Wilkie Wages War: First Experience with a 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.

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 ITS 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. As he bandied his paper — the past
records of my blood tests — under my nose.

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 patronizing 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. 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 dialysis
and drugs, just to remain alive. That is living? I don’t think so. But, we’ll see.

[August 8, 2007 . . . I’m past the “Check out” prophecy by more than a year, and still ticking.]

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 internist 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 adverse 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 scarcely 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 bananas 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 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.

[April 13, 2007 — received a call from a doctor filling in for my internist. She did get a tad hysterical about my having to race into Kaiser Emergency or otherwise I could be dead on the kitchen floor within 24 hours. I had a potassium reading of 6.09 and allowable high is 5.3. So, I eventually got into Kaiser ER and 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. And 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 . . . fragrances are neurotoxins that can adversely affect the cardiovascular system!), no one knew that fact, nor 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’? But, all this diet stuff changes in June 2007. See A scary venture: Flying in the face of medical “wisdom”.

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 another 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.

Fragrances KILL. Sometimes dramatically, like the Kaiser nurse in Fairfax Virginia; or the
11 Algerians who were huffing perfumes. Other times a little more slowly, like in my
own case — as I view it — with moving beyond MCS into chronic renal failure. And,
remember please, one and all, I did not use perfume or other highly scented products. I
was forced to breathe those petrochemical-derived fragrances used by others in my
former workplace. Alas, I couldn’t afford to take retirement any earlier than I did.
And so goes the life for millions of others — sadly, too many are far worse off than I.
When will the medical industry get it?

When will our government agencies begin protecting public health????? They’ve demonstrated
just how well they can protect the petrochemical industry from informed consumers. But,
THAT is not their mission. Their mission is to protect consumers! They’ve got it a little
bassackwards!

Something I’ve found very interesting is that the list of symptoms for kidney failure
is curiously close to my symptoms for chemical injury and for fragrance and
pesticide products poisonings. While I remain asymptomatic for kidney failure symptoms,
I do suffer these very same symptoms when poisoned by commonly used consumer
products containing petrochemically derived fragrances, flavors, pesticides, drugs, etc.

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 spiking 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

See RenalInfo‘s Symptoms of Kidney Failure at
http://www.renalinfo.com/uk/how_kidneys_work_and_fail/kidney_failure/symptoms_of_kidney_failure/

Regretfully, Kaiser does not cover my holistic treatments, nor do they refer me out.
Therefore, not one of the tests or treatments done outside of Kaiser is covered by
Medicare. Some blood tests would have been, if I were a “regular” patient. Just think,
like so many millions of others, I worked all those years, getting poisoned in an office just
so I can spend my retirement stipend now for treatments that other folks can depend on
Medicare to cover. Ain’t that a kick? Of course, I’m thankful that my routine labs plus
internist and GYN visits are covered by Kaiser/Medicare, but I’m less than pleased that
I’m on my own when it comes to safer, drug-free health care. I cannot get through
Kaiser and certainly NOT through Medicare — which seems to me to be far more interested
in pushing the drugs and treatments that cause more harm, than in drug-free, safer,
alternative treatment and PREVENTION. For example: Why doesn’t Kaiser/Medicare (at
my local level) offer hyperbaric oxygen therapy . . . and for that matter, thermography
instead of just more radiation through mammograms? But that’s another health issue.

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 flavors 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