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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!”
“Please Dad?!?!”

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • ajschulte
    7 months ago

    Hello mr Davitt. I commend you for searching, I do believe that each individualis responsible of our health as much as our doctors if not more, it has been my habit (not popular amongst doctors ) to tell my Doctor that his knowledge of medicine with the knowledge I have of my body we can achieve much more than a one way medical behavior. So all this to ask you to please could you keep us informed on the results with your Dr. Mostly my interest of course ( I have COPD ) is I was referred to the UNIVERSITY OF S F for a full check up to see if there is anything that can be done to make my life a quality life. So I am hoping… And wishing you good luck. Thank you for the information

  • KevinDavitt author
    7 months ago

    Please call me Kevin. I get a checkup every 3-months from my pulmonary team. I am fortunate in that we share information readily.
    But I discovered Lung Volume Reduction Surgery in an article. It had not been mentioned to me as an option.
    Best of luck with your check up at USF. I hope you’ll let us know how it goes.

  • KevinDavitt author
    4 months ago

    ajschulte – I’m sorry it didn’t go well.
    And I have not found a “miracle cure” yet either. But – I really don’t expect to.

    I’m relying on my medications (first prescribed to me in 2011), pulmonary rehab, support groups and hopefully a lung transplant.
    But that’s a long way off.

  • ajschulte
    5 months ago

    Hi Kevin. As promised here is my experience going to USF. IT WAS A VERY BAD DAY FOR ME could be because I was having anxiety attacks and could not breath for the life of me. By the time I got to the Dr. She wrote that I should try and see a palliative group as one step towards hospice. Total fiasco. Thank God my Drs knew me better so I am sticking with them. Yet my husband and I were so looking forward for some kind of a miracle discovery that would be priscribed to me. Too bad. I must admit I have always been emotional and at times specially now emotions stand in my way. Very sad and disappointed.

  • ajschulte
    7 months ago

    Thank you for replying so quickly Kevin. After my visit at USF I sure will let you know. Meanwhile stay well.

  • Olivera
    7 months ago

    Great, thank you!
    Exactly, man is accustomed to everything.

  • Olivera
    7 months ago

    It’s great to read you, thank you! Reading is my passion! 🙂

  • KevinDavitt author
    7 months ago

    Thank you, Olivera. Mine too!

  • Janet Plank moderator
    7 months ago

    KevinDavitt
    Thank you for sharing a lot of information from your COPD journey. It brought an awareness to me.

    Keep reading Kevin, I will too!
    Janet (site moderator)

  • KevinDavitt author
    7 months ago

    Thank you Janet.

    Always enjoyed what you’ve had to say as well.

    Kevin

  • Janet Plank moderator
    7 months ago

    Thanks 🙂

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