Breathing problems: Hello I'm Kevin and... - Lung Conditions C...

Lung Conditions Community Forum

55,061 members65,848 posts

Breathing problems

ank92 profile image
23 Replies

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.

Written by
ank92 profile image
ank92
To view profiles and participate in discussions please or .
Read more about...
23 Replies
mmzetor profile image
mmzetor

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

grannyjan profile image
grannyjan

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

Billiejean_2 profile image
Billiejean_2

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

rubyred777 profile image
rubyred777 in reply to

Hi David

Would like to see that clip on

facebook. Could you share it?

Rubyxx 😊

in reply to rubyred777

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

ank92 profile image
ank92

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

Sheilab123 profile image
Sheilab123

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

onamission profile image
onamission

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

pollyjj profile image
pollyjj

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

Tatters profile image
Tatters

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 !

ank92 profile image
ank92 in reply to Tatters

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.

brunlea profile image
brunlea

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

Billiejean_2 profile image
Billiejean_2 in reply to brunlea

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

SquirrelsHolt profile image
SquirrelsHolt in reply to brunlea

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.

evermore profile image
evermore

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.

dall05 profile image
dall05

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

James48 profile image
James48

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 :)

dall05 profile image
dall05 in reply to James48

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.

James48 profile image
James48 in reply to dall05

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

dall05 profile image
dall05 in reply to James48

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.

James48 profile image
James48 in reply to dall05

Horrible illness! Have a good day :)

punkyb profile image
punkyb

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.

You may also like...

Breathing Problems - COPD?

Well I have breathing problems, not the normal COPD Flare Ups. For a while now I have been getting...

Breathing problems

breath I am my fingers turn blue has any one else got this on a day to day basis x

Breathing Problems

Hello everyone, I'm a long term severe asthmatic, chronic pain and spasms sufferer with many other...

Anybody else having breathing problems 15months after Covid?

you in 6months time. On ever growing list for pulmonary rehab. Breathless, congested, tired. Tell...

Breathing

hospital two weeks ago and now on home oxygen. It is set at half a litre but I am still getting out...