Well I went to Pulmonary Rehab yesterday, filled out a questionnaire, 6 minute walk test and met the lovely physio.
It seems I am doing all the exercises anyway, and she said I would probably not enjoy it as all her patients were very progressed and a lot older than me...... but I have been referred to see the Pulmonary Nurse and Womens health professional so something good came out of it I suppose
PR in UK is not just about exercise, its about learning how to manage symptoms, how to avoid disease progressing, how to help preserve lung health. Its a pity the physio hadn't thought about the patient education side for you.
pulmonaryrehab.com.au/index...
Maybe you can check back about the educational side of the course.
Glad you got a couple of good referrals though.
Best wishes BC
Thanks BlakeyC, I am hoping this will be addressed with the Nurse?
Well I would disagree with her!! My husband has just finished his second course and I think the first course completely changed his life - not just the ways of keeping fit for a person with COPD (which is of course vital) but the knowledge that you are given. It changed my husbands mind set and he started to take control of COPD rather than the other way round. I hope it is as positive for you. We were referred to the pulmonary respiratory team and found them very helpful - very useful contact. TAD xxx
Hi Kad,I was a bit surprised at the physios response,I must admit.There is an educational session,usually 6,if I remember rightly,that is done before the exercise class so can't fathom,why she wouldent want you to do that.Anyway,have a good chat to the pulmonary nurse about that.Maybe they do things differently in W.A!!
Can I ask,how the ceasing smoking is going?? Do hope it hasent been to difficult.
Cheers Wendells xxx
I have just finished a PR course. I have mild/moderate Bronchiectasis and still work and I would class myself as active although never been to a gym before.
The course was brilliant and even though I was by far the most active of the group(starting on level 6) I feel soo,. much better and more motivated to do more exercise. It is worth going for the feel good factor alone.I have also learned so much about mine and other peoples conditions and how to cope with them.They also referred me to a respiratory nurse who taught me how to bring up the gunk and provided me with a device to help with this.l
would highly reccomend anyone to go on this course.
When I attended my first PR course, the group were a good mixture of abilities. I was still working and very active, some were considerably older than me and 2 were using oxygen whilst exercising. Each of us was shown how to do each exercise and then we did them to the limit of our individual ability, so each gaining a lot. This was in addition to the information sessions, which were brilliant. Whoever is advising you is badly mistaken.
Hi Kad21
I've been on the rehab course twice before and as Blakey said it's not just about exercise. Lots of education and just as important you are with a lot of people who are in a similar situation as yourself. It was actually fun to do. I would be attending permanantly if I could but unfortunately I believe you are only supposed to go for one period (money rears it's ugly head). I think it was 8 sessions. The physios were really great and even arranged discount rates at the next door sports centre for supervised exercise sessions. I even bought myself an exercise bike so I could carry on at home.
Keep at it.
Well I was one of the fittest at my class, but you just have to push harder, use heavier weights and do longer distances and a hard level on the bikes or crosstrainer. Also did you try stepping with weights for an hour ?? Seems the physio could not be bothered. Some are real lazy and I bet cant even do the exercises either. PR is also about getting out and meeting people, I have no friends or family to help or talk to, so that was really nice. The education is common sense really. Now have gone from severe to normal (mild) copd, so get back to PR!! Cycle there if you are fit!
wow lorraine well done on going from severe to normal copd i didnt know that could happen i thought you just gradually got worst,,
Thanks Lorrraine, I am interested in your comment that you have gone from severe to mild, how has this been measured/proven?
Hi Lorraine,I was interested in your reply to kad 21 and how seem to reversed your condition from severe back to mild,I have gone the other way through being stupid .I was diagnosed 7 years ago with mild emphysema and was put on a PR course which was very educational and I found the exercise regime ok and not too difficult and finished the course ok.But being to clever for my own good I eased off on the exercise and had some setbacks like a punctured lung and pneumo thorax and ended up on the dreaded downward spiral which I am having great difficulty getting off ending up now with a severe condition. The lesson learned is do not ease off push on.The big question now Lorraine is how did you do it,Love Bengunn.xxx.
