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    • #12975
      Brittany Foster
      Keymaster

      During my vacation on a cruise, I brought 27 (YES 27) oxygen tanks with me to last me for my 6 day trip. I thought this would be enough, but I used the tanks sparingly and not nearly as high as my recommended liter flow of 4 liters with exertion. My mom had mentioned using my POC before the trip, but the problem with the POC that I have is that it only goes up to 2 liters on continuous flow and I am unable to use pulse flow due to a breathing condition that I have that is called central hypoventilation syndrome. Essentially, my brain doesn’t tell my body to breathe and when I do breathe it is simply too shallow, which you could understand why pulse flow wouldn’t be useful in this situation.

      I wish they had a POC that went up to 4 liters and lasted on continuous flow for more than an hour ! This would make my life a lot easier. I love having the ability to use my small oxygen tanks and carry a backpack with it, but to be honest, carrying around an extra 5 pounds on my back has left me with some lower back pain and hip pain. It is getting to the point where I really don’t even want to use it because it is too much to take around on my back. I end up having a hard time getting comfortable with back pain at night. I could always wheel the tanks, but have a fear that will draw even more attention to me and just would be more of a hassle if I can’t have both arms free to do things.

      I’m grateful for the tanks because I am physically able to walk and get around pretty quickly. They allow me to keep up with the pace of my life and allow me to have free movement.

      I am wondering if others out there prefer the tanks to a Portable concentrator? I would say I prefer my tanks because the concentrators just don’t have the exact settings that I would need in order to be getting the benefit of wearing oxygen.

      Do you use oxygen tanks? What benefit have they given you? What are the downfalls you have experienced? Do you use a POC and are you able to use pulse flow? If you are on a continuous flow with POC, how long does it last? What are the benefits of using a POC? What are any downfalls?

    • #12982
      rosemary martin
      Participant

      not quite on topic but an offshoot….My pulmonary doctor wants me to get NIOV. Have no idea how it will work..it is said to enhance oxygen use. Anyone use i?

      • #12987
        Brittany Foster
        Keymaster

        Hey! Could you explain more what NIOV is and how it works for PH patients ? I’ve never heard of it so am very curious ! If you want, send a link to an article with this info and I’d love to do some reading on it.

      • #13075
        Joyce Sandberg
        Participant

        Just returned from an 8 day cruise. Brought 4 small tanks along; did not use them. Instead, my Sequal Eclipse 5 auto sat POC did the trick. I purchased an extra battery along with a desk charger. That gave me a total of 3 batteries which I rotated. During the day I used my electric go go scooter and I placed a second battery in the basket as a back up. The Sequal goes to 3 continuous flow; That works for me while sleeping I am ordered to use 4 ltrs continuous; my Sequal at 3 ltrs. keeps me saturated the same as the plug in does at 4 ltrs. While seated I need 2 ltrs.;I found that I could use pulse at 1.5 on the sequal to match. Never did I have to use the 4 small tanks.
        The Sequal also recharges in the car as well as when it is plugged in electrically.
        I brought along a 25′ pack of tubing to move around in the cabin and bathroom. I switched it to 7′ when I left the cabin.
        I purchased my Sequal from a woman on Craigslist who lost her husband. Although it had 1 1/2 year warranty remaining; I luckily did not need it. The unit runs great! The price was right too $750 gave me the unit, travel bag and 2 batteries, home charger, auto charger and roll about. As for the 3rd battery I purchased that new and researched until I found the lowest price of $300 along with a low and new priced desk charger another $165. The best investment I made.
        When I visit my specialty pulmo guy at Cleveland Clinic 1 hour and 3/4 from my house I plug it in my car and we spend the night at the Hard Rock Hotel and then I plug it in electrically. We try to mix pleasure along with my 3 month visit to the pulmo.
        When I go out alone I do not use my Sequal as it is too heavy for me. At those times I use a small tank with a back-up in the car. I use it on 6 pulse until I level out and can lower it to 3 or 4 pulse.

        • #13085
          Brittany Foster
          Keymaster

          Hi Joyce,
          Thanks for the response. It seemed like you were able to have a good time on your trip and I love hearing the positives about those with PH and oxygen going on vacation. It lets others know that it can be possible! I’m glad you were able to get the POC that you did and that you purchased the extra batteries for it. A lot of problems people seem to run into is that if you have the tanks (like me ) insurance won’t cover a POC too and sometimes it can be hard for people to come up with the money for it. It’s great that you were able to find a good one and that it worked out for you 🙂 Keep on living life and enjoying it 🙂 glad to connect with you here!

        • #14714
          Judie
          Participant

          I use a concentrater at home at night at 2 liters. I purchased an inogen machine which I mainly use when I walk on my treadmill. If I walk around my house instead I am still ok without O2. It has come in handy with air travel as I need it between gates and at times exiting the plane on an uphill ramp.
          I have to call the company I bought the indogen from bc it only comes on if I am breathing which is not the most beneficial for me. I have to think breathe all of the time and when we traveled for a week (for our business) I was waking up with my arm tingling which is not good. I breathe very shallowly so I think it doesn’t sense my breath.
          On another note I got my pneumonia vaccine last Thursday and had a delayed reaction on Monday morning with a fever and fluid swimming in my lungs….it really scared me, I am a nurse and knew this wasn’t good. It was about 90 minutes of terror before things calmed down. I also have systemic mast cell disease so going to the ER can often do more harm then good for me with all the intrusions of blood work, IV fluids, bright lights etc. so the thought of the hospital causes anxiety and fear. I stopped my Letaris thinking it was a side effect and saw my doctor on Tuesday. My pulse ox was 91 which isn’t too bad but I was sitting still so I sensed he was thinking I may need O2 during the day but did not push it. I will use it if needed, I collapsed walking on a hilly street in Pittsburg earlier in the month, I was just learning to use the inogen and did not bring it with me….now it goes everywhere with me. With the small 3-4 hour battery it’s a bit over 5 lbs the larger battery I think is about 8lbs.
          I have learned the reality of this disease with that collapse and now have oxygen with me.
          Brittany I understand your mourning of hockey. I was not that athletic but I have exercised for the last 44 years almost daily, I am now 60. I have to find routines I can handle, so far it is just getting my steps in. I too have a vanity issue I must get over. My gym has an excellent yoga instructor and with my oxygen I would be just fine. For now I will start with yoga on my iPad that I can do at home. I will also return to my body pump which is very routine with mechanical type planned movements with a bar bell. It’s an excellent series and I can do that too with O2 at home.
          FYI in the US you can use care credit with no interest for oxygen machines. I believe they give you up to 3 years to pay it off.
          Thanks for reading my off topic mostly post.
          Vacations, it is nice to hear of successful journeys.
          Judie

        • #14728
          Brittany Foster
          Keymaster

          Judie,
          It certainly is hard when we are not able to exercise the way that we used to. I mourned the athletic side of me for awhile. I’ve realized though that I’ve never lost the athlete title, I just can’t participate it in the way that I would like to. You’re doing all the right things by figuring out what types of exercise works for you. I like doing exercises in the comfort of my own home, I have to have ventilation support sometimes so taking a ventilator machine or having to use a higher flow oxygen and being afraid of it running out at the gym just isnt worth the hassle.

          I know what you mean by some of the portable machines like the inogen only working when you take a breath in. I am a very shallow breather and actually have a condition called central hypoventilation syndrome where I either stopped breathing or don’t breathe in deep enough to trigger that breath from machines like that. This is why oxygen tanks are better for me because they are continuous flow. I have a home filler system for mine so I always have some charged and ready! Do you use a home filler too?

      • #20705
        ronald cole
        Participant

        Dear Brittney,
        They just came out with a PORTABLE Oxgeonater that you can buy, and I think for you possible you could get insurance to pay if you work with the company and your doctor. There are three types, all with levels up to 4 forms 1-4. It is a shoulder unit, about 3 lbs, and as you know it makes oxygen out of the air. It comes in a semi-attractive carrying case, and I studied it. It seems you would get a ton of usage out of this new machine. Google it, go to the website and study this product in detail. If it were me, I would try to negotiate with the seller on a reduced price and let them bill you in installments without interest, and I would say 36-48 months then get a new model. I hope this helps.

