You've Got to Be Your Own Best Friend
Growing up, math was my #1 worst subject. I got as far as geometry and algebra but that was it. Science wasn’t far behind. I took freshman biology and chemistry in high school but could get no further. Luckily, the high school I attended was more interested in history and English majors and I was pretty good in both subjects – mostly “A’s” and “A+’s.”
The reason I mention all this is because, with my track record in science, I would never have made it as a doctor. Four years of college, 4 years in medical school, and then 3-7 years of residency training before you’re are eligible for medical licensing? I barely made it out of college – and I was a “super senior!” 5 years!
Help from doctors and myself
That said, I would never want to appear as if I’m criticizing doctors, nurses, or other medical professionals. They have worked and studied incredibly hard to get to where they are in their respective professions. I have always been well attended to. I love my nurse practitioner and my pulmonologist. Well...maybe LOVE is too strong a word. But I appreciate all the help and advice I’ve been given since I was diagnosed with COPD in 2011.
But...some of the actions I’ve taken in grappling with COPD have been of my own doing – by that I mean, I read and read and read as much as I can about COPD (I’ve mentioned this ad-nauseam in previous articles, I’m sure) and then took action on what I’d read if I could. My point is – as much as I respect him and the others who’ve treated me, my pulmonologist, Dr. Adams (not his real name) never mentioned LVRS (Lung Volume Reduction Surgery) or Lung Transplants. – two procedures I became interested in as options. I’m not sure why he didn’t.
Dr. Adams took over my care in 2011 after I’d been diagnosed in the Emergency Room of a nearby hospital. He had (and still has) great “bedside manner.” I think a good bedside manner is essential to a patient’s health and well-being, and it’s also been shown to improve staff morale at hospitals and clinics. He’s always been attentive to my questions and symptoms and I’ve been seeing him every 90 days for going on eight years.
I asked him once about how many patients he may see on any given day. I was curious and had worked for a managed care company back in the 90’s when the concept of “managed care” first came to the public’s attention. He sees approximately 15-20 other patients every day. That stretches the level of care anyone can give during the course of an eight to ten-hour working day but it’s a requirement of the company his practice belongs to.
Temporary relief with LVRS
I don’t mean to give the impression he was not encouraging when I broached the subject of LVRS. It was not a procedure performed in the hospital where he practiced but, he encouraged me to explore it. I did. I made the necessary inquiries at New York/Presbyterian Hospital where it was performed rather routinely and had the operation in February 2014. One of the best decisions I made.
Nothing “cures” COPD as we all know but, LVRS certainly allowed for better breathing than I was having. Its positive effects lasted a good five years before I could feel the inevitable approaching - more difficulty in breathing and higher settings needed on my oxygen concentrator. Again – I was kind of at a loss at that point about what I might do next.
I’m a fighter – a stubborn Irishman – and I was not about to let this damned disease do me in – yet! I suddenly found myself thinking back on a conversation I’d heard when I was in the Intensive Care Unit (ICU) recuperating from the surgery 5 years ago. Two of the ICU nurses were talking about a gentleman in the next room who was recovering from a lung transplant.
The possibility of a lung transplant
Wow. A lung transplant. The idea of it floored me – let alone thinking about it in the context of a treatment for me. So off to the library and onto the internet. But what I found was not particularly encouraging – a limited, projected lifespan (5 years) post-surgery. A dearth of possible infections and a probability of 16-20 daily medications/prescriptions. But I called Temple Hospital in Philadelphia. Their program is the leader in successful lung transplants. I made an appointment.
When I met with the Director of the Lung Transplant Program there, Dr. Baker (again – not his real name) he had more encouraging information than I’d read. “You’re reading dated material," he said. The average post-surgery life span is at least 10 years and often, much more.” I knew the traveling to Philadelphia, pre and post-procedure would not be possible, and I would literally have had to move there, which I was not able to do, but which many folks have done! But I returned to the hospital where I’d had my LVRS surgery and they were most happy to begin my transplant evaluation.
Be your own advocate
When I mentioned all this to Dr. Adams, he was very encouraging. “Go for it,” he said, and I concurred. You have to be your own advocate for your care. Doctors, LPN’s, nurse-practitioners – all mean well and absolutely DO have your best interests at heart – but, because of this awful “managed care” concept, they have approximately 20-30 minutes to see you. And then must move on to the next patient. But no one can care about you as well as you can. The point of all this (and I’m sorry it took so long to get here) is that you've got to be your own best friend.
How has your experience been navigating the healthcare system as someone with COPD?