Living with COPD

Living with COPD

I am 70 years old and was diagnosed about 12 years ago with Emphysema - COPD. It was controlled with Advair, Spireva and a rescue inhaler until two years ago. I started to see a gradual decline in how I was doing. Just recently I have been diagnosed as severe COPD. Oxygen was prescribed for using with exercise and activities. I am not sure how long it takes to tell a difference in how I feel, but after two weeks, I do not feel any different. I keep ready how much better everyone feels after using oxygen. I also see some post they use it at night only. I asked my doctor about it and he said the body does not store oxygen so that was the end of that. I am ok at rest, but just doing the simplest things will make me SOB. I work 35 hours a week at a desk job. I do try to get two 10 min walks a day at my office using oxygen now and that does making walking easier. I have to make myself do that. I have no energy and I feel like every bone in my body aches. Maybe due to lack of oxygen? Good luck to all of you with this dreaded disease. I work in the billing office for a pain clinics and I am grateful I am not in pain and do not have to take the drugs they have to take. So things could be worse.

27 Replies

  • God bless you, I like that "...could be worse." God bless!!!

  • It sounds to me like you should be on oxygen 24/7. Have you discussed that with your doctor?

  • I recently moved to this area and this is only the second time I have seen this doctor. He is basing everything on my tests. I guess because my numbers are mid 90's at rest he felt I only needed it with activities and exercise. I am not very active and if you ever see me run, please call 911, because something is after me. But I am trying to use it more at home even if I am just sitting. So we will see. Thanks for your response. I figure it is a matter of time before I will need it full time. It just seems like nothing is working.

  • Exercise

  • It may sound silly but the more exercise you do the more you will be able to do. Exercise is the key to improvement and there were 2 very uplifting stories on the BLF forum recently

    ( )

    where members had used regular exercise and vastly improved their fev1 readings.

  • I lead 3 classes, one line dance and two dancersize classes having COPD and until recently have had any problems but now I'm wheezing and having a difficult time. Oh, I am 81 yrs. old but

    still plugging away. Exercise is one of the best medicines you could have!

  • I am going through exact thing. Sitting fine - up moving around is bad. At first it did not bother my O2 numbers. Pulm. said not my lungs (after CT), Primary did some upper any activity and I go from mid 90s at rest to mid 80s with the least activity. Have been wearing O2 for last few day and it does keep me out of the 80s. Total quandry as to where to turn.

  • Sounds like you wrote my story! I live in a 31 ft RV at a marina. I walked around it last night to service the black and grey tanks that involved pull a sort of plug and when they are drained, pushing them back. Just from that, when I came in I was down to 76. I guess I need to keep a record for when I go back in four months. I am bad about sugar coating how I am really doing. It is easier for me to fake being well. Please say in touch with how you are doing.

  • PS I have been taking the oxygen off and on "As needed" when I am not just sitting here. So the other day I put it on and was piddling around doing dishes etc. I sat back down after and realized I had not cut the power on the concentrator. So much for off and on usage! lol

  • Exerccise

  • Hi Fldragonfly welcome to the group. I use oxygen at night and when ever I go out for my walks or go do my errands in town. I use 3 liters but have found when out walking I need to turn it up to 4. My pulmonary doctor has me walking 3 days a week for 45 minutes each time, he is trying to get me ready to do pulmonary rehab. Exercise is the key to this disease, it's the only way we can make the lungs stronger which is what we have to do. Last week I went for heart cath to find out if I have pulmonary hypertension which I do have a mild case of, also found out that the left side of my heart has hypertension and that it is getting stiff. I know this isn't good but I'm lost at how it effects the lungs but I know it does. So make sure your doctor is also watching the heart. They put me on liquid oxygen in the hospital and I found I did much better on it then the concentrator, it even brought my blood pressure down to normal. Ask your doctor if liquid would be better for you also. Hoping my doctor will change me over. Don't give up and keep us posted on how your doing. We are here for you.

