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    • #13413
      Brittany Foster
      Keymaster

      When I first started off using oxygen almost 3 years ago, it was on an “as needed” basis. This was pretty difficult for me to determine when exactly I needed it because my oxygen was found to drop with the slightest exertion. When I was left to my own to use oxygen “as needed” I didn’t use it as much as I should. I would push the limits of deciding when it was necessary and when it wasn’t.

      Fast forward a year later, and I ended up needing it even with talking because my oxygen levels would drop quickly. I could be using the oxygen 24/7 and my doctors prefer me to have it on as much as possible. There are still some days where I feel like I am doing okay with it off and my oxygen stays in the high 80s (which is okay for my particular case).

      It has still been a work in progress for me to wear the oxygen almost all day. In my mind, I am still getting used to needing it “as needed” and “with activity”.

      Are you on oxygen as needed or are you on it 24/7? Did you find it difficult to transition to 24/7 oxygen if you were “as needed” prior to that? What helped you cope with this transition?

    • #13683
      Joni
      Participant

      Hi Brittany, I saw my family Dr today. My pulse ox was 86 percent. He has decided to also get me a portable tank that I can use when I go for my appointments. I feel a headache coming on and nausea when my sats drop. This is so new to me that I feel like I have to keep in touch with my symptoms. My walgreens portable pulse ox is helping. Much respect to you and other keymasters on the site with not only living with this daily, but also helping others on this site. Your post on living in the moment was beautiful.
      I see cardiology on the 12th of Sept and the pulm htn specialist in Denver on 8 Oct. I am looking forward to finding some answers, but I will not forget to be grateful and live in the moment.

      • #13693
        Brittany Foster
        Keymaster

        Joni,
        Thank you so much for being such a great contributor to the forums and for being involved in the discussions. I’m sorry that you had your sats drop to the 80s. I have the same symptoms when my levels start to get low. At first, I did a lot of monitoring with the pulse ox, now I know my body well enough to realize when I need it and I realize that it helps me WAY MORE to wear it. It’s amazing how quickly my headache will go away after using it. Keep a journal of how you’re feeling and the symptoms you’re getting and then check your o2 levels and write them down. I’m sure you will start to see some patterns but hopefully some of the symptoms will get a lot better with the oxygen usage. Please keep us updated on the appointments and I hope it goes well this week at cardiology.

    • #13685
      Melainie Garcia
      Participant

      Brittany, I did the “as needed” prescription for about 6 years. No one told me I could turn up the oxygen if I was exerting myself, no one really took the time to educate me about how to benefit from supplemental oxygen. I was just told to use it as needed at 2L. So I did. About 3 years in to using oxygen, I was told I could turn it up as 2L was not much, by the PH pulmonologist I was working with. He is no longer my doctor. I took too long to leave him behind.

      5 years ago, during a heart cath, I was asked by the medical staff, about 5-6 times during the test, “Are you on oxygen 24/7?” Each time I replied, “No.” I got the hint, my blood ox, on the table was falling below 85. So, I became a 24/7 wearer of oxygen. Most days I am not too bothered by it. Sure, I miss walking without a tank and without a cannula, but I rather using them than staying home all of the time.

      Sometimes I am very aware that there is ALWAYS something on my face. In the morning I move from my bi-pap to my cannula and the concentrator, I switch off to the tank and go to work, once there, I switch off to the concentrator in my classroom, any time I leave my classroom, I switch off to the tank. When it is time to go home, back to the tank, then once home, back to the concentrator, then at bedtime I attach the concentrator to the bi-pap, put on my mask and we are done for the day. It is almost like a constant game of tag. But it keeps me going.

      My concern now is that my tank does not support my oxygen needs when I am walking. I use 5L pulse at this time. I don’t know how to improve my situation. My team of doctors and I are discussing medicine changes and what-not.

      I looked into the information about the portable ventilator, if it is a possibility for me, what I saw in their study sounds promising. However, the battery life means I have to alter my life more than than I already have. Also the cannula with the pillows, I don’t think I am ready to have that on my face, but I want to move more and more easily. I feel often with each gain, I must sacrifice something.

