A Day in the City 3, (The "To-Do" List)

Pulmo Doc was concerned about the aspergillus exposure and also concerned about my recent exposure to TB while visiting Ireland in November last, even though the person with the history of TB had successfully completed the required treatment for TB several months before. "Because of the risks that come with remicade we'll need another PPD before we proceed" he said. A PPD is a tuberculin skin test that indicates exposure to TB. "We'll need to get you set up with a cardiologist too. I'll think carefully about the right one to follow you. It needs to be someone accustomed to following sarcoidosis patients as not all cardiologists recognise sarcoidosis in the heart. We'll need EKGs every three months or so to establish data and then see how we should proceed after that." The thought of this was making my heart flutter already! "We'll need to see a rheumatologist to follow the remicade infusions and of course you'll need to see an opthamologist to get regular eye exams to make sure you don't develop involvement of the eyes. And of course we'll need another CT of the chest and lungs to take another look at the lung cavity. It's best to get the remicade infusions done here in Boston at first so we can keep an eye on things and get your regular bloodwork established, then we can think about transferring you to an infusion center closer to home. And I'd like to read your medical history thoroughly and do some thinking and get together with you in a few weeks again". I felt myself wilting in front of him. I knew he was right of course, and I was grateful for his commitment to being thorough and in establishing good care but I could tell that the next several months were going to involve several trips in to Boston. I was going to get very good at this train thing!

All in all, it was a good visit. I had no doubt that Pulmo Doc was skilled in the treatment of sarcoidosis but I left with the feeling that perhaps Pulmo Doc wasn't used to treating sarcoidosis patients with remicade and that concerned me. There is a strong possibility that insurance will reject his request that I be treated with such an expensive drug. (Remember that my insurance requires me to get "permission" for any visits with specialty doctors and for any procedures). Will Pulmo Doc feel strong enough in his convictions to fight with them for me when and if the time comes? Only time will tell. My next infusion is due this coming Monday. I don't know if we can pull all of this together in time....