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What has been your experience navigating the healthcare system as someone with COPD?

Have you had a positive or negative experience? Let us know in the comments below!

  1. My biggest complaint is with the health insurance regulations. They only pay for the cheapest basic equipment. Nasal cannulas and tubing that is hard on ears and nose. Tubing that curls and catches on your feet. Home oxygen concentrators that are very old and loud. There are better products out there, but insurance won’t pay for them. I am fortunate enough to buy them myself, but I feel sorry for others that cannot.

    1. You are not alone in that complaint/concern! I also get frustrated when I see some of the equipment provided to home patients when I know there are many better products on the market. Sometimes, depending on the homecare company, they will give you the "better" product without going through insurance, but that's not a guarantee.

      Lyn ( site moderator)

  2. My experience with inpatient care has been really good overall, as folks in that sector are kind and caring and thorough. On the other hand, with outpatient/home care, not so much. The PT folks did a great job, but the nurses and Doctors have been lousy, really. They are very nice when they're here, but that's almost never, and the rest of the time I am ignored and have to go to extreme lengths to get anyone's attention. I have to struggle to get them to keep my prescriptions running right, sometimes having to get mean to get any action. Visits are inconsistent, irregular, and my issues mostly ignored until I raise Cain with them. It's like if I want decent service at all I have to literally get rude. I don't like that. To me it's no kind of way to operate. I've tried to learn ways to get effective results from them without resorting to verbal assault, but without a lot of luck so far. But I will not beg and I will not tolerate poor service. These people are being paid, and my costs are high enough that I should be getting white kid glove service. Rant, rant. Aargh! Maybe I need some more coffee. But seriously, y'all, I have to try hard to regulate my mouth sometimes with them. Not how I want to live. I just have to keep trying to fine tune ways to get what I need with a minimum of force. But I won't lower my expectations.

    1. Hi kloker, and thanks for sharing how you manage this condition and your experience in dealing with the health care system. I'm sorry you have had the sorts of (non-supportive) responses within the system. Sadly, I hear more and more of these types of experiences today.
      I have found (like you), that one has to be their own best self advocate when seeking out even the most basic kind of medical input.
      I'll be curious to read about what others have to say in response to my colleague, 's posed question.
      Thanks, again, for being the first one to chime in!!
      Leon (site moderator

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