This topic contains 27 replies, has 7 voices, and was last updated by  Steve Dragoo 5 months, 2 weeks ago.

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  • #17893
     Carol Gerstein 
    Participant

    right now I have been on 9-10 LP oxygen with activity.  My portable goes to 9 so I was still able to be active. I start pulmonary rehab Monday.  I have been home for two weeks from hospital with mild case of pneumonia.  So my question is if I have to go up to 15 with activity how do I still dhave my independence and normalcy.  I have been inactive for about 4-5 months when my husband was on hospice. Hopefully rebab we give me some stamina

  • #17895
     Mark Koziol 
    Keymaster

    Sorry to hear about your husband. Are you currently on pulse or continuous flow? Also, are you on liquid oxygen? Hopefully your pulm rehab facility will be able to meet your needs as they should have your current O2 prescription. I do feel the rehab will help you immensely. Please update us on your status.

  • #17896
     Carol Gerstein 
    Participant

    I’m on both pulse and continuous, continuous at night and durning Thea’s when I use my home machine.  When I go out I use my pulse. We don’t have liquid oxygen at the ompany I use. How long does rehab usually show something.

    does Charlene ever answer some of these posts, because I thought I read that she was on 15

  • #17910
     Charlene Marshall 
    Keymaster

    Hello @cegerst1938 (Carol),

    Thank you so much for writing, although so sorry to hear about your husband dealing with hospice and your increasing oxygen needs. What a tough time for both of you!

    I often answer posts, and usually much faster than this weekend as I needed some time “offline” to decompress. I was having hand and neck pain from my posture while on the computer, and while recovering still from a concussion, I sometimes get really bad headaches from overuse of screen time, which was happening to me last week. I typically am not this delayed in responding, and apologize about that!

    Your doctor or PT administering the pulmonary rehab program on Monday will be best to assess your oxygen needs depending on your level of physical activity and disease progression. I really found pulmonary rehab helpful for me, and hope you do too!

    If you need an increase in 02 that exceeds your oxygen device (ie. portable concentrator or tanks) you will probably be supplied one while in the gym, and unlikely to do the same level of exercise/activity at home, especially if your machine doesn’t reach the litres per minute you need to exercise safely. If the pulmonary rehab program gives you some extra stamina, there might be more you can do at home but as directed by your physician to ensure you are safe. Does this help? I am not on 15LPM of oxygen, my max needs right now are 5 and that is when I am  being physically active, not sitting still. I can occasionally even function without oxygen, all depends on the day but not usually for very long.

    Let me know if I can be of more help Carol. Also, I’ll be curious to hear how pulmonary rehab goes for you on Monday, they will be able to answer more questions for you too. Keep us posted.

    Charlene.

  • #17917
     Carol Gerstein 
    Participant

    Thank you for answering.  I hope I’m not expecting to much from rehab, just exercising sounds good and I hate to exercise.  I did a stupid thing thing this week and mixed up two meds that I have been taking for at least a year.  I am lowering my prednisone to 15 so I cut my 10s in half, I also take a mild antidepressant, both are white round.  After I cut several antidepressants up and put them in my container I realized what I did but left the whole one in there……..so I was taking 5mg prednisone and 20 antidepressants, so I was short of breath nut happy!!
    Charlene, i have you mixed up with someone else who writes a lot, maybe you know.  She was a marriage counselor and she is the one on 15 with activity.

  • #17931
     Charlene Marshall 
    Keymaster

    Hi Carol,

    Thanks so much for your reply, and I am happy you found the site!

    The exercise is hard for the pulmonary rehab program, but it really made me feel better in the end, stronger even. It also taught me a lot about my breathing and how to learn when my body was doing okay with the exercises, and when I should stop/let it rest. It was as mentally good for me as it was physically! Do let us know how it goes when you can 🙂

    I do know who you’re referring to I think Carol, I believe it my co-columnist Kim Frederickson. She writes for PF News and yes, I believe she did a column about her litres per minute of oxygen. Good memory! Kim is actually awaiting transplant right now at UCSF. She is very high on the list, and awaiting the perfect pair. Keep your fingers crossed for her!