      • #13692
        Brittany Foster
        Keymaster

        Hi Melainie,
        I know the feeling as if you are playing “tag” with your different medical devices during the day. It’s always a constant game of “what machine do I need now?” Sometimes I use my bipap during the day if I’m having a particularly difficult time breathing, especially if I have an upper respiratory illness.

        I also know what it’s like to just be given the oxygen without much education on the benefits of wearing it, the consequences of not wearing it, and how to wear it and adjust accordingly. I think doctors need to be more aware of just how much of an impact giving oxygen has on a patient. There should be more education around when to turn up the liter flow, which tank or concentrator would be best for the individual patient, and educate on the different options like pulse flow and continuous flow. I kind of had to teach myself all of that! We should definitely be advocates for that and make some “good” out of all this for others who are newly put on oxygen. Maybe I’ll start a manual called “You’ve been told you need oxygen, now what?”

        • #13697
          Melainie Garcia
          Participant

          Brittany, I think the first challenge you would have writing a book about oxygen use is the individualistic way that oxygen benefits each person. Each of us have our unique signature on PH. Many of us have complicating factors. None of us are easy. We are RARE!

          I have read that there are different ways of breathing for COPD and PH to help you catch your breath. If I remember correctly, DON’T DO THIS JUST ON MY HEARSAY, COPD response best with rapid breathing and PH with slow breathing with a moment of held breath. COPD is trying to rid itself of Carbon Dioxide and PH is trying to increase Oxygen.

          You might do better with this book if you fill it with flow charts. If this… to this. If this….do that.

          Good luck! I’ll buy the book when it is released! Smile!

          Melainie

        • #13700
          Brittany Foster
          Keymaster

          So true Melainie ! Everyone is different and not all people who need o2 have PH. Some are on oxygen for other reasons. Maybe it would be best to share my own experiences and if others can relate that’s awesome!

    • #13687
      Joni
      Participant

      Melainie, that is great that you are able to work as a teacher on oxygen. Was your workplace supportive? I don’t feel they will be that way for me, as a nurse.

      • #13690
        Brittany Foster
        Keymaster

        I was a teacher too and went right to my union representative and talked about accomodations for me. Workplaces have to be able to accomodate as much as they can and come up with some type of 504 plan (which is what I was familiar with using for my students too) for medical needs. Maybe it would be best to talk with a supervisor or a representative that can help you with all you are able to be accomodated for. I think your safety in the work place should be their number one priority and you DO NOT Want to push yourself. They should be able to work WITH YOU. Keep us updated on what they say and if you need any recommendations on different accomodations for oxygen users.

    • #13689
      Joni
      Participant

      I am wondering if they could put me in another department while my Drs try to figure out what is going on and if I would be protected through the disability act while on oxygen?

    • #13695
      Joni
      Participant

      Thanks, Brittany. I am a best learner by reading individual. When I found out that my pulmonary artery was enlarged, I went on amazon to buy some books. It is so odd, one book by a patient for patients and the rest all hardcore medical books. Other disease processes have so much literature out there, what is up with Pulmonary Hypertension??? This website and the PHA website are the only good places for practical AND medical info. I am thankful to have some place to post questions. You and Kathleen would be an awesome duo to write a book :). Between health issues and the real world, though, that would be a huge undertaking. Thanks again!

      • #13699
        Brittany Foster
        Keymaster

        @kathleen-sheffer we should take this on one day! Inspired by Joni’s encouragement right now.

        • #13712
          Kathleen Sheffer
          Participant

          @brittany-foster I’m in! I also have been meaning to compile a reading list from patient authors (I’ve read a few, but mostly from transplant recipients). @seagypzy which book did you find on Amazon written by a patient?

    • #13696
      Melainie Garcia
      Participant

      Joni, my work place has been supportive. I work in a special education environment, I would make a stink if they were not supportive. As long as I am doing my job, I should be allowed to continue to work. I just completed my 20th year there, so they have known me over a long period of time and have seen what I can do. If you are able to do your job, with or without reasonable accommodation, you should be allowed to so do. I think we would be covered under the ADA law, however the political environment that our country is currently in, may make some employers less likely to want to follow it. The law is the law.

