what I've learned

what I have learned about copd is the first thing you need to do is see a respiratory dr. As far as oxygen & stages go, I have been totally oxygen dependant for about 1 yr now. I am end stages, my level with an oxometer depends on if I'm doing anything or not. If I'm watching tv it's about 96-99. Moving around it can go as low as 40's. I am also at a 3 which is where I started..believe it or not I still worked 40 hours a week as a housekeeper at the hospital until about a year ago w/o the oxygen. I quit when I always had to lean on something all the time

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  • Hi frissykat I would just like to welcome you to COPD Friends. I don't normally come on this site because I am in the UK but I have watched the forum grow since it started a couple of months ago and there are some good people on here if you are looking for support.

    I am sorry to hear to you are so ill with your COPD.

    I wish you all the best.

    Regards. John

  • Hi John..thank you for extending a welcome to me & your sympathy..I just look at it like it could be way worse, I could be physically unable to get around among other things. With that said I guess the two things that I really don't like is it takes me all week to do what I used to in a day & that my skin is so dry from I presume wearing the oxygen 24-7 that it just flakes off which is actually why I came here looking for remedies. hope I meet you here again

  • my ox is set at 5

  • So sorry to hear that Joe. Maybe you could tell us a little about your daily routine.

  • i live alone, spend most of the day on FB

  • well at least you have that because it must get lonely living by yourself. I know you must not be able to move around much if your on 5. At 3 I have some days where I can do things then other days where just going to another room taxes me. Hope to hear from you again

  • Frissykat I do have a respiratory Dr

    Since my original post I def find that moving around more really helps. I am a very independent woman who is almost 70. I push myself a little more each day and so far it seems to be working in my favor. This condition is not what I was looking for as I retired last December. I have learned that stress plays a huge roll . 49 is an awfully low read, please take it easy and don't push yourself to that extreme. Wishing you good health

    Babchi

  • Thanks Bachi, I guess I do it because as soon as I've sat down for a few minutes it does go up again. I turned 71 this year. thanks for the encouragement

  • You are so right that the first place to go when having respiratory problems is to the pulmonary doctor. they know the tests that need to be done and the meds that are used for it. I'm also at a 3 on my oxygen and have found when I'm in a flare up if I go out I need to turn it up to a 4 when walking. My doctor said not to go below 88 as I would go into hypoxia. What inhalers are you on ? I currently have Combivent Respimat, Dulera, Tudorza Pressair for inhalers and I also take Daliresp which is a pill.

    Make sure you drink lots of water and keep exercises, I can only do walking right now doctor wants me to do 3 times a week for 45 miuntes each time. This is what keeps the lungs strong. Have you done Pulmonary Rehab? I'm on the wait list to do it.

  • I have done pulmonary rehab & they turned my ox up to 5 for that. your on a lot of meds..I was on dulera, Spiriva. I did try daliresp but it gave extremely bad eye pain so I had to stop

  • Love you write, thanks

  • I am thinking of trying out the Inogen 3 portable concentrator Has anyone you know of purchased one

  • I have known people who have had inogen. It's possible your insurance will pay the rental but if you buy one let me know. I've looked into it but it's pretty expensive

  • I have the Inogen 3 and it doesn't go up to 5 liters. Mine is paid through Medicare.

  • Yes it is I think $3 to $4 thousand

    I spoke to a salesperson there is a 30 day free trial if you don't like it they charge you $100

    I would have to buy it because I don't want to give up my oxogen in the house that the insurance pays

    I want it for travel and going out because I don't like taking the tank

    I have also had my home concentrator shut down and had no back up that was scarey

    I can't stay here in Ny during the winter I actually breath better in PR I look at it this way We are worth it I would rather give up other things

    I'll let you know

  • I have been told that Medicare will pay for both the in-home concentrator as well as the portable concentrator if you doctor prescribes it.

  • they could..medicare pays for my concentrator. I had my name on the list for a portable concentrator but I won't be getting one now because my ox co. no longer have the contract with medicare. But they have to pay for my home concentrator for 2 more years because I had a 5 year contract with them of which I have 2 more yrs. You can call your ox co & ask them how it works but that's the way it was explained to me.

  • Are there other suppliers in your area?

  • there are but the way I understood it when the Dr. explained to me is (& I certainly could have misunderstood) that you are signed for 5 yrs with a co. but they are paid for 3 yrs & no one else will sign you on until your contract is done. If you call an ox co., medicare or your Dr. they could probably explain it a lot better then me..It's complicated :) got that from facebook..LOL

  • My oxygen supplier provided me with a home concentrator and they give me tanks for when I need to go out. However, I have found that 1 tank does not last long enough on the days I work my part time job. The company I am with has a 4 month wait for a portable concentrator and they told me to call Inogen. The contract binds them to servicing you, not the other way around. If they cannot provided for your needs (according to your doctor, of course) them you can go elsewhere.

  • your co. does have to supply your needs but a portable concentrator apparently is not a need as long as you have portable tanks & no one will pick you up until the contract expires because they won't get paid. Which doesn't preclude renting or buying one on your own. Again that is the way it was explained to me. You should call or email someone who deals with this for your benefit

  • I went to a meeting on this at National Jewish in Denver. If you are on Medicare that is basically right. Medicare has judged that the concentrator has a life of 5 years, but after they have paid for three years for the same person the equipment has been totally paid for and Medicare pays nothing more for that person's equipment for 2 more years. However, the company must continue to provide the same service for two more years. So it works out that you probably are locked in for 5 years as no other company would likely supply you if they were not going to get the full 36 payments before having to provide 24 free months. After 5 years, you must receive different (not necessarily new) equipment. Again, this is Medicare - the rules are no doubt different in other situations. What bothers me is that my concentrator was very obviously not new when they brought it 4 years ago. I think it must be well over 5 years old.

  • Nancye that's the best explanation I've heard so far & absolutely true, but when inquiring about a port conc I was told they aren't giving them out now because apparently there are bids to medicare & apparently my company wasn't one of them. After this I'm a little confused as to what I would do after the next 2 years if I'm still here

  • Thank you for the info DeanneQ certainly worth asking

    Wishing good health

  • DeanneQ I have a question for you about professional hair dye care. Do you know if it is safe to do while on oxygen? I am not concerned about the odor, I am concerned about it being flammable. My stylist has not performed this service on her clients. Right now I am going all grey but I would prefer not to, it just makes me feel better about myself.

  • I have no idea - I did a little research and I could not find anything other than that the fumes themselves would not be beneficial to you. Certainly there should be no flames around but that is already a given. To be safe I would ask a respiratory therapist or your doctor.

  • I did he said let it go grey

    Maybe zi need to weAt a hat lol

    Thanks for getting back to me

    Looks like pixie cut and grey for now

  • God bless you!

  • And to you also🙏

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