Kidney Disease Awareness Quotes

1. Oral Involvement 2. Laryngeal Involvement 3. Cardiovascular Involvement 4. Skin: rashes, vitiligo, Raynaud’s 5. Constitutional symptoms: including fever, fatigue, and muscle wasting (cachexia), infections 6. Rheumatoid vasculitis and blood vessel disease 7. Lung Involvement 8. Kidney involvement 9. Eye involvement 10. Other organs: including spleen, liver, lymph system, gut KEY POINTS 1. Some symptoms and antibodies can precede diagnosis over 10 years. 2. Many studies indicate RD begins in the lungs, before joint symptoms are diagnosable. 3. RD is often called an “invisible”illness because symptoms are not obvious to casual observers. 4. Doctors must be more aware that systemic symptoms like fatigue may indicate serious problems. 5. Extra-articular disease has been proven to affect most PRD, but is still not widely recognized. 6. Acknowledging rheumatoid disease that exists beyond and before joint inflammation (arthritis) could bring a) Improved care for lower mortality b) Improved research for better treatments c) Improved diagnosis for increased remissions

Perhaps the most significant thing to be aware of here, for anyone who works a desk job, is that sitting is an independent health risk factor—meaning that even if you do exercise, sitting for eight hours each day will still damage your health.124 According to Thomas Yates, MD, “Even for people who are otherwise active, sitting for long stretches seems to be an independent risk factor for conditions like diabetes, cardiovascular disease, and kidney disease.”125

Though I wasn’t aware of it at the time, a small but growing body of research supported my intuition. It showed that patients similar to Mrs. Lee—over seventy-five and with serious medical problems in addition to advanced kidney disease—were as likely to live as long without dialysis as with it and often with a better quality of life. This research comes mostly from the United Kingdom, where about 15 percent of elderly patients with end-stage kidney disease die without ever starting dialysis. They have programs in place to provide conservative management—treatment aimed at minimizing symptoms of kidney failure while maximizing the quality of life remaining without dialysis.

I was fortunate I had uncovered the protein intolerance before I became too sick to research it. I only uncovered it so quickly because it had coincided with research I was doing on hypoxic kidney damage and I was aware of the link to protein in urine. Had I gone back into a state of permanent chronic fatigue, I would have needed to move in with my parents.

In late 1985, the Reagan White House blocked the use of CDC money for education, leaving the US behind other Western nations in telling its citizens how to avoid contracting the virus. Many Americans still thought you could get AIDS from a toilet seat or a glass of water. According to one poll, the majority of Americans supported quarantining AIDS patients. This heightened awareness set off waves of anxiety across the country, which was often express through jokes (Q: What do you call Rock Hudson in a wheelchair? A: Roll-AIDS!) and violence. Between the years 1985 and 1986, anti-gay violence increased by 42 percent in the US. Even in San Francisco, where Greyhound buses still dropped off gay men and women taking refuge from the prejudice of their hometowns, carloads of teenagers would drive through the Castro looking for targets. In December 1985, a group of teenagers, shouting “diseased faggot” and “you’re killing us all,” dragged a man named David Johnson from his car in a San Francisco parking lot. While his lover looked on in horror, the teenagers kicked and beat Johnson with their skateboards, breaking three of his ribs, bruising his kidneys, an gashing his face and neck with deep fingernail scratches.