I was diagnosed with IPF in December 2011, Last week I had the six minute oxygen assessment. The first part was without oxygen and sats went as low as 70. I then tried the six minute test with oxygen but the only reasonably light portable tank failed as soon as I started. The nurse went away and returned 20 minutes later with a waist high trolley with a rather heavy oxygen tank that I had to pull while trying to walk bristly. The tank was so heavy that I could barely manage my breathing so the results were inconclusive. However, she still offered me oxygen if I would accept the liquid oxygen tanks.
Since I feel that I only need oxygen on an as needed basis I brought up the subject of a battery operated portable concentrator because I think that the liquid oxygen tanks would not provide me the flexibility that I need to be able to stay reasonably fit and continue to do walking, lawn mowing, and other physical activites that I believe that I should still be able to do. She was very much against the portable concentrators, I think based on the fact that I was sometimes breathing through my mouth during the test with oxygen. I used to breath through my nose but when the IPF first start I had five days of horrendous nose bleeds and blocked siniuses so the only way that I could breath was through my mouth.
My question is has anyone else had the same problem and been able to retrain themselves to breath through their nose enough to use a pulsed concentrator? I am currently doing better at it but do have lapses.
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I have a liquid oxygen system call Helios Marathon that does continuous 1-6 and pulsed 1 - 5. It weighs about 7 pounds when full. If your oxygen drops to 70 I would say you need to be using it practically 24/7. I also have an Eclipse that does both pulsed and continuous and the pulsed is easier than many other systems. I know the canisters on pulsed give me problems, yet the two I mentioned are much easier.
My dad was diagnosed with IPF end of 2008 and has only started to use oxygen this past month. He has the little portable cylinders that last 1hr 47mins. He has 6 at a time and they last a few days maybe.
Like you he feels he doesn't need them all the time but is learning day by day. He will use it to go to bed (upstairs) and for about 10 mins when he gets there. He doesn't need it during the night. He will use it the morning before coming downstairs and then after he has had a bath etc. He tends to use it for about 10/15 mins at a time.
He always takes it out with him now, he views it as his lungs and where he goes, it goes. If he takes my mum shopping then he will sit in the car for 10 mins using it before going in. He hasn't used it whilst walking aroung in public yet, I suppose it is a big decision for him and he is a proud man.
When he goes for his pulmonary rehab he uses it there, he has too when excercising and his respiratory nurse has to remind him that whilst he may feel fine at times without the oxygen he must remember the strain not using it will put on his other organs. He too, wouldn't breathe through his nose, just his mouth he said he found it hard and couldn't get the oxygen in but his specialist showed him a very good breathing technique which he is using. You breathe in through your nose, hold your breath whilst making a bubble shape(if you knw what I mean....like a fish)and open your mouth slighly whilst letting the air out. He finds that especially helpful when he starts to pant. Hope that makes sense.....I didn't really know how to explain. He said pursing the lips like a lot of people do is okay but for IPF sufferers, that was better.
i have asked the question about machine versus the cylinders and been told that NHS will not supply them, i suggested that subsidizing them would be a good idea, answer was no. after 4 years on portable Oxygen and having trialed a machine, i can not see why it is not more economic to supply machines as they do with the domestic supply,
it may be that they are portable and so easy to lose or sell, this i believe what used to happen when they supplied batteries for the conserve rs, it may be that a layout of £3000 in one hit looks expensive,
it may be that the suppliers of Oxygen sell gas and so put in silly quotes to maintain machines, but i do feel that this is the way forward.
any one any ideas. it could be a new subject?
Hi Watcher
I would choose the Helios over the battery operated portable any day. I walk, carry shopping, dance and exercise all with the Helios, and for the past two years prior to getting a concentrator I also hoovered, mopped, cleaned the shower, the windows etc. all with the Helios on my back. The battery operated one's don't go up to the higher flow rates I would need to do half of those activities. Still, if you really want a battery one - keep an eye on EBay, they come up second hand quite frequently.
I breathe through my mouth also Stitch sometimes if my sats get low when I am tired I use a mask and that helps sats go to a better level Val
in reply to
Breathing in through your nose and pursed lip breathing out through your mouth could help you get the best use of your oxygen.
Any oxygen nurse should be able to show you how to use it so that it helps you out when you need it for walking.
Permit me to clarify something about the sat levels. When I was doing the six minute test I was walking so briskly as to be almost running. I ended up extremely short of breath. Contrast this with rehab, where after six minutes on the bike, six minutes on the treadmill with a slight incline, and several other exersizes my sats only dropped to 84 and came back up to 92 after a few minutes rest. I really don't know whether they have dropped lower at any other time other than the test. Interestingly, when I suggested buying an oximeter to check my levels she indicated that it was not a good idea. At this point I am rather confused and looking forward to discussing the test with my consultant at my next appointment a month from now. I have been working on breathing more through my mouth and am getting a bit more consistant.
Yes - get that oxymeter - that way if you don't have 02 you can monitor your sats when exercising or exerting yourself generally and rest to bring 02 levels back up as needed - or, if you are put on 02 you can still monitor your sats to see if the level you are on is maintaining a decent saturation level . Either way you can't lose. Try Amazon - they have a good range from the cheapest to the more expensive. Even many serious sports people use them, as well as airline pilots , so no earthly reason why you can't.
Second that Parvati you need to know that enough oxygen is in you to keep you safe an oxymeter is a must have to know what is happening. You would not drive without a speedometer so why try walking without an oxymeter telling you when you need to slow down.
Well put Bilbo. I would never exercise without my oxymeter although I can now tell when I desaturate, it is good to be able to check my O2 level & recovery time.
I have taken the advice from Parvati and Bilbo and jusr ordered an Oxymeter from Amazon. Hope to have it in a few days and will keep tabs on the sats before I see the consultant next month. I really appreciate the responses. They really have helped me to understand the Oxygen issue much better.
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Dont panic.All I could think of was Corporal Jones.
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Dad recently diagnosed with IPF
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