Hello all you lovely people…I know there have been some other posts about pulmonary rehabilitation courses but I want to shout it from the rooftops how much it has benefitted me and hopefully incentivise others.
The last time I posted on this forum several months ago I was so depressed about living with this condition, spending a large part of every day gasping for breath and wishing it would all end. I had to really push my GP to refer me for pulmonary rehabilitation and I even ended up calling the team myself to hurry things along. I have been attending the sessions for five weeks now and the difference is amazing. My breathing has improved so much, I am no longer scared to leave my home, I can dress without getting breathless and I can carry one bag of shopping from the supermarket to my car without gasping and panicking. My husband can’t believe it and is so happy about it. Today I walked 2.5 km (which is about 1.5 miles) at a speed of 3.4 km per hour on my treadmill and was barely out of breath. I’ve also bought a set of weights similar to the ones they have at the sessions and I do a routine with these three times a week. I intend to continue when the course has finished as my life has been so vastly improved. I’ve always done ten minutes of stretching exercises in the morning but these are not enough…you have to push yourself to do more in order to improve breathing. Another great thing is I’ve also lost some weight from being more active.
Take care everyone
Jan xx
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JulyAugust
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This is fantastic news Jan. Very happy you are benefitting so much. I was afraid to leave my house too. It is easy to become reclusive when so very unwell. Your post will encourage others to try pulmonary rehab. xx 🙋♀️🐕
Hello Caspiana, it’s lovely to hear from you. Yes, I WAS a recluse but no longer thankfully.
I hope you are doing ok with your one lung. I took a peek at your holiday diary posts and enjoyed reading about your trip…it sounded wonderful. The bit about Kushi being at a Nessie convention made me laugh. 😃
Fantastic news it is a very good thing to do the course it has been a revelation for me and I have continued with blf gym ever since 2015 so it keeps you fitter to fight for your health
Thanks…yes we do have to fight for our health. I’m glad you’ve kept up with gym activities…I was surprised that at my sessions there were people who had been re-referred not having kept up with any real exercise at all. One of the physios told us it will only take two weeks of inactivity for breathing to go back to what it was.
I can identify with everything you've said (except for the walking on the treadmill) and totally agree that PR pulled me out of a very dark place the first time I did it in 2016.
I think we shouldn't undersestimate the effect of depression on our physical wellbeing but equally, we shouldn't underestimate the affect of our physical condition on our mental health.
I love your post and think it will inspire others to seek out the PR in their area. My GP told me there wasn't any but we had a talk from a RESP physio at the BreatheEasy group and she wrote down the information and told me to give it to him as PR was very much up and running.
GPs can only know so much - they are human beings, not computers - but sometimes their knowledge of RESP conditions and what's available for us can be severely lacking.
I'd also like to encourage people to join a BreatheEasy group if there is one as I have learned so much about what is available in our area since joining one.
Hi Moy, thanks for the reply…yes my experience with my GP is out of sight out of mind although I appreciate he is probably busy. I’ve had to push for everything myself as regards my COPD. When I first asked for PR he just said “there’s a long waiting list” so I said “well at least refer me so I can get on the waiting list”. When I called up the team a few weeks later he hadn’t referred me so I had to ask again and five weeks later I started the course!
I’ve never heard of a BreatheEasy Group but I’m going to find out if there is one near me. I want to try everything.
One of the things I like about the PR session is mixing with others with the same condition…no one really understands what it’s like to have breathing difficulties unless they are in the same position.
Lovely post, JulyAugust. I too benefited so much from doing the PR course, and like you had to prompt my GP to send a referral to the local team - he didn't even know how to do it. It was only thanks to this site and great posts like yours that I knew anything about the PR course.
hi,pleased to read your comments about pulmonary rehab,i completed course in the summer,the lectures were very interesting and the exercises really helped( wasnt to keen on the cardio- vascular ones ),like yourself have seen an improvement and now do the stairs instead of the lift.If anyone gets the chance to do this course please do,there may be a waiting list ,and where i am they do a maintenance course ,as it can be hard to stay motivated when home .Well done x
morning,not sure if this helps,but after course i was referred to action heart,who contacted me to refer me to a local leisure centre,they have been in touch and i am awaiting assessment,if you go through action heart you can get a reduction on your gym membership
Thanks, I’ve set up my own mini-gym which is perfect for me. Unfortunately my local gym is usually jam packed with sweaty people so it’s much nicer to do it at home.
