Breathing problems

Hello I'm Kevin and this is my first post. I was diagnosed with Emphesema and pulmonary fibrorosis in august 2013.

I was put on long term oxygen therapy at 6 litres per minute for 16 hours a day and up until 3 months ago was managing quite well with just the odd flare up of problems for which I took my rescue meds of steroids and antibiotics.

The last 3 months I have been struggling more and more with any thing I need to do just walking to my car in the drive leaves me gasping for breath and going up the stairs leaves me thinking I am not going to see the day out.

Does anyone have any idea how I can get some relief from these problems or is this to be expected Thank you for any help you can give Ank92.

23 Replies

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  • hi kevin welcome to the site maybe its the weather not helping your breathing ,maybe you should mention to your gp about how its worse, im sure some of the other members will have more ideas

  • hi Kevin welcome to the site. sorry to hear you not feeling well. Sorry I don't depend on oxygen (if you know what I mean) but there are plenty of friends on here who should be able to reassure you. But please join us for a laugh and a moan when ever you want😊jan x

  • Hi Kevin and welcome to HU. Maybe your oxygen needs should be re-assessed at this point or have you had regular checks ? The time of year that's in it is probably one of the most difficult for those of us with lung disease. So many colds and respiratory viruses about, so much cold, windy weather. I have severe bronchiectasis and when an infection gets out of control, I also have problems with sob ( short of breath), the stairs in particular. Long term, probably the only way to cope with stairs is to move your bedroom downstairs or put in a stair lift. But do consult your doctor/ respiratory team to see if there's any additional medication or intervention that could help. I hope you get the help you need.

  • Try beetroot jucie the wife just showed me a clip on face book that they say it has oxygen in it and it should help people with chest proplams as they are doing research on it now it can't hert so I am going to start it tomorrow to see for my self

  • Hi David

    Would like to see that clip on

    facebook. Could you share it?

    Rubyxx 😊

  • I will ask the wife if she can find it for you today

  • Thanks for all reply's about breathing problems I will take it all on board and give it all a try Kevin.

  • Hi Ank and welcome to HU, can't help with the PF but know all about the joys of Emph. and oxy. Can identify with the dying feeling going upstairs, but as my con. said no one died from being breathless, it just feels that way! Take care xx

  • Hi and welcome to the site you should talk to your GP have you ever been on a PR course they can help a lot

  • Hi Ank sounds like you are struggling just now, some great advice already been given

    Have you thought of getting a stairlift, we had one through Social Services and only had to put a small amount towards it. It has been fantastic for me.

    take care

    polly xx

  • Hi Kevin, I know all our problems are different on here but I have just done 8 sessions from a 12 session course with the Pulmonary Rehabilitation Team. I had no faith in this when I started but believe me it works, there's no quick cure like throwing your stick away and going jogging, but a slight improvement is wonderful, I am now looking into carrying on with some sort of fitness programme when I finish the PR course. I am 78 so no spring chicken !!!!! Give it a whizz !

  • I did a pulmonary rehabilitation course last year and yes it did help in lost some weight and improved my fitness. The team got me some things to use at home and I joined the gym but my condition as still gone down bank but thanks for the advise kevin.

  • Hi I have pulmonary fibrosis and A F - I am on 4ltr 24 hrs - I have had this for 2 year , I feel now that I am getting control of it -- It has been in control of me - I sat and thought each problem out - Going to the car - going upstairs etc , I found that I wasn't breathing when walking - would take a deep breath and make for my destination - I broke down what I was doing into shorter rests - stairs I sit at bottom of stairs on a stool until I feel ready - concentrate on taking steps in my mind before setting off , Don't forget to breath. ( I did have a staner but had it taken out my heart doctor told me I needed the

    excersize ) most of the time it is about taking your time , my illness was very severe when it started ,3 month critical intensive care - 10 days in a comer . it has taken me 2 year to get where I am - I still have bad days When I feel like giving up ,but seem to have more good days . This is my experience which may help , some might seem silly , not breathing ? - but it has helped me - If it helps you will be so pleased for you ,

    Good Luck - John

  • Very interesting Brunlea. I have huge problems with the stairs and will try your method.

  • Hi Brunlea. Your comments to John about your illness and in particular the SOB, really made me sit and think just how right you are. It is a case of planning everything and getting your breathing right. Taking your time and knowing that or lives have changed forever but we have the choice to either make the best of it or not. I'm on oxygen for about 10 hours a day and had to move into Ground floor flat as I can't manage stairs at all. However this site has made me see that there are others who strive to do so much and that I can't sit drowning in self pity any more.

  • Hi Kevin, sorry to hear your problems. First I would contact whoever you see about your oxygen, do you go to an oxygen clinic? Our oxygen needs can change and it may be that they will change your prescription which will make life easier for you. I was surprised that you were on 6Lpm for 16 hours and then nothing? Do you use it overnight? Seems odd to me, but there must be a reason.

    Meanwhile to help you with stairs etc when you don't have your oxygen it might be worth trying a technique of breathing that certainly helps me. At the foot of the stairs start doing gentle tummy breathing, then change to breathe in through your nose to a count of 4, hold your breath for a count of 4, then breathe out through your mouth to a count of 8, do this a few times and then start climbing. The breath in after a long breath out will fill your lungs more than usual and then climb a few steps while you breath out to a count of 8. Stop, get a breath in and climb again while you are breathing out. It takes a bit of practice but you should find that you are much more able to climb stairs using this method. You may not realise it but our natural instinct is to hold our breath when we climb stairs which is an extra reason for it to be so difficult. You may find that it helps to purse your lips when you breathe out, some people find it helpful and don't forget all the breaths in should be tummy breaths. I assume you know what tummy breathing is?

    Good luck.

  • Hi Kevin, I to have PF which they tell me is being caused by Anti jo 1 pos . It came very quickly 5 years ago and since then life has been a lot slower with lung function ranging from 33% to 23% TLCO (gas exchange).

    Stairs are a problem there's no doubt and I feel very breathless about 10 seconds after reaching the top. Normally I will sit on the bed until things settle down then get on with what I set out to do.

    Yes a stair lift would help but I feel the exercise for me and my lungs is more helpful than resting so I will continue to huff and puff my way up the stairs for as long as possible.

    I don't think there's a lot to be done but if your overweight then losing a few Kg can make a huge difference on inclines as I found out myself.

    Its possible you need to increase your dosage of medication so seek advice from GP.

    If your coughing up a lot of water and sputum then maybe furosemide water tablets will help as they do for me.

    Regular exercise is the biggest help for keeping the lungs clear and less stiff and has certainly been my saviour.

    Tony

  • Hi Ank, Have you tried breathing out on every step. Breath in before the step and breath out as you do each step. Might help :)

  • Totally agree sirjames, breathing control is very important to make the most of what you've got because catching up ain't a lot of fun is it.

    Sometimes I reach the top of the stairs to quickly without breathing much on the way up but then it hits you and boy do you regret it.

  • So true Dall, it's all about pacing but we forget. Do you find your condition fluctuates throughout the day? Sometimes, I feel a bit better some evenings than I did throughout the day/. Still crap though

  • Yes there's no consistency, things change from hour to hour. Yesterday was up and down but when I went to bed I got up the stairs much easier than normal which has carried on this morning :) so I might be in for a good day but who knows?

    I wish I could find out why this happens but there seems no pattern to it.

  • Horrible illness! Have a good day :)

  • I THINK PULMONARY REHABILITATION IS THE BEST PLACE TO GET A LOT OF ANSWERS. I hope you get to doing better. Sorry about the caps I did those on accident.

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