        Your friend, Ron Cole

        • #20706
          ronald cole
          Participant

          Brittney, they are a new company and with your situation, you might get one for free as a national spokesman for the product. ( I am always thinking)

          Ron Cole

        • #20724
          Brittany Foster
          Keymaster

          Hi Ron,
          Thank you so much for sharing that information about the oxygen portable concentrator with me. I currently use one now that I really like because it is so easy to travel with , and like the ones that you are talking about it goes up to 4 liters and I have it in a backpack that is like a net material because the air needs to be able to circulate. I learned that the hard way when it began to overheat when I had it in a closed backpack. But it is called the inogen machine. They came out with a pretty new design recently too. I ended up doing a fundraiser for it before my last surgery and raised enough money to get one of the newer models. I was so fortunate to have friends and family who donated to me to be able to get this product. It makes using oxygen a lot easier.

    • #12985
      Constance
      Participant

      I just went on vacation and went by plane, in order to fly I had to use a POC, one is not allowed to fly with tanks, the company I use for my oxygen is awesome, they helped me get a POC for travel and arranged for me to use a concentrator and tanks while at my sister’s. She is in a small city outside of Tampa.

      I personally prefer the tanks with my back pack as it allows me the freedom of the use of my hands. My level is 5 liters on exertion and 3 – 4 when at rest. The POC only lasted for a period of 2 hours on each battery, (just long enough for the flight and airport time). If you do fly make sure the POC brand you get is TSA approved.

      Upon return to my home, the POC was returned and I am back on my home concentrator and tanks. Did you know you can get a cylinder back pack on Amazon for 25.00? It is padded and has awesome straps. I love mine. It accommodates the 3 different sizes of tanks we oxygen users will need.

      I hope this helps folks with questions if you have any other questions I would be thrilled to answer them.

      • #12988
        Brittany Foster
        Keymaster

        Hi Constance,
        Thank you for all this great information. I have had experience flying with a POC too and would recommend askinf for as much batteries as you need. Was the PoC one of the ones you pulled? I also love the comfort of being able to use the backpack and thanks for letting us know where we could find ones for the tanks. A regular backpack causes them to flop around so its better to get one fitted to the size of the tank. Thanks again!

        • #14715
          Judie
          Participant

          Hi Constance,
          What is a POC? I live on the beach 40 minutes from Tampa airport.
          Glad you had a good trip Did you use O2 on the plane.? I fly mostly delta they didn’t want to label my O2 being I didn’t use it on board. I wasn’t particularly comfortable with this bc what if I had needed to use it.
          One time they tagged it medical device but since that time they don’t seem to want to bother with it.
          Judie

        • #14727
          Brittany Foster
          Keymaster

          Hi Judie,
          A POC is a portable oxygen concentrator. Most oxygen companies have them for rent. Think of it as a smaller version of the concentrator for your oxygen at home. They do not allow oxygen tanks on an airplane so you would need to contact the airline and ask for a list of approved oxygen concentrator and then ask your physician to write an order for one to give to your oxygen company. I believe they charge for this though by the week that you are using it for. You have to have enough battery life for the whole plane ride plus half the flight time just in case one runs out. The oxygen company you have also might be able to deliver tanks once you land if you plan on flying within the US. Sometimes they work with other oxygen companies if you prefer oxygen tanks when landing.

    • #12994
      Constance
      Participant

      Hi Brittany,

      I was so pleased to get your acknowledgement of the comments I wrote. The POC I used was The OxyGo the only downside was that I could only get 2 batteries and that was just barely enough. It was the one with the shoulder strap.

      • #12995
        Brittany Foster
        Keymaster

        Thank you for the response Constance. I’ll definitely look into that one for the next time I fly! Was it small to fit in a shoulder strap

    • #12999
      Constance
      Participant

      The one I had it’s own case with a strap. Was an oxygo

    • #13000

      I hadn’t heard of NIOV either, so I did a search. This was the best article I found.
      http://www.rtmagazine.com/2014/01/increasing-exercise-tolerance-in-copd-patients-with-ambulatory-ventilation/
      You’d have to check with your doctor to see if this would work for you, especially with your breathing condition, but it’s worth asking about.

      • #13007
        Brittany Foster
        Keymaster

        I use my bipap at night and rest and thats the only time my breathing seemss like it is better for me. I’d love to share this! Wonder if there woukd be a way to use oxygen with it too!? I’ll have to show them this.

    • #13003
      rosemary martin
      Participant

      Brittany – i am a WHO 3 – and there isnt any medicine specifically for PH for my group. Cardio feels i have to stay above 90 on oximeter..Pulmonary thinks this will help. best i can say at this point til i get all the facts …it is a non invasive ventilator. similar i guess to the trilogy. communitysurgical.com/ventilation

      • #13008
        Brittany Foster
        Keymaster

        Hi Rosemary, i use bipap at night and at rest so I’m sure it might be similar. Using thr bipap is the only time I feel somewhat normal and always thought “if only they could make a portable one!” Such great info

    • #13005
      rosemary martin
      Participant

      btw medicare has now approved it…but i have to go thru rigid testing to qualify.

      • #13009
        Brittany Foster
        Keymaster

        Let us know how you could qualify and testing you’d have to go through. This is great these advances !

        • #13200
          rosemary martin
          Participant

          yesterday did the testing at the hospital…chest xray – long PFT – blood gas – then went to meet the people from NUIVU. will take a few days to see if i qualify – however, i did a trial with the machine…makes no sense to me – the higher she put it the lower my numbers got????? the item that looks like a radio will go on any oxy concentrator. this will fill tanks, etc. wondering if i could shoulder a 6 lb tank..the smaller device is what will connect to the tanks and give you more oxy..if i qualify they will give me the radio device – no tanks on this trial – to see if connected to concentrator if it boosts me. can’t immagine what my PH specialist would say if i reach only 80 on pulse oxy..i would think it could be very beneficial to those who run around with tanks..

          waiting to see what my pulmonary doc has to say…he wasn’t there yesterday for this meeting

          will keep you informed

        • #13201
          Brittany Foster
          Keymaster

          Hi Rosemary,
          I’m glad you are getting to the doctors and that they are testing you with this and making sure it will be beneficial for you before just giving it to you. That is a sign that they are very proactive and care about it helping you. Keep us updates on how it goes! Do you have any links about it or can you link a picture so we can see what it looks like ? just curious about it!

        • #13202
          Rosemary Martin
          Participant

          http://www.seenjra.com/niov/

          couldn’t answer why my numbers would go down instead of up?????

        • #13204
          Brittany Foster
          Keymaster

          Rosemary,
          That’s frustrating that they were going down! What made them try this with you? Are you on bipap at all or CPAP?

    • #13013

      I used liquid oxygen on continuous flow at 3Lpm. I’m on it at night and when I leave the house. It’s annoying because when I use the liquid it only lasts about 1.5-2 hrs. At night, I have the giant tank so it’s fine and lasts a while for home use. I have air-traveled with a POC a couple of times. I used the Sequal Eclipse 5 POC. I had to rent it for my trips for $300 (for 1 week use). It’s bulky and for my liter flow, the batteries run out quick. But we only fly domestic so I use up one battery pack and have at least 2 backups. The Eclipse has continuous flow max of 4Lpm, I think. But of course the batteries have a shorter life because of the high Lpm. A plus side is that you can plug in the unit and charge and use it. I plan to actually purchase the Eclipse so I don’t need to rent it for $300 each trip I take. Since I need oxygen for sleep, I can have oxygen without having to rent a liquid tank on location of my trips AND rent a POC for my flight. I can just use the POC for both uses. 🙂 My husband and I figure that it would be more worth our money to just buy my own POC so we don’t need to do all the paperwork involved for renting any oxygen unit and spending money for each rental. With all the times we rented the POC, I could have paid for half of the price of owning the POC. Hahaha. Depending how it all works, I might still continue to use the liquid at home for sleep and then use the POC for any other time. We like to try and take local trips or domestic flights once in a while so the POC would be helpful for me. I hate tanks because they only last a couple hrs and then I am without oxygen the rest of the time until I get back home. I am eager to get the POC in hopes it will be easier for me for travel and outings.

