I read. All the time.
My whole family read quite a bit when we were kids. Mostly because my Dad forbade television watching on a school night.
“Read a book!” “Aw c’mon, Dad! Batman’s on!”
“On Saturdays you can watch Lawrence Welk with your grandmother and Saturday Night at the Movies. On Sunday, ...the Wonderful World of Disney, Ed Sullivan and Bonanza. That’s it!”
To this day, I won’t watch television during the day. I’d feel guilty. But I inhale novels, magazines, and newspapers in the evenings.
It’s a good habit, especially when compared to a bad one like smoking.
You would have thought I would have paid more attention to all the warnings about cigarette smoke that I read.
I felt invincible to the effects of smoking
But like many young people, I didn’t think they were talking about me. We all were invincible right up to our 40’s and as my cousin once said about our family, (jokingly), “We don’t get cancer. We have heart attacks.”
Now I read everything I can about COPD
I’m not sure how many online COPD groups I joined or how many COPD Facebook pages I belong to. Quite a few - if I took the time to sit down and count.
I think they’re important resources for all us – not just those of us who like to read or socialize on social media.
And every so often, just to add to things, I’ll Google “COPD” just to see what’s new or developing.
Researching COPD on my own
It’s because of these habits that, in 2014, I started reading about Lung Volume Reduction Surgery (LVRS). My pulmonologist is wonderful. She keeps me up to speed on many things going on and being researched in the COPD world.
She never mentioned LVRS. I’m not upset with her because of that.
A friend of mine is a top cardiologist at a major New York City hospital. We were talking about the number of patients he sees in his office on any given day.
“Well...the appointments begin around 9:00AM and end around 5-5:30 depending on how smoothly the day goes,” he said. “When the concept of managed care came into the health business, it was made known to us that each patient should be allotted around 20 minutes for a visit. You do the math.”
I did and I said, “That’s like 24-25 patients a day.” “Sounds about right,” he agreed.
“And does that affect the quality of care?” I asked. “Take a guess,” he said.
I understand that my doctor is busy
So, when my doctor doesn’t remember to tell me about a new development in the COPD world, I can understand why.
I also think it’s up to each of us to assume responsibility for ourselves when it comes to our health. If one thinks, “Oh – I’m dying and I’m miserable. Why should I bother doing anything?” – well, that’s entirely up to you.
But I think it’s a waste of the human spirit and if you have family, I think it’s unfair of you not to try.
New developments in COPD
You’re right, it doesn’t seem like any of us will be “cured” anytime soon but developments are taking place all the time that may make life easier in the short run.
I recently went for a visit to the Temple University Lung Transplant Center in Philadelphia. Over 131 lung transplants take place there annually. A truly amazing place. I spent the better part of an afternoon there meeting and speaking with their doctors (Google “Dr. Criner Temple Lung Center”), surgeons and social workers.
Quality of life with COPD
The constant phrase I heard over and over again in multiple conversations was “quality of life.”
What they were telling me was that if I passed a number of pre-tests (cardiology, pulmonology, etc.) and was lucky enough to make it on the waiting list and blessed to receive a transplant, my “quality of life” would change instantly.
In other words, I could take those long walks on the beach my wife and I used to love and go hiking in the woods or even just walk some of those long city blocks in New York as I did as a kid.
My doctor never mentioned a lung transplant
But even this - a lung transplant - was not something I was informed about as an option at any doctor’s office or in any medical setting.
I literally stumbled on this article from Temple Health.
I wrote to Dr. Criner to ask about the procedure. I had my medical records sent to him soon after since I did not want to make a 2 and ½ hour drive (NYC to Philly) and be told “thanks, but no thanks.”
I was glad I did because he called me before my appointment and told me I could not be a candidate for the endobronchial valves used in the procedure because, as he read in my record, I’d previously had LVRS. I was disappointed, to say the least.
“But have you considered having a transplant?” he asked.
I had not. But I made an appointment to go see him on the spot.
I have no idea what, if anything, will happen now. But if I had not read about the procedure and reached out, I’d probably be lying in bed at 3:30 in the afternoon with a bowl of chocolate ice cream watching re-runs of Leave it to Beaver.
I’m gonna keep reading.
What is the main reason you visit COPD.net?