Pulmonology Update #1

Well since my lung function has declined so much in the past six months, I decided to try to get an appointment at Mass General Hospital in the pulmonology clinic. I have decided to take matters into my own hands and discuss my future, whatever that may mean. One of my friends sees the transplant specialist there, Dr. Ginns. So in August I made an appointment with the general pulmonology clinic for October. I had to make the appointment with the general pulmonology clinic rather than getting straight into seeing Dr. Ginns because I didn't have a pulmonologist to refer me to see Dr. Ginns and you need a referral, whereas anyone can make an appointment in the general pulmonology clinic. It was quite a long day. Went with my aunt and had to go in early to stop by Boston Children's to get some lab work done that can only be done by Dr. Bonilla's lab. I had pfts scheduled for 3:00 and then my appointment with the doctor at 4. These were possibly the most thorough and torturous pfts I've ever done. They did each test nearly 6 times. By the end, I was so tired, I couldn't even complete the test. This was not just simple spirometry, but rather full-set of pfts with diffusion testing ect. For me, they equate to medieval torture methods. Just hearing the words, "Deep breath in, and BLOW, BLOW, BLOW, BLOW!!!!" make me want to run away screaming. The tests left me so short of breath, I was only satting at 92% on 6L. The doctor was running late and I didn't actually get seen by the doctor until after 6pm. The result was what I expected and hoped for. I got a referral to see Dr. Ginns. I basically told them that I was concerned with how much my lung function had declined and needed to begin to discuss my options for the future, especially since I didn't feel that Dr. Rogers was treating me properly and actually endangering my health through his lack of care. While this was the result I was hoping to achieve, part of me was still disappointed, hoping that they would just have a new treatment that would help.