Reading about how good "rehab" is for patients my question is how ill do you have to be when your doctor sends you for a course ?
It must be in the future as now it is only moderate nothing from my doctor about doing anything at all, thanks in advance.
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Hi Dunroamin,
It used to be that PR was recommended for patients with fev1 below 50% who also had disabling levels of dyspnea. I think the guidelines have changed since then to include patients with disabling dyspnea regardless of fev1. As a rough guide, this works out something like the following;
"If you assume a 2% prevalence of diagnosed COPD and 30% of those will benefit from PR, then in a population of 250,000, 1500 will need pulmonary rehabilitation, and a GP with 2000 patients may have 40 patients with COPD of whom 12 will need referral to PR." (as estimated by my favourite copd doc, DR. Rupert Jones).
If you feel that your life is being adversely affected on a daily basis by shortness of breath, then PR may be for you. From the praises heaped on it by various people, i believe the experience must vary hugely from one venue to another. Often it takes the form of some seated exercise and some standing exercise. There is also an educational component which, hopefully, will have improved over the years. Some places do have excellent programmes now from what I have seen on the web, but it is very much the luck of the draw.
From my own point of view I found designing my own exercise routine and getting on with it independently much more effective than anything experienced at the hospital classes. If you are fit enough to dress, bathe, walk outdoors etc. and don't have a heart condition to consider, then don't be afraid to up your activity levels independently. Funnily enough, the most active copd'ers I have ever come across all did it for themselves. P.
If one is available in theory you should be able to access one any time you have deconditioned through lack of exercise, due to lung infections, repeated or otherwise or recovering after pneumonia or a period of hospitalisation etc. If you have deconditioned just ask your GP for a referral. If you cannot access one then next best thing is get a copy of BLFs DVD Living Well with COPD or check BLF's home pages 'Living with a lung condition', also if you can't access PR ask your GP for an exercise prescription to help get you back to some level of fitness.
Hope all works out for you.
I have moderate COPD and my GP did offer PR, but said he didn't think I needed it as I do aerobic exercise, yoga for breathing and I am generally pretty active.
Lynne x
Hi .i have COPD and other health problems.i went to rehab and i really enjoyed it .but i found it tiring ..it is mainly excercise and talks .but the physio,s there was really nice made you feel special.....no pressure.......
Local health authority have set the mark at below 50% fev 1 for referral to doing a course but they will take people on the stage 2 course that has harder exercises for people that have done pulmonary rehabilitation or have higher fev 1 readings (maintenance level exercise) if this is in your area.
Hi dunroaming im going to PR and am finding it really good.
I got referred with no problem and Im only at stage 1 COPD. x
I did PR twice as I had to miss a few on the first course ,I found them good for getting going with excercise and got some really helpful ifro with regard to whats about ,As it British lung group .But having done both I honesty found that they are geared at 70ish and over which is good as it is very helpful for meeting people and doing things away from home with like mined people . And if they were geared an people who are younger I am 57 ,I am really too busy to go every time so they would not work so well as they do so I would say yes do the PR and maybe join a gym do walking and a bit of bike work I find when I go supermaket shopping walking round the whole shop helps my legs and talk to people ,I dont come out the shopping feeling old and unwell .
I have recently started a pr course.not because my doc referred me,but my nurse at the surgery.i have severe emphysema/bronchitis..and had been waiting since April to get on it.i phoned them a couple of times,and was told I am number 205 on the list!!as they can only take on 20 new patients a month,I was expecting at least another 10 month wait...
I rang them and explained my position regarding my employers,as I have been off of work sick since march,and although my employers are supporting me until dec,I simply cannot wait for a further 10+ months.they rang me the following day to offer me a place on pr,which I grabbed with both hands.im loving it.
The prob with a do it yourself excercise at home,is I don't think I would do it,but when it's a group class,it's so much more fun..
Hope you get your pr soon.
Hi fantasy - The whole idea of PR is that you continue to do the exercises daily at home in between each PR session. Then by the end of the course you should be fitter and confident enough to continue with regular exercise under your own steam - whether that be at home, walking, swimming or at a gym etc.
I walk when I can, the distance is better each time. Trying to control my breathing and not to get severely out of breath is a goal I am aiming for. Val
The hospital decided when it was time for my course and then told me I should really have started sooner which makes me think that others experiences are the same in you can not start doing something to soon when it is exercise or information gathering. Hope you find something that gets you started on the right road as soon as you can.
Hi Dunroamin,
I am a newbie to this site having found it whilst roaming from one of the sister sites on Health Unlocked, that is Thyroid UK.
I have been diagnosed with COPD now for almost two years and have moderate COPD with a 58% FEV1. I had a triple by pass 3 years ago and went on to a Cardiac Rehab program about 6 months after my op. I mention this because I have now started on a PR course starting yesterday and have found the format and content broadly similiar except its lungs and not heart.
I gained a lot from my cardiac rehab and from what I have seen so far the PR looks good too. I Still follow the exercise regime and diet.
About 5 months ago I had an episode of losing my voice and hoarseness and whilst sitting in a chemist waiting from my prescription read a Macmillan Nurses leaflet which said losing your voice without any pain could be an early sign of lung cancer! Naturally I went to my GP, got one of his locums' who referred me to a Respiratory Consultant. I was reassured and given a change of inhalers. I asked him if I could have a place on a PR course and he was delighted and arranged it straight away. BTW I had asked my GP for referral to a chest consultant and he refused outright.
I mentioned all of this because my COPD Nurse was a dragon! I asked her about a year ago if there were any course similar to the Cardiac rehab for COPD patients. She said that they were a waste of time (I think she meant money) and she suggested that I could learn to breath through my diaphragm but I was too fat (I am not thin but my B MI is just under obese). She referred me to a dietician who thought my diet was pretty good (I am also a diabetic Type 2 on insulin and follow a GI diet all the time).
This is all a long way of telling you that the criteria is not as strict as some feel and I really do feel it will benefit me even though I still follow the exercise regime I was given on my Cardiac Rehab course. I am more than interested in this course because I can find out more about this disease without a cure. A by pass is simple, new plumbing and some pain and out you go. Since I have multiple problems I am determined to find a way of living longer to see more of my potential grandchildren arrive (5 so far and counting)
Didn't mean this to be as long!
Regards
David
Don't want to sound silly but can someone please explain 58% FEV 1, I am not very good with the abbreviations
Maggie
Think it is about how much you can breathe out in a time against how much they expect should happen with normal lungs, that makes 58% of normal if understood but if wrong sure that it can be explained better by more experienced writers.
You have to ask your Doctor - we had to ask to be referred to the specialist respiratory team, no-one had told me that such a thing existed. My sister found out! Once referred they visited and referred my husband to pulmomary rehab. The first Doctor told my husband he was not ill enough to be referred (she was just a young doctor and my husband can hide it very well! especially when he is sat down in the surgery!) It has made such a difference, your local Breath Easy group might be able to help. TAD xx
Will search for what is available locally that can keep me better than waiting to get bad so they have to send me, glad I asked there is so much experience to be shared.
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