A B C D E F G H I J K L M N O P Q R S T U V W X Y Z Clicking on any of the characters above will take you out to that EHN's General Links page. For more info on Kidneys, click on K . . . and then click on Kidney Disease from Page K.

Opening comments are in chronological order.

Latest numbers . . . June 2008 . . . and counting

Remember: We ALL are stakeholders when it comes to breathing.

Who knows what all affects kidney health? Certainly not the nephrologists I've come to
meet or read about . . . by their own admission. But one thing for sure, drugs -- even
aspirin -- can cause kidney damage, as can dyes used for medical tests. So why not the
overwhelming number of volatile toxins emitted by products containing petrochemically
derived flavors, fragrances and pesticides? Give me a reason why the kidneys aren't
harmed over time by trying to detox the body from all these superfluous toxins.

This page is reflective of my personal experiences with four of nephrologists, three inside
the Kaiser system, one outside. It is also reflective of what I do to stay alive.

The following is not the expressed viewpoint of any other person, living or dead.
It is strictly my own. It's all about me.

Why? Because I wasn't able to find a lot of information on trying to support kidneys
while their function is decreasing. I don't want to go on dialysis; I certainly don't want
to even contemplate having a transplant. Therefore, I am my own case study. I'm not
recommending a damned thing; just read for the info and make your own decisiions,
start by searching further!

Despite the death threats and fear mongering laid upon you by nephrologists, do try
thinking for yourself. Thus far, I've lived a very full, healthful life with worsening
kidney disease. But, I remain asymptomatic and there's that little kernal of something in
me that keeps asking: What IF I support kidney health to the extent possible rather
than further poisoning the kidneys with drugs, will they eventually show the tiniest bit
of improvement? Of course, nephrologists chant that kidneys do not improve. But
there are doctors who believe that all body organs can improve IF given nurturing
care, not further poisoning by commonly prescribed drugs. We'll see. As I've said, I am
my own case study. I hope my experiences serve you well.
Best wishes, -- barb wilkie; January 2006

Friday, the 13th, no less. We had just welcomed Betty Bridges
(Fragranced Products Information Network) at midnight, and Betty and I were
having a gab fest that morning as the phone rang at 8 a.m. I received a call from a doctor
filling in for my internist. She was a tad hysterical about my having to race into Kaiser
Emergency or otherwise I could be dead on the kitchen floor within 24 hours.
She would not accept my statement that my heart was fine, that my body can handle
a bit more potassium. She was adament as the blood test I had the day before indicated
that I had a potassium reading of 6.09 and the allowable high is 5.3.

Betty talked to me ever so gently about it being best to go in. She also knew that Bill was
having troubles with his heart and convinced me that if I'd go, we could get Bill in, which
was really important. With Bill, she told him that if he would consent to go in, he'd be
able to get me in to be re-checked. And so with that, we eventually headed to Kaiser's ER.

I had blood drawn for a potassium check . . . it was already on its way down. I also had
an ECG and that proved my heart was as OK as I had told the doctor it was. I signed
myself out, asking -- and being assured -- that the Urgent Care appointment that was
booked for me against my wishes would be canceled. As it turned out, it wasn't.

Although I was at Kaiser that entire day because my husband did have heart problems
due to deodorizers having been applied heavily to our car, Kaiser hadn't a clue. Now
please keep in mind that line about being dead on the kitchen floor for it rears up later.

My husband's problem was the result of deodorizers in our car. Alas, it was our well-meaning
mechanics who applied the deodorizers because they didn't know that fragrances are
neurotoxins that can adversely affect the cardiovascular system! Because of my having
MCS, my husband did the driving while the little time I was in the car I had my head
out the window. As it turned out, I was spared the severe health effects, but he had
them. It is the only time his heart has ever gone haywire and with no other reasons for
the readings -- and he was tested around the clock -- the doctors agreed that it was
the deodorizers that caused his adverse events that kept him in the hospital two days.

But, while I was at Kaiser, along with Betty Bridges, who really got both Bill and me there,
no one in Kaiser out side of the Emergency Room knew that I had been seen by doctors
in ER. Why? Because ER has to download a chip for the information to get into the
main computer system. Not only that, they seem to take their jolly good time to do
just that as by 4:30 the following Wednesday, there still was no computer record
available, showing anyone that I had indeed gone into Emergency on Friday the 13th of
April 2007. Now ain't that somethin'?

So, unfolding in other areas of Kaiser, where no one had a clue as to where I was that day,
they decided to call and call and call my home some more, trying to reach me.
By dinner hour, Betty and I had gone to eat, and then were on our way back, having
also talked with our local daughter who we knew was on her way down to Kaiser
with her son in tow.

Betty and I were about a block from the ER, when my cell phone rang. "Oh, Lord,"
thought I, "Bill." But when I answered, I heard, "Berkeley Police Department." Sigh of relief.
Not about Bill. "Oh, Lord, Liz . . . " but then the voice said No, it is Barbara
Wilkie, we are worried about. Me????? "Well, only if you are Barbara Wilkie," replied the
officer. I assured her I was and I asked again about Liz. She replied that she knew
nothing of a Liz, that she was told to look in on Barbara Wilkie who was undoubtedly
dead on the kitchen floor.

Well, that's kind of funny now, but when I got home late that night with Betty from
Kaiser, there were about seven phone calls from Kaiser trying to reach me to convince me
that I was going to be dead if I didn't get right into Emergency. Apparently no one
thought to call down to Emergency to see if perchance I had arrived. But call our
house they did. OVER AND OVER AND OVER AGAIN.

But, they don't give up easily. Because I never answered the phone -- because I was at
Kaiser! -- they sent out the Berkeley police officer. And when she couldn't reach me by
rapping on my door, she went next door. When she told our neighbor that I was dead on
the kitchen floor, he said, "NO WAY! I was just talking with her." The officer didn't
fully believe our neighbor so he gave the officer my cell phone number and that's how
and why she called me.

I told her I was with Nurse Betty, we were both doing fine, I just saw my daughter walk
up toward ER, so she and her son were fine, and now we're heading in to visit my
husband again. I thanked her for her concern and she said she'd call Kaiser. But, of course,
Kaiser was closed up for the night. The next morning, the phone calls started
again, but of course, Betty, Liz, Niko and I were all back at Kaiser. Eventually I got it all
straightened out and was assured that shortly Kaiser would have a systemwide
computer network and they'd not have this trouble again. I strongly suggested they use
the phone to try calling within their own facility first before assuming someone is dead
on the kitchen floor.
-- barb; April 13, 2007

Diet stuff changed a bit in June 2007.
See A scary venture: Flying in the face of medical "wisdom".] Kidney disease and the no-drugs approach . . . my wishes go against doctors'
advice. But, by doing it my way, I have had a very healthy, active two years. Now it
is a year more than I was told I'd have to live or live free of dialysis! But doing it my way,
I have been healthy. I've enjoyed life and my family. I've seen my 50th anniversary,
and celebrated it with all our kids and their families at Stinson Beach. Who could ask
for more? Not I. Well, maybe I could ask that my husband be free of prostate cancer.
-- barb; August 5, 2007

August 8, 2007 . . . I'm past the "Check out" prophecy of the first nephrologist
by more than a year, and still ticking.

Still living the NO drugs apporach to dealing with kidney disease. My kidneys
have continued to create urine, they simply do not clean the blood, nor do they send out
the hormones to control blood pressure and to create red blood cells. In that way, I live
with stage five kidney disease.

It's not that I'm doing nothing, for as you read below, you will learn I'm doing lots of somethings!

First, diet. And then, acupuncture, chiropractic, alternative health care through a medical
office, jade ball healing and massage therapy. I've been in the business of staying alive
and so far, that has worked well for my family and me. And, most importantly, thus
far, I've enjoyed a quality of life that never would have been mine had I followed the
advice of the nephrologists and taken their prescribed drugs and dialysis. I'm a month
away from my second anniversary past my first death sentence and still feeling relatively
good . . . despite relatively bad numbers.

The fourth and latest "deadline" I was living under was for Christmas 2007; so far I still
feel relatively great! This is still the no drug, no dialysis approach to living with kidney disease.

I've also declared my own moratorium on seeing nephrologists as so far none have
figured out a way to help an already chemically injured patient who cannot tolerate
petrochemically derived drugs. They, to a man, have never heard of such a thing as MCS.
I've suggested that could be a reason why 100,000 die each year in hospital from prescribed
drugs and have added that I don't want to be reflective of that statistic. I'll let my kidneys
die naturally . . . while I try to support them as long as possible with good nutrition,
supplements, acupuncture, chiropractic and help from my inernist and EI doctor, too.

No way do I mean to convey that THIS is the way to treat all others who live with
stage 4 or 5 kidney disease. I simply state that my methods have worked very well for
my family and me and IF you, too, are chemically injured and cannot take
modern, petrochemically derived drugs any better than you can take modern products
that contain petrochemically derived flavors, fragrances or pesticides, then by all
means talk over diet, et. al., with your doctor and your loved ones. We are allowed to say
NO to medical treatments that will cause us more harm. Those who don't, wind up
dead or disabled by doctors and that is called IATROGENESIS.

I must admit that I've now lived long enough to be thankful for having MCS. WHY? You
may well ask. But, had it not been for my living with MCS -- and having already lived
through a version of hell through the use of prescribed drugs during the worst of my
chronic lung and sinus infections, thanks to a workplace ripe with petrochemically
derived fragrance products -- I never would have had the strength to say no to the
doctors' attempts to get me on a variety of drugs. Drugs that can be harmful to kidneys,
no less. But, from their perspective, What's the problem? They know you are
going to die anyway, and in the meantime, they can try you on dialysis. What other
options do you have with kidney failure???

Well, you can choose to live healthfully, without drugs and then die a natural death rather
than one hastened by pharmaceuticals and medical practice. And that is what this page
is about. My living while dying.
-- barb; June 30, 2008


Wikipedia, the free encyclopedia defines Chronic Renal Failure
http://en.wikipedia.org/wiki/Chronic_renal_failure

Experience with nephrologists:

First (Kaiser, Oakland) . . .
Second (Kaiser, Santa Rosa) . . .
Third (Kaiser, Oakland) . . .
Fourth (UCSF, San Francisco) . . .

To the beginning of my blood readings info

General information regarding kidney disease . . .

Specific info . . . various items, including home diaylysis

June 2007 -- A scary venture: Flying in the face of medical "wisdom"

Dear Folks:
The following states it . . . what I've been saying about my body and the fact that I choose
-- against many protests, mind you! -- to go it without drugs! -- barb

ALLERGIES AND CHEMICAL REACTIONS
by Grace Ziem, M.D.,DR. P.H.

"...The detoxification system may be impaired, occasionally genetically but more
commonly because of past toxic exposure, and the individual may have more difficulty
detoxifying. This can cause them to have reactions at dosage levels that would be
less of a problem for healthy individuals with normal detoxification. It is important to
recall that the vast majority of pharmaceutical agents are derived from petrochemicals
and must be detoxified by the body using the detoxification system. Therefore, an
individual who has impaired detoxification may have more difficulty tolerating
medications ..."
http://www.mcsbeaconofhope.com/drziemalrg.html

January 2006
Looking backward over the past half year . . . And forward -- how long is anyone's
guess. The nephrologist guesses another half year. At this point, I remain asymptomatic.

