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    • #32667
      Natalie Mondor
      Participant

      Hello Everyone,

      I am on oxygen 24/7 and have a continuous unit in my house on 3 lpm.  I also have a Caire Freestyle Comfort pulse, but even when I set it on 5, my sats fall too low (80-83), with any movement like walking. My provider says it should be enough for me and that I need to breathe more consistently. I did and there’s not too much of a change. So my question is, what do you use to get around outside ? Since exercise is really helping me gain strength, I’d like to be able to walk. Right now, not even the mailbox is feasible. Thanks in advance for your advice. Natalie

    • #32678
      Sue Miles
      Participant

      Hi Natalie,

      I understand what you are going through. I bought an Inogen 5 portable concentrator that was helpful in the past, but as my oxygen requirement increased, I needed more. I purchased an Eclipse5 that offers up to 3 lpm continuous flow or higher pulsed rates, but the battery dies too quickly. Despite the e-tanks being cumbersome, they provide the best portable support to me with continuous flow oxygen. Any exercise (walking) makes me extremely short of breath, so I bought an aluminum wheelchair that is lightweight. I attach an oxygen cylinder bag to the back that makes things a bit easier. I find it important for me to get out at least once a week and am able to do so using the e-tanks and with the help of supportive family and friends. I hope you can find something that makes things easier for you.

      • #32687
        Natalie Mondor
        Participant
        1. Thanks, I’m glad you found something that works for you.
        • #32740
          Donna Heiser
          Participant

          The Life 2000 allows you to walk. You do have to use a oxygen cylinder, but it helps with being able to go out doors or to the grocery store. It also hooks up to your home oxygen machine (without the cylinder). It’s made by Hillrom.  When you get it from them, they send a Respiratory Therapist ti your home, who is well trained by Hillrom to set it up for you. And then they check on you frequently.

      • #32726
        Brenda
        Participant

        Hi Natalie.

        I just had my breathing test and 6 min walk last week. I was at a 3 or 4 setting. I have tests every 3 months. This week I’m going to try continuous flow on my portable machine. I can be at 1 if I’m just sitting with my floor concentrator. At 3 or 4 when I’m cleaning, gardening, or doing things around the house. For some reason as soon as I  stand my oxygen drops and keeps dropping.  She would stop me at 80%. It does go into the 70’s lately. She tested me with no oxygen, then pulsating, and then steady flow. I was very hard to control with pulsating. This week I’m trying out a steady flow on my portable machine. I might have to use the smaller oxygen holders. I’ve been on oxygen since day 1 of my diagnosis. I am thankful for each day. I wish I could get answers from my doctors as to where I am in this disease. Good luck trying to get regulated.

    • #32679
      Pete
      Participant

      Natalie,
      There is so much misunderstanding between pulse and continuous O2 out there between doctors and sales people. Pulse setting 5 on your Caire Freestyle Comfort is not even close to being 3LPM continuous. The pulse 5 setting on your portable Caire Freestyle Comfort is outputting 1050 ml of O2 per minute max (1 LPM). Your 3LPM concentrator is outputting 3000 ml per minute. Do the math and you will know why your portable is not going to work for you. Just look at the size difference in your machines. As smart as some doctors are they do not know this and do not have any common sense to figure it out. Its what we used to call book smart only. Put a screwdriver in their hand and some would not know which way to turn it to loosen a screw. There is an portable Eclipse 5 that outputs 3 LPM continuous that is 2.5 the size of your Caire that would work for you now or you need to switch to tanks or liquid O2 when going for a walk. If your anything like me you will need more O2 for exertion than at rest. I hope this helps you a little.
      Pete

      • #32688
        Natalie Mondor
        Participant

        Thanks Pete. I share your frustration. Doctors, physical therapists and certainly oxygen providers should know better. I’m wondering too if the Medicare reimbursement has something to do with reliance on the smaller, cheaper units. Thanks for suggesting the Eclipse 5. I’ll check it out.
        Natalie

      • #32729
        Brenda
        Participant

        I agree with you 100%. I’ve been having tests every 3 months  for a little over a year. This time my tests were done by two physical therapists that previously worked with me. They had trouble keeping my numbers up and were checking on me a lot. One even called the Pulmonary department to tell them what was happening. I was given antibiotics that helped somewhat. They were the ones that put in a recommendation for a continuous concentrator. They talked about the pulsating ones and how much better I would take in oxygen with a steady flow. It seems odd that I wasn’t told that much earlier.

      • #32766
        Peter Brooks
        Participant

        Pete, I’m puzzled by your calculations.  It seems to me that when resting, a pulsed machine setting of “5” is about equivalent to a continuous machine setting of “3”.

