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my life with COPD

patty10 profile image
7 Replies

hi i am pat and i am 75,this is my first post 9months ago i was told i had stage two emphasema and bronchrolitis,i am slim and stopped smoking several years ago,i am struggling to find a positive outcome for my self,i have taken medication as prescribed tried to go to pulmonary rehab,changed my eating habits but i am rarely able to leave my bed,due to constant chest infections and generally feel so unwell,i am not able to do anything as i have no strenght to carry out even the lightest task,i have now had to abandon the clinic as i have spent the last 3 weeks in bed,i cannot get to see consultant for 5 weeks and my local doctors just keep giving me antibiotics and taking samples,but nothing changes,i stilln end up in bed ,and while the nurses are great they deal with handling the effects more than any clinical solution,am i always going to feel this bad or will things get slightly better to allow me to live a reasonable life

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7 Replies
chubby2x22 profile image
chubby2x22

Hello Pat. Sorry you feel so miserable. It'svery tiring all these infections. Please try to move a little I'm not at all qualified to dish out info but I do know that when I am unwell sitting suits me better than lying in bed. Think of something nice, to cheer you up. Jane

sassy59 profile image
sassy59

Welcome to the forum patty and I do hope things settle down for you. Try and move a little each day if you can and keep your fluids up. Eat well too if you can to try and build your strength up. Take care xxxx

knitter profile image
knitter

Hi and welcome patty, I know when I am feeling ill everything seems such an effort, but is it possible for you to sit in a chair maybe next to your bed , then try a few hand and feet flexing exercises just to help regain some muscle strength and get your circulation moving.

Sitting up helps with my chest congestion too, as does gently walking around. Could you check with your nurse first, to see how you can walk safely with equipment such as a walking frame to help prevent a fall. The Red Cross loaned equipment to my neighbour just for a while when she needed help.

Hopefully your chest infection will soon be under control, as it looks like you are being tested to try and find the right antibiotic. Have you been given steroids as well and a preventer inhaler.

Best wishes.

patty10 profile image
patty10 in reply to knitter

thanks for advise,specialist took my inhaler from me and told me under no circumstances not to take steroids,i think because i have bronchrolitis they dont work,so just antibiotics,thanks

Kristicats profile image
Kristicats

Hi patty10 I have stage 2 and had 3 infections from Oct last year until end January . Was drowning. But decided to force myself to get going again otherwise I think I would still be in bed. With emphysema flare ups the more dormant you are the longer it hangs on. I had to try 3 different anti biotics but in the end felt it was the lying around that made it linger. You could ask for a second opinion from your Doctor , ask to see a respiratory physician who may look into a ct scan for you. Good luck, hope you up and about soon.

Hi patty10 . I have nothing to add that hasn't already been said by posters who have answered your call for help. I just want to wish you all the very best and hope a solution is found asap. All the best xx

Dedalus profile image
Dedalus

I was feeling like this from November 2017 to March 2018 ( was hospitalised in November). I was getting up each day but just stuck on sofa feeling terribly ill. Couldn't eat, sleep etc. so just felt I was getting worse. I was given no antibiotics as told it was inflammation, not infection. I was given various courses of oral steroids which helped me feel better for short while but as soon as they finished I was back to square one. I stopped oral steroids as thought they may be ruining my immune system. Respiratory Team then gave me steroid inhaler to help with inflammation. I tried supplements, such as garlic capsules, for the phlegm etc. but not sure if they helped (still taking them though). I am much better, but not fully recovered to the point I was before hospitalisation, and still searching for answers. I now need oxygen for exertion and usually have to call taxi when I go out. Still fighting this with exercise and on list for pulmonary rehab. Finally got to see consultant last week, after insisting I had CT scan (which didn't show much change from last one 2 years ago). Consultant stopped my steroid inhaler, saying she didn't think it was helping and also gave me different LABA/LAMA inhaler. Very soon to tell but believe breathing has become slightly better on the new LABA/LAMA inhaler (I did tell Respiratory Team I didn't like the last LABA/LAMA inhaler I was given when left hospital as it gave me palpitations, but they said to persevere and it would be fine - it never was!). Consultant testing phlegm for TB and said she may start me on low dose of long-term antibiotics for inflammation. I have been trying Chinese herbs for inflammation/phlegm for last few weeks and really feel as if they've made a big difference. Sorry to be so long-winded but wanted to describe how there is a lot of trial and error to get to the bottom of these illnesses sometimes. I hope you'll start to feel better soon (I honestly thought I would never get better). Took nearly two months in my case. Hope its not too long for yours. Things will get better eventually so don't give up. Any small amount of exercise is good (I'm 68 by the way) xx

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