I'm posting my information here because, in the first place, there is precious little research
available on kidney -- renal -- disease being treated without drugs. At least, I've found
zero, zip, nada. None. So, for people living with the effects of chemical injury, who
cannot take pharmaceuticals, there is a horrendous dearth of information. Feel free to
learn with me as I try to dodge or delay mainstream medicine's pharmaceutical,
dialysis and transplantation approaches. Follow along with me on my new journey:
Empirical evidence (observation and experiences), if you please.

The kidney news hit me like a bomb in mid-July 2005, when I learned through a routine
blood test, and repeated tests, plus sonogram, that I was into Stage 4 kidney disease.

Hell, I didn't even know I was in stages 1, 2, or 3 . . . or that I was capable of jumping from
an earlier stage to Stage 4 in one fell swoop. But the sonogram showed my left kidney to
be 9.6 cm (3.77952 inches) and my right kidney to be 9.3 cm (3.66141 inches). According
to what I read in a book by Mackenzie Walser, kidneys are about 5 inches long. As I've
not had a baseline kidney measurement -- at least not that I know of -- I have no idea
if I was born with smaller kidneys or if my kidneys have shrunk that significantly. I
was told the sonsogram shows that my kidneys have shrunken to the size associated with
a nearly 90-year old individual. I was just 67 at the time. And feeling better,
MCSwise, than I had felt in years. How ironic.

My info will be in chronological order, so the latest info will be below. You can jump to
the latest numbers if you've been all through this before.

Let's start with a couple of definitions:

ARF. Accute Renal Failure. Or in my case, diagnosed as: "accute on chronic renal failure."
CRF. Chronic Renal Failure.

So, despite how great I feel -- and 2005 dawned with me feeling better MCS-wise than I had in
20 - 30 years! -- I do heed the advice to seriously limit foods rich in protein, potassium,
magnesium, phosphorous and sodium.

What I couldn't take seriously was the two-paged food list from Kaiser, via a well-known
lab. The problem with the food suggestions given me by a Kaiser nephrologist is that I couldn't
and wouldn't eat half that junk in the past. It listed too many mainstream items that were too
heavy on the petrochemical-derived flavors, dyes and sweets. Alas, for whatever reason,
I could not convince the doctor that while it was good to have a list of vegetables and
fruits from which to choose, I was not going to eat the named main brands that carried
synthetic ingredients. Period. Also, Kaiser recommended eight ounces of meat a day,
which, I've come to learn by other standards, is too much. Way too much. By year's end,
I began following Mackenzie Walser's plan that strictly restricts meat protein and
supplemented my diet with amino acids, as suggested. See reference below.

ARF. "Tain't funny McGee!" (Those in my age bracket will remember that line from a popular
radio show, Fibber McGee and Molly.) But, as some diabetics can live shot-free by
regulating diet, I hope to live longer -- and dialysis-free for an extended period --
by controlling diet, despite the dire prediction by the first nephrologist I saw.

First experience with a nephrologist . . .
In July 2005, following freak-out time by an internist -- not my own -- when my blood
creatinine level popped up to 3.2 from it's previous 1.4, I was booked in to see a kidney
specialist, a nephrologist. I had wished to wait until my own internist returned from
vacation, but my wishes were overruled. Had I been able to first speak with my own
doctor, perhaps it would have been arranged for me to see a different nephrologist. If
that were the case, the diagnosis would have been the same, but maybe the delivery
would have been kinder. At this point, I can only imagine.

The visit got off to a hellacious start. The waiting room of Nephrology/Pulmonary
(Kaiser Oakland) was loaded with heavy perfume. Naturally, I wore my respirator. The
nurse (or medical assistant,), while taking me back to the exam room, said as if explaining
to an unaware child: "You don't have an appointment in Pulmonary -- that's your lungs --
you have an appointment in Nephrology -- that's your kidneys."

ARRRRGGGHHH!

Although I felt like yelling ARRRRGGGHHH!, I told her as evenly as possible --
muzzled as I was with my respirator on -- "I know that. I have to wear my mask because
of all of the perfume in the waiting room. As we entered the exam room, she told me in
a condescending, simpering way, "Even our pulmonary patients wear perfume."

To that I spun on a pivot -- I should have pivoted so well in my tap dancing days of the 1980s
" -- and told her, not so evenly: THAT IS THE FAULT OF KAISER AND IT'S DOCTORS.
THERE IS NO INFORMATION GOING OUT TO THE PATIENTS OR THE STAFF ABOUT
THE HARMFUL PETROCHEMICAL DERIVATIVES COMBINED TO MAKE MODERN
FRAGRANCES AND PERFUMES THAT POLLUTE THE AIR FOR EVERYONE."

She had the last -- albeit silent -- word: She simply left and closed the door. With authority.

Stage set. Nephrologist enters. And gets my dander raised by first telling me that "Although
we've never met," he "knows AAALLLLLLLL about" me. That stated as he bandied his
paper, which contained the past records of my blood tests, under my nose. A rude
beginning, so why does the rest of the interview leave me shocked?

The very next thing he did -- this man who knew aaallllllll about me -- was
to ask in a most patronizing tone: "And, who cooks for you, Ms. Wilkie?"

"Who cooks FOR ME????? I cook!," I replied incredulously, first parrying his inane
question with a question.

In his same patronizingly simpering tone, he queries further: "You cook for yourself?"

Trying for the necessary emphasis, I exclaimed, NO!!!!!!!!! I cook for my husband,
our kids and their families, our friends . . . and for myself. I cook. And, I do dishes.

That exchange set the tone for the whole visit. He never accepted any of my responses
without questioning me further. While the preceding is the opening dialog, the method
was the same for checking symptoms, whatever. Once, obviously was not enough for this guy.

And then there were a few more ridiculous questions . . . especially preposterous since
he's already claimed to know ALL about me. Oh, boy, was I in for a ride and a half. And,
it only got worse in so many ways. The funny thing about it all -- in retrospect -- was
that I passed his assessment of whether or not I was alert. But at the time, there were
at least three things that I took umbrage with, and my guess, later, is that those items
were reflective of his little hidden "alert" tests of me. Remember, all this was coming
down with me already poisoned by the air in the waiting room. Despite mask.

He also did a mental number on me, stressing the fact that I was a sick puppy, scheduled
to be dead or dying in a year -- the date, July 26, 2006 -- if not on dialysis or getting a
kidney transplant, which takes years so they counsel you to go through all the hoops
and over all the barrels to get on the list so you can get a transplant 6 or so years down
the line. Yeah, at my advanced age. Sure. And ne already living with the effects of
chemical injury. I cannot take drugs. Drugs are petrochemically derived. Fragrances and
pesticides used with gay abandon by others in my former workplace stole my health
from me. And now, I've been diagnosed with stage four kidney failure. How can I even
consider a transplant? Let alone the surgery for dialysis? Let alone the drugs they
want to foist upon me because that's the only way they know to treat kidney patients?

Anyway, the date I was to be on dialysis or dead sticks so well because it is the birthday
of one of our grandchildren. The fact that my creatinine level had dropped 12.5 percent
in two days without my doing anything about it, other than the re-test, meant nothing
to him. And, to give him his due -- and maybe due to the fact that I was poisoned more
by pesticides and fragrances, etc. -- it has proven true that that 12.5 percent drop did
ultimately mean nothing.

I guess the capper of that whole session was when he said, I'd "Check out" in a year. But
he did not stop with that comment, he added, in his supercilious best . . . "You do know
what I mean by 'check out,' don't you?" To which I replied, succinctly -- and, yes, it could
be argued, disrespectfully -- Drop Dead!

Of course, he could be proved correct. But, what a delivery system for news like death!
Death in a year, or at best, life with feeling extremely sick and having to go on diaylysis
and drugs, just to remain alive. That is living? I don't think so. But, we'll see.

Yes, it can be argued that he did my hubby and me a favor by making us see the
necessity of dealing immediately with items we've always put on hold. We both felt
healthy -- well for me, that was healthy despite or around my living with MCS. And there
were a few times during the worst of my MCS days -- days I was still working in a
very toxic work environment (government agency) -- when I felt like death was definitely
extremely close. But that was different. Far different from being told by a doctor that you'd
"check out" in a year and better get your affairs in order and tell your children. Frankly, it
is simply a lot easier not to think of one's demise and what happens to the kids and
your stuff -- relatively little, in our case -- if you leave it to go through probate. But
ultimately, it's easier to get the legal details taken care of, then they can be put on ice while
you go on with living. One hopes.

I argue that the doctor's methods could be much improved. As could his recording of
information. When I read his assessment of my appointment, I learned that I had been a
smoker. I have never smoked, although it is now recorded for posterity that I was a
smoker. So much for accurate records. But, there's more . . .

Yes, his delivery was harsh. My husband's assessment; I didn't have words to describe it.
And it sure felt like he was pounding a drum as he kept up his argument . . . and the
"drum" was my brain. Of course, I kept pointing to the drop of creatinine and potassium
in just a couple of days. That seemed significant to both my husband and me. What did
we know? Only that the body with support can heal. It has happened to brains, hearts,
livers, nerves. Why not kidneys?

Alas, I can't shake his negative attitude when he repeatedly stated: "Kidneys do not heal."
Well, maybe not when you load them up with drugs to detoxify.

His oft-repeated: NO, NO, NO; PROGRESSION, PROGRESSION, PROGRESSION still
rings in my brain. (The drum pounding referenced above.) All of that, despite the
fact that I had none of the symptoms either of the doctors -- an internsit I didn't know and
the nephrologist I saw -- kept asking about. And to my making that point, I was told:
"That is why they call kidney disease a 'silent killer'."

He may be right, but I declined his suggested treatment with drugs from which I have
already suffered advese events. I told him I'd do the lab tests he wanted, but in my own
time frame . . . I'd not immediately go to the lab that was sure to be scented. (I go to labs
very early in the morning in an effort to dodge as much fragrance poisoning as I can.) He
huffed his exasperated best. So sad for him to have a patient who just didn't get it . .. How
much sadder for an MCS patient to have to be with a doctor who just didn't get IT!

I promised I'd do the sonogram, but I refused the mid-morning time I had been assigned,
despite my clearly stated request for the earliest possible appointment of any given day.
I had even explained that with a very full bladder -- necessary for that sonogram -- encountering
scented people would be a disaster equivalent to the Great Lakes finding their way to the
floor of Kaiser's sonogram area. Again, my seeking 8 a.m. appointments is my effort to
avoid as much fragrance-poisoning as possible, but I do need cooperation. Fragrances
often cause one -- including me -- to have an "overactive bladder," which, around certain
fragrances, I can scarecly control. And when forced to drink a quart of water . . . Well,
the Great Lakes analogy may not be so much an exaggeration after all. (You can tell I
grew up in the midwest with the Great Lakes reference; I never thought of the Pacific
Ocean, yet have played in it many a time in my adult life.)

Maybe he was ever so correct that I've got kidney failure with no hope of healing. But, if
that is the case, I want my last year to be a good one, free of illness caused by drugs.
I want to live life while dying.

