Check Up in Ann Arbor

Ron had bloodwork and an appointment with Dr. Mag and Tim in the Bone Marrow Transplant Clinic on Thursday morning. No red flags in his blood tests...in fact Ron never had a fever or white blood cell count out of the normal range with this pneumonia in both lungs. His oxygen level didn't drop low because his heart worked so hard to keep enough oxygen circulating. The result was chest pain/pressure and a mild heart attack. That's what took us to the ER in Bowling Green. He has a follow up with a cardiologist at U of M. We very much liked his cardiologist at Wood County Hospital, but in spite of the travel time to AA, it is so much easier and makes sense to go where all his medical history is. A cardio team at U of M monitored his heart activity and made the decision to do the stress test, not a cath when he was in the hospital. They will be in charge of his heart meds. A pulmonary team monitored his lung disease, and Ron will have a follow up detailed CT of his lungs in July. His lungs have worsened since pneumonia in August. It is possible that tapering the ECP treatments since last summer allowed the chronic GVHD to do more damage to his lungs, but we don't regret that decision. He has bacteria colonized in his lungs, so an infection is never completely cleared. Dr. Mag suggested resuming ECP, but Ron says he is done with that, so we asked about again trying a pill to treat the graft versus host disease. Ron is allergic to the two that are commonly used. (The reason for all the ECP) So for the time being, Ron keeps his central line, and he is taking a newer pill to treat GVHD. Fingers are crossed that no side effects with this one.
We have proclaimed a medical vacation for 3 weeks. The goal is to regain some strength before resuming appointments. The other new issue is that Ron now requires oxygen at home. He had his last IV antibiotic for treatment of his pneumonia this evening. His meds are 3 antibiotics in pill form, an antiviral, antifungal, prednisone, 2 heart meds, mucinex, 3 inhalers-albuteral, Advair, and Spiriva, 81mg aspirin, jakafi (the new GVHD med), and celexa. I think he has a cast iron stomach!
We are so looking forward to all 4 of the kids and families joining us at the lake during "our vacation".