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COPD living in the current C-19 climate

Tanya13 profile image
15 Replies

Hello

Hope this note finds you well@ sound.

Many heart felt thanks for having accepted me in here.

Few days before Christmas I have been on helpline advisor , whereas told further information about self management in COPD- I suffer and, about 2021 year lodged 12 weeks online courses available as a replacement for COPD pulmonary audit rehabilitation programme. I followed that advice and obtained a GP referral for it. I note that as of yet none pre assessment has been done by a member of clinical team. However, an advisor said that she has put me on the waiting list for a phone call back. Could anyone kindly reassure me if somebody has already experienced rehab in the past? With my extended well wishes,

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Tanya13 profile image
Tanya13
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15 Replies
Bkin profile image
Bkin

I think many of us have attended pulmonary rehabilitation, I myself have attended a course twice, once a beginning of emphysema COPD diagnosis 16 years ago and once after a long period of illness and additional diagnosis of Bronchiectasis.

I have only ever attended the hospital for this course in person though, but I am sure the on line version will be just as good. Definitely worth doing as it will help you manage your symptoms, how to keep as well as you can, identify when you have a lung infection happening, and generally slow down the progress of COPD to maintain a reasonable quality of life.

Do let us know how you find the on-line course.

Best wishes BK

Welcome to BLF forum

👍

Tanya13 profile image
Tanya13 in reply to Bkin

Thank you for sharing this with us, because where I live(North East) pulmonary nurses used to give a spirometry test only once a year. For complex reasons I was unable to take one in 2019 and, of course my 2020 was cancelled due to current C-19 climate, also nurse in particular told me that pulmonary rehab is no longer runner because their funding is financially bled. So, here we go again. Can I ask you about duration of both courses taken by you F2F please?

Bkin profile image
Bkin in reply to Tanya13

Oh I had understood you are on the waiting list for the online course? So its irrelevant what the nurse told you previously perhaps about no funding and no longer running,.

The ones I attended in person were 12 weeks once a week the first one 2nd one 6 weeks twice a week, I suspect the on-line course programme will be different and no doubt you will be notified of the course programme once they have advised you of your dates.

The annual spirometry test thereafter (after full lung function and cardiac checks once discharged from specialist). But as you say this year no spirometry or other routine checks because of covid-19. But certainly discussion with respiratory nurse at GP surgery and if you have your own blood pressure monitor and oxipulse you can do some important checks yourself that the GP clinic would wish to record along with your current weight, height etc all these are usual annual checks done, They have been in my own experience.

Tanya13 profile image
Tanya13 in reply to Bkin

Yes, you understood me quite alright. The nurse ,which signposted by NHS medical group to do an annual spirometry test on us COPD's would not necessarily hold a firm info on the National programmes updates anyway. This is why I took a courage on my own and recently contacted BLF advisor directly though. So far so good! Feeling fairly pleased ;)

Bkin profile image
Bkin in reply to Tanya13

Well done

CDPO16 profile image
CDPO16

Hi and welcome Tanya. I don't know about on line rehab courses but when I was referred for outpatient pulmonary rehab some years ago there was a 5 month waiting list. There may be a waiting list for the course you have applied for. If you have any way of making contact with the organisers you may get to know more.In the meantime the BLF have information on exercises you can do at home. Best wishes.

corriena profile image
corriena

Iv done pulmonary rehab several times each time after serious illness copd exasperations. Each time it has picked me up and helped me recover so much better and continueing the exercises after keeps me as healthy as i can be. Good physical health will help you live a good life for as long as possible. A strong muscle uses much less oxagen to work than a week muscle so you can do more with less oxagen to do things. I have seen people bearly able to stand at the beginning of the course walking upright without aids for several minets and more by the end. You just have to put the work in and you will get good results out. Worth every minet.

HungryHufflepuff profile image
HungryHufflepuff

Hello and welcome 😊

Ergendl profile image
Ergendl

Hello, and welcome. I haven't done an online pulmonary rehab course, but I did do a face to face version and it really helped transform the way I was living. It taught me to stop being afraid of breathlessness and start working with it and being more active. Good luck for your course when you finally start it.

Tanya13 profile image
Tanya13 in reply to Ergendl

Many thanks for wishing me well. I look forward to start but it is out of my hands since I applied for it.

Dedalus profile image
Dedalus

Hello and welcome Tanya

Tanya13 profile image
Tanya13 in reply to Dedalus

Thank you😊

Izb1 profile image
Izb1

Hi Tanya13 and welcome to the site. I am sure that the course will be beneficial to you and is well worth looking at . Irene x

Alberta56 profile image
Alberta56

Welcome Tanyal. I did pulmonary rehab last year, before lockdown thank goodness. It was brilliant. The nurses worked us very hard and convinced us we could do more than we thought we could. They also gave us a lot of information about how to manage our conditions. BUT you may have to wait a bit. There seems to be a lot of demand for courses. Good luck. I'm sure the on line courses will be good once you are offered one.

sophie4 profile image
sophie4

Hi Tanya,I new to this group but want to offer my reply.

My sister has COPD and is on Oxygen at night, has a portable she takes whenever she goes out, which is rarely and on several inhalers.

She had been going regularly to a pulmonary rehab program. My sister stopped going because of fear re:covid virus.

Her condition has worsened since she stopped going. She had been doing so much better. These pulmonary rehab programs are invaluable!!! I encourage you to further explore these programs.

Keep in touch and much luck with finding a rehab where you feel comfortable!!!

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