Oh, wait, this blog is about Ron's updates. So where are we, medically speaking? Things are mostly stable in many ways. Ron's medications have not changed for about a year. His medications can prevent most infections...3 different antibiotics, antiviral, and antifungal. We are transitioning to immunity infusions every 6 weeks instead of every month. He also has several meds to treat symptoms that result from lung damage and skin changes. His daily steroid, prednisone, has caused diabetes, and Ron still has his central line, a 3-lumen Neostar, which must be cared for daily. It is used when he has his treatments at U of M. In March, he will be tapered to 2 treatments at 6 week intervals, instead of monthly which has been the routine the last 6 months. In January of 2013, his treatments started with 2 treatments every week (For 3 months), then every other week for 18 months, then every third week, every month, and now progressing to every 6 weeks. Ron has now had 131 treatments total. These treatments alter the T cells in his blood, so they are not so aggressive in attacking his body.
The biggest worry is pneumonia or a fall. Ron was hospitalized with pneumonia twice during the summer. Because his regular antibiotics do not cover the more resistant bacteria, he is then treated intravenously with the big guns antibiotics. Ron was scheduled in June (but then he had pneumonia) to have oral surgery to clean up his mouth. All but one of his teeth are broken off at the gum line. He does not have pain, and all the antibiotics he takes prevent an infection. The changes in his mouth are a result of graft versus host disease, and he most likely wouldn't be able to have dentures. His mouth tissues are fragile. There is no plan at this time to reschedule that surgery. I don't know if I am up to the insurance fight that would inevitably happen. Our insurance has been amazing, but dental surgery is not covered.
Ron's physical limitations have declined very slowly this past year unless he is sick. He must use his walker, a shopping cart, or the wheelchair when we are out. Due to shortness of breath and deconditioning, he needs to sit and rest frequently. He does not yet qualify to have oxygen at home. I admire how he gets on his stationary bike once or twice a week. Ron does have limitations cognitively. He is very disorganized and cannot problem solve some everyday tasks. He no longer reads books and magazines but does check the TV schedule of sports in the morning newspaper. None of these things are new developments in the past year, so I do feel like we are in a routine in many ways. Actually, I think that was part of what I had to work through this month. In January you somewhat look ahead to the whole year, and when I did that, another year of caregiving and "the unknown" regarding Ron felt daunting. A whole year was a way too big chunk of time to think about. I had to adjust my thinking! Doing okay.
