Wilkie Wages War: September 2007
Wilkie Wages War: September 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.
Oh, oh . . . a not-so-good-month, but my hemoglobin has climbed a whole .2 of a point so I’m back at 8. That’s the good news. The bad news is not only am I losing tons of hair, but that I started feeling nauseous most of the time — and certainly after eating. Alas, I’ve developed an aversion to the green diet. Fortunately, I don’t suffer the fatigue or other symptoms associated with severe anemia. I had vertigo — where the room spun around — when I first got up on Sept. 8, but it lasted only a couple of minutes and has not returned.
This past week (last week in September) the nausea seems to be lessening, for which I am thankful. Now that I’ve had a break I should try to go back to the greening diet. We’ll see what next month brings. I continue to take a Tang Kwei Gin (aka Dang Gui Gin) and Floradix (herbal iron). I certainly don’t want to get too cocky here as I’m still working under another “dead”line — I’m due to be dead, or on dialysis, by end of December 2007. My numbers improved dramatically in July, I sure hope that they can again. I’ll keep working at it!
I sure hope my experience lets everyone know that one does not have to take the drugs that make them even sicker. I’ve had a healthy-feeling two plus years now since diagnosis and for that I’m extremely thankful. I would not be able to make that claim IF I had gone on the nephrologist’s drug regime.
Please know that one can choose to go drug-free and dialysis free. We can choose death instead of agony of surgery that may or may not work the first time, or repeated times, for dialysis, which can be in an area a loaded with chemicals one cannot be around in the first place. — barb
|High or Low||Blood checked for||Reading is:||What should be:|
|H||BUN||67 . . . Up a bunch this time, but still not as bad as that in June, when it had been a whopping 73. (BUN increases as kidney function decreases.) This month I have no built in excuse, except of course, worsening kidney disease. BUN also reflects one’s state of hydration.||10 – 20 mg/dL|
|H||Magnesium||2.8 . . . Now .5 points too high. As I understand it, too much magnesium can adversely affect heart, just as can too much potassium. But, so far my heart is fine.||1.7 -2.3 mg/dL|
|Calcium||9.0 . . . Normal!||8.5 – 10.3 mg/dL|
|L||CO2||17 . . . Down another point and still running low on this reading.||24 – 33 mEq/L|
|H||Creatinine||5.68 . . . Up .20 from last test on August 28. I learned from Kaiser’s site after having this test, that one is not supposed to exercise for two days before the test, in preparation of this test. This time I did not take any huge walks, but I had eaten a little meat, having left my green diet in hopes of settling my stomach..||<1.2 mg/dL|
|H||Phosphorus||5.2 . . . Another jump up. But why? Kidney disease getting worse? Too much phosphorus in the blood and bones can be leached of calcium, causing them to become brittle. I try to avoid nuts, beans, dairy . . . but fish tends to be high in phosphorus so maybe that’s my problem.||2.7 – 4.5 mg/dL|
|H||Potassium||5.1 . . . “Normal.!” This is great new. My doctor would rather see me in the lower 4s, but I believe my body feels better when potassium is in the low 5a. /I>||3.5 – 5.3 mEq/L|
|Glucose, random||97 . . . “Normal.” But then, I’ve never had any trouble with glucose readings. /I>||60 – 159 mg/dl|
|L||Sodium||132 . . . Well, low it might be, but I am holding my own on this test last month and I still don’t know why I’m low. I’m certainly getting a lot of sodium. Sodium is important for balancing potassium. Serious question: Are medical doctors causing kidney problems by taking patients off of sodium? Maybe they should switch their patients to aluminum-free baking soda and also to Himalayan Salt, with its 84 trace minerals. Any studies??? Any clues????||133 – 145 mEq/L|
|L||GFR||8 or 10 . . . Same as last month. Still doing better than I was on June 5, when I had 7 or 9 from which to choose. Like always, I’ll take the higher number. With the increase in creatinine, the GFR drops. 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, as am I.||>60 mL/min|
|L||Hemoglobin||8 . . . Up .2 point since last month and that is the GOOD news. Eight is the magic number I’m supposed to remain above. We’ll see what next month brings. I find myself running up our stairs again. Maybe that’s a good sign. Let’s hope . . . Hemoglobin is supposed to fill the red blood cell and the amount in your red blood cells is an indication of how well your blood can carry oxygen.||11.5 – 15 g/dL|
|L||Hematocrit||23.3 . . . 1 increase over last month. Hematocrit measures the amount of space taken up by your red blood cells. So, 23.2 means that only 23.2 percent of the volume of my blood contains red blood cells . . . By both counts, hemoglobin and hematocrit, I’ve got the typical severe anemia that comes with kidney disease. And, I’ve had it for some time now. However, I don’t suffer the fatigue. I had dizziness — when I first got up — on Sept. 8, but it lasted only a couple of minutes and has not returned. I’ve not had any other such symptoms of severe anemia. Yet. Hence, I’m not too anxious to have medical intervention with drugs that can cause my body even more problems.||34 – 46 %|
|WBC||4.9 . . . Up .5 of a point and well within range. I’ve no idea what this was like before going on the greening diet on June 10th.||3.5 – 12.5|
|L||Red Blood Cell Count||2.46 . . . Red blood cells are running low in this test too.||3.60 – 5.19|
|H||RDW, RBC||14.8 . . . .5 of a point too high.||11.9 – 14.3%|
|MCV||95 fl . . . Up a little since last month, but still in range! “Mean corpuscular volume (MCV) is a measurement of the average size of your RBCs. The MCV is elevated when your RBCs are larger than normal (macrocytic), for example in anemia caused by vitamin B12 deficiency. When the MCV is decreased, your RBCs are smaller than normal (microcytic), such as is seen in iron deficiency anemia or thalassemias.” http://www.labtestsonline.org/understanding/analytes/cbc/test.html||80 – 100|
|Platelet Count||262 K/uL . . . This has increased since last month, which looks better when comparing with the range. “Platelet Count measures the number of platelets, which are involved in blood clotting.” http://www.labtestsonline.org/understanding/analytes/cbc/test.html||140 – 400|