Wilkie Wages War: April 2007
Wilkie Wages War: April 2007
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.
April 2007 . . . three tests over six days. Arrrrghhhhhh
When you see the numbers, you might understand why I wrote down my diary, which
has become a bit of a book . . . the title and chapter headings should provide a bit of
a clue as to what we were going through.
Title: Good intentions paved THAT road . . .
Chpt. 1 – Oy vey! (car poisoned by deodorizer added as a gratuity by mechanics. Took three days of ozone generating to clear it enough for me to be in it again. The final day was following Ashley’s advice of running for an hour, off for an hour, back running and then off … Thank YOU, Ashley!)
Chpt. 2 – Irregular irregular (husband’s heart, high BP, extremely erratic and extremely fast pulse . . . he who always claimed fragrances never bothered him, only gave him a headache)
Chpt. 3 – Our angel with two wings (Betty Bridges comes to town . . . two wings vs. the one wing that our dear friend and mentor, Irene Wilkenfeld — passed away February 29, 2004, the result of Chlordane exposure 34 years before — had ascribed to all of us. Irene had claimed that we all were one-winged angels holding up one another.)
Chpt. 4 – Dead on the kitchen floor (Kaiser doctor filling in for my doctor called me with that bit of hysteria at 8 am, Friday the 13th; the good news is Betty got us both into ER . . . Bill was kept overnight because his heart was really out of whack due to the strongly scented car deodorizers; I was released to my own recognizance that afternoon, when potassium showed a drop.)
Chpt. 5 – What are friends and kids for? . . . Little did I know (Betty here to guide us, daughters with the four youngest grandchildren arrived to also help and visit)
Chpt. 6 – Lost and found (perfume poisoning led to my losing my purse, found by an honest fellow with Velo Sport in Berkeley. Then my local daughter’s neighbor’s daughter played hide and seek — for a while — too successfully. She was found hiding in a closet . . . after we all frantically combed the neighborhood.)
Chpt. 7 – Here we go again . . . and again . . . and again (the umpteenth time I had to call Kaiser, trying to inform them that I was still very much alive and it wasn’t my fault that their emergency room computers do not talk with the rest of their computer system and the downloading of the chip happens, WHENEVER. It still hadn’t happened by the evening of April 18, which meant, there was no record of my being in ER on the 13th. And the really irritating thing about that experience? Learning that Kaiser staff don’t know how to pick up a telephone and call to ER to see if, indeed, a patient did go in as requested.)
Chpt. 8 – Home again, home again, jiggity jig (All of our visitors arrived at their respective homes safely)
Chpt. 9 – A Kaiser we will come, A Kaiser we will come, hi, ho the dairy oh, A Kaiser we will come (more tests: blood for barb; blood, urologist and echocardiogram for Bill)
Chpt. 10 – The leg that was a melon (That will teach THAT leg to never cramp again! Of that I feel sure if there is anything at all to this mind over matter stuff. The cramp was eased into little kernels of cramps and then eventually totally gone. But the work made the calf swell, hence my the leg that was a melon line. The great news is that even though it had swelled, I could use the leg, which hadn’t been true during that three-hour long cramp. This chapter had nothing to do with Kaiser . . . thought I’d throw in something different for a change.)
|High or Low||Blood checked for||Reading is:||What should be:|
|H||BUN||45 . . . Down four points. Still way too high, but great news, even thought I don’t have a clue as to why. (Blood, urea, nitrogen – from the breakdown of protein. BUN increases as kidney function decreases.)||10 – 20 mg/dL|
|H||Magnesium||2.5 . . . Up a little too high again. 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 . . . Normal, although, it has dropped some since last month. Why? Car poisonings?||8.5 – 10.3 mg/dL|
|L||CO2||19. . . . Down another point, but I haven’t a clue as to why. Doctors don’t seem to care about this number reading low.||24 – 33 mEq/L|
|H||Creatinine||5.69. . . up .64. Why??? Did the deodorizer toxins take their toll? Was it my last minute whirl wind house cleaning activities before Betty’s arrival the very night of this blood test?||<1.2 mg/dL|
|H||Phosphorus||4.9 . . . Up to a high reading again . . . again I don’t know why. Not diet.||2.7 – 4.5 mg/dL|
|H||Potassium||6. . . Abnormally high. Call from fill-in doctor: YOU HAVE TO GET INTO KAISER EMERGENCY ROOM IMMEDIATELY; YOU COULD BE DEAD ON THE KITCHEN FLOOR IN 24 HOURS. I eventually got to Emergency and then there was no record of my retest, let alone my visit, which included an ECG. Cute.||3.5 – 5.3 mEq/L|
|L||Sodium||128 . . . Well, down another point. Why?||133 – 145 mEq/L|
|L||GFR *||8 or 10 . . . still have muscle mass so I’ll take the 10. 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 muscular.||>59 mL/min|
|L||Hemoglobin||8.7 . . . Down two-tenths of a point from last month. Apparently, 8 is the magic number I’m supposed to remain above and with the help of Floradix, I’m sure trying to stay up around 9 . . . while hoping for higher readings!||11.5 – 15 g/dL|
|L||Hematocrit||26.9 . . This time down .3 of a point.||34 – 46|