Until this past March I was taking up to 12 different prescription medicines and about as many more Chinese herbs and vitamins. At about that time, my urine output dropped to nearly nothing and I started having problems with very low blood pressure after dialysis. Enough, I thought. Time for detox. So I did, slowly, some of this shit is really dangerous.
One of the co-morbidities of my kidney failure was high blood pressure. When I was first diagnosed, my blood pressure was so dangerously high it’s a miracle I didn’t stroke out when they brought it down in a couple of hours at the hospital.
Since then—for a full 10 years—I’ve taken a fistful of blood pressure drugs. I spent the last two weeks of March weaning myself off these medications. I ceased Prinivil on 13 March, Metoprolol on 15 March, and Norvasc on 19 March. I miss the Metoprolol; it took the edge off. I found out later that I should have spent more time winding down the Metoprolol, but I told my nephrologist my plan and she approved.
Where I got into trouble was with the evil Clonazepam. This is a drug that should be banned for all off-label uses. I was taking 2mg every other day (alternating with 200mg of Trazodone) for relief from myoclonus, another wonderful co-morbidity of kidney failure.
I reduced my Trazodone to 50% (100mg) on 19 March and reduced my Clonazepam to 50% (1mg) on 20 March. I ceased Trazodone on 26 March, and Clonazepam on 27 March. That was a mistake. By April Fools’ Day I was in full-blown withdrawal. The only withdrawal symptoms I didn’t have were hallucinations and, depending on who you ask, behavior disorders.
The good news is that my blood pressure remains manageable without prescription medication and I can live with my muscle spasms.
The bad news is that my severe anemia (yet another kidney failure co-morbidity) is spiraling out of control. In February, my hemoglobin level was 11.5 and I was fine (normal hemoglobin levels are 14-18; anything over 11 and under 13 for dialysis patients is okay). The problem for me is that I’m virtually a basket case if my hemoglobin goes under 11.5. At 11.4, I’m miserable. In March, my hemoglobin was 11.1 and in April it was 10.5. Now it’s 10.1 and I’m beyond miserable. Taking a shower in the morning results in barely being able to catch my breath and sometimes requires a lay down to recover. Walking up a flight of stairs is pure torture. And I walk up and down a lot of stairs; we have four flights in our townhouse.
What’s especially disturbing about my spiraling-the-drain anemia is that erythropoietin (EPO), the drug used to treat anemia in dialysis patients, has stopped working. EPO tricks the bone marrow to produce red blood cells. In February I was receiving ~8,800iu of EPO. In April, it was raised to ~11,000iu. For the last week or so I’ve been getting ~20,000iu and, at least so far, it’s not working.
It’s too soon to tell, but it may be that I’ve developed erythropoietin resistance. Iron studies are scheduled for Monday, but my iron stores have historically been high. My ferritin level was 771 in March (normal is 22-322) and my iron saturation, iron, TIBC, and UIBC were all within normal ranges. Clearly, my body has plenty of iron stored; it just can’t make proper use of it.
Most of the other causes of renal anemia can likely be ruled out: No infection, no blood loss, no vitamin B12 or folate deficiency.
That leaves hyperparathyroidism (still another co-morbidity of kidney failure) and hemolysis. One of the remaining prescription drugs I take is Sensipar, to control hyperparathyroidism. Here’s hoping it’s related to that—my parathyroid hormone level was 383 in March and 639 in April (normal range is 11-80; my Sensipar dose was doubled in April). Additionally, my calcium has been high, but within normal range, for the last six months.
I’ve never been the typical kidney failure patient. Everything about my specifics with regard to this disease in general has been weird. Everything. Until recently, my blood pressure goes up when I get dehydrated. My blood work lab results are roughly the same regardless of whether I dialyze two times a week or three. I continued to make some urine for a full 10 years after diagnosis and beginning dialysis. I bleed like a stuck pig after dialysis, yet my first fistula clotted and failed. While I never feel really good, I feel worst the day after dialysis; usually three or four days after dialysis I feel the best in my reduced feel-good spectrum.
Atypical and weird I can live with. Maybe it’s time to think atypically and weird about renal anemia. Several sources have told me that dialysis patients that smoke marijuana regularly have excellent hemoglobin levels and some have no EPO need at all. Here’s to getting small.
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