        Assume that a pulsed machine on setting “5” outputs 1 liter/min (as seems to be indicated), and a continuous flow machine on setting “3” outputs 3 liters/min — 3 times as much.  However, output is not the same as input.  Using a pulsed machine, I inhale everything it produces because it only delivers when I inhale.  But that’s not the case on continuous flow.  For myself, even during exertion, I am inhaling only half the time, and exhaling the other half.  Therefore I am only using 1.5 liters of the 3 that’s being output, the rest is wasted.  When I’m at rest, I’m inhaling only 1/3 of the time, and therefore getting only 1 liter/min — the same as the pulsed machine on setting “5”.

    • #32681
      David
      Participant

      You have my best wishes!

      My advice is to follow your physician’s directions…

       

      Dranyam

      • #32683
        Roger Cummins
        Participant

        Natalie,

        Pete is spot-on.  I have an Inogen 5 and spent about 3 months trying to figure out why my sats were dropping off with minor activity.  I finally looked up the specs and saw that at a setting of 5, the Inogen 5 only delivers a little over 1 (ONE) LPM.  It’s a shame that we patients have to figure this out on our own.  I think the manufacturers of the POCs know exactly what they’re doing when they use the same numbers that the continuous flow devices use, thus leaving us to believe these are LPMs.  Practically everyone I talk to (nurses, doctors, etc.) thinks these numbers are LPMs.  The manufacturers should be required to use something other than the 1-5 numbers. . . . . like maybe A,B,C,D,and E.  That way SOMEONE would have to tell us what they mean, or we’d have to look up the information.  It appears to me the manufacturers don’t want you to find this out until you’ve forked over $3k to them.  Sorry I got so lengthy. . . . .but this issue hits a nerve.

        • #32692
          Natalie Mondor
          Participant

          Roger,

          I totally share your frustration. It is very tiring to try to educate the people who are supposed to be helping us. But I’m so grateful to you and the members  of the PF forum for all the advice. It really helps.
          Natalie

      • #32689
        Natalie Mondor
        Participant

        Thank you, David. My best to you as well.
        Natalie

    • #32682
      Pattye
      Participant

      I have to watch the temps and the humidity levels before I try to walk outside. I do a breathing treatment or inhaler before going out; seems to help! Thinking I need to walk in A/C! Pace yourself; slow is ok; breathe!

      • #32690
        Natalie Mondor
        Participant

        Pattye, thanks for the good advice.
        Natalie

    • #32693
      Sue Miles
      Participant

      Natalie,

      I have an Eclipse 5 and am very disappointed in it. While it is advertised as continuous flow to 3 lpm or pulsed to higher levels than most other portable concentrators, the battery runs down very quickly. I even purchased a second battery for backup but I only get 45 minutes to an hour on a battery. There just don’t seem to be adequate portable oxygen systems out there.

      Sue Miles

      • #32694
        Natalie Mondor
        Participant

        Sue,

        That’s so disappointing. And it’s heavy too, on wheels. Is it also hard to put in the car ? Although with what you have said about the battery, it doesn’t look like it would be good for me.
        Thanks and be well.
        Natalie

    • #32701
      Karen Martin
      Participant

      Natalie, there is so much solid information here.  Pete is exactly right about the difference in pulse and continuous flow O2.  Of course we should follow our doctor’s orders, but they also need to be in-the-know about these things, too.  Outdoor humidity as well as temps affect breathing, without a doubt.  I am also not “consistent” in my breathing.  I tend to become a mouth breather when I am stressed, which is totally self-defeating.  Do you know about pursed-lip breathing?  That can be very helpful, as is slowing down your pace.  I don’t know what the situation in your area is in regards to available pulm docs but if your current fellow doesn’t give you what you feel is adequate support and information, I would look into someone else.  Best wishes to you.

      Karen Martin

    • #32706
      Patricia Osback
      Participant

      I have a pulse system that I’m not sure I like. Stupid me never contacted my doctor about having an oxygen unit. Our family had planned a trip to Disneyland so I jumped the gun and called Imogen. Now that I’ve had it almost a year I just get along with it

      thank all of you for your information

    • #32716
      Charles
      Participant

      Well hi to all of you who are having all of these problems. I to can join in with all of my heart and brain. First let me address the doctors portion of questioning. There is no one doctor who knows what to do or how to do it. They all differ and that is a real shame. What i have just said is of no help breathing but it may help you understand that we are all at the mercy of many doctors. I agree with Pete about doctors. As far as a breathing device, i have and like, the unit from SuperCareHealth. (1800 206 4880 ) My portable is fairly light weight and put on two liters it will last six or more hours. However, it does not go to 5 liters, only 4. I also have an in home unit that supplies constant oxygen, and i am also happy with it. Not to mention, that when there is a problem, they are on my doorstep asap. I have had this Lovely disease for 9 years now. Much longer than i was told i would last when i found out about it. However, i like most of you, when i exert myself as much as going pee pee from my sitting in the living room watching T V and my oxygen is 92 to the bathroom and back, i drop to the low 80s. However, i do recover in a matter of minutes. When i get back to the low 90’s, i sometimes take off the oxygen and can go for hours without. I really don’t think that there is anything that can be done about that. Sorry to the faint of heart, but it is called dying. Back to the doctors again. There is not much we can do but follow what they say. What are the options? None! I have recently started the a fore mentioned lip breathing and of course, the new miracle drug, ZINC. So far no noticeable difference. Hope that this all helps yu cope with what we have. To sum it up, it’s a bitch!!!

