The 1%

We've been dealing with Mark's anemia for almost a year now. All sorts of tests and treatments were tried while the doctors focused on treating the symptoms. The initial treatment consisted of extremely high doses of prednisone - a steroid. This had an adverse effect and landed him in the hospital last April where he had to have several transfusions. Transfusions are necessary when the hemoglobin drops below 7. (Normal is 14 for men.)

They continued to look for the cause of the problem. Finally, in June a test indicated that he had Cold Agglutinin Disease or CAD. You probably haven't heard of it, we certainly hadn't. It effects only 1% of the world's population. And that being the case, I was surprised that there is a treatment protocol for it. The first step was an infusion of rituximab weekly for four weeks, supplemented by injections of procrit when the hemoglobin count was below 9. After those initial four treatments he went to having the treatment once every four weeks. In the coming year, the doctor is planning to see if we can extend the time in between treatments to six weeks because his hemoglobin count is fairly stable around 10 and he mostly feels good.

But what it means in real life: It means that he really can't be in temperatures below 50 degrees F. When he gets cold, his immune system attacks his red blood cells and that is what carries oxygen through your system. So getting cold is a big no-no. It means that he may be bundled up in a winter coat when other people are wearing sweaters. It means that there will not be anymore February vacations in places like NYC or Ireland. It means he's off the hook for skiing. It means we may never do that Alaska cruise or trip to Iceland. It also means that when he isn't feeling well, we pop into an urgent care center if we're away just to have his blood tested. It means we have to plan our trips around the treatment schedule - although the doctor indicated that we should live our lives and work the treatments in. (Although I'm not sure about that because if the insurance company says every four weeks, they won't cover it if you try to do it in three.)

Other than that, we're still figuring it out. Learning what can and can't be done. And I've got to say that we had aspired to be in the 1%, this just isn't the 1% we had in mind.