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Do You Use Oxygen Tanks or a Portable Concentrator?
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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.
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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!
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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!
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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!
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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-
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
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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.-
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 !
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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.
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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.
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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
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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 .
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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.-
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. -
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
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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-
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.
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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.
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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.
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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! -
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. -
@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!
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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
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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. -
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.
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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! -
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.
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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. -
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
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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 -
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!
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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!!!
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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? -
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.
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