What matters to you the most as a COPD patient?

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What is most important to you as a COPD patient (eg symptom control? Exercise tolerance?) and what has helped you the most along the way? (eg. medication/pulmonary rehabilitation/smoking cessation)?

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  • Posted

    The most important thing about my copd is that I continue to exersise regularly to get the best out of my lungs ,thus avoiding having to have suplymentary oxygen 
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    • Posted

      thanks for your reply! what kind of exercise do you do? walking/running? or have you found other things that help? i've heard qi gong is useful?

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    • Posted

      I go to the gym ( following PULMARY rehab in 2008 ) I used to go twice a week ,I tried to do ,,,,1 klm on treadmill , 3 klm on the bike ,,,1000 meters on the rower,and 3/5 klm on the handbike ( sadly last year  due to other health problems I couldn't exercise from December 2015  until  August 2016 ) so when I had my tests in September  last year it showed my fev had dropped to 63 and consultant wanted me go on oxygen ,,,I said no way and asked for a chance to improve ,,,I spoke to the trainer and we decided I go to the gym 3/4 times a week and do a bit less ,so That i recover quicker and better ,and it's worked as when I saw consultant again last December and had tests again my fev was 76 ,so now I do gym 3/4 times a week for 30/40 minutes ,and try to do I klm on treadmill ,3 klm on bike and try to vary using some other equipment to keep it interesting, and this  seems to working better for me ,

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  • Posted

    For me it was the exercise I really enjoy it and it breaks up my day.  It's fun to see how much more I can push myself every day.  I started out a few minutes now I am up to fifty minutes of cardio a day.  Sure I huff and puff and sound like a steam train,but  I not just have copd but was really out of shape.  

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  • Posted

    What has helped me the most is this forum. Just being diagnosed a few months ago. The 6 minute walk test showed my levels dropped below the magic number of 90. In Canada that is the number that requires oxygen on exertion. I have learned a lot here. While resting I am 95 on average. I was devistated to find out I need part time oxygen. After reading Nannys posts I have now enrolled in a excersize program for COPD. I start the new class in April. But it was this amazing forum that took my hand when I was reaching out. 
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    • Posted

      Hi...I've been on this forum for about 2 years now.  Please, I hope no one thinks I am being critical or rude but I have a serious question.  I DO respect everyone's opinions and suggestions, so bare with me on this.  I have read several times that people say they refuse to go on oxygen or like you stated that you are devastated that you needed to go on oxygen part time.  I was diagnosed one day when I got woke up, was quite dizzy and just didn't feel well.  My husband had brought home an oxymeter from his mother's house after she passed away.  He put it on my finger and my oxy level was 72.  We called the doctor and they said to come in immediately.  They did an EKG to make sure I hadn't had a heart attack.  Then a spirometry was done, which was very poor. My doctor put me on a portable oxygen tank, then sent me for a CT scan which proved I have emphysema.  I was told to stay in the radiologists office until he had the results, which was within 15 minutes.  For 3 years now, I have been taking Spiriva in the morning plus Symbicort.  I am on oxygen during the night AND I use it if I take a nap sometimes in the afternoon.  I have a rescue inhaler, which I have NEVER had to use.  If I did not keep my medications right with my skin care regimen, I might forget to take it, simply because I feel so good.  My husband and I walk 2 miles every day, unless we have other plans.  I was at Stage 2 when I was diagnosed.  At this point in my COPD, I only have to go to my Pulmonary Specialist once a year, and my lungs have not changed. Sorry to be so long winded (a little play on words there), but I just wanted you all to know my history.  My question is:  Why are people so adverse and afraid to go on oxygen?? I truly feel it had GREATLY be beneficial in maintaining my health.  By the way...I am 75 years old, but do not feel like it.  I am not trying to boast or be rude, it just amazes me that people are so afraid of or embarassed to be on oxygen.  I respect any and all replies.  smile

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    • Posted

      Hi sandy ,first let me say well done  ,👏And I'm pleased it helps you maintain a good lifestyle,,, I was diagnosed with asthma back in 1992 that was when I gave up smoking ,then in 2008 I was diagnosed with bronchiectisis copd ,regarding the use of oxygen in my case ,,,,,when I first did the pulmary rehab they asked what I hoped to get out of it ,and I said never to have to go on oxygen ,,,as many years ago ( yes I know times have changed ) I had an uncle who used to sit in his arm chair in the corner attached to a large black oxygen cylinder,,,,,and I never wanted to be that person ,,,,and I have  worked hard over the years to achieve this ,of course if I HAD to go on it I would I'm not silly enough to refuse to have it ,but I continue to work hard to avoid it as long as possible ,,,,, I am aware that the day will come when I have to give in and accept it ,best wishes ,x

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    • Posted

      Sandy that you so much for sharing your journey. In my case everything happened so very fast. I was diagnosed with emphasema then was reffered to a Resirologist. He put me on an inhaler and a rescue inhaler. Gave me  check up then said he would see me in 3 months. Then in 3 months I saw him again. Both times he took my readings. 95. Said my lungs were clear and I was doing great. Then he ordered the spirometry test. That was ok. I was having such high hopes. Then he wanted to do a last  test which was the 6 minute walk test. My level on the test dropped to the high 80s. Then repeat the test with oxygen. Within 3 days I get a call from the oxygen supply company saying they will drop off my oxygen canister and cylinders that I could use outside. Not at night, not when resting. Only on excertion. I see him next month with lots of questions. I was just surprised that after reading on this forum that many have much lower levels than me and are not on oxygen????? Maybe it's different depending on where we live. I am in Canada. That is my question. I hardly use it but will if I am doing heavy housework. Thankyou for your wonderful reply to me. 