    Cheers,
    Charlene.

  • #17932
     Peter Goodwin 
    Participant

    Excellent pulmonary rehabilitation video on YouTube. Not too strenuous. Just do as much as you are able, when you like, as often as you like.  https://www.youtube.com/watch?v=nwxy9FLBMjk

    • #17942
       Terry Moriarty 
      Participant

      Thanks, Peter,

      That is a good rehab video.

  • #17938
     Charlene Marshall 
    Keymaster

    Hi Peter,

    Thank you so much for sharing this excellent resource with all of us on the PF News forums. A great reminder about the benefits of pulmonary rehabilitation being tailored to/for our abilities. I’m sure other will find it very informative as well, thanks again for thinking about sharing it with our forums community.

    Charlene.

  • #17941
     Terry Moriarty 
    Participant

    Hi Carol,

    What brand of portable oxygen concentrator are you using? I didn’t know there were any that went to 5 liters/minute continuous. I use an Inogen One G2 and it only goes to pulse rate 6, which is equivalent to about 3.5 lpm. I now need 6 lpm on activity, so my portable is insufficient for my needs.

    So I’d like to know about your portable.

    Kim Fredrickson uses liquid oxygen. I have to use tanks now when I go out. My provider doesn’t provide liquid oxygen.

    Good luck and keep us posted with your progress with rehab.

  • #17943
     Carol Gerstein 
    Participant

    I use a sequel eclipse 5 and have used a sequel equinox, both go to 9 pulse 192 mL. About 18ibs on its own small cart, has ac, dc and battery

    • #17944
       Terry Moriarty 
      Participant

      9 pulse is about 5.5 lpm. That’s good. But isn’t pulling around 18 lbs. hard? How many hours do you get on a battery charge? Thanks

  • #17945
     Carol Gerstein 
    Participant

    It  reads 192 mL, 5 reads 80 mL.

    Pits a little heavy to put in car but I have gotten use to it.  Depending on what number I’m on the battery lasts 2-4 hours but almost always near an outlet.

    • #17946
       Charlene Marshall 
      Keymaster

      Hi Carol,

      Thanks so much for providing @tmoriarty and many of us with this information  – I know folks are always curious about the portable oxygen concentrators out there and what their LPM pulse and continuous capabilities are. I’m sure this will be helpful for others too, thanks for sharing! I would imagine 18lbs is heavy to lug around, but the cart probably makes it a bit easier. I thought mine at 10lbs (or close to that) was heavy… I have the Respironics SimplyGo machine and really like it, with the exception of the weight. Glad you’re making the eclipse work well for you 🙂

      Thanks again for sharing,
      Charlene.

  • #17974
     Steve Dragoo 
    Participant

    @cegerst1938

    Hi Carol – several months ago I was very thankful to start pulmonary PT, it concluded late Nov.  It helped sustain O2 levels some and started me researching other things that could synergistically add to the PT.  About 6 weeks ago I did a 2nd 6-minute walk test and they took back my portable O2 – didn’t need it.

    What I believe contributed to the goo 6-minute walk test:

    pulmonary PT

    continuing exercise at a local gym when time allows (want 3x per wk – soon I hope)

    diet/water/rest and autophagy (random 24-hour fasting – can do a green tea w turmeric in the afternoon)

    warm water with fresh squeezed lemon/lime first thing in the morning – many benefits

    serrapeptase, astragalus, B complex

    Class IV laser treatment

    When I go to the gym my O2 stays above 95 and hits 99 sometimes the next day. This alone seems to help sustain O2 slightly higher for at least 24 hours.  If you have any questions, please let me know and share your insights too.

    Take care – Steve

  • #17976
     nickhoor 
    Participant

    hello my friend Steve!

    very nice to hear about your o2….

    your o2 is in 95% or 98% without help?(tanks)

    if yes…perfect!very nice!if no…sorry,I misunderstand…

    if yes…activity helps so much?

  • #17994
     Steve Dragoo 
    Participant

    @nickhoor

    Hi Nick,

    Yes, that’s correct, I have no portable O2 now. Didn’t really use it anyway but I almost did a few times months ago.  I am on 2L O2 at night only.