Hi Jan. Fantastic to hear about your experience with pulmary rehab. I was told I was I was on the waiting list in April/May LAST YEAR. Still didn't get it. In July this year I had an appointment in Forth Valley Royal Hospital with the most arrogant consultant I have ever had the displeasure to encounter whom I think even the devil himself would struggle to beat. Long story short discharged me from his care, wrote to my doctor contradicting himself (now got copies of my medical notes stretching back a few years) and said my asthma was well contolled. I don't think I could repeat my GP's reactions... But only to say he has asked for a referral to another health board. In contrast I had an appointment with other consultant the the week for another health issue and before he started he just stared at me and asked if I was usually like this.... I had just walked from the waiting room to the consulting room and was struggling for breath.... His manner and care was such a lovely contrast to the respiratory 'consultant' I saw earlier in the year.
Glad you found the rehab has been of great help. Its just a pity not everyone can experience the benefit.
It makes my blood boil when I read things like this Turfcare, some doctors really shouldnt be in this profession , thankfully you have a sensible gp and i hope that you now get the proper care you deserve x
That reminds me completely of a very similar con at St George's University hospital, similar story Turfcare. Horrible man, my GPs wanted me to put in official complaint about him but I was too ill & feeble at the time.
Peege, I remember you telling me about that horrible consultant before. I must say I’m glad he’s left as I’ve just had a referral to a respiratory consultant at St George’s Hospital.
Totally agree about the rehab. Also in the future there may be a small option for valve surgery to help breathing- one of the criteria is to have been on pul rehab course. Very few cases suitable but I've has a CT scan and spirometry and got appt with hosp cons soon - fingers crossed but less than 1% (I think) with COPD suitable- worth a try though
This is great news. So pleased it helped you so much and its also improved your mental health being able to get out and about. So pleased for you. Keep pushing against this terrible disease and enjoy your day. Brian
Wow, that's good. Our Pulmonary Rehab group recommended going to specially tailored classes at the local leisure centre when the course finished which about three of us did but it all closed down during lockdown. Somehow doing it at home doesn't inspire the same effort. x
Yes, I would love to continue a session a week…mixing with others with similar conditions has a positive effect on our well being imo. Some days I have to force myself to do the exercises at home…somehow exercising alone is just no fun really. Janx
That's really great JulyAugust, im very pleased for you. You've encouraged me to get moving so thank you. I've been remiss recently so consequently unfit and a stone overweight 😭
Hi Peege, yes I was over a stone overweight and couldn’t get into any of my clothes! Could still do with losing a bit more but feeling a lot happier now that I’ve lost the large stomach. Yes get moving pronto Peege and let me know how you get on xx
Thank you its good to hear some good news for a change ,especially for those who have chronic health conditions. I had pulmonary rehab when first diagnosed now I have been recently to a course at our local hospice on how to cope with living with breathing restrictions. Times are changing and they are realising our anxiety about our condition makes breathing worse on occassions. Up until the Pandemic I could still do my own shopping , hope that gives you an out look for the future its 12 years since I was Diagnosed. Keep up the activity you are able to do is my motto. Best Wishes
couldn’t agree more! My husband’s just done Pulmonary Rehab course where NHS take over part of a local gym. The difference in him is astonishing! I pushed him to doing it as someone else on here who’d sadly lost her husband urged everyone to do it. He was so depressed, breathless, barely could move. Now his whole body is stronger. He’s carrying on with aftercare course. Well done you! It takes some grit but wow it so works!!
How lovely to hear the benefit and improvement to your husband. Yes it does take some grit to really make that effort. There are a couple of people on my course who are a bit half-hearted about it…I think for it to make a real difference you have to make a HUGE effort and continue to do so after the course has finished.
I'm so glad pr has made such a difference. I had to be dragged kicking and screaming to my course, the gym after life support, what were they thinking!!! But now . . . I'm so well, the lung tx is on hold. I also do yoga, pilates and seated zumba and recommend classes to everyone. When I did pr you could get a further 12 weeks free in your local gym/leisure centre, the pr physios arranged it.
Congratulations on your PR course and the improvement in your condition. I believe some PR courses have you do a six minute walk test before and after your PR course to see what improvements there may be and wondered if you did them at the start and end and if so how much change there was?
Either way I am glad you saw improvements physically and in your mood.
