Like Terrie M., I highly recommend Dr. Defren. He's the only pulmonologist I've ever seen, and I can't imagine a better one. As Terrie said, he's highly intelligent and very caring; he also treats you as an equal. He takes so much time with you at each appointment (up to 45 minutes - 1 hour in my case): summarizing the results of the last appointment, doing the exam, and explaining future options / plans etc. His nurse told me that on days that he was in his office, he never scheduled more than six patients! He likes to spend considerable amounts of time explaining lung function, using interesting metaphors to make it easy to understand.
Unlike patients with chronic lung disease, I was OK in the lung department until 2007. I became totally exhausted due to the fact that the company I worked for moved so far away, I had to commute a total of four hours to & from work. After about eight months of this commuting I came down with what looked like regular pneumonia, diagnosed by my internist via a chest X-ray. I went to the hospital for five days to get intravenous antibiotics. I met Dr. Defren towards the end of that visit. Since I no longer had a fever, he explained that the active infection had been killed off, but there was still lung damage. He said that I would need to rest at home for a month, then my lungs would heal themselves. This would have been true if it had been regular pneumonia.
I went to Dr. Defren's office a month later for a follow-up. Listening to my lungs, he said that they were no better, they were actually a little worse. I only had 68% lung capacity, based on a breathing test where you exhale into a machine. Because of the way the chest X-ray had looked, he thought I might have a rare lung disease called "bronchiolitis obliterans with organizing pneumonia." The bronchioles are the next-to-the-smallest airways deep in the lungs; they get clogged up in "organized" looking rows. Since the treatment for this condition is a steroid drug, it was necessary for me to have a surgical biopsy of bits of my lung tissue to make sure that I really had this condition. He recommended an excellent thoracic surgeon (Dr. Clark Fuller) who did the biopsy surgery. Sure enough, the problem was what Dr. Defren suspected that it was.
He explained that this condition is so rare that no studies have ever been done about how to treat it, since there have never been enough people with the condition to study at any given time. There are only a few medical journal articles by doctors who had one patient with the condition. Based on these, Dr. Defren planned a six-month treatment protocol with a steroid medication. I started out on a high dose and gradually reduced it. During this time, I kept seeing him for follow-ups.
After six months, I was totally cured as was shown by a perfect chest X-ray. Dr. Defren said I was fortunate I got this particular disease, because there are 100 rare lung diseases, and some of them are death sentences -- people take steroids but never get better. After I was all better he said that the breathing test showing I had only 68% lung capacity had "really scared" him. I was touched by this statement, because many doctors may have similar feelings about very ill patients, but never admit it to the patients, wanting to keep "professional distance." Dr. Defren is very professional and very caring at the same time. My lungs have been fine ever since; I decided to retire at that time so I'm not exhausted & stressed out anymore. read more