      • #32725
        Natalie Mondor
        Participant

        Hi Charles,

        I so agree with you and I echo your sentiments. It’s great that despite all that, you’re still here!
        I’m glad you’re happy with your portable. Can you tell us the brand name ?

        Natalie

    • #32717
      Pete
      Participant

      Charles,
      You do make some good points in your post. I just hope for your safety that you realize that the 4 on your portable is not 4 liters. It is more like 1 liter in reality at the highest setting. The manufactures of those lightweight portables need to change the markings to .25, .50, .75, 1 if they want to use liters then it would be telling you the correct amount of O2 you are getting. It is impossible for the small sieve beds in those lightweight portables to output 4 liters of above 90% O2 in one minute time. It could put out 4 liters but it would take 4 to 5 minutes to do it.

    • #32731
      Peter Franks
      Participant

      It’s more complicated.

      1) If you use 3 L/m continuous around the house, your oxygen needs are much lower than what you need during exercise to avoid hypoxia.  How much lower will vary from person to person.  How much hypoxia you can “tolerate” also varies from person to person. Apart from the discomfort of hypoxia, preventing prolonged hypoxia ( pa O2 <90) with O2 for 12-16 +hours/day has been shown to reduce mortality.  But I am not aware that for short periods of exercise, hypoxia shortens life.

      2) A pulse  POC delivers oxygen only briefly, during inspiration. Continuous machines deliver it continuously, including during expiration. Delivery during expiration is not used by your body. So while it may be that the total L/m of a pulse machine is much lower  (for example the maximum is often 1 l/m on a setting of 5 or 6), the amount of useable O2 delivered to your lungs is not so much lower. How much lower varies from machine to machine and person to person and how you breath (mouth, nose, length of inspiration/expiration).  Learning how to use a POC is helpful ,especially with exercise.

      3) I wouldn’t worry too much about your O2 sat during exercise beyond how it makes you feel (i.e. what you tolerate) as long as after your exercise the O2 level gets back above 90 once you are at rest with home O2.

      • #32753
        Natalie Mondor
        Participant

        Peter,

        Thanks so much for this really helpful information. It clarifies some questions I had and will inspire me to do more exercise. So relevant to me today after a  pulmonologist visit yesterday to see how I did after 5 weeks of PR. “Impressed” and “excited” was what he said, a big change from the doom and gloom from early June. So I feel confident about my exercise program. Be well.
        Natalie

    • #32733
      Jim
      Participant

      We are all experiencing the frustration of a degenerative breathing disorder. Most of us have been able to treat other maladies and recover.

      The IPF problem is that no one has yet developed medicine or therapy to cure us or even halt the ongoing march of IPF. It is easy to get angry and blame “incompetent” doctors, therapists or oxygen vendors but the real issue is our “orphan” disease.

      I am a 78 year old male wbo was first diagnosed about 3.5 years ago. Initially no need for supplemental O2 but that is now an ever changing adjustment. I can still cope fine at rest but any exertion requires supplemental oxygen.

      Until or unless more effective treatment is found we will continue to be swimming against a strong and relentless current.

      One of my docs told me IPF may not kill you but you will have it when you die. For me one of the biggest issues is to accept and understand the unfairness of our disease.

    • #32736
      Tim Costar
      Participant

      My provider was completely ‘up front’ with me on the difference between my poc and the continuous flow I have (but don’t really need) for at home use. I was prescribed 2 lpm for exertion but he set the poc at 3. Rationale was that most of the O2delivery on continuous flow is wasted, you only need what 2lpm delivers in each minute for the period you are breathing in. So far it has been doing the job for me. With the poc set to 3, I’m maintaining sat at over 95 while walking compared to low80’s without supplementary o2.

    • #32758
      Jan Evans
      Participant

      Hi Peter Franks. After finding out (after months of searching) that my Inogen G5 only outputted 1.25 lpm of oxygen on setting 6, I started to wonder how this worked in relation to continuous flow(which I don’t need – I am on 4 lpm on exertion) and if getting the pulse of 1.25 lpm was adequate. Your 2nd point was interesting in this regard. Would you know of anywhere online that more information regarding this would be available? I live in Australia.

    • #32762
      Joeb
      Participant

      I use same portable. A setting of five is like two in continuous flow. I use portable for short distances on flat surfaces. To go to the mail box (125 feet) I use portable tank size E on small wheels very easy also use it for my workouts three times per week. I have hand I IPF five years and cryogenic organizing pneumonia for ten. I hope this helps, my every day goal is too be as active as possible and always push forward. Blessings Joeb

    • #32763
      Joeb
      Participant

      Oh follow up I am 81.

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