If you don't mind my asking, how old are you? I joined a Pulmonary rehab group for COPD today and most people looked to be over 60 (I am 63) and we were told that this condition didn't usually show up before the age of 45. The first educational talk was very helpful. I think you should consider this aspect of it whatever age you are. It is important to be well informed as well as to exercise.
Thanks for your reply Bonniedoubleu, I am 53 and been diagnosed for almost a year
Cloud with a silver lining hope you realize your full potential.
Ali
Hi Kad21, a bit of a disappointing PR result but consolation is you were referred to another department so all is not lost. My opinion is age or severity of symptoms is not supposed to be a consideration in respect of PR. I have just been referred in December and we are waiting for a reply, believe its quite a wait it was recommended fourteen months ago but no one actually referred me at the time to spite saying they had. I have been advised because of my arthritis they may say I am unsuitable, seems the criteria is very variable in this country, but good luck with the pulmonary nurse and women's health professional
Hi Kad21 just a question: how long did you have to wait after your GP referred you for Pulmonary Rehab? (Or perhaps you didn't take that route?) I was referred by my GP surgery in October to attend PR and still haven't heard a peep, is that normal? I live in SE.
Hi Stillmovin1, I was referred by my GP to a specialist and by him to the PR, it was very quick within days.
Thanks Kad. Looks like something is amiss with my GP surgery!!! I will make another appt with GP to see why I am waiting so long for PR. I can see from this post that some people have waited a long time & my GP did mention that there is a very long waiting list for PR, so perhaps you were very fortunate to get your appointment so quickly. Anyway after your experience I will be interested to see how they manage my treatment when I do eventually get to see the PR physio as I am the same age as you. I will share whatever I find out on this forum whenever it does happen. All the very best to you.
Hi Stillmovin1. was referred by our new lady doctor, ( new brush sweeps clean type of thing) took three weeks from her requesting to my first visit, may be the area you are in ? Im in the BEDFORD area. Take care. Malk.
i have been on the list for this for two years so hard to get on it but feeling hopeful
Hi there! I am waiting a while too for PR, although not as long as 2 years. I haven't even been told I am on the waiting list, so there could be a blunder at the GP surgery about my referral. Anyway, hope you hear soon. Keep in touch with news. Take care.
Hi kad21. had my first day at the Pulmonary Rehab also to day, I am not too bad with my breathing, but thought there may be some things I could pick up on, and brain store them if the need ever comes up. Went and did he questionaire and the 6 minute walk like yourself. The problem is the distance the centre is away, its a fair walking distance from my home and cost £10 for taxi fares, the number of time over the 7 week period tends to run a little expensive. and as I had a little high blood pressure readings, they advised me to see my GP before going again, althought I feel fine in myself. I did have a mini stroke Five years ago, may be a god send in one way as it made me go cold turkey and stop smoking. was a Sixty a day man for Fifty years. Malk.
Yes it can be expensive getting to PR and I had to take 2 buses, but found out the nhs run free buses between nhs hospitals. You should also get DLA is you have copd plus arthritis or other problems. I had to stop as not keen going out in frost, wind etc.. with arthritis and panic attacks, but it can be resumed when weather better. Taking symbicort changed my health for the better, and yes it is true you have to keep up exercise even at home. I use ankle weights, do a lot of stepping, etc, just push on when you feel out of breath and it will pass, hopefully. Fresh air essential too! I an Alpha one, so perhaps it is easier controlled, but no guess not cured, just helped by medicine. My severity proved by the lung function tests went from 40% (severe) to 80% mild. But only 49 and always been fit, worse thing for me was living with smokers. told to keep away from anyone who smokes. Keep away from car/bus fumes too. Just breath easy!! Swimming is great too. Don't give up!!
hI Lorraine, thanks for your come back; take care and look after yourself; Malk.
Things are looking up…pulmonary rehabilitation course
double lungs transplant 
The LVR Journey Continues 
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I have been diagnosed with SSc-PAH 
