January was a busy medical month.
My rheumatology checkup was on January 31st and I had a laundry list of things to accomplish before I showed up in the exam room. Went to the ophthalmologist for a visual field test (because I’m on hydrochloroquine a.k.a. Plaquenil AND have Sjogren’s disease and need eye drops). Had a bone density study (due to a long-term use of steroids). Had a mammogram (because I was WAY overdue for one). Had blood and urine studies (because my doctor wants labs every 6 weeks). I also went to see my internal medicine doctor for a routine checkup. I get to visit the dentist next week too.
I was also supposed to see the nephrologist before the end of January. That appointment didn’t happen. My rheumatologist wants me to be evaluated AGAIN for kidney failure. In my all-knowing medical opinion, I’d rather not think about my kidneys, so that little detail remains on my “Things I’d Rather Not Do Right Now” list. My kidneys don’t hurt so I’m guessing everything’s fine.
I thought I could do some fancy footwork and rope-a-dope my way out of the kidney doctor appointment. However, my rheumatologist is a very smart guy. He went down his little check list and told me to see the nephrologist. He said it doesn’t matter if I’m not diabetic and my BUN and glucose levels are fine. My creatinine is way too high and my kidney filtration rate is way to slow.
A reasonable person would just suck it up and go see the kidney doctor. But I’m not always reasonable … at least when it comes to having lupus. Usually, I’m very compliant about my medical issues. But for some reason, I’ve managed to avoid making an appointment with yet another specialist. I simply don’t want to go. I know I should and I will. I just don’t want to. The thought of having yet another lupus-compromised organ in my body makes me pissed off.
On top of everything, my insurance carrier stopped paying my IVIG infusions since last September. Turns out, there was a mix up about the J codes used in the billing process. In August 2010, the specific brand of IVIG used by the hospital (and approved by my insurance company) was pulled off the market. The hospital then used a different brand of IVIG. The insurance company noticed they were being billed for a drug they did not approve (because it had a different J code) and rejected the subsequent hospital claims as a “non approved” drug. So far, I’ve managed to rack up about $200,000.00 of unpaid medical expenses. The hospital wants to hold off any more infusions until this is “straightened out.”
Of course all of this will get resolved. Eventually. But I was due to have an infusion last week and now I don’t know when the next one will be scheduled. I’m supposed to have them every three weeks. On the bright side, the veins in my left hand are shot and my right hand isn’t looking too great either. Maybe they need a little break from needles. My doctor said I may eventually need a port in my chest. I’m not too keen on that idea, either. Ports are also on my “Things I’d Rather Not Do Right Now” list.
So I wait, not too patiently, for the phone call from the scheduling office for my IVIG infusions. In the meantime, I hope my lupus doesn’t flare up. I’ve given up trying to understand WHY this disease is so random and unpredictable.
Most of the time I can find a pragmatic way to cope, followed by a nice helping of humor to stay balanced. But today I’m just tired and frustrated with this crappy disease.