      Diane

      • #13015
        Brittany Foster
        Keymaster

        Hi Diane,
        I would love to hear how that goes for you. How big is that POC you are talking about? Is it small enough to put in a backpack or over your shoulder or is it the one you have to pull around? I have always had troubles with the ones i pull around because it’s hard to get through spaces and it doesn’t leave both hands free. How long do the batteries last when using it at continuous on yours ? How many backup batteries do you use or keep with you when going out for the day? Do you need to recharge the actual machine ? How long does it take to recharge? Just curious because if I found a POC that was continuous, lasted, and was small enough ti put in a backpack I would use it!

    • #13014

      Brittany

      How are you on continuous flow of 4LPM and have a small, 5lb tank?? Is it the ones you refill yourself or do you have many tanks that you carry on-hand throughout the day? They put me on liquod oxygen because it has smaller portable units for it, instead of the tall green tanks. They told me that the smaller green tanks won’t be enough for my 3LPM. Are you telling me they have been wrong this whole time?? Hahaha. 🤔

      Diane

      • #13017
        Brittany Foster
        Keymaster

        They only last about an hour and yes i have the home filler system. I keep about 3 with me each trip and then go home to recharge them while getting other ones. I have a total of 5 at home. So i keep some at home to charge and take some with me when i go out. I’m hardly ever out of the house for more than 5 hours at a time anyways. I work in the morning and afternoon as a nanny so I don’t have too much trouble with running out, especially if there’s tanks always being charged.

        • #13020

          Oh I see. That’s cool. That’s a lot of tanks to carry around but it seems worth it so you can be mobile and hands free. My liquid oxygen tank is heavy when it’s full but I don’t have it in a backpack. It has a shoulder strap so it puts strain on my shoulders. If my husband is with me, he will carry my tank but other times it’s just me lugging it around. So annoying.

        • #13029
          Brittany Foster
          Keymaster

          I can imagine it would hurt the shoulder ! I would definitely be getting in to see a chiropractor in case it through my alignment off lol! We don’t need any more problems hahahaha!

    • #13018

      Hey Brittany,

      Unfortunately, the POC is on the bulky side so it’s the ones you have to roll around. I have also been looking for a POC that is compact and fits my 3LPM needs. But I don’t think they exist. 😢 hahaha. At least not yet. 🙂 I get sad about the fact that the POC’s I need are the bigger sized ones. I hate it sooo much. I get sad that I have to be on such a high flow and have to be on continuous. But I know that it’s what my body needs and I should make it work.

      Diane

    • #13019
      Constance
      Participant

      Diane,

      POC are supposed to be compact and not on wheels. The POC I recently used for travel is made by Inogen and it is the OXYGO, it goes up to 5 lpm also of course 3 and 4 lpm. It weighs 3.5 pounds. Just thought I would share that with you.

      • #13028

        Constance

        The Inogen you are talking about only has pulse-flow settings. I need to be on continuous flow settings and those are only available on the bigger POC units. Some smaller ones have continuous flows but only go up to 2 LpM or something. And the criteria for the POC I wana invest in are the ones that are also FDA approved so I can travel by plane when I go on trips. 🙂 I would love those smaller units if I was allowed to be on pulse-flow.

    • #13027
      Brittany Foster
      Keymaster

      Diane,
      I can completely relate ti your sadness and frustration you feel being on a high flow of oxygen and feeling like there’s no other option besides the large tanks. I get feustrated just having ti load my car with the tanks every morning and go back and recharge them.

    • #13030
      Constance
      Participant

      Diane,

      Sorry about that I could have sworn the one I had also had continuous flo.

      • #13032
        Brittany Foster
        Keymaster

        Constance
        I know so many PHers who use and love the inogen products! Like Diane, these are also pretty impossible for me to use because I have restrictive lungs and don’t breathe enough for the pulse flow to benefit me the same way continuous would. I hope one day Inogen and their small lightweight units can create one for continuous flow PHriends!! 🙂

    • #13035
      Randolph Reynolds
      Participant

      Thanks everyone. I’ve learned a lot. At the moment I used a Portable Concentrator (INOGEN G3) when I need it. My remodgulin is beginning to help be get off any continuous use of the PC. Next trick is to get all this stuff aboard an aircaft.

      • #13036
        Brittany Foster
        Keymaster

        I’m glad the medication is lessening how much hou have needed the oxygen and the continuous use of it. That’s such great news! Remember to call the airline before and let them know you are bringing on oxygen. Usually you need enough batteries for the whole flight time plud a half flight. So if your flight was 8 hours you would need enough batteries for 12 hours ! Each have their own policy and requirements of doctor notes too.

      • #13044

        Randolph

        That’s great that your meds are making you feel a little better. I was actually on Remodulin for about 8 years. It was rough flying international with it though. Haha. I went to India for a wedding and flying there wasn’t bad, it was the trip home that was stressful. The airport TSA’s didn’t understand why I had liquid meds, needles, and a pump on my stomach. No matter how I explained it, they looked at me like a deer in headlights. Of course they finally let me through and wanded me and inspected my meds bag thoroughly. Flying domestic is easier. Not a lot of questions. I had a doctor’s note for my Remodulin and my PoC. So make sure you have all the proper paperwork to show them proof it’s medicine. Just remember not to go through metal detectors with your Remodulin pump. I didn’t know and walked through one and the next time I used that pump it malfunctioned and I had to call the hotline to do a reset on it. I actually transitioned off of Remodulin and onto Orenitram pills last year. Good luck on your future travels. 🙂

        • #13045
          Brittany Foster
          Keymaster

          Diane,
          This is great advice ! I don’t have a pump myself, but I do have a pacemaker and can’t go into medical detectors for that reason because it could malfunction the device. My pacemaker came with a card that I show to the airport saying that I am unable to go through detectors. Just curious if the pump came with anything like that at all? And I can’t stress enough the importance of having medical documents with you when travelling. Especially something signed by the doctor. Even if you want to save the doctor some trouble and make a list out yourself, have the doctor read through it and sign it stating that these are medically necessary as well as any oxygen that you are taking. I take this when I travel anywhere and have all medical documents in an envelope in one of my backpacks. Better to be too prepared vs unprepared ! Thanks again for you feedback and words of wisdom!

    • #13050
      Allan Edmondson
      Participant

      Hi Brittany,
      With the number of written responses you have received, you have been given a choice or two. My wife Sandra is on 3 LPM 24/7. We have an electric unit she uses in the house and yes she does have a plastic tube running after her everywhere BUT it is her lifeline.
      If you do air travel – there are specific codes you have to abide by. Your POC has to be compliant with the FAC rules and regulations and by some of the answers I have read here – some people are not travelling with a minimum of 50% more oxygen delivery time than aircraft travel time which we had to call on once as our aircraft was diverted because of bad weather.

      We started with a a SOLO 2 POC and on re-boarding our ship following a day excursion, my wife was TOLD by a Security woman – GET THAT THING OUT OF YOU NOSE – SWITCH IT OFF – AND PLACE IT ON THE X-RAY BELT. When we switched it back on after such a gracious welcome back aboard the POC failed saying LOW 02 LEVEL – CONTACT YOUR PROVIDER. The POC FAILED to fire up. Here we are in the middle of a 12 night Inner Passage Cruise to ALASKA and back to San Francisco. That meant, no more excursions and when we do arrive back in San Francisco, it is the Sunday of your ‘Independence Day’ long weekend and nothing will be open. This is only part of that story and the many stories that go with it when travelling with two POC’s plus batteries, my CPAP unit and our hand luggage. I looked like a canal lost in a foreign airport.

