I haven't posted since my first message when I was diagnosed with severe copd after a chest infection. You were al so encouraging and I came away with a very different opinion than when I'd left the dr. Since I was diagnosed last month I've have been sent on a pul rehab assessment . I learnt a lot more about my condition and have been accepted on the course to start in a couple of weeks. They told me my Fev1 is 43% but they would class me as moderate/severe. My Sats at rest were 95 and were 92 avg while doing the walking test. Evidently I managed 450 metres on the 6 min walk. Which they seemed pleased with. I am on Anoro Ellipta bronchial dilator once a day and have been given an emergency pack. They all seemed very up beat nurses and physios that I came away with the knowledge that there is a lot I can do to help myself. They have also told me that after the 6 weeks course I can continue going every week if I want to for top up.
After reading some other people's posts I'm assuming I'm lucky to be in an area where this facility is available. I'm am grateful for this site though because you answer all the questions and are so encouraging to us newbies . So looking forward to the Rehab would be stretching it but onwards and upwards shall we say. hope everyone is now beginning to enjoy the warmer weather and we can all get a bit more fresh air.
Hidden your very lucky to be able to go to p/rehab I'm on a waiting list and to able to go every week to top up that's amazing it's the information I need to know how I'm progressing I've only had 2spiro test in 4years so don't feel as if they care to much .Glad you've had better care best wishes Kathy x
Thanks for your reply. I really hope you get referred soon. Perhaps remind your dr that your very keen . When I went to the assessment the rehab class was just finishing and only 3. Out of the 10 booked in had turned up and none of them had rung to say they couldn't go. Nurses weren't happ.
Hi titchy not sure what area you are in but I was on waiting list since November which I guess isn't too bad I'm in Essex. Hope you get a place soon xx
Hi Im in south Wales DP would go to Ystrad mynach hospt I'm sure it's worth the wait x
So pleased to hear about the pulmonary rehab course - it literally saved my husbands life. I know that sounds dramatic but it put him back in control. Enjoy every minute I am sure you will find it very beneficial. Good luck xxx
• in reply to
Hi Tadaw
I had read your previous posts recently and I feel were similar and your posts had given me the confidence that PR is going to be good.
Hi Oysterbay, Sounds like you had a positive experience with the pulmonary assessment. You only got one inhaler? Glad things went well for you.😊 Please let us know how your rehab goes. How are you feeling? Doesn't seem like your breathing is to bad, going by your numbers. I'm in the usa, and we've got winter going on here! Have a great day! Rubyxx 😊
Yes at the moment I've the one inhaler but the rehab people thought I should have had ventolin as well , and is going to ring my dr about it. My breathing believe it or not is fine. I'm only out of breath when walking up hills and very aerobic exercise. I feel fine and continue to do everything I've always done which I know well enough is not what everyone's experience is.
It's a very sunny cold spring day here so I'm sorry your at the winter stage.
You are about the same as me. I am still cleaning a drs. office. Doing trash, vacuuming and mopping doesn't bother me. When I go up the stairs, I feel it. Hope you like the site.😊 You will learn so much. Plus we have fun posts also. Members put photos of their pets. Also we have Tam, he puts some really great jokes! Hope you'll stick with us.😆 😊.xx
All sounds very encouraging. So many people here have found PR brilliant. It seems excellent for COPD patients. Just don't read my posting about it!
Well, if you do, then you must bear in mind that I don't have COPD. And the other condition I have, chronic thromboembolic disease, may well have contributed to my problems.
Sorry katinka that PR wasn't able to help you. I don't start for another 2 weeks but I'm encouraged by other copd people how beneficial it will be.
Keep well x
How very lucky you are to live where you do - such support is how it should be for all of us. I have to request another PR but don't hold out much hopes of getting on a course, and I found it very enjoyable. We had a laugh every time, and that keeps the pipes open. I'm surprised you only have one inhaler but if it is doing the job, well good...aha...I just read up on Anoro Ellipta, and it is to be used once per day, so that is the reason. Is it a new medication?
Well, you have a fine day, and I am glad you are being looked after so well
Jennifer
xx
• in reply to
Hi Jennifer
As far as I'm aware my dr seemed to suggest Anoro is quite new as in 2 years perhaps. I do feel like I'm lucky that I appear to have very good treatment and care from my doctors when you hear so many horror stories Keep fit and well x
• in reply to
Hello OysterBay,
Thankyou for your response.
heh heh...if probably hasn't filtered through to my area...probably due to cost if nothing else!