Call me in denial if you wish, but I know all too well that for years the mainstream medical
doctors claimed that brains, hearts, livers, nerves didn't heal. And then, goodness gracious,
me oh my, there were cases of those organs healing. Well, maybe, my kidneys can heal
if I don't load them up with the pharmaceutical industry's petrochemical-derived
products. Has anyone tried a non-drug approach? Has anyone tried to heal kidneys?

I'm hopeful that at the very least, in doing it my way, that I'll have one last year of still
feeling very good, while going into that "PROGRESSION, PROGRESSION, PROGRESSION,"
so forcibly predicted by that first nephrologist.

I do keep in mind that it isn't just my creatinine readings that are high, but also the BUN.
It has bounced around a bit: 27, 26 and as low as 21, back in August 2005, which was one
point above high normal. What is good news in all of this is that Phosphorus and
Potassium are now in the "normal" range and have been since August. They were out of
whack last July, along with the creatinine and BUN readings, but simple attention to diet
brought them in order. I hope I can stick to a strict diet and stave off death/dialysis

In July, I had been eating up yogurts not eaten by the grandkids -- I usually avoid dairy
because of my uterine and pedunculated tumors -- and I'd been eating lots and lots of
melons, tomatoes and potatoes. I have always known that banannas contained lots of
potassium, and ate them because of that, plus I liked them. But I quickly learned
that avocados, artichokes, spinach, tomatoes, potatoes, celery, melons, and so much
more "good food" also contain high quantities of potassium and magnesium.

Bye, bye watermelon, et al. Too high potassium I'm warned plays havoc with heart and
brain. Conventional medical wisdom states that I could heart attack or stroke out.
Dead sooner than the kidneys taking me out, and yet, it would be because of kidney
failure that I'd have the heart attack or stroke. And, IF any of that should happen, I'll go out surely blaming the FDA for not having real AUTHORITY over the cosmetic industry.

>

The nephrologist rejected my suggestions that perhaps it was a matter of my recovering
from our trip and the work I did on our house before leaving. I asked if my already
chemically injured body could have been adversely affected by: our spring travel, my
eating more meat than I had in years -- for after all, I felt great for the first time in 20
or 30 years -- our house rewire/kitchen rehab project, fun with entire family, more
travel and hikes in extreme heat, plus probably not enough hydration with water, but
too many iced coffees? And not just iced coffee, but loaded with cream and sugar.

You can only imagine the rest, when I went on to mention the assault of the perfume and
fragrance products, plus pesticides. Of course, I had encountered some of the chemical
wars going on in everyone's breathing space during our travels. And, of course, in my
own neighborhood when fabric softeners are used by others within blocks of our house.
That is anothr serious assault. But to have to be subjected to a chemical warfare zone in
Kaiser in general -- and in, of all places, the Nephrology-Pulmonary waiting room in
particular -- THAT seems too much. Will Kaiser ever "get it"? I've tried to help them
for so many years . . . now, by their account I'm running out of time.

To my wondering about poisonings by fragrances and pesticides, and if I could heal with
support, the answer was: "NO, NO, NO. PROGRESSION, PROGRESSION, PROGRESSION"
No springing back. No even slowly recovering. Just take the drugs, do the dialysis, do the
transplant. Or, do the dying.

I still am hopeful that it was all of those assaults to my body that may well have played a
role in my high creatinine and BUN readings. Drugs affect those markers and they are
petrochemically derived. Why couldn't other petrochemical-derived assaults?
However, the impression given me was that I was seen as dreaming up excuses.
Playing the ol' denial routine. Well, maybe so, but it's the cantankerous patients who
reportedly fare better. I hope to be one.

And, speaking of cantankerous . . . The experts state that there are two major causes of kidney
disease. -- among many causes. One is diabetes and the other is high blood pressure. Well, now,
this renal patient wonders out loud: WHEN THE HELL WILL THE MEDICAL INDUSTRY
GET IT ?

GET THE FACT THAT THE PLETHORA OF PERFUMED PRODUCTS HAS POISONED
OUR AIR, OUR BODIES, OUR LAND AND OUR WATER! OUR KIDNEYS.

GET IT that synthetic scents can adversely affect the cardiovascular system!

GET IT that petrochemical-derived fragrances can poison various other body organs, like
the skin, lungs, liver, kidneys, also the nervous systems and brain!

GET IT that products containing petrochemical-derived fragrances poison people who are
only secondhand users!

GET IT that kidneys process toxins!Including those toxins (flavors and fragrances)
sold without full substantiation of safety, and without a hint of warning by the FDA

GET IT that having a scented healthcare facility is only making patients sick . . . and those
already chemically injured are put in further jeopardy and on a race course to premature
death. Health care WITH harm! Hippocratic Oath or is it the Oath of the Hypocrite?
Of course, most doctors do not fall into the later category. Alas, some do. Caveat Emptor!

GET IT that whether mainstream western medical doctors are adequately trained to
diagnose the symptoms of chemical injury or not, chemical injury is REAL and
petrochemical-derived fragrances KILL.

The exceptions from this list of symptoms, is that fragrance poisoning, be it perfumes or
fabric softeners or other fragranced products, can and do cause my tumor to throb.
Fragrances also cause instant sores -- that look like acne -- to appear, mainly on my
face, neck and arms. Additionally, fragrances cause neurological reactions -- beyond
just spking my blood pressure -- such as blackouts or dizziness (not at the same time --
I'll have one reaction or the other, but not first dizziness and then blacking out), or my
feet feel as if they are flying away from my body . . . the right feels as though it sails out
to the right, the left feels as if I've stepped upon an ice cube and that it is sailing out in
front of me. While my feet actually are walking properly, the feeling is so strong that
I have to hang onto my hubby when poisoned by some of the very scented products
or people I encounter just trying to live. The other exception is that pesticides caused
my skin to crater into very deep, non bleeding, very slow healing, sores. It seems to
me that looking for mere itching will be nothing by comparison. Of course, fragrances
and pesticides cause upper and lower respiratory infections . . . I always seem to pop
incredibly fast into full scale infection with the accompanying fever and yellow green crud.
Acupuncture and chiropractic saves my bacon time and again.

The list given on RenalInfo is:

• A metallic or other foreign taste in your mouth
• Tiredness
• Feeling cold
• Headaches
• High blood pressure
• Insomnia
• Itching and dryness of the skin
• Loss of appetite or nausea
• Pain in the small of the back in the area of the kidneys
• Poor concentration, confusion, forgetfulness
• Poor sex drive
• Restless or cramped legs
• Shortness of breath
• Swelling in the hands, feet, or face, especially around the eyes,
  when you just wake up)
• Urination problems, such as foamy or bloody urine, more or less
  urine than usual, or a change in how often you urinate

Just think, the tests I've had done within this past year, the very ones proving that I do
not have allergies are all out-of-pocket expenses for me. Medicare didn't cover a
one. And, to think, for all these years I've stated: I DO NOT HAVE ALLERGIES!, I
have been chemically injured! Well, I'm down a bunch of bucks, but I've got results to
prove that, son of a gun, I do know my own body!!!!! Well, at least regarding that aspect.
It's good to know I'm remarkably free of allergies and that all I have to contend with
is chemical injury. Now, what to do about the kidneys????

I have said down through the years and I'll say it again, When the lid blows off the
flavors and fragrance industry, it will make the tobacco industry look like small potatoes.
Will I live long enough to see my words ring true?

Of course, there are research dollars needed to PROVE what we all know to be fact. Not
just from our own lives, but from research done by others in Europe and Japan, as
well as by some brave souls in the USA. But so far, research takes money and the flavors
and fragrance industry has a very strong lobby, and the mainstream media certainly
will not inform the public fully because their advertising coffers are filled by the flavor and
fragrance industry's advertising dollars. Add to that, the burgeoning drug industry, what
with all the products to help people feel better while the flaovrs and fragrance industry
continues unabated to release superfluous toxins to market without so much as an FDA-
supposedly-required warning . . . and . . . Well, you figure it out. Money talks; they
cannot hear the already chemically injured over the ca-ching, ca-ching.

In the meantime, kidney disease is one of those many chronic diseases with soaring
rates, leading to premature death, which our experts simply claim to be "unexplained."
Yeah, try looking under your collective noses. At ubiquitous petrochemically derived fragrances
flavors and pesticides. Start a database of illnesses, with this question asked: Do you use
products with "fragrance" on the label? For personal care, as well as cleaning and
maintenance projects, and including disinfectants and pesticides, and of course, air
"fresheners" and fabric softeners. Are the products you use claiming to be "unscented" but
actually contain "fragrance"? Until such time, BUYER BEWARE! Caveat Emptor!

So the bottom line is: People exposed to the petrochemically derived flavors and fragrances
get sick. But the industry's bottom line is quite healthy, as is the bottom line of the
pharmaceutical/mainstream medical industries, which, of course, benefit greatly from
folks getting sick on products containing petrochemically derived flavors and fragrances.

Fragrance use in school means education and health is hampered for students; if the sickened
are teachers or other school personnel, their careers are adversely affected, as is their
health. For those in the healthcare industry, or a law offices, or in government agencies, . . .
well, they can have their health stripped and their working lives made miserable for them,
and it is not considered discrimination, nor harassment. Those who are newly employed,
can be fired at whim. It becomes a vicious cycle. And yet, it doesn't have to happen at all.
Just keep petrochemically derived fragrances out of all public areas. Especially,
healthcare facilities and retirement residences! There ARE safer alternatives to use.
It IS all about breathing. We ALL are stakeholders when it comes to breathing.

Fortunately, the offices of my chiropractor and acupuncturists, and soon I hope, preventive
medicine doctor, are fragrance-free. Interestingly, they all think I can maintain for a
longer while and they look forward to my kidneys healing a bit. But, even if my kidneys
don't heal, I want my year to be as free of illness as possible. And as I've already had my
turn at adverse reactions to a lot of different drugs, early in my days of severe
reactions to fragrance products in the workplace, I feel I now have enough sense to say:
ENOUGH IS ENOUGH!

I'll keep you posted as long as I'm around and able. Watch this space.
[Above written January 2006, from notes and memory.] -- barb wilkie

Creatinine readings 2005:

   July 20 -- 3.2 . . . I had already planned to return to veggies the day before
this blood test was taken, hence I ate a lot of tomatoes, celery, watremelon.
Little did I know I was consuming large quantities of potassium. BAD!

   July 22 -- 2.8 . . . when I learned on Thursday to stop tomatoes, dairy, etc.,
I did and so Friday's retake showed a drop of 12.5 percent. Nice.

   Aug. 9 -- 2.6

   Aug. 31 -- 2.5 . . . so far looking good . . .

   Oct. 25 -- 2.9 . . . bummer! But, I stupidly took a hike and forgot my water bottle less than
24 hours before the blood test. Did lack of hydration affect the creatinine reading? Or,
has it been up since the pesticiding of utility poles -- without warning! -- on our block
and in front of our home? Don't know. Didn't have a blood test in September.
Now I wish I had before Sept. 27, and then one after. That would have been worth doing
and given a better clue as to full adverse effects suffered due to pesticiding utility poles.
There was no doubt that my respiratory system was tanked because of the pesticides on
our block and in front of our house. In supposedly "pesticide-free" Berkeley, no less.
Why no warning??????? And, I couldn't get anyone in Berkeley to give a damn. Had
to turn to Alameda County for information.