Hi Jack, yes they did do the six minute walk test. I’m only half way through the course and I’ll let you know what the result is when I do the test at the end of the course. I started the walking on level 6 and this week I will be on level 10. Apparently the levels go up to 16 and it’s hard to believe I will get there as I understand that is super fast walking.
that is really good to hear and I hope your progress continues as that is great and really encouraging for others. Do you mind if I ask what stage of COPD you have?
I’ve never been told but I thought I was nearing end stage (which I think is 4) as I could not dress without extreme breathlessness and I even stopped washing my hair (to only once every eight days which is pretty awful for a vain woman like me) and I didn’t go out of my house for six months as I was too breathless and fearful (I work from home so still able to work), to go upstairs in my house I would walk up three steps, stop and get my breath before proceeding to next three steps and stopping again and so forth. Does that sound like end stage? Now I’m definitely not more than 3. I’m finally going to see a respiratory consultant shortly so hopefully he can answer such questions.
thankfully I am not in end stage so am not sure if what you describe would or could be end stage. I’m not sure how many people here now are end stage and could provide information such as that. We did have a well known long time member who I believe was stage 3 or 4 and I think he lived on the second or third floor of his building and carried his groceries up the stairs but I suspect he was much more physically fit than many of us here including me. It seems to affect everyone so differently. There have been people here who are moderate and can’t do as much as someone that is severe as there are so many factors.
Im glad you are making significant improvements through your PR course and hopefully it will make a significant difference in the amount of physical things you can do.
Good luck with your appointment with the respiratory consultant and let us know how you make out.
Thanks Jack, just to clarify I paid to see a consultant privately so he could refer me to NHS consultant (as my GP seemed reluctant to do so) and that is the consultant I will be seeing in a couple of weeks. I will let you know the outcome.
I find it frustrating when doctors are reluctant to refer you to a specialist when it is clear you have lung issues. It should be the first thing they do and you shouldn’t have to go privately. Anyway good luck.
Hi July/August, what an uplifing post! Its great you posted about this as it will encourage others to pursue this. I had been diagnosed for around 3 years when i felt my life was going down the tubes because of my inability to do everyday things. Although I had been going to see the doctor and my respiratory nurse about my breathlessness PR had never been suggested. It was only from reading about it on this site that I found out about it and I also really had to push for the referral. I was initially told it was for people much worse than me!! I could barely walk 10 yards at this stage. Its the best thing i have done and i feel its as beneficial as the medication I take. The effects are as much psychological as physical. I feel if i exercise daily at least I'm doing something positive to help myself. My very best wishes to you.😊
same here. We only found out about PR on this site! Now I’m singing it’s praises from the rooftops! When you’re so bad, so breathless, can’t move, depressed anxious…brilliant to be gently worked back to strength by NHS experts - makes you feel in safe hands, we didn’t know either about GP Exercise by Referral Scheme. Look it up on your local council website. Free or concessionary membership to gyms etc for people with medical conditions. Just send e mail to GP who should refer you. And the scheme wil tell you what’s available. My husband’s referred after PR course. I sent e mail to GP asking to be referred too for diabetes. so I’m in too. Not scary being in gyms when others in same boat even when luscious fit young youngsters walk by! This is giving us a new hope at 68, bit like from that scene in the film Cacoon when the oldies come back to life 🙂
Hi Battison and ABBA - Yes ditto! My doctor somehow thinks I was not ill enough as those were his words when I asked him why I had never been referred to a respiratory consultant. I had to request twice to be referred to PR. Fortunately I’ve got the space and funds to have set up my own mini-gym and I already do a session similar to the PR session I attend three times per week at home. It’s sheer bliss to go out shopping or to a restaurant without the fear I had when I was so breathless I couldn’t even get dressed without gasping for air. PS. When I was on a two week holiday recently I used the hotel gym three times a week and of course there were the younger people but there were just as many 50 and 60 somethings, so definitely felt at home doing my regime. 😉
I would love to go to PR but I work 3 days a week and the GP surgery says it's not possible. Anyway I'm currently looking for a good online group. I will buy some hand weights, I'm so glad you have really benefitted from this, I want to feel like you do, I know I would benefit from this. Keep it up all the best 😊
hi Jake. Don’t see why you couldn’t join PR course. It’s usually 2 hours 2 days a week? Long term health conditions usually fall under the Equalities Act so your employer should give you time off or rearrange yours hours?
ps there’s also the GP Exercise By Referral schemes - see my post above. I’m not sure how to do attachments or I’d post the leaflet the PR Team gave us. It’s weird how no one everntells us about these things? I
Hi Battison thank you for your reply. I will definitely go back and ask the GP again about PR. I did refer myself to our local authority leisure centre regarding exercise, thought it would be quicker than GP doing it. But then they told me it would cost £20 a month, but there's no way I can afford it at this time.