      ADA, The Law: https://www.eeoc.gov/eeoc/history/ada25th/thelaw.cfm
      The ADA: Questions and Answers: https://www.eeoc.gov/eeoc/publications/adaqa1.cfm

      I am accommodated in some ways at work. First, my principal is understanding if I do not go to lunch with my students everyday. He understands that some days are harder than others. Also, I do not go on all of the field trips. The zoo was very difficult three years ago. I live at 4,300 feet altitude, I do not go on field trip above 5,000 feet altitude. It is just too difficult and I pay for it afterwards for a week. So, I take a sick day and a substitute goes in my place. (Our classes usually go on group field trips (3-4 teachers and their classes, so the sub isn’t alone with my class). My co-workers in general are always ready to help me as I need it. I try to find ways to lessen their loads in return for the help. It is a balancing act.

      I think you might have to have a good discussion with your doctor about your ability to continue work. Create a “can do”, “might can do” and “can’t do” list. Once you have information behind you, you can address things with your boss. Do not forget your friends in the Personnel office at your work. Personnel should be knowledgeable about your place in the ADA law.

      You might look for other opportunities to continue your chosen field that will allow you to maintain your energy. More and more medical offices are meeting patients on-line. Is that a possibility? In this day and age, we have ways to make things fit our needs, we just have to educate ourselves about what is available and advocate for our needs. Good luck, Joni.

      I think what will take me out of education will be brain fog. Just the other day, I misspelled a word and my students got all over me about it. One word is not a big deal, but just this last week, I could not remember how to spell business and about 4 other words. My aide had to help me out. I also have a knack for saying or signing words I do not mean to say, sometimes I realize my mistake and sometimes I don’t. The students love it. I am glad someone is enjoying my decline, ha!

    • #13702
      Joni
      Participant

      Thank you, Melainie, for the excellent aadvice. I could retire now but I never cconsidered it before this happened. I need to leave this altitude but maybe yhere is a way that I could do a less strenuous job. I work for the government, so a transfer is possible. I am not sure how flexible they would be about medical Ppointments. I will most certainly ask talk with my Dr about the can do/might can do/can’t do list. Narrowing things down will make my decision easier. Thanks again for the great advice.

    • #13703
      Joni
      Participant

      I look illiterate, but my phone doesn’t center the reply box. 🙂

      • #13713
        Kathleen Sheffer
        Participant

        Ha! Not even close to illiterate, @seagypzy. Thank you for working with our WordPress system.

    • #13718
      Joni
      Participant

      Hi @kathleen-sheffer I just saw one book, The Patient Survival Guide by Gail Boyer Hayes. There are some good youtube channels with people living with PH but not much in book form. I need help in deciding the best insurance company, dealing with insurance companies, working with PH, travel, emergency situations, diet, exercise,etc. That does not include oxygen and meds. I am a seeker not an a sorber :). There is a lot of info but I would love it in a book form (knowing that things evolve and change).

      • #13719
        Kathleen Sheffer
        Participant

        @seagypzy those are all important topics. I only have anecdotal advice for each. It’s helpful that The Patient Survival Guide was edited by a physician to balance the perspective. Have you read it yet? I’m thinking I should order a copy to see what’s in it. Amazon says it’s updated every year so I imagine it is the most useful book out there.

        • #13723
          Brittany Foster
          Keymaster

          Interested in reading something like that too! There’s so much patients are just “thrown into” . I had to be TAUGHT how to advocate for myself and had to be taught assertiveness when it comes to my body. That is SUCH a challenge for any patient I think. Having something to look at and read and relate to as a “survival guide” would have been so helpful.

    • #13735
      Joni
      Participant

      I ordered it and I am waiting for my copy. It just astounds me, as a nurse, that a patient can get this diagnosis and it takes 45 days to see the Pulmonary Specialist. I tried to be assertive but no go :(.
      There should be more practical books about pulmonary hypertension. If you read the comments on the different youtube sites talking about PH, there are many newly diagnosed patients that feel overwhelmed and in the need of education.

      • #13741
        Brittany Foster
        Keymaster

        You are so right Joni! Education needs to happen and there needs to be more out there for support. Hopefully more doctors offices will catch on to our forums and will also be able to direct patients here for support and understanding (not medical advice obviously) but to be in contact with others who will be able to “get” what they are going through.