   Dec. 8 -- 3.1 . . . Well, damn! But then, I was still following the diet given me by
the nephrologist in July, not eating more than 8 oz of meat a day. With heartfelt
thanks to Betty Bridges, I have since read Coping with Kidney Disease: A 12-Step
Treatment Program to Help You Avoid Dialysis Mackenzie Walser, Betsy Thorpe;
ISBN: 0-471-54336-5; 240 pages; April 2004; US $16.95.
http://www.copingwithkidneydisease.com/

A very low protein diet is the recommended trick, along with taking essential amino acid
supplements. We'll see. I'll keep you posted for as long as possible.

    Dec. 14 -- 3.0 . . . A tiny improvement but that improves my
outlook a lot! A whole lot!!

Had a wonderful time with the entire family gathering at youngest daughter's. All six grandkids
together again, with parents and grandparents. We've a tremendous family. We are blessed.

Creatinine readings 2006:
   Jan. 18 -- 3.4 . . . Double damn! But then I discovered in Dr. Walser's book
(given me by Betty Bridges) that one should not test for creatinine without
treating for acid stomach and just guess who was indulging her appetite for pickles.
Pickled onions, okra, cucumbers, etc.

Off of stinging nettles and other herbs for now, but still taking Rehmannia and Co-Q10 and other
stuff. I hope to build a list of supplements to link to, so folks can follow that, as well. And, before
blood tests, I'm also taking TUMS -- plain, not artificially flavored or colored -- [that was
short lived as I quickly developed adverse reactions to that product] in addition to the
calcium and magnesium. In a further effort to curb an acid stomach, I'm occasionally
drinking 1/2 tsp of baking soda in 1/2 cup of water AND staying away from highly
acidic foods. Hard to avoid my beloved Pub-style pickled onions, though.

Was seen by a holistic doctor in Carmel, and underwent a series of tests. All through the years I
have maintained that my problems were related to petrochemicals. Hydrocarbons! And with the
plethora of products released to market with petrochemically derived flavors and fragrances
that have not been substantiated for safety -- INCLUDING PHARMACEUTICALS! -- it is
no wonder to me that my health tanked in a workplace that catered to those polluting
the air. Now these test results prove that I knew my body and knew what I was talking about!

Which means that that should give hope to so many others who react only to
petrochemically derived products. I was then referred to Dr. Joel Lopez, formerly the
Associate Director of the San Francisco Preventive Medical Group ( his own pages at
http://www.journeytowellness-sf.com// or synergymedical.com).
Dr. Lopez has methods for detoxing patients, and he knows about the harmful effects of
drugs for people such as myself..

By the bye, I'm thankful I have medical coverage, but trust me, it does me little good for renal failure!
Kaiser doesn't cover my holistic/alternative/complementary approaches and so therefore all tests,
office visits, detoxing methods are out-of-pocket expenses. Because these tests and visits are not
covered by Kaiser, they are not covered by Medicare. Nonetheless, my medicare payments
go up and up and up, just like others -- except, I have to pay for Medicare out-of-pocket. Every
three months. But other folks have their visits, treatments and prescriptions covered
because they are willing to do the drugs and suffer the consequences. To my mind,
this is not equitable -- CalPERS pays Medicare costs for state government employes, but
not for employees of public government agencies -- but then, nothing about
chemical injury is equitable for anyone living with it. Nor for those living with those who
have it. Despite it all, I count my blessings -- for most of all, I still feel good and can still
enjoy time with family and friends.

   Jan. 31 -- 3.3. . . . Well, here we go again, a drop by only .1 but it's only been a
couple of weeks and nurses have told me that creatinine levels are very slow
to drop.

   Feb. 7 . . . No blood test at this time -- gave him copies of previous
tests -- but Dr. Lopez, then with SFPMG [now with his own practice, Journey to Wellness
at, http://www.synergymedical.com or http://www.journeytowellness-sf.com ]
wanted me to do a 24-hour catch and proceded to give me a couple of jugs for the catch.

For a 24-hour catch, you do not "catch" your first morning release of urine. However,
you then catch all urine from that point forward, throughout the day and night and
include the first void of the following morning. Then you are done. Simple, really. Then
you take in your fresh catch to be analysed. That's it. But I went further than that and
also kept a record of amount of liquid in and liquid out . . . and the numbers
were about even. Kidneys appear to be working better than any blood serum creatinine
reading test I've been given by Kaiser. So now for the results, which were given me
on February 23 -- a remarkable day anyway, as it is the birthday of my childhood
playmate, my third child and my fifth grandchild . . . and now, it is the day that I was
looked upon as "normal." Yeah, me! Normal. Well, we'll use cautious optimism here --
next blood test coming up March 7.

   Feb. 23 -- 1144 . . . but, the range is: 600 - 1800. Yeah, me, normal!
If only for creatinine in urine.

March 7, 2006

Well, I'm preparing for the fact that the Kaiser nephrologist may be correct and I'm going to
"check out," as he put it, by the end of July 2006 if I don't go on dialysis or have a transplant.
To even think transplant means an additional five or so years into the future after a
screening, so it seems to me, they loosely bandy about the idea of transplant.

However, I'm flumoxed by the fact that my creatinine clearance through a 24-hour urine
catch is normal, while creatinine is steadily climbing in the blood serum analyses. I still
feel great kidneywise, and still enjoy life to the extent possible considering my body is
constantly poisoned by perfumes and fragrances used by others -- including staff, patients
and visitors at Kaiser. Kaiser Oakland has proclaimed to me that it is "fragrances sensitive."
I wrote back that they were fragrance sensitizing, pointing out the obvious difference.
I never heard back.

IF you have a management team that doesn't believe in cleaner air for all, and doesn't put cleaner
air regulations and policies into place, please consider leaving. I suggest you leave before your
body becomes as thoroughly poisoned as mine by those superfluous chemicals such as fragrance
products, pesticides, new carpets, constant paint jobs, etc. Of course, finding a job in a workplace
with safer air is difficult, and especially if you are an older worker. But if possible, don't try to
educate those around you as I had, for you will only be making your own condition worse and
no one GETS IT until they too learn for themselves just what chemical injury is. That's when
they GET IT. Then, it is too late for them, too.

For years I've been reminding people of the adage, An ounce of prevention is worth a pound of
cure. Now some cities, like San Francisco, invoke the Precautionary Principle. Hey, people, it's
time you start asking yourself if a petrochemically- derived product is necessary. There are
alternatives. Get to know them while you still have a modicum of health. You'll certainly have to
learn of alternatives once you go into the MCS abyss. The one way we can continue is to
practice avoidance. But that becomes next to impossible when you live and work where others are
still imbued with mainstream industry advertising; so much so, they feel they HAVE to use
artificially flavored and scented products.

You never get truth in advertising, for if there were truth, you'd learn of the harmful chemicals
you are welcoming into your body and the bodies of your offspring, from womb on. Instead of
various fragrances being advertized as if they were just squeezed flower petals and citrus fruit,
you'd be told they were cleverly crafted -- derived -- from petrochemicals. The industry couldn't
tell you that petrochemically derived scents are identical to those found in nature. (These days,
I've improved enough that I can be around pure, steam-distilled essential oils, yet I cannot be
around petrochemically derived scents.) And you'd learn that fragrances do not clean. The
industry recognizes that, they just don't openly tell you that while enticing you to use their
scented products. And, despite industry advertising to the contrary, there is nothing
FRESH about any man-made scent. Stop being duped.

Do you REALLY need to have these particular poisons in your life? That IS the question
you must ask yourself. Your doctors aren't educated enough in the field of environmental
illnesses to inform you properly. IF they were, they'd sure not have their pulmonary,
kidney, cardiovascular, cancer, headache, ADD, ADHD, Alzheimer's, Parkinson's, etc.,
patients using fragrances. And, doctors themselves would provide an atmosphere
free of petrochemical-derived fragrances for your visits. There are safer alternatives for
doctors, staff, other patients, visitors, AND the healthcare facilities also.


The numbers via a phone call this morning (March 7, 2006) are:

High or Low	Blood checked for	Reading is:	What should be:
H	BUN	30 . . . highest ever	< 21
H	Magnesium	2.6	1.7 -2.3
L	Calcium	8.4	8.5 - 10.3
L	CO2	23	24 - 33
H	Creatinine	3.7 . . . highest ever	<1.2
H	Phosphorus	4.6	2.7 - 4.5
H	Potassium	5.4	3.5 - 5.3
L	GFR	13 . . . lowest I've been	>59
L	Hemoglobin	10.4	11.5 - 15
L	Hematocrit	32.4	34 - 46

Iron is OK . . . I didn't get numbers

Fortunately, other than creatinine and BUN readings, my highs and lows are generally only a little
high or a little low. But the kidney test via the blood seems to be unforgiving. Now, why is it that
the creatinine is in the "normal range: in the 24-hour urine catch, and yet runs so high in
the blood tests? On the other hand, and not to be falsely encouraged by the good news of the 24-
hour catch, Dr. Walser writes that "Many authors have recommended that the measurement
of 24-hour creatinine clearnace be abandoned. ..." (Coping With ..., page 147)

Ah, HA! Learned something else. I ate a breakfast before the last blood test, because we had to go
straight to another appointment. Should not have, as food going in can affect the creatinine
readings. (Walser in Coping With..., page 148: "The morning of the test, take your
medications as usual but eat either a light breakfast or no breakfast (because a large
meal changes kidney function).") Dr. Walser also suggests that one should not test the
creatinine level without first taking cimetidine, which we know by the brand name Tagamet.

Because my body cannot handle pretrochemically derived medicines any better than it can
handle petrochemically derived flavors and fragrances, I don't take medications. Including
cimetidine, but I do take supplements.

Also, there's information available through the Internet and through Dr. Krop's book,
Healing the Planet -- One Patient at a Time See Dr. Jozef Krop Publishes Book on Life-long
Environmental Medicine Work; October 2002, Features, By Helke Ferrie
http://www.vitalitymagazine.com/healing_the_planet_one_patient_at_a_time

In Healing, I read information on the Thyroid Gland -- for example, it is responsible for
clearance of substances from the blood. And while my thyroid has tested normal in blood tests, my
body has indicated to my acupuncturist that like so many with MCS, I live with hypothyroidism.
I could not lose weight, even with strictly curbing diet once diagnosed with kidney failure,
my body always feltg cold and especially the hands (this was a drastic change
as my body had always been hot, emitting heat like a blast furnace, hair loss, and my
cholesterol had elevated -- but with the low-protein diet, has dropped to normal. With my
complaint of "Can't lose weight, no matter what -- not even with kidney failure," he had
me take my temp three days running, starting before getting out of bed, and then two
more times at three hour intervals. When I started that program, my temp was
running 94 something - 95 something. Way low . . . and from me who used to run a
steady 99.6 and always felt way too hot. In recent years, I always feel way too cold.
No happy medium! But we're hoping to get there with supplements and herbs for thyroid
improvement.