Hi Jake, my course is 1.5 hours one day per week (I see Battison’s is twice that - I guess it depends on which NHS area you are in). Maybe if you have problems getting time off due to your job you could invest in your own gym equipment…I spent about £370 on gym equipment which consists of a treadmill, dumbbells and weights with Velcro straps which you wrap round your ankles for leg lifts. I also do about 15 mins of stretching exercises every morning. If you can’t afford that sum maybe you can ask for contributions towards the items for birthdays/Christmas. However the lead physio on our course said you can put items (such as tins of baked beans etc) into shopping bags to have the same effect as weights. I do weights and walking three or four times a week. (I do between 20 and 35 mins on my treadmill each session - 35 minutes at 3.4 km per hour = 2.5 km which is 1.5 miles). You have to force yourself sometimes but since this has transformed my life it is SO worth it and I encourage you to do something similar. My course will finish in six weeks but I have the incentive to continue with the exercise myself. I was scared to leave my home before but now I can’t wait to go out. If you want me to let you have the regime that we do at the course and the exact items I bought please private message me. I wish all us lung buddies could exercise together as that is the best and most fun way of fighting this condition. Very best wishes, Jan x
Aww Jan... Thank you so much for your reply. I will go back to my GP and ask again about the PR... I can sense how happy you are, and you are inspiring me to achieve the same. Thank you so much... Jane 😊
yes whilst on PR course my hubby used 2 litre empty milk bottles filled with water as weights. After being unable to do much for years as everything made him so breathless he now can’t get enough of training 🙂
I think I’ve worked out how to do attachment about nationwide Exercise by Referral Scheme which my hubby has now joined after completing Pulmonary Rehab Course which has helped to much. I asked GP for referral too as I have diabetes. (No one had ever told us about this until Will got to pulmonary rehab course)
oh I just want to add.. after pulmonary rehab course my h had assessment today and recovery after walking is HALVED! Could not believe he easily got the shopping in today!
Hi Battison, thank you for uploading the exercise referral scheme…I’ll certainly see if it’s available in my area.
I am truly ecstatically happy for your husband’s improvement and I can tell it’s also made you a very happy bunny! I’m sure he will keep up the excellent work now. Sending you both some virtual hugs x
thank you! Oh yes I’ve been total carer for two years! He could not even go up and down stairs. Just astounded by the difference in him. And inspired to do Referral Scheme gym myself.
ps I did not realise by strengthening limbs it would help him to walk with less breathlessness. The course gives good educational info on things like breathing techniques, even do meditation to alleviate anxiety. Some of his group were in 70’s and 80’s, some even hauling oxygen tanks!
Hi Battson, At my PR course I met a lovely friendly man called John and he was pulling an oxygen tank. He was gasping for air even with the oxygen tank when entering the venue. Once he regained his breath, we had a long chat and he told me he was at end stage and going into hospice care in two weeks. That dear man had a real effect on me…he looked only mid sixties. It really made me think the NHS is amazing to refer that lovely man (who is nearing the end) to a PR course…they never gave up on him. Brings a tear to my eye thinking about him.
aw poor guy…if only they made these courses available to us at an earlier stage? We seem to have to fight for help every step of the way. My hubby waited 2.5 years to get on PR course - Covid delayed things I guess. It’s never too late for anyone tho. The mental benefits are just as good as the physical benefits and they are so good at assessing everyone’ s individual capability, no pressure just encouragement.
it’s insane our GP’s often seem so not clued up! I had to send the leaflet about Exercise By Referral Scheme to our surgery. I believe it’s a nationwide scheme. The amount of NHS costs saved on hospital admission/illness by such courses! My diabetes has spiralled out of control under the strain of caring for my husband. So I’m now on course for the gym too. Our surgery quickly referred me and the Scheme administrators have already contacted me, here’s the 2nd part of the Exercise By Referral form. After 12 weeks we get 6 month free gym membership (and we can even take a friend, as pensioners on a low income it’s such a boon to us. And it’s not like normal gym as the instructors actually have knowledge of your health condition. When it’s so heard you see doctors in person at least someone is assessing us!
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