Monday was a long day!! My last entry did not mention the trouble that Ron has had with GVHD of his mouth. This means sores that are painful, and that has affected his appetite over the last 2-3 weeks. He had lost 10 pounds over the last 3 weeks, so he is back on megace, an appetite stimulant. He also now has a topical med that numbs and treats the sores. That is in addition to a steroid mouth rinse and an oral adhesive rinse that he had been taking. They also changed his antiviral med to a more potent one, Valtrex. All of these changes are to help the discomfort he has had with his mouth.
Ron has his Monday infusions in a hospital-like room. He has to have a new IV each Monday since he no longer has his central line. Ron is in a hospital bed because it takes a few hours. When the PA and doctor came to the room, both observed the twitching, tremors, and rambling conversation that seems to affect Ron when he is in a light sleep. It concerned them enough that they want him to be off sirolimus, his immunosuppresant for this week. Another change. The steroids keep the GVHD inflammation at bay, but it weakens his muscles. Still looking for the right immunosuppressant that doesn't overly affect his nervous system...so he does not have to take steroids which make him weaker.
Sunday we had traveled to Ann Arbor and stayed at the Med Inn inside the hospital. That was great! His pulmonary function test at 8:00 showed improvement in his lung function. Then he had his bloodwork done, and we were able to go back to our Med Inn room for over an hour before his first doc appointment at 11:00. From there we went to the infusion center in his clinic and were there until 5:00. Ron only has two more days scheduled at this time for appointments in Ann Arbor in the month of July. Yeah!!
Love to all,
Ron & Jan
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