COPD Symptom/Treatment

I want to follow up with all of you about the care I am receiving here in PA. My doctors are not very helpful as I have mentioned before. Now I am told the insurance companies will not cover a bath chair for my safety, my oxygen for daytime/portable usage and assistance in physical therapy. According to the powers that be my numbers are too good. I guess I should be grateful for that, but since I have been very quickly below the acceptable levels and hospitalized as a result of the falling numbers (not to mention inability to breathe) I am concerned if they take the very things that are helping me to maintain my health, how quickly am I going to end up back in the hospital. I feel as though the medical profession just doesn't seem to care. Either way, they make their money. Am I being cynical or what? I know I want to fight for my life but I'm beginning to feel like a salmon swimming upstream. Any encouraging words or suggestions would be appreciated.

18 Replies

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  • I would fight em tooth en nail poiting out the observed logic will cost them more in long run when hospitslised threw neglet or negligence.

    Once you write stuff down its formal BUT dont get to excited carried awsy.

    Use words like home carers and indepent living and like i have said BUT have to ballance letter so they feel good about helping you.

    Dont be affraod to appoligise for tone then talk about frustration and thank them for taking time to listern

    This skill to writing letter could say its art BUT got to hit all right emotions

  • Funny, after almost 50 years of customer service in the medical field I have the most trouble representing myself. I know that's partly because I let my emotions control me. I was always a good advocate for others and could always help people achieve their goals with their doctors or insurance companies, but when it comes to my own needs I become a bucket of tears and a swarm of anger.

  • Easy done but just need to tske big breath and grab bull by the horns.

    All your experiance will help compose your letter then if you have to call can use it like a script

  • Never give up Pookie and keep fighting. We are here for you. Xxxx

  • It's times like this that I bless the NHS, for all it's failings. It's also why we must prevent the rise of private medicine in the UK.

    I can't remember where you are - is it USA? If so have you joined the American Lung Association too? x

  • Yes coughalot2 Pookie is in the States. I believe PA is the code for Pennsylvania.

  • It should be PE not PA :) x

  • Maybe, but it's not lol x

  • No, I haven't joined the ALA although I've been thinking about it.

  • Don't think, do. lol x

  • Surely if you've got worse Pookie, you can apeal to the insurance company? Show them your new figures? Any hospital documentation from your time in there.

    Hope you'll be ok.

  • Now there's the rub......after two solid weeks 24/7 on oxygen my counts are up, therefore I don't qualify for oxygen any more, even though it is the oxygen therapy that has helped me get my counts up. If you follow that reasoning, then it would make sense that any treatment of any disease would stop when you show improvement. My doctor would rather believe I have had a divine intervention than pursue effective treatment. I am praying he's right.....I'm ready for all of us to be healed of this horrible illness.

  • Thanks to all of you for your support. My numbers are up and therefore I no longer qualify for oxygen therapy which has been most helpful in getting my numbers up. I am feeling much better overall than I have been all summer, but the weather has broken and the oppressive heat and humidity have ceased. However, I broke out in an unexplainable rash in several areas of my body yesterday.....no bites, no allergic reaction (no changes in food, drugs, activity).....for which the doc has given me a topical cream to alleviate itching. Right now I am just laughing. I think God's messing with my head! Oh, yes, they delivered the bath chair after waiting two weeks.....it's so big I'll have to renovate the bathroom for it to fit in the tub! Again....I'm laughing! So laugh along with me for surely that is all one can do in this madness!

  • Just a thought Pookie, but can you not apply to your local parish/state/whoever for a disability grant to maybe change your bathroom to a wetroom? Surely that might be more helpful for you?

    I'm sorry you're going through all this trouble. Regarding your oxygen numbers, could you not give the insurence people the numbers you had BEFORE you went on oxygen 24/7 and say to them look, these are my stats without oxygen. My numbers are only as high as they are BECAUSE of the oxygen therapy you've allowed me to have. With no oxygen my numbers are so low then surely I qualify all year round for the therapy?

    Take it to their managers. Don't just listen to the monkeys on the phone. Go to the organ grinder. And take it to the managers managers if you have to. Go all the way up the chain. Don't settle for unsatisfactory answers.

    Same with your doctor. Go seek a second opinion with another doctor if you feel you need to. I apologise in advance to you and anyone else here that may be religious, but I'm not - and divine intervetion just isn't going to happen. For any of us. You need effective treatment, and like us on this side of the big pond, it sounds like you need to fight for it.

    Good luck x

  • Hi Pookiesherlock, bath chairs aren't very expensive, you could buy one without insurance. I'm not using one now, but I have in the past. As far physical therapy is concerned, check out some videos on YouTube: COPD exercises. I don't know what to tell you about the oxygen except buy an oximeter so you can check your oxygen levels once in awhile that way you will know for sure if they are low. If a Dr. Prescribed oxygen wouldn't insurance have to pay for it? Sorry, that's all I've got.

    grannyk3 🌹

    ok, well you answered several people while I was writing my answer to you so mine is moot now. Oh yes, maybe find a new doctor 😉

  • Thank you. Yes, I am going the self-help route. Amazing.....I wonder if we can get medical degrees after this?

  • Hi Pookiesherlock

    First of all that is one hell of a name I'll never remember it.

    Anyway sorry you feel so frustrated like a salmon swimming upstream because of your situation

    I think you should think about the things you need before your next visit to your medical advisor so that you are ready and able to discuss the things you need

    After all you are the only one that knows how you feel

    Good luck and am here for more discussion if you wish

    Regards Graham

  • Thanks again for the encouragement everyone. Today I fought with the aging office about the bath chair.....I'm going to get my own. I cancelled the assistance during the week. I'm feeling better, watching my oxygen with an Oximeter (I purchased myself). If I have to I will pay for the oxygen myself too. I developed a rash which is apparently a reaction symptom to some medicine according to WebMD, likely the antibiotic. The real question I have now is why didn't they do a test to determine what bacteria caused the infection in the first place? According to the CDC this is something that is necessary to determine the correct antibiotic to administer. I am trying to keep a positive attitude, watchful but I don't want to focus on ill health. I am trying to take each day as it comes with joy. Knowing you all are there to support and advise helps me to do that. Thank you.

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