I'm new to all this as I was only diagnosed in March 2013 with Pulmonary Fibrosis.
My first consultant was very vague about the disease,treatment,and generally day to day living.
I asked to be referred to another consultant who had an entirely different approach by explaining about the disease, treatment of the symptoms etc:. Subsequently I have just been accepted on a Pulmonary Rehabilitation Programme. I attended my first class last Wednesday which is 1hr of education and 1hr of exercise. Enjoyed the education but boy oh boy am I aching after an hour of gentle exercise. Still I will persevere as I am told that building up muscle strength around the lungs is an important part of breathing easier!
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wintonian
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Hi there wintonian and welcome to the forum. So glad to hear you've found a consultant who took the time to explain your condition. Good luck in your PR. So many members have recommended this as being a positive step in helping their conditions.
Hi all. PR, in my opinion, is the most beneficial thing you can do when you have COPD. I learned lots of things about coping. Meeting people in the same position shows you that you are not alone, and of course you learn how to exercise properly. Sure you will be stiff for a few weeks but you soon build up a level of fitness that suits you......
Hello Wintonian, I was diagnoses with Pulmonary Fibrosis in February this year. It is all very new to me and my doctor never explained anything about the desease, treatment, live perspective etc but just put me on prednisolon. I hope you are doing well? Do you have any good advise for me? Best wishes
Hello & welcome, glad you enjoyed your first PR class. I found PR very beneficial & would recommend it as a valuable tool in living with a lung condition.
Wish i could find a decent consultant ..i have COPD but also hiates and bowel hernia
which due to the fact already had 2 ops on bowel i resulting in a months stay in hospital with a infection the one consultant will not operate due to COPD . the problem is that the Pulmonary Rehabilitation dept at local hospital will not give me exercises to do till hernias repaired just said walk to front gate and back
contact the British Lung Foundation and ask to speak to a specialist nurse who will be able to point you in the direction of a training hospital which is conducting clinical trials you will definatly be in the right hands then
Welcome Wintonian
Sounds to me like you're going in the right direction, the PR is invaluable to helping lung patients manage symptoms, keep the condition stable and in turn helping to slow the progress of the disease.
Keep up the exercise even after PR it really is so important.
So glad to hear you are well enough to exercise; my husband's diagnosis came so late, and follow up so dire, that by the time he got to PR he couldn't do any of the exercises. One of the problems was that the staff were only used to dealing with COPD, which is a very different kettle of fish; new guidlelines for IPF issued by NICE last month state that there should be specific PR classes for IPF patients - but don't hold your breath !
there is aways a bit he can do i got took there by transport in my wheelchairs then started with 30 seconds of some of the exercise i started my salf at home about 4 weeks ago doing it 5 times a week while im waiting to hear from them again all the best to him tho on thing you could get him to keep his legs going is a mini exersice dike
I start my course on 11th August and I`m looking forward to it. Sounds like I need to stock up on the Radox in readiness to ease my aching muscles! Keep us informed how you get on.
Very welcome wintonian xx Trust that as you sit on the computer you are doing your warm-up leg exercises? No? Nope, me neither! By the end of the course hopefully you will have loads more information to help you and the exercise will have re-awoken the body a bit.
Hi I'm starting my week 5 on Monday and I have really improved I started at 3 mins on treadmill at 1.2 mph I'm now at 10 mins at 2mph and the information is really good too I'm severe emphysema and reflux x
I started my first one on Monday with another on Friday. I think it is a ploy to kill us all off and save the NHS money. Like you I was as stiff as a board. But I am naive and believe them when they say it will do us good. Yeh, right!
Regards from Bobby
Hello and welcome, enjoy your PR but do not overdo it next time. I have bronciectasis and find there is little info out there on that too, enjoyed my time at PR and learnt loads there
love julie
• in reply to
Don't think there's much info on lungs out there full stop................
But I suppose everyone thinks their illness should be top of the list.
Yes - I would have loved those guidelines to have been around 2 years ago when I was trying to get a proper diagnosis for my husband - I kep telling them his Dad had had P. fibrosis, , and he didn't have COPD symptoms or respond to inhalers......but apparently guidelines are merely advisory, so I expect funding to be an obstacle to implementing them. Can't understand why it took them 3 years to come up with them, either !
And Tony - we did try doing the exercises for just 30secs., but his sats dropped so alarmingly, and the staff didn't seem to know how to deal/counteract that, they agreed best not to continue. A bit late, I think.
Hi. I feel for you. I had my first appointment 10 days ago and I am more confused than ever. I have had blood tests, a CT scan coming up but nothing more. When I expressed frustration at having to wait until September for results I got the reply that if anything serious turns up.
After a cardiac incident in February I am very breathless. It has been getting a little better but still I find it hard to speak in public, or walk any distance, or go up stairs.
Is this permanent? Is it progressive?
Yes, It is very frustrating.
Love to hear about the exercises, any breathing exercises?
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