      Three days before we docked at San Francisco I made a Ship to Shore telephone call to a person I met at the PHA Conference at Indianapolis 2014 and arranged a purchase of a new POC so we could get back home to New Zealand. The model I selected was Concepts 2 with 3 extra batteries. What a wonderful machine, that does the job well-very energy efficient, larger wheels, you can change one battery at a time while the machine is running complete with an external battery charger and on the dial it goes up to 6 LPM pulse only. We haven’t tried that. At 3 LPM continuous, it performs as you would expect. From 3.5 LPM upwards it is pulse only.

      Finally before you purchase Any POC, you should trial it for at least 2 weeks to see if that particular unit suits your lifestyle. If it doesn’t , trial another one and so on. These machines are YOUR LIFELINE so don’t be bothered who is watching you. When young kids keep coming back to Sandra to look at the thing in her nose, She ask them. Do you want to know what this tube is for? and they nod their heads – This tube and that machine make air and helps me to breath and keeps me alive. They are happy when they know and don’t come back to stare anymore.

      You have been diagnosed and you have medication plus a machine to help with your breathing – now YOU can help others to overcome their difficulty as you have gained such experience.
      All the very best for the future – Brittany.

      • #13059
        Brittany Foster
        Keymaster

        Hi Allan,
        Wow! I’m sorry all of that happened while on vacation. I had something similar happen at the airport. I can’t even imagine what that must have been like especially if the POC that was shutting down was the only one you had. Luckily you were able to think on the spot and come up with a plan. Even though that still must have been so stressful for you until you got the other one.

        Thanks for all the info and tips about the POC. It definitely is a good idea to try out a few of them for a few weeks and see how it fits my own lifestyle needs and air flow needs.

        Thank you for all the support and for the great feedback. The best to you and your wife too!

    • #13074
      Peter G Pierce
      Participant

      Have never used a tank except in hospital. I use 5 LPM continuous at home from a stationary unit and 5 LPM pulse with INOGEN ONE. I’m on the “snake” pretty much 24/7. Connect the stationary unit to my bipap at night and stay in 90s. I also have a SeQual Equinox that goes to 9 LPM pulse and 3 LPM continuous for times when there will be more exertion (baseball or football game where there are stairs or hilly sidewalks). I use the INOGEN when I’m driving around town, shopping, running, errands, business meetings, theater, etc. and do fine as long as I have extra batteries. Seated I can get by with 4 LPM pulse which extends battery life (16 cell) to about 3 hours. With a couple of spares, being out has not been a problem. There is, of course, a big recharging party on arrival at home. For my situation, commercial flying is no longer an option. Cabins are pressurized to about 8,000 feet (sames as Aspen CO). POC delivers about 80% of oxygen in air. Since oxygen at high altitude is much less than at sea level, there is less oxygen delivered and impossible to keep saturation level in safe zone. For the same reason, we no longer travel to Santa Fe (7,800 fee) or anywhere above Denver. On our overnight road trips, we bring the POCs, a small 5 LPM continuous stationary OC, and if we will be at a destination for more than a weekend, a large (54 lb) stationary OC that goes to 10 LPM continuous. Of course, we bring lots of batteries and recharging units. All that gear gives us an incentive to pack lightly. In the car, the POC is on DC charge so no battery usage. PAH has been a dramatic lifestyle change but between great treatment, new meds, and technology, life –the operative word– is good.

      • #13080
        Brittany Foster
        Keymaster

        Peter,
        I totally have the “recharging parties” when I come home too. I don’t have the portable oxygen because my sats don’t stay up enough on the pulse flow because of my breathing disorder. I’m sorry that you are unable to fly on planes. I found it extremely difficult and actualyl would prefer going on a cruise to flying on an airplane. The plane ride took so long for me to recover from and I ended up feeling really faint and “out of it” for up to a week after. It probably would be in by best interest to not fly either unless I found a good POC that worked with me and lasted the flight time.

    • #13077
      Margie Novak
      Participant

      Hello, I appreciate everyone’s comments. They help a lot! I am on 10 liters of oxygen continuously so I have to take the LARGE e-tanks with me when I go anywhere. Talk about bulky! I used to be able to put them in the grocery cart and do grocery shopping but my illness has taken a turn for the worse so I don’t get out much. I use a concentrator at home continuous. The large e-tanks really limit where I go and what I do but I am still thankful every morning when I put my feet on the floor that I have another day. Been fighting this for 13 plus years! Wanted to ask though, my pulmonologist wants me to use am “oxymizer-conserver-cannula”. Has anyone ever used that? Let me know. thanks!

      • #13081
        Brittany Foster
        Keymaster

        Hi Margie,
        I think that is the type of cannula that has something attached to it where it makes an 8 liter flow equivalent to a 10 liter flow. It is good for conserving oxgen and for making the tanks last longer. I would look up more info about it or ask your doctor because I may not be correct in what I’m typing here. I’m sorry that it has been so hard for you to go to the grocery store and get out of the house. I can only imagine how hard it is to carry around the larger tanks. I have a harder time with even the smaller ones! I sometimes pull the larger ones behind me when I need more oxygen and need it to last longer. Keep on keeping on and putting one foot in front of the other. As cliche as that sounds! xo

    • #13121
      Marjorie Okie
      Participant

      I have diastolic pulmonary hypertension which has no available medications available. I have been on 24 hr oxygen at 3L for a year. It has so radically affected my life. I use the small tanks and carry on one shoulder. They always fall off. They are heavy. I also walk with a cane and so my gait is off. I have such a very much decrease in mobility. I am going to the ocean in September for a weekend which is my first trip from home being on oxygen. I primarily just stay home. have arranged for a concentrator and tubing for my room as I will be there a lot and I have a bipap. I also am having a dozen tanks delivered. I do so much less activity us in my tanks but cannot get a portable concentrator as I am on Medicare and cannot afford one.

      • #13123
        Brittany Foster
        Keymaster

        Hi Marjorie,
        Like you, the only treatment that I am receiving right now is oxygen therapy too. I started out on 2 liters of continuous oxygen from a tank 2 years ago, and now am up to 4 liters continuous with exertion and 2 liters just sitting (sometimes that changes too and I have to raise it) . I know how hard it is to have to lug the tanks along and I wish it was easier for you to get a POC although some POCs I have found to be cumbersome and don’t go up to the continuous amount of oxygen that I need to sustain my oxygen levels.

        As an oxygen user, I use a backpack for the smaller tanks. This has helped to give me a lot more mobility. The backpack that I use is a camelbak backpack similar to what the hikers use. It is narrow and the tanks fit perfectly in it without moving all around and it evenly distributes the weight so that I’m not lopsided or not causing any extra stress on my hips. Maybe it would help you to look into this type of backpack. Also, have you thought about using a mobility scooter to help you get around easier? I’m sure they have a spot for oxygen tanks on them too!

    • #13125
      Robin Taylor
      Participant

      Hi all! Somehow I missed this discussion when it started. I am on 5L continuous flow 24/7 at home on a concentrator. My oxygen of choice when I’m out is an O2 tank in a backpack on a 5 pulse setting.They last 2-3 hours and I always put two extras in the car (in case one is a dud…has anyone else had this happen to them?). If I’m driving more than an hour, I use my Simply Go POC by Resperonics on a 6 pulse setting. The POC can also go up to a 2 continuous. I have tried to just use the POC instead of the tanks for everyday use but it is cumbersome to get in/out of the car, to pull behind, etc… and it doesn’t seem to give me enough pure oxygen as the tank does. My O2 sat numbers reflect the difference, too. So, if I have a choice, I use the tanks. I also have the taller tanks that I can use in the pool when I exercise, which I bump up to 6 continuous. I read an earlier post that you can’t fly commercial if you are on 5LP, is this true for all PH’ers or just some with certain conditions???

      • #13139
        Brittany Foster
        Keymaster

        Hey Robin,
        I havent heard that airline rule before. I think it depends on the airline and what they allow so it is always good to check with them beforehand to prepare and get the right info.

        As far as the dilemma with the tank being a dud, YES this has happened to me before. It has happened before where a tank that I am using runs out a lot quicker due to a leak or something with the tank. It is always the best idea to have a backup. It has been more difficult using backup tanks and having them handy with this heat though because I can’t leave it in the car because I don’t want it to reach the temp limit and not be as good! The winter and cooler months are much easier to keep back up tanks with me at all times in the car.

