Been told I have copd have not told anyone
Posted , 6 users are following.
I am recovering from my second bout of bronchitis and all the dr said was excercise stay away from crowds at xmas and get my flu and pneumonia shot. Any body have any advice for this new be.
0 likes, 38 replies
Nanny1086 pam34048
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Hi Pam ,first let me say it was good advise ,I've copd since 1992 and was told in 2008 that exercise would be good for me ,like you that shocked me ,but now I'm age 71(tomorrow) and go to the gym 2/3 times a week I do 1 Klm on the treadmill,3 klm on the bike ,5klm on the hand bike ,2weight machines and sometimes 1000 meters on the rower ,and yes get the flu jab and the pneumonia jab ,and keep away from people with coughs and colds as much as possible ,ask your GOP to refer to pulmary rehab,you won't regret it ,best wishes
pam34048 Nanny1086
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Thanks for your response,wow you do all that I'm 50 and thought 20 was a lot. I've become Leary about crouds and germs it takes so much to get over the common cold. I think now that I am felling better I will up my excercise with your inspiration.
Nanny1086 pam34048
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Your welcome ,Honestly ,I was shocked when told by the cold nurse specialist that I need to move more i.e.exersise ,my hubby used to say leave that I'll do it you only get breathless,,,,so I did ,but it was wrong ,and now I know that ,obviously you can't avoid all germs but be sensible wash your hands regularly ,,,I always have a hand sanitizer spray in my bag ,and when I go out and it's really cold I put a scarf up to my nose and mouth as sudden cold air takes my breath ,and if you take your medication regularly you will do fine ,as inspiration ,,,, last year I had a prolapse bowel and bladder so exercise was not possible ,when I saw consipultant in September I had lung function tests and they had dropped quite a lot ,so he talked about me going on suplymentary oxygen .i explained I hadn't been well enough to exercise and asked him to give me 6 months to get my levels up ,he agreed and as my other health problems had been resolved he said I'll see you in December,so that's when I upped my fitness to 4/5 times a week ,and it paid off ,I had the tests again and I had improved from 63 to 75 fev ,so no need for talk of oxygen needless to say he was pleased,and so was I ,and I go to the gym now when ever I can intending to keep my levels up ,sadly the last few days have been terrible weather so I've not been ,,, but I will be there tomorrow ,best wishes for your future good health .💐👍
CherylH Nanny1086
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ellen68007 Nanny1086
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That is so encouraging!!!! I as well was dianosed with COPD a while ago. I was a long jounery of testing due to routine blood work where me red blood cells were so high. I was tested for polycythemia and finally a diagnoses of secondary polychythemia. The cause was COPD. Not enough oxygen. I since have been on cpap machine at night which helps keep my airways open. I don't have sleep apnea but this works for some with COPD. My question to you is do you have to use supplemental oxygen when doing all of this excercise? I would get very winded.
Nanny1086 CherylH
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Your welcome Sherry ,it's not all doom and gloom ,it's how you cope with things ,it's easy to say I can't do that I've got copd etc etc ,,,,concentrate on what you can do and try to remain positive ,, at the end of the day if I can do what I do at age 71 with ,, asthma ,bronchiectisis,copd,osteoporosis,high blood pressure,ulcerative colitis and uneractive thyroid ,,, think what you can do , yes you will have setbacks ,I've had numerous infections over the years (diagnosed with asthma back in 1992) even a spell in ICU with septasyma one Christmas ,but with the help of the PR team I recovered and was back in the gym by June that year ,
i wish you well ,and best wishes ,👍
Nanny1086 ellen68007
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hi Ellen ,no I'm one of the lucky ones I have never been presctpribed oxygen , I am on three inhalers and montelukast ,and other medication for other health problems ,
but where I used to exercise twice a week for an hour ,the trainer suggested I reduce it to 40/45 minutes 3/4 times a week,,,,making my recovery time quicker and easier ,,,,,,( the trainer knows how hard I've worked to avoid it going on oxygen ,) it seems to be better for me ,
best wishes Ellen ,😘💐
ellen68007 Nanny1086
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Thank you so much for getting back to me. I hope you can avoid oxygen as well. I feel very confused to be honest. I have this oxygen machine delived to my home. I am only to use it when on exertion. Going up and down stairs. Heavy house cleaning. Only have had it for a week now. It's used on an average of one hour a day. Not at night. Not when sitting only on exertion. I was also given containers to use in a back pack. Only to be used for excertion. I tried using it two days ago. Walked around my large back yard twice for exercise. Guess I can't complain.
sandy58386 ellen68007
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Hi Ellen and Nanny. I guess prescriptions differ with each doctor. I am only on Spiriva and Symbicort. I have a rescue inhaler; however, fortunately, I have never had to use it. However....for me, the BIG thing is that my doctors put me on oxygen the day I was diagnosed. I only use it at night and SOMETIMES if I take a nap in the afternoon. I personally feel that the oxygen has been my lifeline. I feel SO good all of the time that if I didn't have my meds sitting right next to my "skin care" products that I use every morning, I would probably forget to take them. I only need to go to my Pulmonary Specialist once a year and I have only had 2 exacerbations in the last 4 years.
sandy58386 Nanny1086
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Nanny....you always say such inspirational things. Yes, it can all be scary at first; however, I too feel that you CAN live productively with COPD just by changing your lifestyle. Keep up the good comments!!
