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Lung Conditions Community Forum

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grandkidsthree profile image
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I was recently diagnosed with COPD  after many trusts due to a high level of red blood cells that showed up in. Routine blood test. The cause was finally diagnosed as a secondary Polycythemia by the Hemotologist. The cat scam confirmed COPD. From there a plumanary lung function test. My body is producing these many red blood cells to get oxygen to my lungs. It's been a long journey. Now I see a respirologist every 3 months. He put me on ultibro inhaler which has helped my breathing. I still get very winded if walking to far or going upstairs. Tired as well so now on vitamin B-12 injections which makes me feel so much better. 

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grandkidsthree profile image
grandkidsthree
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26 Replies
millerag75 profile image
millerag75

Hi! Welcome. This is a fantastic place to find helpful answers. Sorry about the diagnosis, it can be very hard to accept it at first. Things in your life might change that you do not even expect, for example taking a hot shower can cause breathlessness. Or even walking behind a tailpipe of a truck or car can cause a fit. This site is so useful and there are very many people to help you out. What is your condition?

millerag75 profile image
millerag75 in reply to millerag75

Oh i apologize,I just read the specific diagnosis.

freddy2399 profile image
freddy2399 in reply to millerag75

many thanks for your reply

grandkidsthree profile image
grandkidsthree in reply to millerag75

Thankyou for your input! Helps to know that some if my symptoms are normal with COPD. It's worse some days then others. When I get a vitamin B-12 injection I fell very well about 2 days after injection. The well being feeling lasts about 2-3 weeks then the fatigue and breathing difficulties begin to worsen. I get my next injection late next week.

Titchy52 profile image
Titchy52

grandkidsthree  welcome to the site you've had a long journey now it's time to lve look to the future best wishes x

grandkidsthree profile image
grandkidsthree in reply to Titchy52

Sure going to try! I have a great family Doctor and the respirologist will be seeing me every three months.

freddy2399 profile image
freddy2399 in reply to Titchy52

many thanks x

freefaller profile image
freefaller

Welcome!

freddy2399 profile image
freddy2399 in reply to freefaller

cheers

diesel12 profile image
diesel12

Hi make yourself at home. Sorry to hear of your diagnosis but at least you're getting the right treatment now. Take care x

grandkidsthree profile image
grandkidsthree in reply to diesel12

😊

freddy2399 profile image
freddy2399 in reply to diesel12

ive not started any treatment yet in 3 weeks i hope x

kflatt profile image
kflatt

Hi. I also had Polycythemia and was still smoking at the time. It disappeared 2- 3 months after I stopped smoking.

ncbi.nlm.nih.gov/pubmed/334...

Kevin

grandkidsthree profile image
grandkidsthree in reply to kflatt

Was your Polycythemia secondary due to COPD?. I noticed the last two visits with the respirologist that he put something on my finger. He said it was to measure my oxygen levels. I forgot to ask him what level is high or low for that matter. I also quite smoking. Hope that helps stop the high level of red blood cells.

Dedalus profile image
Dedalus

Welcome to our lovely group x

grandkidsthree profile image
grandkidsthree in reply to Dedalus

Glad I found this forum!

freddy2399 profile image
freddy2399 in reply to Dedalus

thankyou x

tomhatha profile image
tomhatha

this might help people with lung probs. just copy and past.

gizmag.com/spirocall-lung-m...

jackdup profile image
jackdup in reply to tomhatha

Thanks for posting this and I would like to try the app but can't seem to find it anywhere. Were you able to find and download it? I searched spirosmart and just spiro but did not find the app.

tomhatha profile image
tomhatha in reply to jackdup

not sure but it's an old ( couple of years) one for Iphone  I just read the science stuff as I'm interested in new spintronics and scaffolding cures by scaffolding I don't meen housing stuff it's cures that fool the system to believe it is something else. I'll try and find an app when I have the time but will send address if and when I find it . regards Tom

jackdup profile image
jackdup in reply to tomhatha

I did talk to the people involved at the University or Washington where it is being developed and tested and they said it is not yet commercially available and it could be a year before it is.

Thanks

tomhatha profile image
tomhatha in reply to jackdup

Ok thanks for the info. I'll still look for the 2012 one for Iphone. regards Tom and thanks again

grandkidsthree profile image
grandkidsthree

Thankyou for the welcome😊

Titchy52 profile image
Titchy52

grandkidsthree  welcome to the site best wishes.

freddy2399 profile image
freddy2399 in reply to Titchy52

many thanks

freddy2399 profile image
freddy2399

been to hospital for a cardiorespiratory test, and been told i can receive treatment for IPF, starting soon as my blood results are ok , the treatment will be with Pirfenidone, so just waiting for the go ahead now

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