Oxygen Question

My ability to do my job has been going down hill as of late. I have to shovel, climb ladders, swing a sledge hammer, and carry heavy objects. I become short of breath in a matter of seconds. My Pulmo put me on oxygen last week. Not happy about it, but thought maybe now I can get back to doing my work. Wrong!
I still become short of breath, it's just that my O2 level stays above 90 now. So, am I still short of breath because of the reduced lung capacity? Is the purpose of supplemental oxygen, to keep your O2 levels up?
I thought oxygen would extend the time I can stay working, but it doesn't look like it. IPF Sucks!

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I have been enrolled in a pulmonary rehab class. It has been helpful in understanding how to breath better. When I was on the tread mill for 10 mins @2.5 mph my oxygen level went down to the high 80's. They put me on 1L of pulsed oxygen that did little to improve my oxygen saturation level then went to 1L continuous a slight improvement. The following they put me on 2L continuous and my oxygen level stayed at 95 during exercise. I used 2L continuous when snow blowing and /or shoveling and was able to work for over an hour with my oxygen levels staying above 93. I have been listening to them talk with other patients in the class and they seem to increase the oxygen level up 1L for the next class until the patient reaches a saturation level in the low 90's if possible. They then tell us that some time in the future you may have to adjust oxygen level upwards. when saturation levels fall below 88.

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Bitman, I'm new to o2 also. I know my setting isn't right, plus I am taking new meds that are (supposed) to help. I am starting low and titrating the meds.

My o2 is set 2l continuous flow at home where I have been almost all the time since my o2. I went with hubby last night to do income taxes and I was not able to do it without wearing the o2. I've been on it all night last night and all day today, then took it off for a bit tonight while watching tv. After 1:30 hours, I had to hook back up as I was short winded just sitting. If I can't hold it for a couple of hours, I'd think I need a higher l.

I used pulsed o2 when we went to do taxes and it was definitely different and I would like to learn more about it. I also went to PT yesterday earlier in the day and had my pulse o2 and I could not do more than 3 or 4 minutes without falling to 84 pulseox. I think being new to this is the pitts. I am going to talk to my dr about pulmonary rehab. Best of luck, Lucy

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Hey bit man,

I've been on this site a lot recently just browsing and this will be my first post as I have really just been looking for information that would help my situation. There are a lot of great stories/posts but you and I seem to have the same issue. I myself am a commercial electrician meaning I do electrical services on just about anything commercial you can think of. I am also finding it difficult to do my normal daily duties where they are mostly physical. I too have to carry tools and materials around with me,some of which can be very heavy and it frustrates me that I can only work like that in short bursts. I take a lot of stops to catch my breath and that's the only way I'm able to get by. I was diagnosed with sarcoidosis in Aug 2011 but had been dealing with harder breathing and the doctors for about 8-10 months before that. IPF seems to have the same symptoms that I do which makes me wonder about the prognosis sometimes but at present I'm not on any oxygen as my oxygen hasn't fallen to any critical levels. I think the labored breathing may be strictly due to decreased lung capacity and the way air is introduced into our bodies via our lungs. As I understand it once damage inside the lungs occurs it isn't reversible. Doctors can try to stabilize whatever condition you have and the side effects you are having and hopefully you can have a happy life but the only way to get "better" would be lung transplantation. Think about it this way. If you have a bad engine in your car, simply changing to better oil isn't going to fix it. No matter how good the oil may be the engine is still affected. That's how I understand it. Its only as good as the weakest link. Now I'm by no means an authority on this. Take it how you want to but that's my two cents. I know what you're going through because I'm in the same situation and praying that I can continue to work to make money but I also pray for anyone going through this because sometimes it seems like you're the only one that knows what you are going through and I pray that someday we all find a cure so we don't have to go through this anymore. God bless and God speed.