        I also feel the same way about the tanks. I have a POC, the same one that you have actually and it doesn’t give me as strong of oxygen as the tanks. I thought it was just my machine but I guess others have the same problem! I prefer the tanks because I like to carry mine in a backpack too!

        We definitely have a lot of similarities and I’m glad to be able to connect with you here!

        • #13164
          Robin Taylor
          Participant

          Brittany! I agree, we do have a lot of similarities! And I enjoy talking with you here! It helps to know others have the same issues and are finding ways to deal with them in ways I haven’t thought of!

    • #13149
      Constance
      Participant

      Brittany and Robin,

      July I flew to Florida and I got an oxygo that went to 5lpm and had no problem with the airline. They only looked at the poc to see if it had the FCC approval on the machine and it did so they allowed me to fly with them. Your suggestion to check with the airline is a good one.

      Connie

      • #13154
        Kathleen Sheffer
        Participant

        That’s great, Connie. And I agree – I haven’t heard any limitations on liter flow as long as the machine has been approved.

      • #13157
        Brittany Foster
        Keymaster

        Thanks for the advice Constance ! I’ll have to check into that POC too! I have learned so much from this topic and all these posts 🙂

      • #13162
        Randolph Reynolds
        Participant

        Having just returned from a long road trip taking my “Simply Go” and INOGEN G3 (along with a cpap} I discovered that this helps but the two liter limitation for night supplication is ok but I use 3 at home on a large concentrator. What has happened is that my CTEPH caused congenital heart disease now requires a pump that infuses Remodulin into my blood stream. The complications of carrying all this on board a commercial flight plus servicing the pump becomes tedious. Getting it all through PSA and on board an aircraft has caused me to stop flying to places until or unless this treatment methodology works.

        Odd but I was a pilot in the Air Force and NASA for years, sometimes losing cockpit pressurization, but 100 percent oxygen worked well enough under pressure. That’s the kind of system I need now just to live at 6000 ft.

        I didn’t realize how many variants of Pulmonary Hypertension there are.

        • #13170
          Brittany Foster
          Keymaster

          Hi Randolph,
          It’s amazing how much we can learn from others and when we talk to different people with this condition we realize quickly that no two are the same. Treatment is so individualized but there are still a lot of similarities with symptoms and how we all cope with this condition.

          I have found that flights are very tedious as well and this has become really stressful for me the last few times of flying. It is hard when the concentrators only go up to a certain amount on continuous flow.

          Were you ever bothered by the plane and pressures when you were a pilot?

        • #13179

          Hey Randolph,

          Oh my… I totally understand your frustrations and the tediousness of flying with oxygen AND Remodulin! 😔 It is indeed very difficult! I did hate flying when I was on Remodulin. So much prep and paperwork and research to make sure the airline is accomodating or understanding. Traveling with both is such hard work. I felt bad for my husband who had our heavy luggage AND my POC AND my portable wheelchair that we have checked-in. I had mentioned before that I only travel domestic if we really want to take a trip somewhere. But lately, we have just been doing road trips for a weekend getaway. Nothing longer. I’m waiting to purchase my own POC so I don’t have to rent one for our trips. Hopefully by the end of this year or early next year. I’m on liquid oxygen that I use when I sleep and for leaving the house.

        • #13181
          Brittany Foster
          Keymaster

          Hi Diane,
          Best of luck to you on getting the POC! I agree that a lot of the work it takes to even get on an airplane sometimes just doesn’t always seem worth it. I have enjoyed my road trips and weekend trips and am remaining grateful that I can still do that! What POC are you looking into? Have you tried one that works well for you when you rent them?

        • #13186

          I had rented the Sequal Equinox POC a couple times. It is FDA approved and does a continuous flow of 3LPM. I’m not sure if that’s the highest setting on continuous or if it can go to 4LPM. I did rent a smaller PoC once but it only did pulse flow. That was before the doc told me I should be on continuous. 😕 So the Equinox is my personal choice. There are a few other POC’s that have continuous flow but I chose this one. 🙂

        • #13187
          Brittany Foster
          Keymaster

          Thanks so much for the info Diane ! I’ll definitely look into this the next time I have to rent one for a trip.

        • #13189

          Ooopps. Correction. I rented the Sequal Eclipse 5. 😂😁 Not the Equinox.

    • #14382
      Brittany Foster
      Keymaster

      @rosemary44, have you been able to get approved for the NIOV? My doctor actually suggested that for me and is trying to get it for me now. What testing did they have to provide for you? For me, they are using my bipap readings during the day showing that I need support with ventilation. Just curious if it has helped you along with the oxygen and what your doctors are thinking about it.

    • #14393
      Jan Kowalke
      Participant

      I use tanks due to high lpm. I found a product called the Oxymizer pendant cannula. This is an conserving device for continuous flow oxygen users. It has been study by NIH and proven to help save on oxygen usage. Savings can be as much as 4:1. As an example, a standard cannula at 4 lpm would be dropped to 2 lpm using the Oxymizer cannula. This would approximately double the amount of time a tank would last.

      • #14515
        Margie Novak
        Participant

        Jan, Hi…. I saw from your recent post that you use an Oxymizer pendant cannula. My pulmonologist suggested I use one of those as I am on 10 liters of oxygen all the time. Can you tell me briefly how it works. The oxygen therapist said something about you wear it and it fits outside your clothing. I don’t kow if I would like that. Does it work though? Any information you can give me would be appreciated. I am going to get on an google it to see what it says thanks

    • #14491
      Iris Alexander
      Participant

      Great post I’ve learned a few things here I will have to look into the NIOV although even after reading about it I’m confused on what it does or how it works exactly. Lol And I’m very curious about the oxymizer cannula. I fly through tanks I’m on 5 liters work full time one tank lasts me maybe two hours or a little under and that’s with me turning it down to 3-4 at rest. I had the simply go POC for 2 years and I suffered. I went on my first and probably last cruise with the POC, ended up having to rent a manual wheelchair and be pushed around it was depressing and ruined the trip I could not walk at all. Shortly After that and two hospital stays later I realized I needed more liters on a continuous flow so back to tanks I went . As much as a pain in the butt they are I feel waaaay better with it then struggling with the POC.

      • #14496
        Brittany Foster
        Keymaster

        Hi Iris,
        I feel better on the continuous flow too. Although it would be great to have something that is small, lightweight, and portable, my oxygen needd require continuous and that’s just something I have to adapt to and accept! And make it work for me as well as possible. As far as the NIOV goes, my underlying condition (one of them) is restricted lung disease caused by central hypoventilation syndrome that I had since I was younger which basically means that I can’t breathe as efficiently and the exchange of o2 and co2 just isn’t there. They found that with the oxygen I also need ventilation support. So think of it as a portable bipap that looks like a bigher nasal cannula ! It is making sure I’m breathing at the correct rate for the activity I’m doing and is acting as my control of breathing because I don’t have that control on my own (if that makes sense) . The diagnosis is pretty new to me but after years and years of shortness of breath and low oxygen that led to my PH in the first place they finally figured it out. Unfortunately the only treatment is ventilation and oxygen so I’ll find a way to make it work for me. Jewel up the cannula or something hahahaha!!!

        • #14531
          Iris Alexander
          Participant

          Ah thanks Brittany now I under the NIOV. I hope it works out for you!

          Thanks Constance even ten years in I still do like to hear others feel the same as I do.

    • #14497
      Constance
      Participant

      Iris,

      I so agree with you about the tanks vs poc. I was using a poc and although I do not need continuous flow, I found that even with an extra battery (which cost me $375.00) I was constantly running out of power on the poc. I went back to the small M7 bottles and use a back pack, way better and I do not run out of O2. i just wanted you to know there is someone else out here that feels the same way you do.

      Connie

      • #14498
        Brittany Foster
        Keymaster

        Connie,
        I can totally relate to the both of you! I have a home filler system for mine too so I always have some constantly charging. Do you use the home filler too?

