't notice it in the test results and when I asked about it he just said "hmm... it does show proteins... why would that be... hmm..." and finally told me that there was nothing wrong with me but I had to relax more and avoid feeling so stressed (valid advice). Feeling myself to be healthy, I didn't worry further about the "protein in urine" issue and for some inexplicable reason never even researched it on the Internet.

Protein in Urine (proteinuria)
Now, six or seven years later, I decided to research the significance of protein in the urine and was horrifed to learn that it was a sign of kidney failure, with really no other explanation. When the lab tests came back they showed what I hoped (beyond hope) that they wouldn't: protein in the urine. The rest of the results seemed to more or less okay, though, so I wasn't too concerned.

Hypertension Medicine
After 11 days of Losartan and Aspirin, no change whatsoever was observable in my blood pressure readings which remained at 150/90 and occasionally reached 160/100 on the first reading.

Anaylis of the urine and blood test results
Unfortunately the Doctor didn't share my optimism and I although I wasn't too surprised to learn I had a kidney problem, I was shocked to learn that it was a "chronic" (untreatable) problem that would with me for life and that I could only hope to slow further damage. I got some sense of the graveness of the condition when she asked me what medical insurance I had.

She mentioned a "flow rate" as measure of kidney performance and calculated mine as being 40 whereas normal was 100. Although that sounded terrible to me, she described as "a moderate reduction in kidney function but significant". She prescribed a diuretic and another test: 24 hour urine collection.

24 hour urine sample
Now seriously concerned, I started the 24 hour collection right away and took my sample in a 2L apple juice bottle to the lab the next day only to be told that the sample had to be kept refrigerated... I think someone decided it would be even more humiliating that way.

Back home, with fresh urine in the refrigerator, I showed the apple juice bottle to my 5 and 4 year old daughters and explained that they weren't to even think about drinking its contents. "Look", I said, it has my name written on it so you know it has pee-pee. "But we can't read!!!" they squealed.

The results of the test were unencouraginging: a huge amount of protein loss (1800mg) and elevated creatinine in the blood. That evening I went to work seriously reasearching on the web and what I found wasn't exactly encouraging... 40 years ago my condition, "chronic kidney disease", meant certain eventual death but now, thanks to the availability of dialysis and transplants, many people lived fulfilling lives "long" after kidney failure.

I calculated my Glomerular filtration rate (GFR), supposedly the most common measure of kidney function, and found it to be 38mL/min, about the number the doctor had given me. I then looked up a chart categorizing the different stages of chronic kidney disease (CKD) (I have learned that the medical profession loves acronyms, by the way). I expected to be at stage 1 or 2 but was shocked yet again:

Stage 2: 60 - 89mL/min
Stage 3: 30 - 59mL/min
Stage 4: 15 - 29mL/min (prepare for transplant)
Stage 5: < 15mL/min (transplant or dialysis)

This was unthinkable... not only was I already at stage 3, I was not far from stage 4 "prepare for transplant"... how did things get so out of control?