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pfsurvivor1975,

Are you sure your O2 levels aren't dropping when you do physical labor?
Are you checking it to know for sure?
I work in the asphalt paving industry, so physical labor is a big part of the job.
My pulmo put me on 2LPM cont. I'm trying to use a portable concentrator for work set on 2 lpm pulse. Maybe I should try a tank on 2 lpm cont.
It is really frustrating that I can't do with O2, what I could do a year ago without.
I have a big home concentrator with a 50 ft. hose and the ability to fill tanks.
I have pulse tanks and constant flow tanks, and the portable concentrator.
Just trying to figure out what works best for me as insurance won't pay for both.
I wish you well, as I fear this will only get worse for both of us. How depressing!

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My O2 levels do drop but not considerably. Normally I'm above 97 and never get lower than low 90's. Thats where it was when i went to the doctors. Blood gas always came back at 97- 99%. I also a few months back bought one of those finger oximeters and ive never gotten below low 90's. As of yet i havent had to take any oxy and i dont know if it would help me. Its the lung capacity that gets me. Its hard to be active nowadays.

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Hey Bitman,
I did pulmonary rehab 2x. Just do it.

Now I'm trying to maintain on 4L pulse when I exercise.
I exercise by "hall-walking" and on a treadmill.
I use stretch bands & an exercise ball for maintaining upper body strength & situps/leg extension

Here are som details, I:
-use a 6 lb POC [portable oxygen concentrator] when I exercise
-bought a $40 pulse oximeter which I use as a "speedometer" to exercise at >90% oxygen saturation
-bought a "FitBit" which counts my daily steps & puts them [privately] on the FitBit website
-have a goal of 10,000 steps per day [5 miles] and 45 minutes of "speedometer walking" per day
-usually can do 10 minutes of speedmeter walking and go .50 to .90 miles; like a short walk with the dog.

Probably this doesn't "move the needle" on my IPF much... but I sure feel better, happer and more capable of being in the world in a regular positive way.
Beats the heck out of watching my life go by or watching cable TV.
My sometime trainer who is Costa Rican calls what I'm up to: "practicing the way of courage" [practicando la route de couraje]
It is what it is like I used to say when I lived in Brooklyn

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Hello Bitman

It's a few years since I was in any place of work, but you left me breathless just reading what you are trying to do.
Although I am 71 and female I still have upper body strength. Not for lifting concrete slabs any more, but short lift of bags and stuff, ok. Now the thing I was told is that breathlesssness does not necessarily mean your 02 levels are down. In fact, I have become breathless just now, talking but I am sitting down and my SATS are 92. Not good, but not too bad either.

I shouldn't ask these questions really, but can you not do less strenuous work? Also apart from the STATS readings and the breathlessness, how do YOU feel? If I do anything too strenuous, I am all wrung out for a couple of days afterwards. AND I never seem to get back to where I was before, so I really have to not push myself too far. There is surely pressure here on your already damaged lungs, but what about the heart!!! I understand that we with just IPF sufferers will end up with Heart failure because of the pressure on the heart, or Lung failure because they are no longer working and will just pack up at some stage of the game.

How does your specialist or Doctor feel about the work you do? Does he think it's good to stretch yourself so far?
This is a disease that I would not wish on my worst enemy, but don't be so hard on yourself. And please don't be offended by anything I've said, but listen to what your body is telling you... slow down before you do have a heart attack.

xxx Shirley

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I'm a firm proponent of the pulmonary rehab. I think that as soon as you are diagnosed, the doctor should refer you to rehab. The breathing exercises are more than worth it.

Just a caveat emptor though, the majority of the information is for COPD and often conflicts with what is good for or important to Restrictive lung diseases. Just be prepared to keep asking them "does this apply to Restrictive?" even if you have to become a broken record.

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It is possible to become sob while sats remain high, just as it's possible for sats to go down without feeling particularly sob. The goal is to keep your sat levels above 90% because each time you go below, your organs (especially the heart) will take a hit. That's why most people actually die from the congestive heart failure rather than the fibrosis itself, although the fibrosis is the underlying cause. As far as how long you can do your line of work can only be determined between you, your doctor and your employer. The upside is that IPF is on the compassionate list for social security disability so you can apply for that right away when you can no longer work. I know that seems like an unfathomable decision now, but one day you'll look back and wonder why you thought that. I have heard rehab works wonders so you should def look into that. There are also breathing techniques on YouTube that are quite handy if rehab is not an option.

