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.

22 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

  • Thank you Graham. Yours was one of the letters that meant the most to me. Your offer to be there if I needed you was so thoughtful. I have improved greatly through first a change of doctors and then a series of referrals and participation in a lung therapy program. The program is brand new and I am only the third person signed up for it. But our results are great and mine amaze me. A year ago I gave up my car because I was afraid to drive and thought I would only be alive for another year or so. Now I realize I have so much more to live for and an opportunity to do just that. Every time I complete extra minutes on the treadmill or do extra reps in my weights I am thrilled. Not being hooked up to oxygen now makes life easier. Encouragement from all of the people who responded to me kept me pursuing help and finally I was successful. I thank God for sending me the right help both in all of you and in the physicians and therapies. I hope you are well and see some improvement in your health as well.

  • Hi Pookiesherlock

    I am so pleased that you seem so positive and much improved compared with our last contact

    It's fantastic that you are feeling the rewards of your efforts and personal changes ,now like a salmon swimming upstream but with the look of determination in your eye ......well done give yourself a pat on the back and keep going.

    I'm particularly pleased that exercise is helping you so much and that you are giving it a good go

    I've been been doing organised breathing and stretching exercises and much like you treadmill, rowing machine, cycle and the rest for about two years and it has worked wonders for me ( but never over do it )

    This new programme you are involved in ? is obviously very good for you ,it's so good that you found the right road to take you in the right direction

    I feel so happy that you are getting a clear picture of what you want and can achieve in your mind , its what we are all about

    I've rattled on a bit here but if you need any encouragement and you think I

    Can help you I'm here for you and if it beats me there's loads more of us😋

    Hoping all keeps going well for you

    Graham. ( Copdme )

  • 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.

  • Here I am, 3 months later, and I am happy to report that I am in a pulmonary therapy class for the last month and doing well. I found that the treatment I received in the hospital and the follow-up care from my doctor could have been fatal. I changed doctors and obtained a referral to a specialist immediately. The pulmonologist signed me up for the therapy class and altered my treatment to my specific needs. I now take Advair and Spireva and occasionally have to use ProAir before excercising. But my breathing levels are great, I do not need oxygen. I work out 2 days a week at the class using various stretching, arm, bike and treadmill machines and light weights to strengthen my muscles. I also use a treadmill and do stretching excercises at home. Now that colder weather is here I have a little bit of shortness of breath outdoors, but the breathing methods I've learned have been helpful there. I am also enrolled in a group called the "Better Breathers Club" where we learn new things about our lung diseases and how to cope with them. I know I will never be back at 100% breathing capacity but I come pretty close. The therapy class also checks my blood pressure and my sugar levels before and after the class so we keep a close watch on my whole body. I am so grateful to this site, the people who have responded to me and for the therapy I am now getting. I encourage all of you to keep on keeping on.....(I'm telling my age now). I would never have guessed just a few months ago that I can look forward to a longer, healthier, happier life than I've had or expected in at least 10 years. I wish the same for all of you. Bless you.

  • Hi Pookiesherlock

    It's me again I have just read your latest post with interest and it ties in with everything I have written

    Take care

    Graham.

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