I was on thyroid supplements in Sept. 2005 for two weeks, but because there were no
blood tests taken, we've no idea how I was doing. By the time I had a test in October, I'd
already been poisoned by pesticides applied to utility poles on block and in front of
home on Sept. 27 -- without warning!! -- and a couple weeks after that I had a major
perfume blast while napping in the car, awaiting for our grandson to awaken to go to the model trains on Point Richmond. That poisonous blast came from a mom with a brand
new baby in a pouch on her stomach. Once I could again begin breathing, I've wondered about the health -- and life -- of that infant. Both episodes were respiratory
poisons, which left me dealing with sinus and lung infections. Yeppers, inhaling toxins
invariably winds up as an infection for my body to fight. Thank goodness for acupuncture!!!
I heal quicker with help from the acupuncturist and his herbs.

Now, it could be argued that I'm grasping at straws in hoping that the blood tests have been
adversely affected by hypothyroidism, but I've seen straws driven into utility poles and into trees,
in a tornadic wind. And believe you me, this is a turbulent ride, so why not grasp at straws?


April 4, 2006

High or Low	Blood checked for	Reading is:	What should be:
H	BUN	42 . . . HIGHEST ever, but I had fish the day before the test	< 21
H	Magnesium	2.8	1.7 -2.3
	Calcium	8.7	8.5 - 10.3
L	CO2	20	24 - 33
H	Creatinine	3.5 . . . down a little, but warned that variations happen in the readings	<1.2
H	Phosphorus	5.6 . . . but I had fish the day before the test	2.7 - 4.5
	Potassium	4.5 . . . back to "normal" despite a few potatoes	3.5 - 5.3
L	GFR *	14 . . .up a little, reflective of the creatinine dropping a bit. Taking my 67 years and my creatinine reading, if we look at AfAm, based on my muscles, not race, I'd have a GFR of 17; if white male, it would read 19, and black male would be 23. Am I really a white woman? Yeah, but probably more muscular and more active than what the experts factor in as average.	>59
L	Hemoglobin	10.1 . . . a bit of a drop from March, but same as January	11.5 - 15
L	Hematocrit	30.3 . . . lowest ever . . . it had been dropping but raised a bit in March only to drop again in April	34 - 46

TheApril 4th tests were taken right after a weekend of family in town. My cousin and her hubby --
haven't seen her in 50 years, and had never had the pleasure of meeting him -- and also our son.
While their obligations took them to places apart from one another, my hubby and I
were able to eat with each of them, often. I did more "normal" eating than I should have done,
and I believe paid the price in worsening numbers like phosphorous and magnesium. Can't
explain the drop in the hematocrit. Glad that the potassium fell back into normal range. I remain
hopeful that somewhere in my treatment, sans pharmaceuticals, that we'll find a way to slow
this down, and IF there are miracles, even turn it around. But nephrologists say that cannot happen.

Visit with second nephrologist . . .

Now for the latest view of me by a nephrologist . . . the opening line is a doozy.

"Unfortunate woman with a very non-mechanistic view of the cosmos who ascribes
her progressive kidney disease to chemical sensitivities."

"She's certain she can correlate the fluctuations in her BP and kidney function to her
level of exposure; e.g., whether things in her home have been adequately 'outgassed'
before her exposure, or whether ther are miniscule vapors from scents in her
microenvironment. Such vapors make Richmond and Oakland 'toxic' to her, but
Emeryville is OK(!)"

Emeryville is OK??? I queried him on Emeryville, for I had not ever heard of a Kaiser
facility in Emeryville. How could I say Emeryville would be OK if I'd never found one, and
therefore not been in a Kaiser there. One thing I learned in a big hurry, is that
Santa Rosa isn't any more OK than is Kaiser Oakland, despite the fact that it is touted as a
"fragrance-free" facility. It cannot be a fragrance-free facility when the very products
they choose to use for hand cleansing and bathroom deodorizing, etc., are scented
products. They do not get IT! Not any better than Kaiser Oakland or Richmond or
Vallejo.

So what's the truth behind his full statement? As I remember the exchange, I ASKED if my kidney
disease could have been brought about by my exposures from the house rewiring/rehab project of
early last summer. Yes, we used low-emitting VOC products and yes, we had vacated the
premisis, but there was still some outgassing which I know did cause me some MCS health
problems. I do know that I walked into the house, immediately felt pain at the base of my benign
tumor -- referred to as my pedunculated bellwether -- and turned around and walked out to
sit on the front stoop, while my husband checked things out. I also immediately developed a
double track of a good six or seven small bumps on the left center part of my neck. Those bumps
lasted for several weeks, were quite noticable and slowly, oh so slowly, disolved. Or whatever.
We had moved in with one of our daughters, for a few more days of outgassing the house. At
that time, I did not have a clue that kidney failure was on the horizon, let alone, in the active
process of taking me down. I never had a symptom . . . and still don't. That nephrologist also wrote:

"She says she WOULD consider peritoneal dialysis if she loses what's left of her kidney
function (she insits the only other nephrologist she saw (in the toxic Oakland environment
that made the visit a grave threat to her), told her she'd die by July 26, 2005 [SIC]
(she's certain of that date)."
Let me add a major "sic" to that entire paragraph. -- barb

"Patient is at risk of progression to ESRD in 1 year." [ESDR = End Stage Renal Disease]

RE: Number two's comment: "... told her she'd die by July 26, 2005[sic] (she's certain of
that date)." Hell yes, I'm certain of that date, for remember, there was that line about
my CHECKing OUT, with the subsequent: "You do know what I mean by Check OUT?
Don't you?" How could I ever forget that????

What else could account for my kidney failure? I haven't taken OTCs or pharmaceuticals for years
-- a decade at least, because of my MCS and too many adverse health events from the prescribed drugs
back in the early 90s when I did try the pharmaceutical route (as do most folks with MCS).

Alas, I learned the hard way that drugs and my body don't mix. But if my body doesn't process
petrochemical-derived flavors, fragrances, pesticides, building materials, etc. . . . then I'm
left to wonder: Why should I expect my body to properly process OTC and prescribed drugs?

(And there folks, lies the reason why folks with MCS are denigrated. We cannot play the medical/
pharmaceutical industry's game. No money to be made off of us? No treatment for us!
Too often it's just plenty of stultification. Of course, there are medical doctors who are the
exception to this rule, but by all accounts I've read -- and a few I've experienced -- those
doctors are too rare.

But I digress, so to get back in the groove: I don't have HIV. I don't have diabetes. My blood
pressure is often in the normal range when I'm at home, although it will spike when I've
encountered a fragrance assault. I have been overweight, but no one who knows me
would ever have called me obese. Certainly not my alternative care doctors.

Yet, "hypertensive" and "obese" is how Kaiser labels me. And once they came up with those
labels -- without ever admitting that chemical poisoning has some bearing upon my
health -- it is merely a matter of my having kidney disease. Who knows why? . . . Who
cares why? I do. For if we learn why I have kidney disease, and IF it is connected to
my life of chemical poisonings, especially the last years in the workplace, THEN there is a
way to help others. But, that is only how my brain works.

As I see it, my kidney disease is diagnosis by red herring!

I say, I had UNEXPECTED weight gain as I came down with more and more severe MCS
symptoms. Was my body trying to protect itself with added fat cells in which to store
toxins? By the bye, the truth about my benign tumor is that I had been at that weight
for years and years -- for the length of time I was working in a perfume and pesticide-
poisoned atmosphere. But the tumor didn't develop until I was ostracized to an even more
toxic office, which I quickly dubbed TWDTC (pronounced Twid Tick and standing
for Toxic Waste Dump Torture Chamber. (You might guess I worked for a gov't agency
where acronyms rule.)

Interestingly, the tumor developed in rather short order -- within six months of my
having been moved to that more toxic office, which now added diesel exhaust and tobacco
smoke to the usual toxic mix of fragrances and pesticides. I noticed a difference by the
beginning of 1998 and monitored it for a few months before having it checked out.
Remember, I was already injured in that workplace -- as were others with many different
environmentally caused diseases -- and yet, management forced me to move to an even
more unhealthy location. It was called a "unilateral decision." I called it discrimination
and harassment, but then I was a voice of one. My friends on staff sure let me know
that they got the message not to utter a word of complaint about the lack of air
quality. One fellow named my new office Gulag. The staff knew I was ostracized. That's
how so many disabled folks are dealt with in the workplace, which also proclaims
loudly to others: Do not utter a word. Nothing like learning through having an action
like that dealt to you. (In case anyone wonders why I developed EHN's page, Take Heart!
http://www.ehnca.org/ehnhompg/takheart.htm you now know it had its gestation as a
result of my experiences in the workplace.

Now for one of my life's ironies: My most likely fragrance encounters these days are at Kaiser.
All of my other healthcare, including dental, is most often FREE of petrochemical-derived fragrances.
And, the rest of my life is pretty well guarded against flagrant fragrant assaults, except for the
occasions of neighborhood pollution by fabric softeners. And then, periodic requests of nearby
apartment dwellers to not use the air and water polluting fabric softeners, clears the air for a time.
Because people still use scented detergents and fabric softeners, we do our best to limit my
exposures by taking our walks by the Bay and in the woods -- my mask always at the ready for that
scented walker or runner, who has yet to learn that even the fragrance industry states that one
should NOT be smelled beyond one's arm length (never mind the fact that too many health
care encounters brings one much closer than "an arm's length").

I sure hope that Kaiser facilities start to "GET IT" regarding petrochemical derived fragrances,
because as it is, it is harder for me to dodge fragrances at my healthcare facility than anywhere
else I go. I find it particularly annoying for those doctors to tell me over and over that
my high blood pressure causes my kidney failure and they will not accept the fact that
fragrances affect the autonomic nervous system, hence the cardiovascular system. The
nephrologists cannot -- or will not -- see that high blood pressure can be caused by the
fragrance products they use, as well as by fragranced staff and patients. Education of
staff and patients could change that. Starting with the industry's acknowledgement that
fragrances cannot clean and the Department of the Interior's statement that GREEN cleaning
products "Must not contain petrochemical derived fragrances." Kaiser and other healthcare
facilities could also, use the information from NIEHS, which informs that fragrances and
pesticides are "Common Indoor Air Pollutants."

To check the veracity of my comments, please see (for starters):

RIFM RESPIRATORY SAFETY PROGRAM
INDOOR AIR QUALITY
[Fragrances] cannot clean the air"
. . . nor anything else. But, fragrances do pollute. -- bw
http://www.rifm.org/WHITE%20PAPER%20IAQ%20DIsola%20v2%2004082004.htm
Or at http://www.rifm.org/news/indnews_detail.asp?id+10

DOI:
"Must not contain petrochemical-derived fragrances."
http://www.doi.gov/greening/sustain/trad.html

NIEHS: http://www.niehs.nih.gov/external/faq/indoor.htm

"I told her that PD would involve permanent placement of a plastic tube in her
abdoment.[sic] She didn't balk at the notion of plastic (!) tube."

I KNOW I have kidney failure, I just want to know WHY. I also would really, really like to know if
there are proven ways of slowing it down, maybe even healing a little, that don't involve steroids
and other commonly prescribed drugs that can cause health adverse events even in those
without chemical injury.

In the meantime, let's see how wrong he and other such doctors are when they say fragrances
don't affect the cardiovascular system . . .