    • #13743
      Ann Goddeyne
      Participant

      I am now on 6l at night and with any sort of movement/exercise. I had trouble walking with a portable concentrator on pulse. I switched to liquid oxygen and high flow canula and it made a huge difference. The portable bottles fill from a large tank. They only weigh a few pounds full and I can carry them in a backkpack. It took some calling around to find a provider for the liquid oxygen but it was worth it.

      • #13744
        Brittany Foster
        Keymaster

        Ann,
        I’m glad you found something that works well for you and with your lifestyle. Everyone’s needs are so different as far as what they can use for oxygen. My doctors told me right away that pulse flow would not work for me so I have had a hard time with concentrators not going up to the continuous flow that I need without it being too large of a unit ! I really like my tanks too and use mine in a backpack. Lately I have needed more oxygen and run out pretty quickly. I usually use the home filler system for the smaller ones but the larger ones last about 5 hours so I like to use them for events so I don’t have to keep switching them out. How long does the liquid oxygen last on that liter flow? Just curious !

    • #13745
      Jim Wharton
      Participant

      I use oxygen at night only

    • #13747
      Joni
      Participant

      I bought the Survival guide Book on Amazon but it was an early edition. I joined the Pulmonary Hypertension Association and bought the newest issue via download. I am 1/3 through I think it is helpful for a newbie, like me. It has info on oxygen and i am slowly making my way through to this chapter.

      • #13757
        Brittany Foster
        Keymaster

        Let me know how the oxygen chapter is and what things you wish were mentioned or what things they did a good job at talking about !

    • #13779
      Joni
      Participant

      I had an interesting first appointment with Cardiology. He was impressive and zeroed into some important points. He thought my sleep study, a year ago, was probably misdiagnosed. I should have been put on cpap and not just nocturnal oxygen. He also thought the altitude was a factor in my hypoxia. I need also to lose some weight. I found a lady that cooks healthy meals and I am paying her to cook for me. It is a treat and I am loving not having to cook. He also ordered another sleep study and an echo next week. My sats were 00 in his office. My portable o2 came today. Green tanks filled by an attachment to my home large invocare compressor. The oxygen doesn’t last long. Help!!! Should I get a script and buy my own portable machine?

      • #13787
        Brittany Foster
        Keymaster

        Hi Joni,
        I’m glad your doctor was able to look back at that sleep study. Is he ordering a cpap for you now or do you have to complete another sleep study first? As far as the oxygen goes, the tanks do run out fast. If you are using tanks I would suggest asking your doctor for a home concentrator that you can use while walking around the house and an extension cannula so you can make the tubing longer. I would also ask them for a home filler system so you can fill tanks and will always have a backup. I use tanks and have a concentrator and home fill system ordered by my doctor to the oxygen company. Hope this helps!

    • #13780
      Joni
      Participant

      Lol..sats were 90..not 00

    • #13795
      Judie Hudak Saucier
      Participant

      I use 8 liters continuous flow and 10 liters as needed when walking or showering. I am usually at 10 liters when active outside and walking and use E tanks.

    • #13809
      Robin Frankel
      Participant

      Brittany, my experience with O2 has been similar: zero instruction, the portable is too loud and heavy to use. Does anyone else work for themselves and feel oxygen is a no-go at work? I have had a private practice of psychotherapy for 37 years. I’m 62 and don’t want to retire but go without 02 at work because I might as well bring a hand grenade and blow up my practice, that’s how fast patients would leave. Even friends say, oh, my problems are nothing next to yours, you don’t need to hear them. And that’s without a cannula on! I’ve had fourteen eye surgeries for glaucoma and each time I return with a swollen red eye it makes some patients so uncomfortable they avoid looking at me, I can’t imagine oxygen. I really should be the backdrop, not the foreground. Soon I won’t be able to skip it though.

      • #13810
        Ally
        Member

        Hi Robin, thanks for responding. My name is Ally and I’m one of the new forum moderators. Brittany will be away for the next few weeks so I’m filling in. I’m sorry to hear your patients aren’t as open-minded or receptive to you using supplemental oxygen. Have you ever tried talking to them about it and explaining your diagnosis? Have you considered delivering psychotherapy remotely (via Skype or phone) as a way to get around this challenge? Curious to hear more from you on this. Thanks again for being part of our community!