    • #14499
      Constance
      Participant

      Brittany,

      I use a home concentrator and only use tanks when I go out, such as church, doing a wedding on the beach, support group meetings, Chorale. etc…. Needless to say this durn disease has not stopped me from doing what I love, it has just slowed me down, lol. But the POC just cannot keep up with my needs.

      • #14502
        Brittany Foster
        Keymaster

        Connie,
        I am so glad you are finding ways to still do what you love doing even if it has to be at a slower pace! I have a turtle tattoo to remind myself “slow and steady wins the race!” Doesn’t matter how fast you get to a destination, we have to live our life when there’s life to live!

    • #14517
      Margie Novak
      Participant

      I hope someone can answer this question: I use 10 liters of oxygen 24/7 and my nose gets so dried out… especially now with winter. When I was hospitalized recently they gave me some cream to put in my nose but I lost it. Some people have said petroleum jelly. Does anyone use any special cream for their nose and the dryness (even if you need a prescription) can you tell me what you use? As always, thanks!

      • #14524
        Brittany Foster
        Keymaster

        Hi Margie,
        I have actually heard that for some reason petroleum jelly isn’t good to use with the oxygen. I am not familiar with what would work best for this, but hopefully someone could answer this for you! I can post a new discussion topic and tag you in it so you can see how others answer ! If you aren’t able to get a good answer, I would check with your oxygen provider and ask one of the respiratory therapists. I’m sure they would have some tricks to share with you!

    • #14518
      Constance
      Participant

      Brittany,

      Thank you for your words of encouragement and your upbeat positive attitude, you have such a way with words and making a person feel gratified with life as they live it….
      Connie

      • #14525
        Brittany Foster
        Keymaster

        Thank you so much for saying that Connie. The forums definitely have helped me connect with others and feel less alone and it has really helped with my positivity in all of this! Thank you for your contributions

    • #14571
      Kacie
      Participant

      Until now, I have preferred tanks. I used to have a PoC for traveling, but stopped when the third one I owned broke in 2016. I found they only had a 2.5 to 3 year life to them and it got expensive. With the tanks and when I was on 2 liters/min (pulse when sitting, continuous when moving), I knew how long I would have left on the tank. That is a huge benefit when you want to be
      outside away from power
      outlets. Now that I’m on 3 liters/min at rest the
      tanks are becoming a real
      pain to take as many as I
      may need with me. I am considering both as a next step. My insurance won’t get me a PoC so I have to buy it myself so why not keep the tanks service too? Now, to cough up another $3K (4th time). Best Wishes to you.

      • #14584
        Brittany Foster
        Keymaster

        Kacie,
        It is unfortunate that the insurance companies have to make us decide between one or the other when one could be preferred over another for specific things. I know what you mean by having to take more with you when you are going out. I use tanks and when I am going out for a full day or think that I am not going to be able to get home and charge my smaller more portable tanks, I take the larger tanks with me (these can’t be refilled so I get them from my oxygen provider). on 3 liters the larger tanks last about 4-5 hours so I usually take 2 or 3 just in case if i’m out all day and pull the tank instead of keeping it in a backpack. It’s a slight pain when your hands aren’t free, but it beats not being able to breathe !

    • #14628
      Kacie
      Participant

      Thanks Brittany. It always helps to hear from others. I usually never see anyone on oxygen unless I’m at the pulmonologist. This is a great forum for finding support. Best Wishes to all here.

      • #14635
        Brittany Foster
        Keymaster

        Hi Kacie,
        The online community of PHers and those with other conditions that require them to be on oxygen makes me feel less alone, especially being 27 on oxygen. There was a time before I started becoming more involved with the social media community that I felt really isolated when I would go to appointments and only ever feel like I “fit in” at the hospital or at the doctors.

    • #19239
      Carol alexander
      Participant

      Just went on oxygen I was on 4 litters at nite doc said I needed oxygen all the time my numbers were 82 86 sometimes in the 70 upon exertion or walking the more I walk the more it drops iam on 3 liters during the day I have the little tanks they hurt my shoulders and back had shoulder surgery on both shoulders ugh.iam not a young women looking for advice on portable oxygen

      • #19241
        Brittany Foster
        Keymaster

        Hi Carol,
        I have the Inogen 3 and I really like it. The only downfall to it is that it does not run at continuous oxygen. I would have your doctors check your levels of oxygen on pulse flow (this can be done using the tanks too with a pulse flow piece to it that I’m sure the office has) . This will help determine if you are a candidate for pulse flow. The one that I have can go up to 5 liters of pulse flow meaning that it gives you a pulse of oxygen when you breathe in and matches your breath vs it just going in all the time. I take mine when I am going on trips or am travelling and it makes it easier to not have to carry all the tanks around. It also comes with a poratble charger that you can plug into the car so when you go on road trips you won’t have to worry about running out of battery life. Definitely bring this up to your doctor if this is something that you are thinking about and they will hopefully have you walk to see if it is okay for you and helps to improve your levels. My oxygen levels do the same thing as you and really decrease to in the high 70s and low 80s without it when I’m exerting myself. I know the tanks can be really heavy to carry around. I have heard of others using carts to push them in just to take some pressure off the back! We need our back muscles to breathe .

    • #20746
      Randolph Reynolds
      Participant

      Hello Diane and Brittany
      Since I last put in a comment on my use of POCs I reached a point where my Inogen POC wasn’t meeting the therapeutic needs that my two doctors said I had to have and they are right. I have to have continuous flow and the only portable one only provides 2ml/hr. Oxygen concentrations below 88% were damaging my heart. After my hospital stay I went on full time continuous flow using the tanks and the Resprionics 10 at night. One tank (size E) lasts me just under two hours at setting 5. My hope is that someone will come up with a portable continuous flow device that can accommodate my needs. Being tethered at home and limited by my tanks restricts me from travel. There are so many on this forum that have dealt with the travel issue I have become aware that the problem of developing a good solution for the continuous flow portable device is probably in the works but would cost a lot. Traveling with Remodulin poses a completely new set of limitations and troubles. Put the two together, continuous flow and subcutaneous infusion, and options are very limited for travel. My heart goes out to everyone who is suffering with this disease.

      • #20751
        Brittany Foster
        Keymaster

        Hi Randolph,
        It is so good to hear from you on these forums but I wish it were under better circumstances. I am sorry about your recent need for that level of continuous oxygen due to your oxygen levels not being at a therapeutic level that they would like you at. I am going to be doing a version of the walk test soon with my POC that I have that isn’t continuous and I am getting anxious to see what the results will be. I am hoping that I can continue to use it and that it will be effective for me. I know that my body has adapted over the years to my lower oxygen levels, I just don’t know how that is going to look long term for me and sometimes I’m afraid to even ask. I definitely can understand your sadness and frustration with having to be tied down to the cord at home and your at home oxygen. It does limit what you are able to do, especially having the pump and all of the medical supplies that go along with it too. Hopefully you have a lot in your house and a short distance away to keep you somewhat busy during the day. Maybe some at home projects that you could do to stay as active as possible while living with all of this day to day. Thinking of you and please know that you can come to the forums any time you would like to chat about anything! We are all here for you and wish you all the best, always.

      • #20754
        Margie Novak
        Participant

        Randolph, I can totally relate… I so much want to use the portable oxygen tanks but I need between 8-10 continuous oxygen and they do not offer that. If I go anywhere (and I mean anywhere out to eat, the store or a drive) I have to have big “E” tanks in my car and then I have to take them wherever I am going! It can be a real hassle and you get looks but most people offer their assistance to me. I have been like this for about three years. I wanted to go to Philadelphia to visit my sister and my pulmonologist said that was not wise. I see her next Wednesday to ask her if I can travel at all!! I too feel for anyone suffering with this disease. It is so hard to manage and some days it just beats you. Hang in there!!! xoxo

    • #21417
      Randolph Reynolds
      Participant

      MARGIE @margie-novak
      Did you ever get to Philadelphia? If so how did you make it happen? I cannot us the POCs I have because the don’t put out continuous flow.