    So about 3 months ago my O2 readings were 93 – 96 (I have an oximeter), now it is almost always above 95 and can go to 99 but that is rare, it is now usually 95 – 97. I believe there are a number of positive factors that have contributed and I am sure if I lost the weight I need to that would be all the better.

    Hope that helps you… – Steve

  • #18025
     Charlene Marshall 
    Keymaster

    You’re just wonderful @steve-dragoo for being willing to share so much information with our forum members. Thanks for always being willing to help my friend 🙂
    Charlene.

  • #18028
     Steve Dragoo 
    Participant

    @charlene-marshall

    Awe shucks – now I’m all embarrassed…

  • #18029
     Charlene Marshall 
    Keymaster

    @steve-dragoo … oops didn’t mean to embarrass you! 🙂
    I’ve missed you on the forums, glad you’re back and hope your computer is giving you less trouble now. A rainy day here, just about to make myself another coffee and continue the forum replies. Wish we lived closer to connect in person. Chat with you soon.
    Charlene.

  • #18031
     Steve Dragoo 
    Participant

    @charlene-marshall

    Hi – I was kidding.  Just Thursday I was telling someone I have a pretty thick skin after 36 years in sales and marketing.  To demonstrate how thick it really is I told the guy that after a nuclear war only three things would be left: cockroaches, my skin and the USA ever-growing debt.  – Believe it! Ha.

    Peace… – Steve

  • #18032
     Steve Dragoo 
    Participant

    @charlene-marshall

    Missed your thought about the laptop. It is still giving me problems so if it crashes again, I will ask Dell to replace it.  Yes, it would be good if you lived farther south, hahaha because the transporter is broken.

    Still working on rearranging the flight… – Steve

  • #18035
     Charlene Marshall 
    Keymaster

    LOL oh @steve-dragoo, that gave me a chuckle this morning… thanks for that 🙂
    Am enjoying my nice cup of lime water this morning as I respond to you. I am not enjoying the fresh SNOW that fell here last night. I can’t believe it, I had sandals on this past Friday … like two days ago, and it is supposed to be +10 here this week. Darn weather…hope it is nicer where you are!
    Enjoy your Sunday,
    Charlene.

  • #18036
     Steve Dragoo 
    Participant

    @charlene-marshall

    Yes, I’m sorry to report it was sunny and 22 yesterday but if it helps you any, it is raining here this morning and only 12 outside at the moment…

    Just to mention it there are 5 significant things I do that is helping my IPF. Who knows they may even be synergistic. Lemon/lime and waiting 20 minutes before I drink/eat is one of the best, it just resets the body in so many different ways.

    Restful day when you can Charlene…

  • #18038
     Carol Gerstein 
    Participant

    Steve, tell me again about your lemon lime routine. I don’t think I could take all the other stuff

  • #18041
     Steve Dragoo 
    Participant

    Carol – just fresh squeeze lemon/lime in heated water and drink. You can add a little real honey. I make 2 big glasses each morning ergo lemon and lime. Wait at least 20 minutes before consuming anything else… Steve

    • #18043
       Steve Dragoo 
      Participant

      Carol – getting back to you so I can answer any other questions you might have, was a little busy this morning when I first answered you.  Thanks – Steve

  • #18042
     Charlene Marshall 
    Keymaster

    I’ve really come to enjoy this @cegerst1938 (Carol)! Enjoying it slowly is a nice way to start my morning, kind of forces me to slow down and I’ve really grown to enjoy the water at room temperature, which is much better than drinking it really cold which is what I always used to do in the morning. A habit I’m happy to have adopted from Steve 🙂

  • #18097
     nickhoor 
    Participant

    Hello Steve! ( @steve-dragoo )

    I almost jealus about the O2%….Ofcourse I wish the best for you!

    Please tell me,when you first diagnosed?How old are you?

    I’m sure you don’t believe about internet bullshits(3-5 years life expectancy after diagnose)

    You know about your FVC in your spirometry?

    Sorry to ask…I always like to know more & more info about IPF,you understand me

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