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  • Posted

    You are welcome, ellen68007!  My whole point is.....IF your doctor prescribes OR suggests part time oxygen, PLEASE  make the choice to take his/her advice.  I truly feel that it has been a life saver and has helped to control my COPD.  Keep up all the good information on this forum....I think we need a "group hug"..smile

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    • Posted

      Thankyou again! Yes I totally agree with you and yes I have taken his advice. He is a young specialist. I am getting used to the new routine. Thankfully at this point it's just part time. It's sure not the end of the world. Now I have to help myself which I have by joining the local COPD clinic. The new class starts in April. I am already registered for it. I see the specialist in one month so now I just have to get on with it. In the meantime I have started my own excersize right here at home. We have a very large backyard so I am doing laps. 3 laps a day but working to gradually do more. Yes a group hug  is in order. One awesome forum!!!!

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    • Posted

      ​Hi Sandy! I have been thinking a lot of your comment. I have a question that perhaps you can help me with. Of course I will do what my Respirologist suggest for me. How did they determine that you only needed oxygen at night? Your levels were so low at first. At night time my respirologist recommended a cpap machine that keeps the airways open. The little container is filled with distilled water. I use a very small comfortable nasal mask that is not combersone at all. No oxygen. Just in the daytime but only on excertion. I use an oxygen cylinder when I go out to my back yard for excersise. I know I will learn more once I see the Doctor but just wondered in the meantime why just at night?
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    • Posted

      Hi Ellen...good question.  I DO know that you don't breathe as deeply when you are sleeping.  Quite honestly, I have not talked to my doctor about that.  Perhaps it is because I take 2 meds in the morning and I have a rescue inhaler which I have never had to use. I'm sure that he knows that I am aware if I am having a problem during the day.  During the day, I feel great.  My doctor had me take an in-home sleep test one night WITH oxygen and the next night without oxygen.  My oxy level was acceptable WITH oxygen but he determined I should bump my oxy to 3.0 ltrs instead of 2.5. I also have an oxymeter that I will test my oxy level if I am feeling not QUITE as great.  (I don't know if that makes any sense).  We live in Colorado so we do go up in the Rocky Mountains in the summer quite a bit.  I HAVE found that if I go above 10,500 feet, my breathing is quite labored.  We live close to Denver, which is 5,280 feet high.  Since we have a motorhome, that is the way we travel.  My husband doesn't like to fly and I have never asked my doctor if I could fly or not.  My husband is on a cpap...he has sleep apnea.....was snoring terribly AND would quit breathing when he was asleep.  I was constantly reaching over to see if he was still breathing during the night.  It sounds like the same cpap set up that you have, except he has the large mask, which he prefers, for some reason.  We are BOTH sleeping much better.  He jokes and says "I just hope we don't get our hoses mixed up".  I guess we all have different issues and treatments with COPD.  For now, I am very comfortable with my treatments but will do what is necessary if my doctors recommend different meds, etc.  Please let me know what your doctor says and advises after you see him/her next time.  Where do you live?  If you don't mind my asking...how old are you?  I am 75.  At age 69 I was told (incorrectly) by a different doctor that I had asthma, 6 years ago.  I wish I had been properly diagnosed when I was first having breathing difficulties...but that's ok.....I am on the right track now with GREAT doctors and keeping a very positive attitude!!  cheesygrin

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    • Posted

      Hi Sandy! Again that's for the reply. I find it soooo interesting how sometimes with COPD that the treatments can differ from country to country. I think it depends on a lot of issues and what stage it's in. I am 74. I live in the province of Ontario, Canada. I have received a few comments from others that were surprised I was on oxygen. 95 average  sitting. Drop to 90 and high 80's on excertion. In any case after lots of testing this is what has been recommended for me so that's the way it goes. The CPAP machine was the first thing I was put on as much as the sleep apnea test revealed mild. My very young respirologist says it helps tremendously with COPD as it keeps the airways open. I have had this now for about 6 weeks. Sure was hard to get used to. I did get a chuckle from your comment that you and your husband hope you don't get caught up in the hoses!!!! Hahahaha When the Proresp company came over for my follow up he brought me this gadget called Aerobika. I though "another thing to get used to". Google it. Very interesting. Just something you hold in your hand. You take a breath then blow it out. It is to loosen any mucus buildup. It's realativeky new. Keep in touch and so will I. I am doing better each day with all if this learning!

       

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  • Posted

    Are you running an unofficial survey? And to what purpose?

    To answer my own question, OF COURSE it's unofficial for when Patient wants to survey us, they're upfront about it.

    That leaves the "who are you and why are you asking"

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    • Posted

      Hi aitarg35939....I really don't know who is running the survey.  I just think that those of us that have responded to the question are only concerned about one another and are interested in what is helping each other.

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    • Posted

      Sandy, I don't recall having challenged the conversation between people. GENUINE surveyors and grad students on here are always quite clear & upfront. Fellow disease sufferers introduce themselves virtually always.

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    • Posted

      Sorry.....I was not at all inferring that you were challenging the conversation.  My reply was just a response that I personally did not know who was running the survey.  I did not in any way attempt to challenge OR be rude to you.  So, so sorry if you mistook my intension.  confused

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    • Posted

      aitarg35939......By the way.....noticing the time differential in your and my responses.....where do you live?  I am in Lakewood, CO  USA  cheesygrin

       

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    • Posted

      This wasn't an official survey/discussion and I would normally delete the entire discussion but as there are now separate discussions I will leave. If anyone posts discussions like this please use the Report link to let us know as there are many unscrupulous posters who will try and take advantage of forums users for product promotion etc.

      Regards,

      Alan

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