Ok, you’re going to need a little background for this. At times I’ve written about having kidney disease and going through dialysis. You might recall other times I’ve mentioned some unspecified rare disease. And then once or twice I talked about cancer. So if you sometimes get confused I can understand that. Some of my best friends get confused regarding what’s going on with me. Apparently so are some “experts.”
For the record, it all started about 15 years ago when I was diagnosed with Wegener’s Granulomatosis. Wegener’s is an autoimmune vasculitis that affects the smallest of blood vessels and the organs they occupy – most notably the kidneys, lungs, liver, and sinuses, in my case the kidneys. There is no cure but it can sometimes be controlled with combinations of chemotherapy, immunosuppressant, and steroid medications.
After 10 years of treatment with methotrexate and prednisone, the working parts of my body decided they wanted some attention and got together to vote on who would revolt. My bladder either won or lost depending on your point of view and grew cancer. One year and four operations later I was pronounced cancer, and bladder, free and the proud owner of rebuilt body parts fashioned from other body parts that to this point had done not much more than the jobs they were originally intended.
In the process of trying to create a recoverable environment for my post-operatively rebuilt body I had to replace the drug therapy that was so far managing to keep the ravages of the Wegener’s at bay but now not such a good choice in a body now equally desperate to keep other cancers at the same bay. While that search was underway the dastardly disease took advantage of the temporary unprotected kidneys and put them into a (hopefully but who are we kidding) temporary shut down and put me in a chair at the local dialysis clinic.
And that’s how I came to be an unplanned early retiree with a handicap placard hanging from my rear view mirror. But “who are those who should know better?” you asked. Good question. Why, the health care “experts” of course. I’m allowed to speak of them with disdain because I was a health care expert for close to 40 years before my unplanned early retirement. And those years included years when experts in health care were the ones educated in and actually providing health care.
Recently I had to complete some paperwork for the government’s end stage kidney disease program including what led me to be on dialysis. As in the past I check “other” after not finding in among the pages of pre-selected options and entered Wegener’s. It was rejected because there is no such condition in their database of diseases. Since I have it know for sure there is but I also know for sure it’s also known by another name, Granulomatosis with Polyangiitis, I questioned the explanation. Even if you’re being paid by the letter you have to agree that Wegener’s is an easier fit for a government form. And that’s why I had always fit it. So I called the help number for some help and asked what I had done wrong. I was told we’re not allowed to call it Wegener’s anymore because that doctor who discovered it “was a Nazi you know.” So all traces of his name have been removed and it is disallowed from official use. I wouldn’t have minded if at least they would have matched the funds it took to rename everything for “official use” with perhaps some official research.
But those are government people who are used to doing stupid things. Or things stupidly. But…there actually are others who should know even better even. Those are ones who bring me my tri-weekly adventures in artificial kidney function replacement. Or dialysis if you prefer,although personally I don’t prefer dialysis.
At the corner kidney clinic they posted a new “let’s raise everyone’s spirit” poster. On it is a classic pie chart with the legend, “ONLY 7%!” It goes on to explain that “You spend only 7% of your week in dialysis. The other 148 hours are yours to do the things you like!” Really. That sounds like something that someone who doesn’t know what dialysis does to a body wrote. Not a national organization responsible for 290,000 dialysis patients. (Source: that company’s website). That 7 percent might account for the time that you are actually having your blood circulate through the machine taking up the 10 square feet next to your chair. Not the time it takes for a nurse to do a pre-dialysis assessment and then physically connect you to the machine by way of two needles about the size and diameter of a Bic pen stuck into your arm. Not the time for a nurse to physically remove you from the machine by withdrawing the Bic pen like needles from your arm, for the bleeding one would expect for two holes the size of Bic pens in your arm to stop bleeding, and then to go through a post-dialysis assessment (all about another hour). Not the time it takes to get to and from the dialysis clinic (roughly another hour for me). Not the time it takes to physically recover from the actual process (in my case 10 to 12 hours).
So if we consider the time to get on dialysis, get off dialysis, go to dialysis, and recover from dialysis I actually have 10 hours a week to do what I like. I like to sleep about 8 hours a night and I like to eat at least 2 meals a day so I’m down to around 33 hours a week I can call my own. Almost a whole day and a half! I wonder if they would notice if I would “edit” their poster at the clinic.
Well now you know who those are who should know better. A government who is more concerned with what to call diseases than what to do with the people who actually have the disease and the people who are supposed to be minimizing the effect of a disease on the body but are clueless about how to minimize the effect of the disease on the person.
Boy I feel bad for the poor soul who I might run in to today and says “Hey, how ya doing?” I might actually tell him.