      Thanks
      Randy

      • #21433
        Brittany Foster
        Keymaster

        Hi Randy,
        So good to hear from you. How have you been? I always love seeing you pop up on the activity feed. I know that it is hard with the POC especially because it doesn’t have continuous flow. I am really hoping that one day they can come up with something like this that is just as small and portable as the inogen. When I go away though I make sure to contact my oxygen supply company and often times they are affiliated with other companies nationally that can help with deliver of tanks and refill tanks. If you travel, do you have a home filler system for your tanks? It seems cumbersome, but you may be able to bring the filler system with you as opposed to a bunch of tanks ! Something to possibly think about or ask about.

    • #22163
      Jo Ann white
      Participant

      I use a concentrator that goes up to 10 liters at home (need 5 daytime and 6 at night) so flow is too high for a pic. However I can use d tanks with bonsai regulators (have two regulators and a carry case and a wheeled cart). A tank lasts me about 4 hours and they are light enough for me to lift/carry. Choosing accessible seats it makes it possible for me to go to theater and ballet and out to dinner despite living alone. Dread the day my needs go above 6 liters and I have to switch to continuous flow, as larger tanks heavier and last only about an hour.

    • #22177
      Marjorie Okie
      Participant

      I have used oxygen for 3 years as my diastolic pulmonary hypertension advanced. I am at 4 liters at home continuously using a floor model concentrator with a 25 ft line and use the same on a tank with a backpack and 4 ft line when I go out. I also use a cane or a rolling walker. Since going on oxygen my life has become so limited. I mostly stay home. Using the portables are hard for me. The backpack is difficult for me to get on and off. This is my life: dragging my oxygen line around my house. At least I am living. I have a daughter and 3 grandchildren to keep going for. It’s just hard, really hard.

    • #22182
      Brittany Foster
      Keymaster

      Marjorie,
      One of the hardest parts about being on oxygen for me is that you feel pretty limited and tied down (quite literally) to what you can and can’t do. It’s like as soon as you start getting used to that new normal, there is something that pops up that reminds you that it is NOT normal at all. Luckily, after my surgery this past May, I am a lot less dependent on the oxygen and don’t use it when I am sitting down, but if I am exerting myself for an extended amount of time I feel the difference when I DO NOT have it on and make sure to bring it with me. The heaviness of the backpack can feel like a lot physically though and I understand what you are going through. I hope that you are able to enjoy the holiday with the ones in your life that matter the most and that keep you going strong!

    • #22185
      Randolph Reynolds
      Participant

      Marjorie and Brittany
      This subject has become a nemesis for me. I have to be on 5 liters per hour with oxygen tanks. My son is getting married in San Francisco in August. I have explored all options and one obstacle after another presents it’s self. I cannot make the trip from Arizona even with a portable concentrator that will pulse to 6. Also I have this large concentrator I use has to go with me. Not to speak of the management of my Remodulin. So I have come to accept that my travel is limited to at most three tanks (E) and that is my issue. It is a life changer for certain. I’ve done fairly well managing my PAH even into the Christmas Season. So I just leave this particular dilemma to God. Best wishes.

    • #22190
      Colleen Steele
      Keymaster

      @ripple76 I’m so sorry to hear that you won’t be able to travel to San Francisco to see you son get married. I wonder if they can live stream somehow do that you can watch the wedding in real time? I know you would much rather be there in person but this would be a nice alternative.

      I can relate to the issues keeping you from going. My son was on IV Flolan and oxygen which made traveling a real challenge. His only option were the cylinders because portable concentrators weren’t insured for children and he needed a higher pulse than what most of them offer. It’s for this reason that we always drove to from WA to CA to see his specialist instead of flying.

      On a positive note, it is so good to hear the your PAH has been behaving enough for you to enjoy the Christmas Season. I wish you a joyful one!

    • #22194
      Margie Novak
      Participant

      Hello Randy, I just noticed your message…. don’t know where my head has been… the answer is “no” I never went to Philadelphia! First, the company who supplies my oxygen said they needed two weeks notice which I did not give them and second my pulmonologist did not want to “sign off” on it. She was worried something would happen then what would I do. So, I did not get to see family. Quite disappointed. Being on oxygen has a lot of limitations. As I mentioned earlier, I am on “E” tanks and I recently had a funeral and had to have them deliver 10 tanks to me. I am thankful that I have oxygen to use but very restricted on what I can and can not do! Take care and thanks for asking.. margie

    • #22210
      Brittany Foster
      Keymaster

      Randolph,
      I am glad that you are doing your best to manage all of this around the holiday. I know that it is so tough. I can’t even imagine thinking of ways to be able to attend your son’s wedding. That must be hard when you think about the obstacles that you face to be able to do that. I hope that you can figure something out. Maybe even talk with your doctors about this and see what their thoughts are. Or even a rep from the oxygen company may have some ideas based on what others have done.

    • #22213
      Shannon
      Participant

      I am on 10 at home and 15 when walking, I use E tanks. And I also use M60 tanks. They are huge are very heavy! But they last a few hours. Only my Sons can lift them. I keep about 20 tanks around me at all times. Yes even in the car. I have to have continuous flow of oxygen or I will pass out. And waking back up is taking longer and longer. I have bad anxiety when it comes to running low on air , this is the reason I always keep so many tanks around. I gave my portable concentrater away to a elderly man, who couldn’t afford one. I stopped using it 2 years ago, it didn’t support me anymore. He was so happy! And it made me feel good to pass it on. Life with oxygen is hard, and it’s hard on the ones who help us. With that being said I don’t let using tanks stop me from doing anything that I really want to do! I won’t ever stop. Because then what’s the point of living? I am grateful that I have a good oxygen delivery company. I have become friends with most of the drivers and they always look out for me. And make sure I have everything I need. They are a good group of young men! So I guess I am lucky that way. I do wonder as my condition worsens , what I will do when I need more then 15 liters? That’s a scary thought for me. But only time will tell.

    • #22219
      Brittany Foster
      Keymaster

      Hi Shannon,
      That is a lot to carry around with you (quite literally) , I know that the tanks are so heavy. What do you take your tanks in to make it easier for you to get around? I used to carry my smaller ones in a backpack and had something to pull them in when I used the larger one. I took about 60 tanks with me on a cruise ship when I went on a family trip when I required oxygen more than I do now. CRAZY the amount of time it took just to get that squared away and all of that in the car. I can’t even imagine taking 20 with me at all times but I guess you are better safe than sorry!

    • #22221
      Shannon
      Participant

      Hi Brittany! Yes it is a lot to carry around and they are heavy. Some days I can’t lift them. This is where having a lot of kids comes in handy for me. Lol but my tank holder that I put my E tanks in, holds 4 E tanks. And then my wheelchair had a basket that I put some in when shopping or whatever I am doing at that time. But yup anytime I am going anywhere the car has about 20 E tanks in the trunk and back seat. I go through a tank on about 45 minutes. So better to be safe then sorry. And I get a oxygen tank delivery normally twice a week to replace used tanks. And my home Concentrater is huge! But it works really well. I am glad I have it.

    • #22226
      Brittany Foster
      Keymaster

      Shannon,
      I am glad that you have that home concentrator too. It must help to save the usage on those tanks so that you don’t run out too quick. Do you have a home filler system for your tanks? I had one attached to the home concentrator and it helped when I could refill my own so I wouldn’t have to wait to have them delivered all the time, but the tanks that I had were smaller so they were easier to fill and didn’t take too long. Since yours are bigger it is probably worth just having them replaced by the company when you need it.

