What else could go wrong? Like I said in an earlier post, lupus began as a minor inconvenience to my life, but quickly progressed to creating some major problems. Joint pain, which I originally thought was arthritis, was osteonecrosis. The osteonecrosis could have been caused by many things, but lupus is a known contributing factor.
Then there came the blood clots; again they could have many causes. Mine were caused by Antiphospholipid Syndrome (APS) where the immune system creates antibodies to the DNA of cell walls. In that process, blood clots are formed.
This year, no clots, but because this particular clotting disorder and another one that can contribute to blood clot formation, I’m on life-time coumadin. Lovely! That means for every surgical procedure there’s the stopping of coumadin (risking a blood clot in and of itself), but substituting it with another medication that I inject, for a few days before surgery and after surgery. That’s one expensive proposition-and we’re not talking $40 insurance copay; I’m talking about the upwards of $400 because I’m now in the ‘Medicare Donut Hole’ and I pay the full price of the medication.
If that weren’t insult enough, I became increasingly short of breath and it was found that the cause was not an environmental allergen, not the elevation of Colorado, not many things, but a rare complication of lupus, called Shrinking Lung Syndrome. So, last May, I began taking a very powerful immune suppressant drug, intended to maximize control of lupus and in so doing, maximize control over this particular side effect. The problem is, this medication can take up to a year to work, (YES, YOU READ THAT RIGHT!) and even then, there’s no guarantee that it will be effective. Add to that the fact that it’s incredibly expensive and by decreasing the body’s immune response, it increases your risk for infections greatly.
Then, I think of the many times that mammograms have revealed calcifications, which on film show up so much resembling a tumor. So, there’ve been countess biopsies, all negative. That was a relief. Recently, a lump did not seem benign, in fact the surgeon was convinced it wasn’t. After a good five days of pins and needles, I received the call, “no sign of cancer” but a fat necrosis, caused by cutting off blood supply to fatty breast tissue. Is there any relationship between OSTEOnecrosis and FATnecrosis? I bet there is and I’m going to do the research to find out.
Then came Saturday. With heart rate normal but breathing heavily and feeling heart palpitations and coughing, we went to the ER where they admitted me. Thank goodness they ruled out any cardiac or infectious cause; “so what was it?” That question remains. And that is just a slight glimpse into the problems caused by lupus in a few months. Read between the lines into what each problem caused and how involved it is and the IV sticks, the side effects of medications and tests-and Lordy; ARE WE HAVING FUN YET?
- When Surgery Becomes Necessary for Lupus Patients (everydayhealth.com)