  • Thanks for sharing. It might be the lungs that has affected your heart. Maybe being at 2 is not enough for me? I go to my PCP this month and will see what she says. Maybe I need to go back to my pulmonary doctor sooner then the four month check up. I am terrible to exercise. It is all I can do to walk and then I have to make myself do that. I am just not sure what difference the oxygen is suppose to make, but so far I am not impressed. I had to stop while making my bed. My oxygen dropped to 84. So I rested a while and then finished. Granted, it is not the easiest bed to make. I live in an RV and it is between the wall of the slides. lol

  • Why do you use it at night?

  • Simply use 3ltrrs. If youdont youyoul be at 4

  • Thank you for sharing your story. I am so glad you are doing so much better. I was doing great in the beginning and just the last two years when I moved from Florida to Georgia and then to Tennessee I made the decline. I was diagnosed from severe to moderate when I was in Florida and now back to severe. I never expected to get much better, but didn't think I would get this much worse.

  • I take probiotics but what strenth and kind do you take

  • I have been wanting to go more natural alternatives. I have been on oxygen since 2008. And different inhalers and such. This pass year has been terrible..Can not find any relief and have went from only using oxygen at night to almost 24/7. I was in hospital one year and a half ago. They sent me home with a Trilogy ventilator. The doctor gets mad because I do not use it four hours a night like he wants me too. I use it only when I feel the need. I like your story and I would like to know what inhalers amd meds you were on and what you use now. Thanks Henrietta

  • I would love that. I have been on so many different inhalers and such. I just tried asmanex and on third day I lost my breathe and my face broke out. Right now I am using Proventil inhaler, albuterol and ipratropium (duonebs in nebulizer) I hate that because it makes my heart feel bad. I used pulmicort for a year and then it started making me gasp for air. The only thing that offers relief and makes me feel normal is a round of dexamethasone and its bad also. I Iwould love to go as natural as possible because I use a lot of naturals for cleaning and such because scents bother me. Thanks for any helpor suggestions you have to offer

  • Thank you

  • I understand your concerns since I'm somewhat in the same place. I have found that while using oxygen for most of the time doesn't suddenly make everything easier, not using it does indeed make things a lot harder. I have found exercise (thru rehab or other--but regular) does make a difference. Some of the tiredness goes away--after the first week or so. I'm able to do a lot more than I thought I would be able to--of course with oxygen most of the time, but I can still do things!!

  • Thanks for sharing. I am going to call my Pulmonary Doctor tomorrow. Maybe I need more then then the number they gave me?

  • I have the same thing you do. For 6 yrs now. My age is 69.

    I have gotten worse in the past 10 months. I wasn't on Oxygen until 10 maths ago. now 24 hrs a day and still cannot walk 10 feet without feeling like I can't get my breath even with oxygen. I use Symbicort twice a day and that is a miracle for me, as well as rescue inhaler.

    I did go to Tampa Fl, last week to the Lung Institute for Stem Cell treatments. And for the first time in 10 mths. the last 2 days, I have been able to do things in my house.

    They tell me I will notice a big difference after 2 mths. I sure hope so. That was a costly adventure.

    Good luck with your problem.

  • Did u have to pay cash cause insurence won't cover it.they told me 7500 for first time 5000 second time and my doctor won't agree cause fda has not seen best results yet.I'm 46 with copd and emphysema have had it sence figuring I was a bartender and waitress for 20 yrs and was around it from all goal was at first was to see all 6 of our kids graduate and this last June the last two I have 5 grandbabies and my goal is to see all go to school .eating right,walk,drink lots of water,and a very loving supporting Husband and family.don't know what else to do

  • I live in Ocala FL and would be interested in hearing more about your experience with stem cell treatment. My husband is the one with COPD/Emphysema and I have watched him go from being a vibrant, outgoing person to becoming a recluse on the couch who literally can''t do anything.

  • I understand what your husband is going through. Sound like myself. This Is a terrible thing that a happens.

    AS for the Stem Cell treatment. It is only a treatment to make you feel better hopefully. Any of us with this mess would love to feel better. It is much to soon to tell you how it has helped me. I had my treatment 27 28 and 29th. They told me I should see an improvement by 2 months.

    NOTE: This is not a cure for cold.

  • Not a cure for COPD

  • I paid by Charge Card. They will take a check, Chg card or cash.

    Insurance will not pay any of the treatment.

    Good Luck.

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