    • #22246
      Margie Novak
      Participant

      Shannon, I feel what you are going through I am on 8-10 continuous at home and use a bi-pad at night. I too have to lug the big “E” tanks wherever I go. No long trips for me anymore. Luckily my sister lives with me and can put them in the car. I used to be able to grocery shop with them by myself but not anymore I use two concentrators at home. The oxygen people said with one you never know if you are getting 10 liters so they supply me with two big concentrators that run constantly. I have green tubing everywhere! Plus the oxygen company said if I ever need more oxygen, they can increase it for me which I pray I will never need. It is a real pain being on oxygen but I am thankful every day that I have it. My oxygen can drop to the 70s just from sitting without it in like 5 minutes. Hang in there! I know it is a pain but think with modern technology they will come up with something in the future. We PH members have lot of struggles that people do not understand. Take care margie

    • #22248
      Randolph Reynolds
      Participant

      Margie
      You speak for me on this requirement to be on continuous oxygen at the hight levels. Thankfully I can go off supplemental oxygen for a lot longer. It is depressing me to be living this way. I do hope that there is some better therapy that will come along. Bless you

    • #22249
      Shannon
      Participant

      Hi Margie! I didn’t realize I could use 2 home concentraters at once? That’s great but must be loud? And yes using oxygen is very hard! And wow I never realized how difficult it can be just to breath some days. I also go low , into the 60s within a few minutes without oxygen. Do you have Intersital Lung Disease? I do and they think along with that and PAH that is the reason I need so much oxygen all the time? Just curious to see if you also have that? I actually get stiff and my body starts to shut down and it’s bad. It’s kinda funny though, I can always get extra help, if my nurse doesn’t answer my call bell. I will wait and then take off my oxygen and then they all come running! Lol I do the same at home with my kids! If I have to be sick then I might as well get some laughs in! Lol I am sorry to hear you can’t grocery shop alone anymore. That must be hard. But you sound like a strong woman. Thanks for your kind words. Stay strong!

      • #22250
        Margie Novak
        Participant

        Shannon, yes it is loud as they sit in my dining room, the central room in my house and in the summer the room gets very hot! But we have gotten accustomed to them! I always seem to get the green tubing caught on something and I don’t know about you but when I get showers water is everywhere. It is hard to get a shower using oxygen! Like I said earlier, I am blessed to have my family. My sister, Linda, is my “feet” she does all the walking that I cannot do and takes me to doctors. I have pulmonary hypertension but I also suffer from blood clots that have settled in my lungs. I have an illness that causes my blood to clot too fast so I have to take a blood thinner (which is a shot) every day. I told my mother when she was still living that I am like a mutant…. nothing is right on my body! We laughed Hang in there and post if you have any questions or need encouragement. We are warriors!!!

    • #22251
      Cynthia
      Participant

      Thank you all, for all the information. I have a home concentrator and travel with E tanks, 8-10L and 15 with movements.
      It has been a bit much. If it wasn’t for friends and family, I don’t know where I would be, they will carry tanks so we can go outside and play. At times, I don’t want to go out, because of the hassle of getting ready to go out, takes your breath away. Fortunately, I’m super positive and optimistic and believe 24/7 I AM GETTING BETTER. I used to travel with a POC rented, but the airlines traumatized me one too many times by sitting on the tarmac for a hour, causing my oxygen to run out mid flight. I took so many trips while I could, until my physician stated I could not fly anymore. I also have a love hate relationship with my oxygen provider, because they want to be the doctor and decide what I can/cannot have. Example; they won’t give me liquid oxygen (requested by physician), when I ran out of tanks they told me I had a concentrator, implying I stay home. To answer some questions I read, I use a Neti pot for dry nose and air and misters with eucalyptus oil. I also implemented intermittent fasting and alternate days I eat meat, and am breathing so much better. I listen to the doctors but when I ask lot’s of questions or ask for alternatives they are stuck on more medications. It’s frustrating. You have suggested some alternate therapies that I just sent my physician. I have to ask, @Diane, when you transistioned from Remoulin, what was your experience?

    • #22255
      Colleen Steele
      Keymaster

      Margie, if I may ask, did insurance cover both home concentrators for you? My son’s bedroom is upstairs which is where he kept his and used long extension tubing that could run down our steps and reach into the living room and kitchen. What a tripping hazard though! He also had cylinders but you can run through those pretty quickly if used often at home. I never thought to look into getting a second home concentrator for him.

      They do make rooms very hot. His bedroom is small so he kept his in the hallway or else the heat would get unbearable.

    • #22259
      Margie Novak
      Participant

      Colleen, you can ask whatever, I am more than happy to answer. My oxygen company (Medcare Equipment) charges $1,756.11. My insurance UPMC pays $1,041.19 so I am left to pay $233. I pay the company what I can every month.. being on disability your money doesn’t go far so whatever I can pay I do. They haven’t said anything yet or asked for more money. Not only is ririthot but the noise they make.. couldn’t have it in my bedroom. It upsets me that insurance does not cover or pay more for oxygen It is a medication that I need everyday so they should treat it as a medicine! And funny you should ask this today as I just got a phone call from my electric company because they sent me a form with regard to having oxygen and being put on a priority if the power goes out in the winter. They wanted to know if I was using a concentrator… I said I use 2 concentrators. I told her I am sure that my power won’t gone on any sooner but it is nice that the power company does that. Well, I have gone on long enough. Take care — be strong — we are fighters with this illness! Try to have a Merry Christmas margie

    • #22291

      I’m a little late with a response to this question but I switched to the portable concentrator called the Oxy-Go. Mine does pulse and goes to 4 Liters. I’m down to 3 liters. I weaned myself down from 6 liters! My sats stay about 98/99 at rest and with any exertion they do drop to 92/93 because of my right sided heart failure. I had the tanks which drove me crazy because of how heavy and bulky they were ( C tanks). I also refused to use the “stroller” carriers as I didn’t like the attention drawn to it. By the way, my portable recharges in the car, I have two extra batteries which I keep recharged and so I have about 7 hours of o2.

    • #22422
      Colleen Steele
      Keymaster

      Andrew, I wish I could have gotten a portable concentrator for my son but we had trouble getting insurance to cover it because he was a minor. He also became so sick that he needed a high pulse and we couldn’t find a portable concentrator to accommodate his needs.

      I know what you are saying about the stroller. My son had to go to grade school pulling that…talk about unwanted attention!

      Anyone else here use the Oxy-Go? What has your experience been?

    • #22431
      Brittany Foster
      Keymaster

      @colleensteele I get how hard it is to get that portable oxygen without insurance approval. I currently have the Inogen machine and really do love it. It especially makes it easier for travel if someone is able to use the pulse flow style oxygen. It was SOOOO expensive though and I ended up setting up a GoFundMe account when I wanted to get one and raised enough money so I could have it after my surgery last May. I recently traveled to Philly and it was great to take with me and way easier to put in a backpack vs wheeling the tank behind me. Especially with walking from place to place it makes it more accessible.

    • #22861
      Denise K Thompson
      Participant

      Allot to digest. Thanks for info.
      I’m having a problem with my concentrator. I’m to use for sleep & had mishap a couple of nights ago, waking with water up my nose. Ordered a new trap, but used it last night with water drained & left my pulse ox on. I woke up about an hr in & saw my sats were 88. I’m around 93 when awake without o2 so feeling defeated. I had it at 4l, cont.
      Insurance wants me to go for cpap o2 titrate, but I don’t use cpap, so thought I’d just pay out of pocket for machine. My instruction manual was obviously translated from another language & not helpful…..poop.

    • #22868
      Brittany Foster
      Keymaster

      @dinky1952 it sounds like you might benefit from the CPAP. Were you tested for it for a sleep study? I would think that might be the next step that your doctors would want to talk about with you so that you could hopefully get the equipment that you need covered by insurance. I have been wearing Bipap and have experimented with it and using it the last month actually improved my exercise tolerance so if you have any questions just feel free to ask!

    • #22891
      Denise K Thompson
      Participant

      Brittany, I have had a couple of sleep studies. Any sleep apnea I may have is corrected by a tongue mouth device, but my sats still drop so o2 was ordered for sleep. It’s just impossible to get insurance coverage without a cpap/o2 titate study. I can’t tolerate cpap. Don’t mind the toungue thingie. But withe the tongue device & o2 cannula, I can’t afford a screw up in o2 delivery or my sats will go down. Just can’t take in enough air. Frustrating, so I stopped using my concentrator until I can figure out why I’m not getting good oxygen output from the concentrator. If I’m going to be hypoxic, I’d rather do it without my nose & mouth being blocked. (My last sleep study showed good results fron tongue device, not dental appliance, but o2 still dropping without interruptions in resp.)

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