enabled to be disabled

I recently was honored by being elected to the Board of Directors of Home Dialyzors United, formerly NxStage Users Inc. and had the privilege of attending the American Dialysis Conference in New Orleans.

This was my first opportunity to travel with the NxStage System One, and I admit to being a bit anxious. The thought of being saddled with a 100 lb. albatross while travelling was pretty daunting. Armed with plenty of five and ten dollar bills, I managed to load everything in my van, unload it at the hotel where I parked, load it into the shuttle, grab a skycap at the airport, wait an hour at the ticket counter while United Airlines tried to deny me a ticket due to the weight of my “medically assistive device” (which is allowed by law, and which law I provided them a copy of, to no avail). I then proceeded the process all over again on arrival. This is what travelling dialyzers looks like:

Meeting up in New Orleans

Meeting up in New Orleans


Now what, you might ask, does this have to do with being enabled to be disabled? Remember in one of my earlier posts when I described first seeing a dialysis center, and a sea of comatose bodies hooked up to machines, blaring out alarms? Now that I have ventured out into the world, as a dialyzer, I feel compelled to comment on the dependent culture that most of these clinics encourage. Continue reading

kidney brain and other weird side effects

It’s time to talk about kidney brain and all the other weird side effects of kidney disease. Renal failure can be like a chameleon, constantly changing colors, or symptoms. Until you get that first elevated creatinine, it can disguise itself as any number of diseases. It also likes to pair up with other diseases such as diabetes, high blood pressure, thyroid, and many cancers.

In my twenty years of being diagnosed with renal disease, I never once felt any burning sensation or pain in the area of the kidneys. I slowly lost my sense of smell, but never got the metallic taste in my mouth until after I started dialysis. There were never any visible signs of fluid retention in my hands or feet, but  I carried it secretly, intra-cellularly, in the lungs and other organs, making it impossible to lose weight. Many people report severe itching, which is the parathyroid contribution to kidney disease. At my worst, I had a fine red rash over half my body, which burned like acid! Some people describe it as itching from the inside out. Another dialyzor recalls smelling cigarette smoke for the six months prior to starting dialysis. Continue reading