• Nephrotoxicity of 4-cycloocten-1-carbaldehyde.
  Arch Toxicol. Ý2004; 78(12):716-22Ý(ISSN: 0340-5761)
  MessingerÝH; KleberÝM; AulmannÝW Cognis Deutschland GmbH & Co. KG,
  Henkelstrasse 67, 40551 D¸sseldorf, Germany. Horst.Messinger@cognis.com
  
  "Natural and synthetic chemicals are often used in the fragrance industry. A
  toxicological profile of the synthetic fragrance booster,
  4-cycloocten-1-carbaldehyde, was generated using a test program including
  the following methods: acute oral toxicity, acute dermal toxicity, acute
  skin and eye irritation, skin sensitization, subchronic toxicity, and
  mutagenicity. The substance was strongly irritating to the skin but only
  weakly irritating to the eye. It gave a clear indication of having
  skin-sensitizing properties. Based on the comprehensive data from a
  mutagenicity test battery, 4-cycloocten-1-carbaldehyde was assessed to be
  nonmutagenic. Although its acute toxicological profile shows no toxicity
  after oral or dermal application, 4-cycloocten-1-carbaldehyde displays a
  complex toxicological response after repeated dosing over 13 weeks.
  4-Cycloocten-1-carbaldehyde or its metabolites show clear nephrotoxic
  properties focusing on tubular cells of the kidney. In view of these data no
  no-effect level can be derived from this study with
  4-cycloocten-1-carbaldehyde. A broad interaction of the test substance with
  various tissue types and cell parameters together with severe and
  irreversible organic defects even at low doses leads to the conclusion that
  4-cycloocten-1-carbaldehyde is unsuitable for the intended use in industrial
  fragrance formulations. "[Emphasis added.]
  Ýhttp://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=15365690&dopt=Abstract

• Effects of chiral fragrances on human autonomic nervous system parameters
  and self-evaluation.
  Chem Senses. 2001; 26(3):281-92 (ISSN: 0379-864X)
  Heuberger E; Hongratanaworakit T; B–hm C; Weber R; Buchbauer G
  Institute of Pharmaceutical Chemistry, Center of Pharmacy, University of Vienna,
  Althanstrasse 14, A-1090 Vienna, Austria.
  
  "The effects of chiral fragrances (enantiomers of limonene and carvone) on
  the human autonomic nervous system (ANS) and on self-evaluation were studied
  in 20 healthy volunteers. Each fragrance was administered to each subject by
  inhalation using an A-A-B design. Individuals were tested in four separate
  sessions; in one session one fragrance was administered. ANS parameters
  recorded were skin temperature, skin conductance, breathing rate, pulse
  rate, blood oxygen saturation and systolic as well as diastolic blood
  pressure. Subjective experience was assessed in terms of mood, calmness and
  alertness on visual analog scales. In addition, fragrances were rated in
  terms of pleasantness, intensity and stimulating property. Inhalation of
  (+)-limonene led to increased systolic blood pressure, subjective alertness
  and restlessness. Inhalation of (-)-limonene caused an increase in systolic
  blood pressure but had no effects on psychological parameters. Inhalation of
  (-)-carvone caused increases in pulse rate, diastolic blood pressure and
  subjective restlessness. After inhalation of (+)-carvone increased levels of
  systolic as well as diastolic blood pressure were observed. Correlational
  analyses revealed that changes in both ANS parameters and self-evaluation
  were in part related to subjective evaluation of the odor and suggest that
  both pharmacological and psychological mechanisms are involved in the
  observed effects. In conclusion, the present study indicates that: (i)
  prolonged inhalation of fragrances influences ANS parameters as well as
  mental and emotional conditions; (ii) effects of fragrances are in part
  based on subjective evaluation of odor; (iii) chirality of odor molecules
  seems to be a central factor with respect to the biological activity of fragrances.
  Remember, this study was of HEALTHY volunteers, not people already
  chemically injured from age five due to the effects of a refinery release. -- barb
  http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11287388&dopt=Abstract

But it is not just kidney patients, I'm concerned about. While healthcare facilities and doctors
should be concerned about the health of the still healthy, they must direct their full attention --
beyond industry hype -- to the welfare of pulmonary patients, cardiovascular patients, cancer
patients, pregnant women, newborn babies, infants and children, patients with neurological
symptoms, MCS patients -- the ones with the disability that cannot say its name out loud. They
must consider PATIENTS. Patients over the petrochemical industries. Start supporting safer
alternatives. That is a growing industry. And for good reason. Too many people have gotten too ill
from commonly used products released to market without substantiation of safety.

Why should any of us have to endure exposures to nonessential chemical compounds that can --
and do -- spike blood pressure, all in the name of health care?

So you gather, this other Kaiser facility was also scented -- they had scented patients and they had
scented hand cleaner right in the room, and a slightly scented nurse to take my blood pressure.
Was she scented on her own, or because of the hand cleanser? But there's more.

I should have been more alert, but I wasn't. My bad. So an even worse assault was a thermometer
that was stuck in my mouth that had to have been in some God-awful disinfectant. When I
protested, the nurse was either in total denial about the disinfectant in its case or in total ignorance
about it. Regardless, my mouth went into an immediate adverse reaction to that crap. And my
immediate turn to the sink and constant flushing of my burning mouth only further set me apart
from a "normal" patient.

And immediately following all of that, including my washing my mouth out as best I could at their
basin, with my nose near their scented hand cleaner dispenser, I had my blood pressure taken.
Taken by the nurse who was scented from something -- perhaps from the very cleaner in place at
the basin. And, in my case, anecdotal or not, my blood pressure has been shown to rise upon
exposure to petrochemical products such as fragrances.

So there you've got the setting into which the doctor walks . . . along with a case worker who was
quiet the entire time. My husband and I felt she was there more for the doctor as a witness
than for me, the patient. Indeed, she wrote up the documentation of the visit that started out with
"Unfortunate woman."

And to think, I've never seen myself as UNFORTUNATE, not even living and trying to work
with MCS. Not when diagnosed with a possible ovarian tumor, which fortunately turned out to be
a benign pedunculated tumor. Not even when diagnosed with "acute on chronic renal failure" last July.

What I do see as UNFORTUNATE, are all the patients who are put in harm's way by doctors who
don't look outside of their own medical training box. And, I'd say with stats like 100,000 killed
by prescribed drugs in hospital in a given year, and with "UNEXPLAINED" soaring rates of
various diseases, life-threatening or just damned annoying to live with, I'd say doctors better
start looking outside their medical boxes.

In all honesty, I have refused the concept of a biopsy. If I can avoid hospitalization and surgical
procedures, that's my choice. IF they found I had the "typical lesions of nephrosclerosis, an
unexpected glomerulonephritis, or even an 'allergic' interstitial nephritis," their treatment would
be steroids. And I'd be back where I began with steroids failing me miserably during accute lung
failure due to fragrance exposures in the workplace. There has got to be a safer way to treat
other than steroids and that's all I'm asking about. But, I was told that as he's been trained to
give drugs, that's all the information he can give to me. The problem is, IF I eventually
choose to use peritoneal dialysis to extend my life, I'll have to have a nephrologist. But,
good heavens, in the meantime, I do not want drugs to hasten my trip into that
decision-making time.

And while my little saga was unfolding w/Kaiser Santa Rosa, reportedly, Kaiser employees were
attending the Clean Med 2006 conference in Seattle. And there, they all were supposed
to have received a page that is titled, Fragrances in Health Care. And near the end of
that page, it states:

Indoor air quality ca be greatly improved in health care facilities by adoptig a
hospital-wide fragrance-free policy that includes a fragrance-free policy for employees,
maintenance products and non-employee hospital occupants. For additional
information see: http://www.noharm.org or http://www.fpinva.org
(Yeppers, our friend and EHN Advisory Board member Betty Bridges, RN, and also
background was EHN's barb wilkie. Hey, that's me.)

I've said it before and I'll say it again:
We ALL are stakeholders when it comes to breathing. -- barb 4/06

May 6, 2006

Here we go again . . . another up in the old creatinine, proving once again the kidneys are
not happy campers and are failing. That of course, is determined by the blood tests. And, yes,
PROGRESSION, PROGRESSION, PROGRESSION rings loud and clear, especially as I push
closer and closer to July 26, 2006. But I keep telling myself: HEAL, HEAL, HEAL. I'd settle
for even a little healing. I'm not hoping to be back to 20 years of age, just 68 would do very nicely..

Alas, I can't ask my questions about fragrances and other chemical assaults without being
ridiculed by Kaiser nephorogists. I truly was hoping to learn IF most recently my encountering
fragrance poisoning at Berkeley's Earth Day tabling event, and my perfume poisoning at
Penny's at Richmond's Hilltop -- it's got to be pumped throughout that store, so BEWARE! -- the
Sunday before the blood draw on Tuesday, have anything to do with this sudden jump from
3.5 last month to 4.3 this month?

The good news is that my potassium is still in normal range and my phosphoroushas dropped
back into normal range. (Too high phosphorous and you start leaching calcium from your bones,
so they say.)

And then, just a tad unsettling is the news of Kaiser's nehprology department regarding
transplant patients.
(http://www.kaiserinjurylawyer.com/CM/CasesandResults/Kaiser-Kidney-Transplant-Program-Injuries.asp)

Other articles: Lawyers and Settlements, Justice for Everyone
October 15, 2006. By Heidi Turner http://www.lawyersandsettlements.com/articles/kaiser-kidney-program.html

Kaiser Permanente Kidney Transplant Program Lawsuit
http://www.lawyersandsettlements.com/case/kaiser_kidney_classaction?ref=article

I haven't found any information for people such as myself, who do battle to try to
remain as healthy as possible, sans drugs, for as long as possible. My problem is that the
nephrologists are trained to prescribe drugs. They haven't a clue as to how to deal
with a body that has already had more than its fair share of adverse reactions to
petrochemically derived drugs, which are commonly prescribed They don't really support
health . . . Or they claim they do, but ONLY by prescribing drugs, which frankly, by now
I am afraid to take. One of the drugs that was prescribed earlier in my MCS, to help
control the muscle pain and joint ache that would awaken me in the middle of the night
and keep me from falling back to sleep was IBUPROFEN. Guess what I have since
learned: Ibuprofen works against the kidneys . . . and heart! Watch out!!!!!!!!

At least, I've already determined that I'm NOT going to go that transplant route. I may give
peritoneal dialysis a try, or even hemodialysis IF I can use a machine at home, And, really,
I have been thankful for having had time to get my affairs in order, while still feeling GREAT! If
we didn't look at my blood, no one -- not even nephrologists -- would have a clue that I've got a
progressive kidney disease. At least, not as of May 6, 2006 in the morning.

You all take care of yourselves!

May 2, 2006

High or Low	Blood checked for	Reading is:	What should be:
H	BUN	43 . . . climbing ever upward . . . not good news!	< 21
H	Magnesium	3.0	1.7 -2.3
	Calcium	8.8	8.5 - 10.3
L	CO2	22	24 - 33
H	Creatinine	4.3 . . . well, here we go, a new high. I like high marks, but not here!	<1.2
	Phosphorus	4.3 . . . back in range. Yeah!	2.7 - 4.5
	Potassium	5.1 . . . still in normal, but getting higher	3.5 - 5.3
L	GFR *	11 or 13 . . . still have muscle mass so I'll take the 13!	>59
L	Hemoglobin	9.8 . . . a drop	11.5 - 15
L	Hematocrit	30.4 . . .	34 - 46

May 30, 2006 . . . standard four-week interval for tests. However, I'd had Chinese Watercress the night before this blood test and my potassium shot up. Have to take another test in a week.