Nanny1086 sandy58386
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Thankyou ,it's important to remain positive,,,I got quite depressed when first diagnosed with the bronchiectisis ,,,,on top of the asthma and everything else ,,, but then I went to pulmary rehab ,,, that's when things changed for me ,best wishes
Vee2 pam34048
Posted
Hi Pam
If you haven't already do check out BLF pages, and search bronchitis
https://www.blf.org.uk/
if you contact the helpline more advice and information packs are available, generally you can access these as pdf downloads, check out blf pages. Bronchitis comes under the COPD banner.
Also patient UK pages: https://patient.info/search.asp?searchterm=Bronchitis&searchcoll=All
You may find some information of interests under tips post:
https://patient.info/forums/discuss/tips-know-the-difference-478568
pam34048 Vee2
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aitarg35939 pam34048
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What Nanny said about washing your hands is crucial. The minute you get home, wash your hands for the full 20 seconds - any soap is fine so long as you do it properly. If you use public transit, go wash your hands the minute you get to your destination & before you go in your office. If you haven't already trained yourself not to touch your eyes & anywhere on upper lip & around nasal openings, starting learning now. I can't use most liquid hand sanitizer (too drying) so I keep a container of sensitive skin wipes handy to the car front seat. Even if there was a wiped available in a store for shopping carts, I still clean my hands when I get in the car. use a drive-thru bank canister, library computer, gas pump, credit card keypad? Clean your hands. A librarian once told me the things he saw people do with their hands while sitting at computers, furthering my belief that many of my fellow Americans weren't even raised in barns but out in the pig sties by the nastiest of pigs. The most harmless & frequent offenses are the worst for you: our friendly hand-coughers, nose pickers and hand-to-nose wipers. I have no doubt that these offenses are seen less frequently in Canada & the UK, but it only takes one.
If you smoke, stop now. Had I stopped for good when first diagnosed, I'd be better off than I am now & perhaps wouldn't now have bronchiectasis to add to my challenges.
Don't let anyone else smoke in your house, car, office space. Limit or eliminate your exposure to chemicals, perfumes and dust, also mold/mildew. I recently screwed my lungs by using a very gentle color corrector on my hair. I could tell the chemicals were worse than my ammonia-free dye, but ,,, I was getting ready for the wedding of the century! 30 hours later I started coughing blood; 36 hours later I was in the ED; 40 hrs after that I was coughing up darker blood & returned to the ED. Maybe it was coincidence but my new pulmo & I doubt it.
Take your lungs & illnesses seriously as lingering lower respiratory infections scarthe lungs. The scars cause havoc down the road.
And yes, exercise.
aitarg35939
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pam34048 aitarg35939
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aitarg35939 pam34048
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Sounds like a healthy diet! I eat all that stuff already though the only thing I eat on a daily basis are raw almonds.
Talk about looking like a robber: I've been wearing a mask in public for 6 weeks! While I would gladly have been out protesting The "Election" of The Awful Hair had I been fit, the police said that they'd give special attention to those wearing masks so I try to smile broadly a lot beneath my mask.
Gloves are an excellent solution - and they can make you look like a great lady of Downtown Abbey!
pam34048 aitarg35939
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aitarg35939 pam34048
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I've gotten over feeling silly about it. 4 visits to ED & 1 hospital stay of 4 days is enough. I had pneumonia followed by inflammation at the bottom of one lobe, and now bronchiectasis above the inflamed area. It's been explained to me ad nauseam that I've now got the perfect breeding ground for any bacteria that gets down into that lobe. The hospital doc said to wear one whenever I was around sick people or children - ha! They're everywhere.
Before now I only wore them at the doctor's office and hospital, partly for me & partly because my cough is enough to convince anyone that I MUST be contagious.
The masks inhibit breathing, especially under exertion. I can't wear one more than a couple of hours no matter what. My new pulmo says that the light masks are worthless & only N95s work. They're good for 200 hours but so far I haven't found any that don't kill my nose. He's wrong about the light masks because they at least limit the assault of perfumes and aftershave & smoke. But a doubled scarf end does the same if one has a free hand to hold it in place.
You should ask your doctor. I had chronic bronchitis for 30 years before this happened, & it's my fault. I just assumed that my worsened coughing was COPD progression. I hate pulmos so wasn't seeing one. It so happens that 90% of mycoughing happens after 3 p m. & I only see my gp in the morning. A friend with whom I chat on the phone late at night kept telling me I needed to see someone about the coughing ... A mask would not have savedme from all this unless I happened to have been wearing wla fireman's apparatus the day of a small kitchen fire last spring, and had been wise enough not to overdoing it on yard work a month after that.
pam34048 aitarg35939
Posted
Just got back from go office so many people with same hacking caugh I had a few days ago. I should of takin your advice and worn the mask silly is one thing but small room full of sick people it makes sense to wear it. Well had my shots and sure enough they added a new so new the pharm did not have had to get a proto type from my dearest dr ( incruse ellipta to go with my breo and the hopefully not needed salbutamol ).
had to pee so bad but still had time to stop at the dollar store picked up a jump rope, 2 pound weights,and some dark chocolate they say it opens the air ways. Well as for skipping it's nothing like riding a bike we soooo forget.
well I washed my hands good threw my gloves and scarf in the wash so time to eat. Thanks for the advice it makes me feel less alone.