      • #13823
        Kathleen Sheffer
        Participant

        Robin, I totally understand what you are saying. It’s tough to have a visible disability in a professional setting focused on client interaction. It’s different from asking an employer to make reasonable accommodations.

        I am a freelance photographer and when my PH progressed to the point that I needed oxygen 24/7, I had to cart my concentrator around with me on photoshoots. I ended up hiring an assistant to help carry my photography equipment. I let my clients know ahead of time about the situation, but I tried not to make a big deal out of it. I think that might be a good strategy for you.

        Perhaps you can send out an email to your clients saying that your doctor has prescribed supplemental oxygen and you will be wearing a cannula at future sessions, but that it will not interfere with the visit. My guess is your clients have already picked up on you being a bit short of breath when speaking and will be glad to see you taking care of your health. If you address it straight on and let them ask questions they won’t feel uncomfortable or unsure how to react. You can tell them how to react – which is, to ignore it and not worry about you.

        As far as the noise, you might try getting extension tubing so you can place the concentrator in the hall outside your office or at least across the room from you. Liquid oxygen is a pain to get delivered, but is silent so that might be an option. At the very least, you should have oxygen with you in the office and turn it on between sessions, because that will make you feel marginally better.


        @rocko-robin
        let me know if any of these suggestions are helpful. I’d love to help you make this transition smoothly, and I believe it’s possible.

    • #13824
      Donna
      Participant

      I started out on oxygen as needed, but kept having to increase it with exertion, and now I’m on it 24/7 and still need to keep upping it. Just went up to 4L most of the time, which will keep me above 90 with exertion and 94-95 at rest. My POC only goes up to a setting of 5, which is not the exact equivalent of liters per minute. When I run the POC on 4, my batteries drain quickly and the tank is so loud and hot…

      Starting to consider alternatives if I need to keep going up on oxygen, especially with exertion. I do feel better on 4L continuous, but that’s not an option with my POC. I am hoping that starting some new meds will help with this!

    • #22494
      Colleen Steele
      Keymaster

      @sarah thank you for letting us know. I think it was possibly a typo. I removed the link from the comment.

    • #22507
      Nancy McSweeney
      Participant

      Yes, I am on oxygen 24/7 mostly on 3L, but sometimes need 5 with exertion. I use a portable with a shoulder strap when going out which is usually good for 3 to 4 hours. I am retired so I don’t have to deal with workplace issues.

    • #22518
      Denise K Thompson
      Participant

      I use a concentrator at night or when napping at 2L. My o2 stays in mid 90’s while I’m moving (for me moving is exertion), because I over breath or hyperventilate with my shortness of breath. Flights will require a different solution, I was @ 82 last Sept., when I had a 1.5 hr flight.

    • #22542
      Jimi Mcintosh
      Participant

      I am 3.5 liters of oxygen at nite with my cpap, told to use it whenever I am at home and get winded. I feel
      That I could possibly benefit from using oxygen when working or traveling. I joke about being limited to the 100 ft of tubing on big concentrator, which is upstairs and everything I use is downstairs. My vanity gets in the way whenever, I feel that I way be progressing to 24×7 use. Stairs and inclines are my biggest hurdle

    • #22580
      Jo Ann white
      Participant

      I am on 5l 24/7 on a concentrator and 6l at night and outside on pulse on d tanks with activity. Agree that first time oxygen users (me in June despite nearly 5 years of breathing difficulties attributed to a raised diaphragm) get very little guidance. Best for me was a 24 session pulmonary rehab program suggested by new pulmonologist…and figuring out things for myself. Main experiments now are with medications. Have had to stop 3 of 5 so far due to negative side effects but so far am maintaining. The poc I initially received was useless and had to pay for tanks myself until I returned it as insurance only pays for two delivery systems. All very time consuming and frustrating. My oxygen delivery person is far more knowledgeable and helpful than the company’s office staff or therapists!!!

    • #22596
      Colleen Steele
      Keymaster

      Jo Ann, living with PH is hard enough but struggling for advice and support from the people and places that are supposed to help must be so frustrating. You are to be commended for not giving up and advocating for yourself more than you should have had to. I know the oxygen delivery people can be helpful but the office and therapists should be as well.

