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?!
A personal, non-medical, blog chronicling the experiences and learnings of a regular, healthy, person diagnosed with chronic kidney disease (CKD) in 2009 at age 36. Feel free to participate with your own experiences and remember that works or fails for me won't necessarily be right for you. Please don't take anything here as medical advice and always consult a doctor.
Saturday, October 3, 2009
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."
"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:
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:
- Diet: low salt and protein, to avoid stressing the kidneys.
- Blood pressure.
- 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.
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).
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..."!
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:
The best tasting carrot juice combinations I've discovered are:
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
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.
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.
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