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!
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.
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 COPD.net)
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.
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.
Regards,
Lyn (COPD.net site moderator)
Hi’’I hope everyone’s ok today 🙏🏼 ‘ I would like to share my experience after being diagnosed with COPD,I’m at stage 2 so I’m told.That’s it really cause since the diagnosis I haven’t heard from my DR so I do feel like I’m left in the dark at this time😔Aswell as suffering from OCD and anxiety from a non fault car accident in 2004’Im starting to feel as though I’m not really that much of a case if I can call it that ‘my mental health is suffering to a stage that I’m starting to get angry at life it self’ Sorry if I sound like I’m looking selfish or wanting pity that’s not the case I can assure you.. I need to be listened to and for the doctor to take notice of my appearance and to hear what I’m saying ..IDE like to refer to the subject of self advocate as I’m reading other peoples ups n downs in life I feel as though I need to be more assertive with my approach to what I need the doctors to listen to!As I’ve read on here a few people feel the same’ This is a message to those alike’’Make yourself be heard today not tomorrow not next week’Today our doctor needs to listen and maybe learn from our pain’’TC Onelove 😔🙏🏼❤️💛💚
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I see you have read my comment on the thread about coping with anxiety. There is not much else I can say that I didn't say in that post. The whole holiday season from Thanksgiving thru the New Year is particularly stressful. My biggest problem is not being able to do all the get togethers with friends and family. I missed Thanksgiving due to COVID this year. I did a get together with family and friends a couple weeks ago, but left after 2 hours. About my limit. Christmas eve we are going to my nephews house for dinner and White Elephant for the adults, and gifts for the kids. I am concerned for the amount of time I will most likely be there. With 2 guests being from out of state, I am concerned for carriers of flu, COVID, RSV, etc. There will be 13 people there. A couple I haven't seen in years. Add in the dog dander and dog hair from my nephews two dogs and I could have a flare up. What I do is let everyone know ahead of time that I might leave early if my breathing gets labored. All are aware of my COPD. The situation does create some anxiety, but I deal with it. One way is CBD + 3% Delta8 gummies that definitely calm me down. I also keep my few indoor hobbies going. Scale modeling and playing/recording my own music. I also like watching movies and TV series. I fill in the rest of the daily time with exercise, cleaning, and cooking when not working on models and music. Working on my chess game is another daily habit. I figure that the more I keep my mind occupied, the less time I have to think about stuff that makes me stress out or become anxious. Such thoughts are a waste of energy because those thoughts create more of the same and it just seems to escalate.
As far as your doctor goes, call him and keep calling him to you get a call back. Get an appointment and ask all the questions you need answered to ease your mind. That is what he is getting paid for. If you do not get the answers you are seeking, then change doctors. I am lucky that I have a great medical team as I have stated many times on this board. Also read as much as you can about COPD. The more knowledge you have, the better off you will be. Do your best to stay positive as much as possible. Time to stop writing, already to long winded. Take care and God Bless!
P.S. I am OCD also.
Thanks for sharing, I relate on so many similar levels especially the anxiety 😟. I find I sometimes sit and overthink and give myself anxiety 😥.Music and exercise and doing light housework is about where things are at with me . I m on oxygen 24/7 so I make do . Take Care 😄
Hi,
! It sure is relatable for so many of us. I think we all over think at times. When I am overthinking, I will try to stop and take a few breaths and start to concentrate on something else. I will look at pictures of my grandkids or put on a movie or try to read. Thank you for sharing with us! Best, Jackie (Moderator)