High or Low	Blood checked for	Reading is:	What should be:
H	BUN	48 . . . HIGHEST ever	< 21
H	Magnesium	2.4 A bit of a drop, but still high. High magnesium is supposed to cause low blood pressure. I should be so lucky to have my BP drop to even normal.	1.7 -2.3
	Calcium	9.5	8.5 - 10.3
L	CO2	20	24 - 33
H	Creatinine	4.3 . . . Well, it's held its own despite wonderful vacation w/family.	<1.2
H	Phosphorus	5.2 . . . Down a little . . . but still too high.	2.7 - 4.5
R	Potassium	5.8 . . . I guess the R stands for REPORT, for I got a call about symptoms of potassium poisoning. I didn't have anything they described, although my hands cramped on Tuesday while cooking and that night I had a cramp in the muscle to the left of my left shin . . . Kaiser asked about tingling in hands and feet, difficulty breathing or speaking, dizziness, vomiting, fatigue, strange heart beat, nausea, diarrhea . . . Looking back, I wonder if my body simply goes into cramps from too high potassium, because spring 2005 I had a lot of trouble with leg cramps, which I had thought were due to the work I was doing and then to our travels and hikes. It wasn't until July that I learned I had stage 4 kidney failure. Ah, HA! Cramps may be my body's warning signal.	3.5 - 5.3
L	GFR *	11 or 13 . . .	>59
L	Hemoglobin	9.9 . . . up ever so little, nonetheless, UP!	11.5 - 15
L	Hematocrit	31.1 . . . up a little	34 - 46

June 5, 2006 -- this is a re-test because of the high potassium the week before . . . However, I went to the main lab this time. I've noticed that the numbers are different, including the ranges of what the numbers should be.

High or Low	Blood checked for	Reading is:	What should be:
H	BUN	46 . . . A bit of a drop. Thankful for good news!	7 -17
H	Magnesium	2.5 . . . Arrrrgh, up a little . . . better had that .1 been down from the last reading, then I'd have hit normal.	1.6 -2.3
	Calcium	9.3 . . . Well, at least maybe I'm doing something right.	8.4 - 10.2
	CO2	24 . . . I've not a clue why this has suddenly come into normal, but I'll take it.	22 - 30
H	Creatinine	5.3 . . . This is the real bummer this week. HIGHEST EVER.	0.6 - 1.2
H	Phosphorus	5.7 . . . Don't know why this remains high, except it's part of kidney failure.	2.5 - 4.5
	Potassium	5.0 . . . back within "normal" range, so it looks like Chinese Watercress should be thought of as SPINACH, CHARD, KALE . . . high in potassium.	3.5 - 5.3
	Sodium	137 . . .	137 - 145
L	GFR *	9 OR 10 . . .Lowest ever. But so far, still feel OK. Funny that in one week's time, my creatinine and GFR should take such a hit. I'm not sure why . . . except, duh, KIDNEY FAILURE. But WHY? That's a question I've never had answered to suit me. They point to obesity . . . I was and am muscular and overweight, but not rolling in fat cells. Obese? No doctor outside of Kaiser has ever said I was grossly overweight or extremely fat. And the other easy mark is hypertension, but away from Kaiser, my blood pressure tends to run in the 120s and 130s . . . so, how is that hypertension enough to kill off the kidneys? I believe the kidneys have had more than their fair share of processing toxins, but try to get a nephrologist to look at that without stultifying the patient. In this case, moi.	>59
L	Hemoglobin	9.7	11.5 - 15
L	Hematocrit	29.2 . . .	34.0 - 46.0

June 25, 2006 . . . I've had strong energy now for several weeks. I sleep about four hours at night
without having to head to the bathroom . . . it used to be two hours like clockwork, and I simply
figured it was part and parcel of MCS, noticing that my every two hours were guaranteed on
nights of the days I'd been hit by fragrance poisoning.

But, something else has popped up in my mind . . . something to surely set off nephrologists. I
wonder if MCS -- at least in my case -- could have been the result of the kidneys trying to process
those toxins that I was breathing in and absorbing. And because we who are generally healthy
are blessed with more kidney function than we really need, have symptoms that we ascribe to
MCS, but as it turns out, could also be symptoms like those I'm told to look for that are
associated with rapidly deteriorating kidney function. I guess raising questions like these assure
the fact that I'm considered to be an "Unfortunate woman with a very non-mechanistic view of
the cosmos ..." (quoting a nephrologist's opening comment).

But considering the fact that far too little is known about the WHYs behind kidney disease and
kidney failure, and too many people learn of it only after being hospitalized for some other disease,
it seems to me, it is high time some of my questions are considered. And more importantly, even
more questions should be raised. Please start with a look at the 100,000 chemicals released to
market without substantiation of safety, found in products commonly used for personal care, as well
as household and janitorial cleaning and maintenance projects. Products whose chemicals our
bodies inhale and absorb. Chemicals that are also found downstream where they are adversely
affecting aquatic and wildlife.

Talk about Al Gore's An Inconvenient Truth . . . we are all living it and its ramifications whether
we and our doctors are bright enough to realize it or not.


June 27, 2006 . . . saw yet another nephrologist. Again, I was looking for a
nephrologist and found a man playing second fiddle. Seems that what the first doctor
wrote is taken for granted by subsequent doctors. All feel the need to inform me that I
have a perfectly good diagnosis and I have terrible kidneys. The blood tests tell them so.
And I too can see what the blood tests state, but IF I want to prolong my life without
drugs, I seem to be on my own. Thank goodness I have an excellent internist.

June 30, 2006 . . . back to the lab I usually visit.

High or Low	Blood checked for	Reading is:	What should be:
H	BUN	37 . . . Yeah, a drop!	< 21
H	Magnesium	2.4 . . . just a smidgeon high.	1.7 -2.3
	Calcium	9.0	8.5 - 10.3
L	CO2	23	24 - 33
H	Creatinine	4.4 . . . well, a drop to just a tenth of a point higher than I was in early May. Not bad.	<1.2
	Phosphorus	4.4 . . . back in range. Yeah!	2.7 - 4.5
	Potassium	5.1 . . . still in normal range; that's some good news!	3.5 - 5.3
L	GFR *	11 or 13 . . . still have muscle mass so I'll take the 13!	>59
L	Hemoglobin	9.6 . . . a drop	11.5 - 15.0
L	Hematocrit	29.7 . . . and any little up here is certainly worth my taking!	34 - 46

July 2006 . . . Interesting experience today in my "usual" lab.

The phlebotomist wore a scented product. I realized quickly that I needed my respirator.
She turned her back to work at the computer and when she spun around to draw my
blood, she was decidedly shocked to see me in double cartridge respirator. I told her I
was sorry I had given her a fright, and she apologized to me for her startled reaction.

I tried to explain to her that her body's visible shudder was what my body does
internally when forced to inhale the toxins in another person's perfumedx products.
She apologized for having used a scented product, telling me she really should not
have, but she forgot. I then told her she may wish to explore the toxins usedx to create
all of the modern synthetic scents and think twice about subjecting her own
body to those poisons . . . let alone the bodies of her patients. Maybe a change
will take place . . . ???

High or Low	Blood checked for	Reading is:	What should be:
H	BUN	49 . . . a leap upward . . . not good news! (blood, urea, nitrogen - from the breakdown of protein. BUN increases as kidney function decreases.)	< 21
H	Magnesium	2.4 . . . at least it's not way high, for that could affect the heart's rhythm.	1.7 -2.3
	Calcium	8.9	8.5 - 10.3
L	CO2	21 . . . a little too low.	24 - 33
H	Creatinine	4.8 . . . well, here we go, up again, but at least not my highest high.	<1.2
H	Phosphorus	5. . . . Bummer. Didn't eat anythng that I know of that could have caused this.	2.7 - 4.5
	Potassium	4.6 . . . Well, now, this looks great in the sea of bad news.	3.5 - 5.3
L	GFR *	10 or 12 . . . still have muscle mass so I'll take the 12!	>59
L	Hemoglobin	9.3 . . . another drop. Miracles can start with a turn around right here.	11.5 - 15
L	Hematocrit	27.9 . . . another drop. Miracles can continue with a turn around here, too.	34 - 46

August 2006 . . .

High or Low	Blood checked for	Reading is:	What should be:
H	BUN	55 . . . a bigger leap upward . . . not good news. This is my highest BUN reading. (blood, urea, nitrogen - from the breakdown of protein. BUN increases as kidney function decreases.)	< 21
	Magnesium	2.1 . . . Normal range, hot diggity. This is important because, as I understand it, too much magnesium can affect heart just as can too much potassium.	1.7 -2.3
	Calcium	9.1	8.5 - 10.3
	CO2	Whoops, no request this month for CO2	24 - 33
H	Creatinine	4.9 . . . up by a tenth of a point again, but at least not my highest high, and I can feel that I've pretty much held my ground.	<1.2
	Phosphorus	4.2 . . . Wow, normal! This is important, because, as I understand it, too much phosphorus and you start leaching calcium out of bones.	2.7 - 4.5
	Potassium	4.6 . . . Steady as she blows.	3.5 - 5.3
L	GFR *	9 or 11 . . . still have muscle mass so I'll take the 11! Of course, this is based only on the creatinine reading, so IF for any reason that's off, so then is the GFR.	>59
L	Hemoglobin	9.2 . . . another drop, but only a tenth of a point. Maybe miracles are starting with a turn around right here.	11.5 - 15
L	Hematocrit	28 . . . UP a tenth of a point. At least that's a different direction. Miracles, anyone? I'm up for them, starting N O W !	34 - 46

Sept. 8, 2006--Latest thing from Kaiser . . .They don't seem to GET IT that I don't want to
take drugs.

Now they are after me with a money-making offer. I could earn stipends of $30, nine
times; $45 once; $50 once; $75 twice; and $100 once. Which, if I've tallied that up correctly
and added correctly comes to $615. Now, the kick is: Join the study for FibroGen's
experimental drug called FG-2216.

Kaiser staff just doesn't get it. I don't want drugs . . . not until it is the very last of choices
to make. I've looked up some side effects on MedlinePlus regarding drugs to boost my
blood's ability to make red blood cells. I don't want the drug and certainly not an
experimental drug. No thanks!!!

I'll hope that my healer's "heaven connection," plus his jade ball rolling, will truly
unblock all the blockages he says I have to get the blood flowing again. (The magic comes
by way of a taoist jade ball healer, whom I've been seeing since early July. I've got the name --
"very non-mechanistic view of the cosmos" -- from a Kaiser nephrologist, so thought
I may as well play the game. This healer has gotten down the edema, so I don't have a
problem there anymore. Edema, I might add that wasn't seen by a nephrologist just
four days before I met my healer, who saw it at a single glance at my legs and then
proved it by pressing and leaving "pits." It certainly feels as though he has released
blockages. Everywhere. I hope another blood test or two will start to show real gains,
including in the kidneys so they can release the hormone that tells the brain to
tell the marrow to kick out red blood cells so my heart and other organs can continue
to function properly. Sounds like The House that Jack Built.