One day at a time ~ one step at a time ~ one breath at a time.

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Bitman:
Supplemental oxygen can bring back your energy levels, allowing you, to feel active and healthy. Supplemental oxygen also increases the ability to endure physical exercise.
I am thinking the cannula irritate the nostrils and this fact can create free radicals so it can contribute to negative changes to the airway itself. ( you are going to need a strong antioxidant, a good one is vitamin C).
The oxygen would extend the time of our lives; because the lung capacity is lower as pulmonary fibrosis progressed.
I understood your frustration. It's a crap disease. It's a damn disease. I HATE IPF!!

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Hello SISORBIF
I am going to stick my neck out here.... Supplementary Oxygen... As in most things, this will have good effects on some and not on others. I am going more on oxygen these days, than in the recent past, mainly because I know that I must if I am to protect my other organs. I worry that my brain will suffer! I can put up with some things but I wouldn't want my brain to deteriorate!

I know that when I go up the stairs to bed, my SATS drop sometimes into the high 70's more often in the low 80's. So I sit on the bed before I shower and take in the 02. My SATS improve, but I don't really FEEL any better. I stop the 'fish out of water' action, but if I sit quietly on the bed that will happen anyway after about 10 minutes.

That has always been the case, and Dr did say it does happen sometimes. Oxygen doesn't help everybody in the same way. There is no sudden recovery and feeling of wellbeing. As for physical exercise? no way.

Maybe age HAS got something to answer to as well.

I asked the doctor about 'pushing myself' too hard. Which is what BITMAN seems to be doing and the Dr said don't do that. Stop before you are on your knees, before you are crawling around gasping for air. The thing is to know when you've done enough and stop right there. That is me all over though, I don't know when to stop and think I am Soooo clever to finish a job. I have a lot to learn, we all probably have, but what suits one isn't necessarily right for another. If I overdo it one day, I regret it because it takes me so long to 'get right' again. I think I should be grateful that I was diagnosed in my late 60's. I daren't think about how I would have coped and tried to keep down a full time job as well!!!
Of course I am probably one of the lucky ones on this site, I only have IPF and by golly that is hard enough! Some members I notice have so much that is wrong and I feel so for them.

Good luck and best wishes to you all. This site is so good for thrashing things out and finding out things. Talking about IPF and sharing our feelings can only be a good thing.

xx Shirley

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Well, my Pulmo and my PCP both said. If my employer can't give me a less physical job, I should go on disability. But both are leaving that up to me, to make that call. My main Pulmo is a 3 hour drive away, so I just sent his office a message about trying pulmonary rehab. I feel as I'm failing my family and employer by going on disability, but think it's the best option to extend my life.
I'm glad I found this site to hash out my thoughts and feelings on. You folks are a huge help.

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Hello again Bitman.

Does your Pulmo or any of your doctors advise on this, i.e what is good for you and what is not. Mine has said 'don't push yourself too hard, it doesn't help. and only serves to put more strain on the lungs and heart.' IPF is a terminal illness and all the exercise in the world isn't going to change that or make it better. BUT it could hasten the progression if you don't find a happy medium.

You think you are letting the family down by going on disability/benefits, but what if you die! Is it not better to stay longer with your loved ones than to work yourself into an early grave.

I know, it is so hard to give up all the things we used to do, My love was gardening, and now, all I can do is watch the weeds grow. The highlight of my day is sitting on my perching stool in the greenhouse, potting up plants.

I think Rehab is good, but as someone has said already, be careful not to get drawn into COPD and Asthma discussions. Emphysema is an odd one. I was in hospital last year with a lady who said (do I believe this?) that with Emph the lungs become enlarged and she'd had a piece cut off the bottom of one of hers. I am still not sure if I believe her or not! does that really happen?

I didn't get any breathing instruction at rehab, which is what I most wanted. My breathing pattern is very bad at times. But we did walking exercises and treadmill, both were good under supervision of course.

