My OH has been issued with a concentrator, and six cylinders for going out, and taking to bed, recommended 1and half to 2 lpm on both. the cylinders don't seem to last very long, It seems to me that he is panting rather than breathing,( but then I'm healthy so I don't know how he should feel) I try to do pursed breathing with him to slow the rate down but he can't follow me for very long then he starts to pant again.Tony of the Malvern Hills, you seem to be so layed back about the oxygen thing Do you have IPF or Copd? OH has IPF with some unpronounceable variant Hyper something.
Was I mistaken in thinking the oxygen would work miracles? he gets very depressed when out of breath,I'm hoping not to have to hide the Oromorph at a later stage.He seems fine when sat in a chair, driving the car,(without the oxygen) but totally out of it when doing anything requiring effort
.Any ideas please which doesn't involve cliffs and edges! Hope you are all having a good breathe today AL
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ageing-lioness
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When he is moving around he is using more breath which leaves him feeling breathless. It also leaves his body short of oxygen. The prescribed oxygen will help to maintain his body organs and stop his heart from working too hard trying to sufficiently oxygenate them. It does not really help with the breathlessness. I find the best way is to move slowly, resting frequently; to get there eventually, rather than how I used to be, rushing from here to there. The pursed lip breathing does help! xx
Hello ageing-lioness, I am not sure how helpful my reply will be as my OH is suffering with severe COPD and has been given oxygen for exercise/ambulatory. When he was given oxygen the nurses told me that I was not to expect miracles - some people find it helps their breathlessness and others just don't it is about maintaining SATS levels and protecting internal organs. My husband is similar - absolutely fine until he moves!! I am not sure if this is applicable to IPF - but my husband has recently completely a Pulmonary Rehab course that has really helped him (honestly). Great results. Perhaps you could have a word with the BLF helpline (click the red balloon in the corner) - they might have some practical specific advise. Good Luck. With love and best wishes TAD xx
Many thanks Toci and Tadaw for your prompt replies, I guess miracles are a bit short on supply at the moment, our air-man didn't explain too much when he brought the supplies,( he has a habit of phoning to say he'll be there at 1pm or 6pm and turning up at 4.30 and 8.30pm respectively usually with an emergency out in the wildes tale which is non provable.) OH has hosptial appt in few weeks so I can ask about Rehab
This time last year OH was running up 4flights of stairs with suitcase in each hand starting our winter holiday in Andalucia. Life just rears up and smacks you in the face like a tornado! Take care everyone AL
I forgot to mention, I use 2 when seated/resting but have been told to turn up to 4 lpm when mobile. I still get breathless but it helps with the oxygenation stuff. x
I also have been shocked at how suddenly my low sats came on. I was struggling with breathlessness over the summer. My consultant suggested trying oxygen but said it is mainly to protect organs and no guarantee of a reduction in breathlessness. I have been on it for 2 months. I do feel better and believe I can walk a little further before breathlessness starts. I also read that it can take months before any significant improvement is felt.
I have been assessed several times and am now on 5Lpm, continuous flow, on my static concentrator for 15hrs at rest, including overnight, but need 8Lpm, for walking out and about, on a pulsed condenser. This delivers a 'pulse' of oxygen when I breathe in but conserves oxygen when breathing out. I have had to accept the bigger cylinder size due to the 8Lpm and they don't last long.
I am surprised your OH doesn't need more Lpm when walking out and about as most people's sats drop when taking exercise. But everyone is different and I assume he has had all the assessments done to decide what is best for him. Please do not change his oxygen level without agreement from the oxygen nurse. The wrong 'dosage' can result in co2 retension and this can be serious.
Hi AL, in answer to your question at the last diagnosis they tell me I have IPF, I also have a concentrator, 6 cylinders with a conserver fitted to extend their time and I also have Liquid oxygen. Even with all this armory I still have to live with breathlessness.
I owe a lot to a respiratory physio who put my head in the right place early on. She told me that breathlessness is a natural thing for everyone and all that has changed is the level at where I become breathless. She also told me the best way to breathe was using my diaphragm and gave me little breathing exercises to help control my panting/hyperventilating. Somehow it took all the fear away about being out of breath and its now just a part of my life that I face daily. Its something I have to go through to improve my fitness which in turn slowly but surely has improved my breathlessness level to new heights.
My lung function tests show my lungs have not improved over the last three years but my fitness has hence I am able to do so much more on the same amount of oxygen to the blood.
There is know doubt that exercise is very important which in turn helps clear your lungs but the one biggest improvement in my recent health and fitness was down to losing 2 stone in weight. This has added another 100 meters to my 6 minute walk test which is hard evidence that can't be ignored. I'm now up to 495 meters off oxygen but my sats drop to 69. 3 years ago I could only dream of such a distance, I could only do 100 meters on 5 litres of oxygen.
I think the secret of moving forward is removing the fear of breathlessness and to push yourself most day's.
Hi Ageing linoness ( I like your nickname, it gives you hope)
I used the concentrator in bed and the bottles to go ... for one hour at the gym or Sainsbury's. The first time, I went to Sainsbury's, I had a friend to push the shopping trolley while I was dragging my own oxygen trolley. it was really difficult and making me short of breath at every step.. Even to go to a car that was waiting, it was very difficult
I also received a device which only worked the bottle when I was breathing in (I can't remember what it was called) That made the bottle go longer.
The gym really helped me too.
Keep asking around, and perhaps at the BLF helpline. They probably have a leaflet of explanation.
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