The hormone is: Erythropoietin. And if my kidneys don't start producing it, there's always
a drug. But that will be for later. As long as I still have energy, I don't want it. And
certainly NOT an experimental drug.

September 2006 . . .

High or Low	Blood checked for	Reading is:	What should be:
H	BUN	51 . . .A welcomed drop even though it is still way too high. (blood, urea, nitrogen - from the breakdown of protein. BUN increases as kidney function decreases.)	10 - 20 mg/dL
	Magnesium	2.3 . . . Normal range, hot diggity. This is important because, as I understand it, too much magnesium can affect heart just as can too much potassium.	1.7 -2.3 mg/dL
	Calcium	8.7	8.5 - 10.3 mg/dL
	CO2	20	24 - 33 mEq/L
H	Creatinine	5.3 . . . up again, this time by four tenths of a point, reaching my highest high thus far.	<1.2 mg/dL
	Phosphorus	3.9 . . . Still, normal!	2.7 - 4.5 mg/dL
	Potassium	4.6 . . . Steady as she blows.	3.5 - 5.3 mEq/L
	Sodium	134 . . . Normal, even if barely.	133 - 145 mEq/L
L	GFR *	9 or 10 . . . still have muscle mass so I'll take the 10! Of course, this is based only on the creatinine reading, so IF for any reason that's off, so then is the GFR. The larger number is assigned to African-American women, as they are seen as having more muscle mass than caucasians. You can see how "painting with a broad brush" can cause errors. White women aren't supposed to have muscle mass? Ridiculous! My ethnic origins were quite muscualr.	>59 mL/min
L	Hemoglobin	9.4 . . . Up by two tenths of a point. Maybe miracles are starting.	11.5 - 15 g/dL
L	Hematocrit	28 .6. . . UP six tenths of a point. Still too low, but at least this reading is UP! Miracles, anyone? I'm ready!!!!! Ready for my kidneys to start producing erythropoietin. (Erythropoietin is a hormone that is produced by healthy kidneys, which in essence tells the brain to tell the bone marrow to produce the necessary red blood cells. Kidney failure means failure of the production of red blood cells, hence anemia. When one's red cell counts get too low, one doesn't get the oxygen delivered to all the organs . . . doctors have an artificial way of stimulating that hormone. I'm trying to handle all this without drugs as long as possible.	34 - 46 %

How's this for stage five renal disease numbers? Taken October 8, 2006 at a park with my grandchildren.

October 14, 2006--This page being all about me, I assure you, my take on my renal disease is
a far cry from any course of treatment strongly suggested by nephrologists. (One, two,
three, four . . . three inside the Kaiser system, one outside.) I'm not recommending this
way for anyone. Simply reporting it so you all know there is another way . . . I'm not
saying my way is the best way. It's just that I feel it is mandatory for me.

All nephrologists I've seen are hell-bent on convincing me that I have renal disease. DUH!
I can read blood tests as well as the next guy. What none of them has suggested is a SAFE
way of dealing with kidney disease, considering the fact that I am already chemically
injured. Not to mention, the important fact, that a lot of the drugs they rely upon simply
speed the patient into dialysis or transplant. Is that the goal? Or should the goal be
keeping the patient as healthy as possible, as alive as possible for as long as possible?
Obviously, with MCS as my underlying condition, I'm opting for as healthy as possible,
as long as possible and that means as drug-free as possible. Also, of course, as free of
petrochemically derived pesticides , fragrances and flavors as possible. While I can say
NO to drugs, I keep getting whacked by the fragrances in the air and the pesticides
applied to utility poles and the like. Never know when someone from the county is
going to do their damnedest to poison you too. So, beware.

I have already had more than my fair share of adverse events associated with commonly
prescribed drugs. In the 1990s I told my internist: NO MORE DRUGS. If prescribed, I
would not take. They've not been prescribed, but drugs have been strongly suggested.
Time and again. It's how the medical industry is trained. With precious little time given
during their schooling to diagnosing and treating the effects of environmental illnesses.
And, I hazard a guess, no time given to ways of PREVENTING diseases, otherwise, it is
safe to assume, doctors would tell people to look for safer alternatives to the commonly
used petrochemically derived fragranced products and pesticides. And, they'd sure look
for safer means than just automatically dispensing petrochemically derived drugs,
regardless of the health or stage of the patient. Alas.

Having come to realize, after much research, once they make you so sick you have to
go on drugs and dialysis -- and they all talk about transplant, which means a life hooked
on drugs at best -- they experiment with drugs and dosage. Soooooo, I've decided to
experiment with healthy diet, supplements to support kidney function, acupuncture,
hyperbaric oxygen therapy (in hopes of getting stem cells marching to repair my diseased
kidneys), ionic detoxing foot baths, far infrared sauna to help sweat (which my body
never does beyond just a very light layer of moisture once in a while in the sauna), bio-
feed back, and since July 3, 2006, treatment by a wonderful Taoist Healer who uses
jade balls rolled along meridians to improve my body's circulation.

An aside: I personally have never lived through such pain. I've always had my teeth filled
without Novocain, had all three babies via natural childbirth, have sustained some
pretty nasty cuts which I self-treated with salt water baths and butterfly bandaids.
Admittedly I've not yet broken a bone and nor have had surgery, so I've not a clue what.
that pain is. But, let me tell you, the rolling jade ball treatment has had me finally really.
understanding the words: keening and writhing.As promised, the intense,.
"craaaazzzzzzzzy" pain has largely subsided. But the area of the legs inside the shins -- along.
the kidney meridian in acupuncture -- is still incredibly painful when treated. Let alone,.
simply touched. Supposedly, when that pain leaves my legs, the kidney blood tests should
improve. According to nephrologists, nothing heals the kidneys. According to alternative
doctors, ALL body organs, when supported, can heal. We'll see. Time will tell.

Interestingly to me, that leg area is the VERY region where I used to develop the largest
and deepest, spontaneously cratering, extremely slow-healing sores. Those sores were a
direct result of the monthly spraying in the workplace of pyrethroid pesticides. And,
they used to tell me over and over, just how SAFE those poisons were. Ha!

They had a pesticide team come in and spray on a Friday and within a couple of hours of
my appearing at work on the following Monday, those sores, those non-bleeding holes,
would just appear. Mainly on my legs and feet. Painful they were. And UGLY. But also
interesting because I -- along with my internist and some friends -- could watch my body
work to repair itself. The deep sores would slowly, over many months, fill -- grow new
tissue -- from the deepest spot up and from the outside edges in. Once "healed," I was
left with huge brown circles. I began acupuncture in August 1998, a couple months
before finally taking early retirement, and my acupuncturist began "circling the
dragon" -- placing needles in a circle around the wounds. That faded the brown spots
and speeded up the healing of my current sores, which were still appearing until I retired
from that toxic environment. To this day, you can see many of my scars. I call them my
chemical battle wounds.

It was a battle to try and get that workplace to see the need for indoor environmental
quality. Alas, they never did get it, until so sadly, two highly thought of, younger male
colleagues died of pancreatic cancer.

Yet, during my tenure, I counted the folks suffering from a variety of cancers and benign
tumors (me included), migraines; recurrent asthma, lung and sinus infections,
bronchitis and pneumonia; repeated cold- and flu-like symptoms, swollen lymph nodes;
dermatological problems all as showing signs of chemical injury. Just like me. Only my
body went into Multiple Chemical Sensitivity, with all major organs affected.
Therefore my body exhibited the Many Chronic Symptoms associated with MCS.
In my case, MCS included all of the above, except cancer and pneumonia. I had never
had headaches, but developed migraines then. Thankfully, once retired and under the
care of an OMD for a couple of years, I can again claim, No more migraines! I still get
headaches occasionally from assaults via petrochemically derived fragrance products.

Of course, workplace personnel were convinced it was all in my head. And if I but
changed my attitude, I'd not have any health problems. Nevermind, them changing to
safer, fragrance- and pesticide-free products. Nevermind that sometimes it is a case of
MATTER OVER MIND!!! As it is with poisoning by petrochemically derived fragrances
and pesticides. (And drugs, I might add. Remember, iatrogenesis is R E A L.)

Oh, my, how I have digressed. Back to my attempts to ward off dialysis for as long as
possible.

My regime may sound weird, but I'm now two and a half months past the date given on
July 26, 2005, that I'd be ESRD and on dialysis or dead within the year. (Or as that
nephrologist so crudely put it: "Check out! You do know what I mean by check out, don't
you?" To which I replied, succinctly: Drop Dead!)

Of course, I have no proof. But I strongly believe, based on my past experiences in trying
to control MCS symptoms by drugs, that had I just blithly followed the dictates of the
nephrologists, I'd have been one very sick puppy and maybe even dead by now. It's not
lost on me that it was predicted I'd be on dialysis or dead by July 26, 2006. I'm
convinced -- but how can I possibly prove it? -- that that was the timetable IF I had agreed
to have taken the recommended drugs.

What I do know, and have proof of, is that by doing it my way, I have continued to live
life fully, have continued to enjoy such activities as climbing a hay stack structure,
sliding down a tube slide, walking through a tunnel of straw bales and up a barn-style
ladder to the top of said straw structure.
(http://www.hauntedbay.com/reviews/westernrailway2005.shtml or
http://www.wrm.org/events/upcoming_events.htm)
We also recently visited Devil's Post Pile, Rock Creek Canyon for the fall colors, and
Virginia City. We've only planned to get to Devil's Post Pile for the past 49 years. The half
mile walk up the Morgan Trail at Rock Creek Canyon, at about the 10,000 foot level, was
wonderful. We stopped at the vista, rather than going the extra couple miles to
Rainbow Falls, for I did make that journey with an oxygen tank on my back.

Not only do we enjoy life, but I also keep up with laundry, cooking, cleaning, etc. Well,
sort of. And playing with the grandchildren.

I don't wish to be seen as whistling in the graveyard. Rather, I'd like to think that if
any of this helps any other chemically injured person face the diagnosis of death or
dialyisis within a year, then I'll have served some greater purpose in life.

In the meantime, talk about "hidden disabilities" my kidney disease is hidden . . . unless
you look at the blood tests. Still true as of October 24, 2006.

October 2006 . . .

High or Low	Blood checked for	Reading is:	What should be:
H	Cystatin C	3.41 . . . First time I've had this test run; more accutate than creatinine.	.5 - 1
	CRP	0.3 . . . First time I've had this test run; checks inflammation.	< 0.5 mg/dL
H	BUN	54 . . .A unwelcomed increase of three points.(blood, urea, nitrogen - from the breakdown of protein. BUN increases as kidney function decreases.)	10 - 20 mg/dL
H	Magnesium	2.4 . . . Up a tenth of a point into abnormal readings. As I understand it, too much magnesium can adversely affect heart just as can too much potassium.	1.7 -2.3 mg/dL
	Calcium	8.8 . . . Up a little more and that's good.	8.5 - 10.3 mg/dL
L	CO2	18 . . . A drop of 2 points. Why??? Damned if I know.	24 - 33 mEq/L
H	Creatinine	5.1 . . . Down by two tenths of a point, at least that's the right direction, but it is still too high.	<1.2 mg/dL
H	Phosphorus