    • #22599
      Brittany Foster
      Keymaster

      Jo Ann,
      Unfortunately sometimes we have to learn the hard way about those that have the most knowledge about certain things. Sometimes I feel like the doctors may not know all the things a respiratory therapist or physical therapist are able to tell you. It’s best to get the information from those that you trust to have the most knowledge especially when it comes to oxygen use. It’s unfortunate that it can be so difficult to get all we need and the different systems.

    • #22602
      Cynthia
      Participant

      I’m following this, because oxygen delivery has been my biggest hurdle. Some mention “raised diaphram”, what is that and what are the symptoms. Anyone have stomach bloating related to food and breathing issues?

    • #22615
      Brittany Foster
      Keymaster

      @cynthia-winston I have trouble with bloating due to digestive issues. My GI doctor said that sometimes when the diaphram doesn’t move as well or when the lungs are restricted it doesn’t create enough space in the stomach and it can get bloated like that. But that is part of my particular condition. Do you see a GI specialist? IF you are seeing a PH doctor maybe they can help you find a specialist too. I also have gastroparesis (Slow emptying of the stomach) and that causes a lot of gas and fluid retention and is super painful. Do you have pain with the bloating or notice any patterns when you get bloating like what you ate etc? Or is it random? Do you notice breathing changes WITH the bloating?

    • #22622
      Beth
      Participant

      I’m going to be starting a new job soon, and will work around seniors/dementia/Alzheimer’s facility. I was diagnosed with severe PH in June 2019. I am to use 2 liters oxygen. At my job interview I was not wearing oxygen. I was hired, and I’ve been seriously considering not wearing my oxygen at work – or I may look like someone that lives at the facility. I had gotten a portable oxygen concentrator in case I found a job. Even though an employer cannot discriminate against me for using oxygen, it does happen. I believe if I don’t use oxygen at work, but consciously take deeper breaths, I can keep my oxygen above 85? I need the money.

    • #22631
      Colleen Steele
      Keymaster

      Beth, welcome! It’s nice to see you posting right away.

      I sympathize with your oxygen dilemma and how much you need the job. I do suggest that you discuss this with your doctor. Ask him if there are consequences to adjusting your oxygen use to accommodate your job. My son was told not using his oxygen properly would put more strain on his lungs and make him more symptomatic. Everyone is different though and hopefully your plan will be sufficient. Keep us updated. I respect the work that you do. I can imagine this job has it’s heartbreak and challenges.

    • #22632
      Beth
      Participant

      Thanks for ur message Colleen. I asked nurse about not using oxygen while at work like 9 hrs a day – of course, doctor would not give support to my plan. I plan to do first day of work without oxygen, try to consciously breathe better, as I’ve always been a shallow breather. – I see how it goes and decide if I should tell employer about oxygen use. This job will be new to me, less stress than working for attorneys. I need to bring in income. I originally just wanted to be a receptionist, and may ask about that, as it would be easier to use oxygen I believe. Everyone take care.

    • #22662
      Dennis smith
      Participant

      Brittany, have been on oxygen last four years 24/7. 8 to ten liters with excercise 4 at rest . In end stage now , so at times need to go to 15 liters . At times find it hard to regulate , 4 liters allows me to sleep , Do go to gym everday and try and pace self to what the body is calling for .

    • #22676
      Dennis smith
      Participant

      Thanks Brittany, maybe can’t change it but might be able to make the closing moments more comfortable for all. Slow it down a bit

    • #22678
      Brittany Foster
      Keymaster

      @steelcity so true and a much needed reminder to take things slow and actually stop to enjoy things in life. I feel like I have been so used to living in fast forward and always looking towards the next thing instead of just taking time to appreciate the here and now. It’s hard to maintain this mindset but on really hard days I have to be reminded of that. Thank you, your advice came at the right time.

    • #22684
      Dennis smith
      Participant

      Brittany thanks. You sure have been through more than your fair share. Your words are uplifting and thoroughly appreciate the inspiration

    • #22686
      Brittany Foster
      Keymaster

      @steelcity Thank you so much! I really appreciate your kindness. I hope that you are having a good day so far. As GOOD as it can be !

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