More than likely others on here will have know all about it, and are probably using it.
The up beat bit is more trepidation really but the posts on here are so positive. Just hope it works for me . Im not the type that likes exercise would rather work but needs must as they say. So just waiting for my start date.
Hi. Know how you feel. I've had COPD for over 20 years when I was first diagnosed I was a single parent and still had my four children at home and worked full time. I think the things you will learn about this disease at PR will be so enlightening for you that the exercise will almost be incidental. Perhaps you will start to look on exercise the same way you do your medication. Take care x
What a great post. Anybody reading your last post and worried about PR would positively now be looking forward to it. Thanks for that. I'll let you know how I get on. Keep well x
You are lucky to be so fit! I realised after PR that while there's no cure for COPD there's a lot that I can do to manage my condition, like keeping busy, active and doing regular exercise (I hate the gym so foresaw this as a problem!)
Some of the PR group members started up an independent exercise group to follow on from PR and we now have approx 20 people attending every week. We had help from the local Breathe Easy group and support from the PR physios. We hire the same hall that the Breathe Easy group uses, which is central, has lots of parking space and only costs each of us £2 a session.
What a fantastic group you must be in. Just shows where there is a will there's a way. I strongly believe although we can't be cured your right in that we have the power to help ourselves live the best way possible. It also must make new friends who understand better your lifestyle. I agree to gyms are soul destroying places. Watching other people's muscles ripple and mine sag dosent nothing for my self esteem. Ha! Ha!
As well as that, I just get bored, whereas with our "Heavy Breathing" group (terrible name, but suitable) we natter, sing sometimes, joke among ourselves and keep an eye out for each other. If someone misses a week or two and we haven't heard why, another member will phone to find out what's wrong. Many of us also attend the Breathe Easy meetings, and we've forged very strong friendships. We've also recently formed a "singing for lung health" group
It takes one or two people with the will and vision to push things through and we share the chores according to people's ability
It's good fun and gets me out of the house
Hello Oysterbay, and everyone . Today, through reading posts on this excellent site, I came across Pulmonary Rehabilitation which in all honesty I didn't know such a vital programme existed. I too have learned so many facts from you all which I feel someone in the medical profession should have told me about at first hand. I have an appointment with my GP this coming week and I have a very long list of facts I knew nothing about and will ask the relevant questions. So...., thank you everyone for taking the time to tell of your experiences whilst coping with COPD so that people like me who apparently are kept in the dark; ('mushroomitis' I think it's called) benefit.
Good luck Oysterbay; but I don't think you'll need it with the team you seem to have looking after your wellbeing.
The sun is shining in my area which makes for a pleasant day; therefore I sincerely hope the sun is shining down on all of you too.
I have the same stats as you 48% For some reason it has worsened in the last year. Was 56% when diagnosed 2 years ago. 69%! last year (after stopping smoking) but down to 48% this year. I have felt my lungs have been struggling more the past 5 months. I did not believe I had / have COPD until the past few months. I have a blue inhaler only which I have not had to use. Have used it 3 times in the past 3 weeks. Will certainly ask now if I can go on a PR course because I am worried re the deterioration ( from mild to severe in one year) I am 59, slim usually quite fit (apart from a minor MI 18 months ago, out of the blue). Please let me know how you get on. Take care , enjoy the exercise. CC
I have just returned from my PR session. And I would certainly ask your respiratory nurse or Dr to refer you. It has already been beneficial to me. You learn a great deal from them about your condition and how to handle it.
Keeping fit and healthy is the way forward.
They teach you about how anxiety and stress make the condition worse and how to handle those situations.
I get the impression from my Drs they want everyone as much as possible to go on these courses because it is so beneficial. For them it cuts down the amount of times we need to see the Drs and hospital appts.
I like you have been given a blue inhaler but have only used it a couple of times. So I hope you can get the help, I've realised from reading other people's posts that the PR course is harder to get onto in some areas than others and there is a waiting list. I've been very lucky as where I live they are on top of the lists. Ask any questions and I hope you get sorted but definately go back to your dr and if nothing else get some answers to why you have a deteriation at the moment.
Sorry I forgot one thing . I read on another post when I was first diagnosed to get a instrument called a power breathe by medic.
It a contraption that cost about £25. It is a exercise for your lungs, a bit like dumb bells for the lungs. I use twice a day for 25 breaths and I believe that has helped me a great deal. If you google power breathe you'll find it easliy and I believe lots of others have it so ask them also. It's also on you tube.
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