Wilkie Wages War: February 2007
Wilkie Wages War: February 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.
February 2007 . . .
| High or Low | Blood checked for | Reading is: | What should be: |
| H | BUN | 45 . . . Back below the 50s that I’d been in during fall 2006; it had started climbing last March. (Blood, urea, nitrogen – from the breakdown of protein. BUN increases as kidney function decreases.) | 10 – 20 mg/dL |
| H | Magnesium | 2.5 . . . A tad lower . . . by a tenth of a point! But, still too high. Eating fiber, as well as trying to stay away from magnesium-rich foods, is a way to bring that back into range. 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. Wow! and even a .2 increase! | 8.5 – 10.3 mg/dL | |
| L | CO2 | 20 . . . . A little move toward normal, but I haven’t a clue as to why. | 24 – 33 mEq/L |
| H | Creatinine | 5.15 . . . Down a little, but at least it is down. The correct direction for this reading. | <1.2 mg/dL |
| H | Phosphorus | 5.6 . . . Still too high but at least down a tenth of a point. Correct direction! | 2.7 – 4.5 mg/dL |
| Potassium | 5.0 . . . Normal. This is very good news, but my internist would like to see it a little lower. However, my body seems to be more stable when it runs around 4.9 -5.0. Her feeling is that I’m just too close for comfort for going over the magic 5.3. However, the one time I had had Chinese Watercress right before the blood test and the potassium shot up to 5.8, Kaiser was worried, and called, but I had no symptoms. So, what if for MY body, a little more potassium is better than too little? I sure don’t know, other than I get funny heart feelings when it runs lower than when it runs in the high normal range and I felt nothing at 5.8 either. My internist seemed to have accepted my account, but added the caution anyway. Her prerogative. I’m just happy she’s traveling this path with me. | 3.5 – 5.3 mEq/L | |
| L | Sodium | 131 . . . Well, up a tenth of a point. Now, I’ll wonder out loud . . . and the pondering I’m doing these days is that IF kidney health depends on a delicate balance of salt and potassium, was the fact that I was told to give up salt some years back, which I did, what has played a strange role in my kidney disease. Certainly my sodium count seems to always run low. This month, I’ll try to jack that up and see what happens in March . .. Life is a crapshoot; so is living with kidney disease. | 133 – 145 mEq/L |
| L | GFR * | 9 or 11 . . . still have muscle mass so I’ll take the 11, which would put me up a tenth of a point again! 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 muscular. | >59 mL/min |
| L | Hemoglobin | 8.8 . . . Disappointing as it has dropped two tenths from last month. Funny how the nurse is surprised I’m not bed ridden and I’m rejoicing in the “higher” number! But apparently, 8 is the magic number I’m supposed to remain above and will 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 | 27.3 . . Another increase, this time up .1 of a point. (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 also means failure of the production of red blood cells, hence anemia because the kidneys are responsible for sending a hormone to the brain that sends a message to the bone marrow to kick out more red blood cells. Kidney failure is system failure. 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 for as long as possible. | 34 – 46 % |
Well, there you have the numbers. However, to look at me and to see me in action, you’d
not have a clue that there’s a thing wrong with me. Talk about hidden disabilities . . . MCS
still can knock me for a loop if I encounter pesticides or fragrances. Fortunately, once I got
past the poisoning by the Utility Pole pesticides APPLIED WITHOUT ANY WARNING!
September 2005 or so, I’ve not had to encounter those poisons. But fragrances are
always around to be breathed into my body . . . and the bodies of others too, whether or
not they are cognizant of growing harm at this point in their lives. But, assuming the
air I breathe is fairly clear, you sure can’t tell I’m expected to be “bed-ridden.” Up to
this point, that is only in the mind of a Kaiser nurse. I choose a healthy life despite
disease over a life on drugs that more quickly lead one to dialysis and death.
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