My July sucked; probably the worst ever. How about yours?
If you’ve been visiting this site for any time at all, you already know I’m an end-stage renal disease (permanent kidney failure) patient. To stay alive, I rely on being connected to a machine that filters my blood. I have to do this several times a week, four hours each run. I am connected to the machine by very large (15-gauge; about as large as a finishing nail) needles placed in a section of my arm, called a fistula, where a vein and an artery have been surgically connected. If you’ve ever dreamed of jacking in, this is not it.
On Monday, 1 July I was unable to be dialyzed. Again no luck on Friday, 5 July. So it was off to United Hospital for a fistulagram. Basically, dye is injected into my arm and an x-ray is taken to see what’s causing the problems. I’d had a fistulagram before, so I was much less anxious than before. Being the Highly Trained Professional he was, the radiologist saw absolutely no earthly reason to listen to me about the problem and performed an angioplasty on the only part of my fistula that was working fine.
Highly pissed that I had spent all day putzing around in outpatient surgery with no resolution, I went home and stewed (in my own juices, as it were). Seven days without dialysis, and I’m not feeling well at all. Worst of all, no dialysis luck on Saturday, 6 July either. So, it’s back to the hospital on Monday, 8 July for an ultrasound. If every dialysis center had an ultrasound machine there would be far fewer access problems, let me tell you. But machines like that cost money and healthcare providers don’t much like spending it.
I took a “no prisoners” approach with the second radiologist, telling him in no uncertain terms that he wasn’t touching me until we got a few things straight. Like where the problem was. He half-assed listened and immediately diagnosed that the venus section had clotted off. Or more accurately, a thrombosis had developed in that part of my fistula. He said he could probably fix it with surgery, but I’d have to stay in the hospital, and there were no guarantees. Because the clotted part of my fistula was actually a run-off, and not the main vessel, it was decided to leave it alone and use the actual fistula. To do so, the radiologist drew a roadmap of the vessel on my arm with a Sharpie and I was on my way to the dialysis center.
Finally, I got a full dialysis run in later that day—after 9 full days without any dialysis at all. To make matters worse, my hematocrit was dangerously low. Hematocrit is the percentage of red blood cells in the bloodstream. The normal ranges for adult males is 42% - 54%. Mine usually hovers around 33%; only once had it gotten above 40%, in December 2000. During July it was 28%.
At the same time my ferritin (an assessment of the amount of iron in the body; iron is used to produce red blood cells) was a whopping 1300 ng/ml. Normal male values are 12 - 300 ng/ml. So I clearly had a lot of iron in my system, probably too much, but my body wasn’t using it to create the red blood cells that I desperately needed to fight my anemia.
The solution was to increase my intake of vitamin C to 500mg per day and to double my EPOGEN dose to 20,000 units (EPOGEN is recombinant human erythropoietin protein that signals the bone marrow to produce more red blood cells). The early results seem to indicate that it’s working. My hematocrit is rising and my ferritin is falling. I’m mostly feeling better but still have bad days from time to time.
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