It occurs to me that some people reading this may not know much about my medical history--you can skip this if it's stuff you already know. In 1988, I was diagnosed with chronic lung disease, after a history of multiple bouts of pneumonia (which I was told were probably not pneumonia, but early manifestations of the disease). At that time, the diagnostic terms being used were "pan-bronchiolitis" or "interstitial lung disease"; more recently, it's been COPD ("chronic obstructive pulmonary disease"). Whatever the terminology, it means that there are patches throughout my lungs that don't work properly, leading to diminished lung capacity. I don't have any of the usual risk factors, like smoking, exposure to industrial chemicals, or a family history, so no one is sure why I have it--just lucky, I guess!
In 1989, I underwent an open-lung biopsy (a major surgery) to retrieve some deep lung tissue for further testing, in the hope that a cause could be found, and therefore a successful treatment plan divised. However, as with so much of my medical situation, the results were "inconclusive." The high powered diagnostician who was sent the slides replied to my doctor with the words, "Thank you for letting me see this very interesting case," which I suppose in plain English means "I don't know what the hell is going on but I'm an expert so I'm not supposed to say that."
The one good thing that came out of all that is that the pulmonologist I was assigned to in the hospital was the very wonderful Mark Ellenbogen, who has been my doctor ever since, except for a two year period which has recently ended (described below). Dr. Ellenbogen is the rare doctor who really sees his patients as people, not as isolated body parts.
For most of the next nearly twenty years, I didn't let this illness slow me down very much. While I got short of breath easier than most people, I could still do most things without too much difficulty. I was careful to get a flu shot every year, as coming down with the flu or a cold would often lead to pneumonia. Once in awhile, out of the blue, I would suddenly have extreme difficulty in breathing, and these episodes, like the pneumonias, usually ended me up in the hospital for a few days.
Also, in the mid-90's I was diagnosed with a nasty infection with "atypical micobacteria," a germ similar to TB (although non-contagious), and underwent a long course of antibiotic therapy to try to wipe that out. My lungs remain contaminated with a more common bacteria, pseudomonas.
So, when my lung function started declining about two years ago, it was debilitating, as my baseline was so low. Now I get out of breath from any "major" effort--walking to the next room, taking a shower, getting dressed, etc.--a genuine pain. At that point, I was put on 24-hour oxygen, and was forced to stop working and apply for Social Security Disability (which, to my surprise, I was granted very quickly). Just to complicate matters, I also developed chronic pain syndrome in my knees and hips, another problem of unknown origin, which increased my level of disability.
Fortunately, I'm no longer in pain--after traveling the world of Boston chronic pain specialists, I found a doctor who diagnosed the problem as originating in my lower back, which I was skeptical about since I had no pain in my back. He recommended a treatment called radiofrequency ablation, in which certain nerves in the lower back are deadened with targeted injections of radio waves. I was told that the results I could expect were: (1) no improvement, (2) partial improvement, or (3) total improvement, lasting anywhere from six months to a year and a half. I was very scared, but decided to go ahead. The procedure, which was performed in mid-July, 2008, is done while one is sedated but awake, and I have a few very vague memories of what went on, but whatever it was that they gave me did the trick, because it seemed that no more than a few minutes had passed (it was actually considerably longer) before I was told that they were done--and I had no more pain! This surprised even the treatment team, because they said that even when it was successful it usually took a few days to kick in.
About the time my lung function started to decline so precipitously, Dr. Ellenbogen referred me to another pulmonologist, saying that this new doctor worked with lung transplants, which he thought I might need. So I started working with Dr. Peter LaCamera. He sent me to "pulmonary rehab"--an exercise program to try to build up my stamina. I had a great therapist, and I really tried, but each time I would get sick or get so weak I couldn't continue, and after four attempts over more than a year I gave up on that. I then did get a transplant consultation, but the transplant team concluded that the level of infection I had would just contaminate the new lungs (since they leave the trachea and upper bronchia intact). In addition, the post-transplant life they described (not only the anti-rejection drugs, but also frequent invasive testing), didn't sound all that appealing.
It was at this point that I decided on palliative care and hospice. During my last hospitalization, in October, 2008, I asked to meet with the palliative care team and was introduced to the wonderful Dr. Lochlan Farrow and his team, who really listened to me and respected my feelings.
Also at this time, I went back to Dr. Ellenbogen, wanting him to be my pulmonologist of record, based on our long history together. I also have a very supportive primary care doctor, Dr. Linnea Meyer, but these days I don't see doctors much...instead I see my hospice staff, including Kathy, my visiting nurse, Celeste, the social worker, and Nancy, the chaplain (whom I like because she does not talk religion--which doesn't interest me--but is just another supportive listening ear).