Need Advice & Information,About Care,Equipment & Medication With My Emphysema Condition.

[EmphysemaSufferer]

I have had Emphysema for around five years,thankfully i gave up all smoking but not soon enough,My days can be very hard to get through,i exercise as much as i can when im able to,Its not the being out of breath that i find hard,Its the lack of energy i have through out my day,the only way to describe it. it literally feels like im having the life sucked out of me completly to the point that all i can do is lie down on my bed and rarely move due to haveing no energy whats so ever,its very debilatating,and i have to use what time have being active very wisely to be able just to live and do what i need to do to live,just the simple things like opening a tin of baked beans gets me out of breath,and if im to active it really effect me later in the day were i generaly just need to go and lie down and rest.I want to ask if there is any sort of treatment,medication,therophy,or equipment that i could get on the nhs that could improve the quality of my life.I am not a rich man,i really wish i were so i could afort the nessasary equipment to improve my life,Any advice,or information concerning my condition on how i can improve the quality of my life would be greatfully recived, also if there are any fellow suffers that want to ask me a question or advice about my experience suffering with emphysema,if i can help in anyway please get intouch

[greatauntali]

As a fellow sufferer, I hope you get some answers because I can identify with everything that you say and it is soul destroying when even the most basic of tasks can leave us a gasping wreck. I couldn't have milk in my coffee the other day because it was a new container and I did not have the strength to open it.

[Nikilet]

I can identify with you. I just received a non-invasive ventilation machine, Phillips Trilogy 100, through my oxygen provider and Medicare. I'm comfortable when I have it on breathing through it, but I don't know if it's actually making things easier for me when I don't have it on. I've only been on it about 2-1/2 weeks. I guess I will just keep going, keep praying and keep hoping.

[Ergendl]

Ask your GP to refer you for Pulmonary Rehab. This is usually a series of 2 two hour sessions for six weeks, covering how to exercise safely with a lung condition, and how to look after yourself for optimise what you can do despite your condition. When I was first diagnosed with COPD I had stopped doing things because they made me breathless. Going to PR helped me realise I was hyperventilating and the physios helped me control that so that I can do much more. Getting breathless is OK, pushing through being breathless is not so good. My fitness has improved so much I have increased my daily steps from 2500 around diagnosis in 2015 to 10,000 a day now. All the best, M.

[sassy59]

I agree with Ergendl, pulmonary rehab could be good for you. Doing what you can when you can is a good idea. Take care xxxxx

[gingermusic]

Definitely get onto a Pulmonary Rehalb course and once its over keep up the exercises you will learn as they really do help strengthen your lungs.

[stone-UK]

Hi

As mentioned above exercise is the key.

You can also speak to you local council social services, they can offer a care and support package subject to assessment.

For a confidential chat speak to the Benefits advisor at BLF.

healthunlocked.com/blf/post........

[CornishBrian]

The posts advocating Pulmonary Rehab (PR) are 100% right. Can you remember the earlier rechargable batteries....if you didn't completely discharge them once a week, they built-up a memory and so you could never fully recharge them? Our bodies can develop that sort of tendancy....it only produces as much energy as we demand. I was diagnosed COPD in1989. I spent a lot of time driving and driving also meant smoking...just to kill the boredom..Im now 69 and am rated very severe. Having learnt from PR the benefits of exercise and what is the best things to eat, keeps me going. Now hold on, if your thinking "exercise".... do these people realise I struggle to clean my teeth in the morning? My thoughts were that. Then when they said the sessions were being held in the hospital gym....that was the last straw. Gym, gym? Gym has never appeared on my bucket list of what I want to do. I mean I did 12 years in the RAF, evading the gym

I even volunteered to wear the padded suit and let the police dogs attack me to get out of gym sessions.

So, my plan was to go along to the first one, give it a tentative try and find excuses to not to another session. But, things changed. It was fun, you weren't given targets, you set you own. After 3 weeks, I was back doing gardening and at the end of the 6 weeks, I completed the bleep walktedt to the end....and could have carried on. The achievement not only boosts your moral and self esteem but it improves your whole life.

I know there can be delays getting on a PR course, don't just sit back and feel tired. Go to BLF site and see some of the exercise routines, even got chair based exercises or go on you tube and learn from others doing it. Keep a paper copy of your progress....don't push it too far, too quickly but I'm sure you will get a quick boost. Keep in touch with me, we will support each other in this.

[mrsmummy in reply to CornishBrian]

Well said!

[lKeith]

EmphysemaSufferer

Hi, It sounds like you are at the same stage as me, any effort leaves me breathless and very tired out. The BLT forum should be able to give you some leads on what you can get. I went thro' Palliative Care Team which is supported by NHS. They are able to give you support, point you in the right direction and even organise another dept to make contact with you, I have found their service great. Most of the equipment they supplied me was not exercising stuff but essential to help make tasks a little easier.

I have obtained thro' them at no cost, a hospital bed, washing stool, raised toilet seat, WC surround frame and a few other bits. They also arranged for an external alarm box/key box and importantly a 24hr, arm strap that if you have say a fall they can be summoned & with the external key box get to you in the house. It can also help locating you away from the house.

Have you been to any re=hab sessions? if not arrange these thro' you GP nurse, they hold sessions throught the country. It's about 6 weeks twice a week and they help with exercises many of which you can do at home, it all leads to a stronger you.

There are ways of improving your situation out there, they also do follow up visits to see how you are getting along. It's a service they call community care to keep you at home rather than in hospital, even a hospital stay can be arranged.

Try contacting your local hospital for a starting point, they should know contact numbers for this service that can put you in touch with external agencies. Can't praise them enough, If you are retired they can also help with the Work & Pensions dept application form to help you get "attendance allowance" if needed.

Good luck. Sorry to have been so long winded but it's only intended to offer ahelping hand.

IKeith

[ross-35_]

Your tory is exactly how i feel too...But all the replies you have had regarding PR Exercises are so correct...it also gets you out meeting others too...please try what they suggest. Its helped me loads!

[James48]

Hi, it sounds like you have very low lung function. These You Tube video links might help but they might be too hard for you.

I agree with others about getting on a pulmonary rehab course. It is very good and you will not be asked to do anything you cannot do. It will be gentle. You will meet people the same as you and can ask questions and get advice. Usually have a cup of tea at the end. Keep on

google.co.uk/search?ei=Ornp...

[Lazarus]

Sorry to hear that your condition has got you down, despite your head telling you that you want to carry on living life as much as possible. The Pulmonary Rehab courses and staff are a great start, with great people, and this web site is a great forum, where you will learn more and more each day. I was the youngest by far at my PR, but one of the least able too so it gave me great motivation to improve and keep it up. There are also links to some excellent medical web sites with interesting information for all sorts of things. You didn't mention whether you have seen your doctor recently, because you might just have some other issue that is draining your energy, so please go and see him/her to get some checks done first of all. Best of luck and hope you manage to regain some worthwhile fitness and energy.

[soulsaver]

Nothing wrong in what's already been said, but have your oxygen saturation levels been checked? Are you on oxygen? Maybe it would help, so explain your restrictions to your GP or respiratory nurse.

Best wishes

[Ellena in reply to soulsaver]

Hi Soulsaver Not on oxygen and not had oxygen saturation levels checked since x-ray and being diagnosed. Thanks for your reply.