Take care and our prayers go with you all.

xx Shirley

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Hey Shirley.... my dad had emphysema and his lungs did get bigger. His chest was large while the rest of him whittled away. He opted not to have any of his cut out. I pray so hard that it will be my heart that does me in and not my lungs. He had it so hard, whereas my mom had what I had and died peacefully in her sleep.

You can find breathing techniques on YouTube. I watched a couple of them and they helped a lot.

Bitman, I flat out asked my cardiodude about whether to work through it and push myself to try and get stronger when I start to "feel it" or to stop and rest until my breathing becomes normal again. He said to def stop and rest. He said that once the lungs become damaged, they will continue to become damaged and the more my sats drop, the harder it is on my heart. He said because of the lungs, the heart cannot be strengthened either so trying to push through will only cause more damage. I know it's hard when the time comes to have to quit working but you are not failing anybody by going on disability. You're showing them that you care more about them than the job ~ and that goes for your employer as well as your family. Make that bucket list and start working on it. You have some living to get done. ((Hugs))

One day at a time ~ one step at a time ~ one breath at a time.

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Decopeg, your two posts in this thread are SO GOOD! You are right on the mark!

I have reread everybody's postings at least twice because they are all excellent, but you go a step farther and give out good, solid information - which shirleyc does also in this thread, so kudos to you too, shirleyc, and for that matter, kudos to everybody! What would we all do without this site?

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Bitman,

I feel like you do. I have a job that requires a lot of movement & walking, in and out of over 100 vehicles a day. My sats drop into the 80's a lot at work, but come back up when I stop moving. But at the end of a day and most are 9-10 hour days I am wiped out.

I worry I am hurting myself, but my Pulmo like you says keep working, it is up to you to decide. Not on O2, but do I wait till I collapse? For those who say IPF is on the compassionate list, what are the requirements as far as pulmonary function. Somebody give me some numbers. I don't want to quit and then find out I am not sick enough to qualify. Message me here or on Facebook or email me at kseals73@wabash.net. God Bless Bitman, you are in my prayers.
Kevin

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Bitman I am sorry to say with pulmonary fibrosis and the need for oxygen puts you in the disability category
You are no longer able to do the job you were hired to do
Pulmonary rehab keeps your respiratory muscle stay strong so when you are sick
You can cough phlegm up and take deep breaths
Socially talking to others about having a chronic illness
Whether a rehab program or support group helps
Helps you learn how to breath (w/ PF)
And what you should do when your machine or portable breaks etc
Fatigue is a part of being sick with any disease
No one wants to retire this way but this is the reality
And SSD help with finances so apply as soon as possible
All you can do is take deep breaths and keep your lung clear to live a better quality of life
B2561

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Cubskevin:
I don't know how the system works in USA, but here in Canada; is totally a crap. They need to see you, dying in order to go home with a disability.
I am still working 8 hours/day. My job requires a lot of movement and to be in contact with chemicals.
The Union did a revision of my '''disease".
In a 6 pages very difficult to understand with fancy words, just to conclude that, I am still able to do my job. I need to use a mask in the period that I am in contact with the chemicals.
They expected me in Oxygen, at least 4 liters and an O2 under 88% after the 6 minutes’ walk. In that scenery, they are going to open the case again.
God bless us! God don't forget us!

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SISORBIF,

Thanks for the info. Sorry Canada is so hard to get on with. I worry about the US becoming that way with the new Healthcare law going fully into effect next year. Wearing O2 at work would be impossible for me, as I am in and out of over a 100 vehicles a day. I work for Toyota and handle shipping of vehicles as well as installing options on them. I pray you are able to get on so you can rest more. God Bless.

Kevin

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It all sucks but hey we can be positive,we are still here and can go for a short walk.it isn't any fun.IPF is a deadly disease,but thank God we are still able to move around.Let us keep one another positive.Yes l have a copious amt of pain and nausea,on oxyneo 160 mgms per day,on oxygen 3times per weekMy prayers are with you Hugs Barb

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