Wilkie Wages War: Visit with Second Nephrologist

Environmental Health Network leader Barbara Wilkie discovered in July 2005 that her chemical injury/multiple chemical sensitivities had suddenly manifested as stage 4 (later stage 5) kidney disease (kidney failure). Despite dire warnings of death within a year, she eschewed dialysis and Western Medicine drugs and took a route of alternative medicine, Traditional Chinese Medicine, and strict dietary changes. She lived well for six years, far beyond the doctors’ predictions.  Barb died at home, surrounded by friends and family, on May 31, 2011.

During this time, Barb documented her journey. From diagnosis through June 2008, she created one huge website page packed with details, plus some side documents on diet and other topics.  We have divided these works into smaller pieces, by date or topic, to make it easier to read and find things.  For dates after June 2008, we have letters, online posts, and other documents.

Barb intended her work to be read and used. We hope this presentation will help you do just that.

Wilkie Wages War on Kidney Disease
(aka Renal Disease or Failure)

OR, AS I SEE IT: Life with yet another facet of living with MCS.
I want to live life while dying.

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.”

I have never viewed myself as “unfortunate” and it riles me that that’s the opening word to a
diatribe that ignores the fact that the onslaught of toxins in commonly used household and
personal products adversely affect health. Everyone’s health one way or another, and our
planet’s health, besides. The “After Visit Summary” goes on from there to paint me as a
total whacko and is sparked with words in quotation marks and emphasized by
exclamation points in parentheses. As in:

“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 there 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
premises, 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 noticeable and slowly, oh so slowly, dissolved. 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 insists 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

Well, now, there are two things out of whack in just this one paragraph. I ASKED about
peritoneal dialysis. I wanted to learn something about it. I told the doctor that I had no interest in
hemodialysis. Just the setting and the circumstances surrounding it are not fit for one who is
already living with chemical injury. The only other dialysis option I’ve heard of is peritoneal,
and so I ASKED. Secondly, it was actually on July 26, 2005 that I was told I’d have about a
year before dialysis, transplant or death. THAT is what I told the current nephrologist, who
has made sure I’ll not darken his door again. Notice the date he gave in his report — 2005.
Obviously a boo-boo, for it was written in April 2006 and I was still very much alive
and being a pain in the arse to nephrologists. And, for the record, the first nephrologist
officially wrote about my July 26, 2005 visit, stating in his report:

“Patient is at risk of progression to ESRD in 1 year.”

What else was I to think? Besides that first nephrologist was the one who said I was going to
“Check out” in a year, and then had the gall to ask if I knew what Check out meant!!!
Is it any wonder I want to live out my kidneys’ lives as healthfully as I can without nephrologists?

As written here, it seems a milder version of the reality. In the office of the first nephrologist —
where I began with severe fragrance poisoning in the waiting room — he stated it several times
over. Really drilling it into my head — and my husband’s — that I have just about a year and
then it’s dialysis, transplant or death. PROGRESSION, PROGRESSION, PROGRESSION.
No one could have said it clearer. And the date? The why behind my remembering it?
My being “certain of that date”? It was a grandchild’s birthday, eight days after my own.
OF course I’d remember it.

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????

So, my questions remain.

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/www/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/news/indnews_detail.asp?id=10

DOI:
“Must not contain petrochemical-derived fragrances.”
http://www.doi.gov/greening/links/trad.html

NIEHS:
http://www.niehs.nih.gov/external/faq/indoor.htm
[Note 8/2/11: This link no longer exists and there appears to be nothing similar at the site.]

Also, out of whack in the doctor’s account is that Kaiser has an Emeryville hospital facility
There’s none that I know of. Reference to Emeryville is out of context in the above statement.
Emeryville — even though the doctor did not know where that city is — was suggested to me as
a place to go for possible peritoneal dialysis tubal implant as an out patient, rather than being
subjected to all the fragrances, disinfectants, etc of hemodialysis in a Kaiser hospital like Oakland,
where I’d have to go three times a week for five or more hours each day if I had hemodialysis.
To the best of my memory, the doctor had not mentioned that the tube for peritoneal dialysis was
plastic. He only mentioned a tube. Nonetheless, he then went on to make a big deal of that as in:

“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.”

Well, now, I’ve never claimed that I cannot be around plastics. I try to avoid them as much as
possible . . . like shower curtains, try to get as many items in glass as I can, etc., never have
cooked microwave food in the plastic containers the items are packaged in — I don’t even have a
microwave to begin with. But hell, I’ve got some substance in my teeth when the mercury fillings
were replaced. Maybe the plastic I encounter is bad for my body and I’m too stupid to know it,
but plastics that aren’t volatilizing like crazy aren’t obviously bad for me as are volatilizing
organic compounds . . . like fragrances, pesticides, fresh oil-based paints, diesel exhaust, etc.

What the nephrologist never got — and mind you I thought I was seeking consultation in a
fragrance-free Kaiser facility that “got it” regarding chemical injury — was the fact that my body
has already had adverse reactions to prescribed drugs, INCLUDING Prednisone. Has already lived
a life of adverse reactions to commonly used scented products. Has already had adverse reactions
to disinfectants and other pesticides. (YES. Do think of disinfectants as pesticides, for that is
how they are classified by the EPA. And as they are formulated to kill, that’s what they are! )

It’s not like I’m the only individual in this whole wide world with such an affliction either, but
he wrote me up as if I were just dreaming this condition up. Why? Trust me, there is no gain for
the person with MCS. And while we are often painted as ne’er do wells, most often by
representatives of the medical industry, we really are a highly motivated group of people, replete
with innate intelligence, often with advanced degrees, who must excel at their own research
and find healthcare practices with which their bodies can live. Yet, dream up my condition
seemingly was his conclusion with his statements of how he can find loads of info on kidney failure
from high blood pressure but nothing on high blood pressure being caused by fragrances. He’s
wrong, of course, but he could not be convinced to even try to look for information backing my
statements.

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. 2004; 78(12):716-22 (ISSN: 0340-5761)
Messinger H; Kleber M; Aulmann W Cognis Deutschland GmbH & Co. KG,
Henkelstrasse 67, 40551 Dusseldorf, 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, acuteskin 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.]
http://www.ncbi.nlm.nih.gov/pubmed/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; Bohm 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/pubmed/11287388?dopt=Abstract

My contention remains: As kidney failure can be caused by high blood pressure and high blood
pressure can be caused by the combinations of chemicals used to concoct highly volatile
petrochemical-derived fragrances, then: Why, oh WHY, does Kaiser insist on using fragrance
products to further put patients in harm’s way? Fragrances on staff. Fragrances in the oft used
hand cleansers. Fragrances in the restrooms. Petrochemical derived fragrances abound. Is it all
about making more people sick in order to push more drugs? That’s great for the petrochemical
industry. What about public health? What about the health of Kaiser patients in general?
What about the health of Kaiser staff? Why are fragrances allowed, encouraged, purchased?????

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 acute 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 can be greatly improved in health care facilities by adopting 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