I have now been waiting 3+months for ... - Lung Conditions C...

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I have now been waiting 3+months for pr....

12 years ago•12 Replies

Not bad I suppose,considering I have severe emphysema and bronchitis...Anybody else out there that's waited for this intermidable amount of time???

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Fantasy3

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gillwigan12 years ago

Its a long wait that is for sure, in the meantime try to do some exercise yourself i know it's hard alone there are DVDs you can buy to help you through, i myself bought a treadmill which is fantastic, im lucky enough to have a caravan on the coast so i walk on the beach when im there it really does you good and gets the fluid of your lungs which although never a nice thing it makes you feel better after its out of your lungs, sorry to hear about your wait hope you get PR soon .

xx Gill

junegirl12 years ago

Hi i waited a year i guess its different on where you live also my gp put a stop on it the first time as the costs came from their pot of money! but copd nurses complained to him and i was put bk on the list and done ph in feb, gd luck hope you get it soon xx

Fantasy312 years ago

Hi gill,

Thanks for the reply,I do actually do my own excercises,got a wii fit,but never know how far I can go,I just generally do it until I'm very out of breath.

We don't have a caravan,but we have a boat in the marina on the coast.its such a long walk to the actual beach tho.we do walk along the marina wall when the weather allows.

I don't find I have any fluid on the lungs??my main problem is getting sob.i don't cough,just fight to breathe.which is bad enough in itself.And I am finding that just lately I have an awful lot of muscle and joint pain,had bloods checked for arthritis,all normal.so I'm bewildered as to what it may be.any ideas?

Thank you.x

Fantasy312 years ago

Hi junegirl,

Omg!!a year,I just find that incredible.

Thanks for the reply tho.

12 years ago

My wait was nine months. I have very severe COPD and my fev1 was 29%. I also had very low 02 saturation which was supposedly to be sorted out at PR. The wait seemed interminable to me too. I had to travel 30 miles round trip to the hospital for it - walking and two buses. As it was winter by this time, I had to do one trip in the snow - only to find on arrival that the class had been cancelled.

The class itself left much to be desired - neither the specialist respiratory nurse or the physio had a pulse ox, so i took my own. We all did precisely the same exercises for the same amount of time (so much for 'individualised exercise tailored to patient needs') and all exercises could just as easily had been done at home by ourselves had we been given an exercise sheet.

The nurse was very nice, friendly, kind etc so when we were given a sheet to fill in at the end of the course, rating how we had improved , how helpful it was etc, we all discussed it between us - what a waste of time and disappointment it was but how we felt we couldn't put that on the sheet, so we all 10 of us said what a boon it had been, how much better we felt, how much we had learnt. Yes, we lied through our teeth. While I am sure there must be some good PR courses out there, I am equally sure there are many that are not up to the mark and that the patients do much as we did and make all the right noises at the end of the course.

On the subject of waiting times I have raised this issue with both the PR team, my GP and my consultant. The simple fact was that there are far too many patients waiting for far too few PR courses / places. This was back when only people with very severe/ very severe copd were referred for PR. Since then the guidelines have changed to include even moderate copd'ers with sob problems, so i imagine things will only get worse unless the health authorities are given more money and more nurses and physios.

The good aspect of my long wait was that I managed to educate myself very well during that time. I particularly looked at the nature and extent of muscle loss/dysfunction in copd, exercise, nutrition, oxygen, avoiding infections and so on. I realised that apart from the doctors giving us our diagnosis, meds and hospital admission as needed, the main factor in how well we do, how much or how little sob we have and how long we last is mostly down to ourselves. So I 'got on with it', and have made the rest of my life my own first class PR.

This morning I have done 10 minutes exercise bike, 15 minutes aerobics, 1 mile treadmill and some floor exercises. I have just had my light lunch with 2 soft boiled eggs for protein, and a cereal bowl piled high with salad. After posting this i will do my ironing, then it's a shower and hairwash before strolling to the supermarket to buy tonight's dinner - another mile walk. I am a different person to the one i was when first diagnosed - both physically and mentally. I can say, hand on heart, that none of that improvement is down to any GP, consultant or nurse, other than their writing prescriptions for my inhalers and oxygen.

I do not 'take it easy' nor do I 'pace myself'. I push myself in just the same way as before i was ill ie.exercise to my full capacity as it is now. I do not get depressed, have panic attacks or feel pessimistic about my future. I am 58 years old, 29% fev1, on oxygen and i expect to see my eighties.

I hope your PR turns out to be one of those worth waiting for - but don't just wait. Do your research, care for yourself and keep moving as much as you can. If you have the space, get yourself a treadmill and start daily walking - my own began with less than one minute at a time with a kitchen chair besides it to sit on when i needed to catch my breath. Where you are now is not where you will be 12 months from now if you are determined to try your best. Good luck and best wishes, P.

valm• in reply to12 years ago

Hi P have you the equipment at home e.g. treadmill many people won't be able to afford these but referral to the gym may help Val

• in reply tovalm12 years ago

Hi Val

Yes - initially used my DLA mobility payments to get treadmill - i now have bike, trampoline, weights and step too. You can pick most up for next to nothing second hand. I prefer home to gym as i don't have to make any effort to travel - do it in my PJ's No time wasted on travel either. Also don't have to worry if i'm hot, sweaty, grunting or whatever lol. I'm only on benefits so not any better off than anyone else, though i guess not having a car helps - no petrol to buy. Exercise is almost daily and for life in my case, so gym wouldn't have suited me really. P.

valm• in reply to12 years ago

See what you mean we have a cross trainer, mini trampoline, weights with a gym ball I used to use them all, need some guide lines though how far to push yourself. Walking is my problem short spurts only wish I could walk with out having to stop all the time thanks Val x