Continous oxygen

[jen-cueva]

Hi @sharon7651, great question. I am NOT on continuous oxygen. But I do have an Inpogen and also have smaller portable tanks that I carry in my backpack. I am on 3-4 liters. I use a conserved on my M tank that is in my backpack. With that in it, it only allows me about 2 hours of use. The D tanks are larger, and because your RT said you would do better on continuous versus pulse, the D tanks would probably last at max 2 hours. Have you tried to see how long one lasts?

I know that several here have also mentioned that they do better on the tanks versus the Inogen. I would certainly do more research and see what works for you before shelling that money out. Is there a way you can rent an Inogen from your O2 supplier for a few days to see if it may work? I would suggest that. I rented a portable oxygen machine from my O2 supplier to travel when I tried it out.

The Inogen is a little lighter to tote with me than my small M tanks, but the D tanks will be a tad heavier than the Inogen. Let me know if this helps, and also, some others should chime in about their experiences.

[Cindy]

I have been on oxygen for 6 years, through the VA, on the tanks. most of the were c tanks,
250 litters, I was on 3 litters. CONS: heavy and bulky. PROS: they last longer.
About 3-4 months ago, I had to increase to 4 litters, the 250 litters run out out too fast now. I have to use the larger tanks now, They are really heavy. I have finally been able to get the Inogen and I love it. However, their are Pros and Cons to everything.
I speak through hands on experience. The best advice I can give is: 1. You need to talk with those, that has experienced both the tanks and Inogen. Why? Because we understand and know what it feels like. No body else does, because they have never experienced it, they mean well, but, if you have never experienced it, how can they understand?
2. Go see your Pulmonologist and talk to him/her. 3. Do your own research.
If you choose to try Inogen and you do not like it, you can always go back to the tanks.
If you choose to stay with the tanks, that is fine, you can always to to Inogen later if you want. REMEMBER: It is YOUR CHOICE. There is NO RIGHT or WRONG.

[jen-cueva]

Hi @cindy2021, well said. Just like any other PH treatment, our bodies react differently. Each one of us has different requirements for oxygen. Some are fortunate not to need oxygen.

So, yes, doing what works best for us is the best advice that I can offer. We share here to help others, not to be right or wrong. As you mention, there is no right or wrong with oxygen; it is all dependant on each person.

Let’s not forget what our PH team and /or respiratory may offer.

You mentioned the nosebleeds earlier; I am so happy to be off Adempas. I was having horrible nosebleeds with that. I can’t imagine your bleeds with Adempas and Xeralto.

Do your doctors check your blood counts often? I know that while on Adempas, my hemoglobin and hematocrit both dropped a bit. I am still trying to get mine back to my norms.

[John Caraway]

With continuous you’ll go thru tanks fairly quickly. I get about 4 hours on pulsed

[Linda Brandt]

Hi, Jen, This is Linda Brandt and I have used tanks but I now have an Inogen G4, which I prefer over tanks. I can count on it providing O2. I was put on oxygen on December 1, 2017 after enduring that blood test from hades when in the hospital with suspected Bradycardia. I suspected it after monitoring my heart rate with my oximeter. While there, they did a Cat Scan and found a blood clot somewhere, and after reading the results of that, put me on Xyrelto. (pricey!).

how I got on O2? Somehow, oh yes, the ABG test. They found that I had low blood oxygen level, so here came a medium-size tank into my room and I was introduced to a life of wearing O2. They are too big for a backpack so it was in tow. But, after a few years of that and arriving at a service on a Friday evening towing an empty tank, I decided I had had enough of tanks, both empty and filled, so with a surprise gift from my Mom one Christmas, I ordered the G4. It’s pulse 1-3 and I love it. Now, I see (?) my Pulmonologist next year, and I’ll see what he thinks about the Inogen pulse vs the tanks. Oh, by the way, Inogen has come down in price since I bought mine.

[jen-cueva]

Hi @hamjam43, thanks for sharing. I also know that the Inogen’s have come down since we purchased mine, too.

Ughh, the dreaded ABG. I had one painful experience with this and have hated them since hehe.

Yes, those large tanks are such a hassle to lug around when you are struggling to breathe as it is.

I think that if you are doing OK with the Inogen, it is working well for you. Some notice that that have better results with the tanks. We are all different, so personal preference counts, too. These are to help us not hinder our lives anymore.

Do you mention blood clots, is your PH caused by blood clots? Were you a candidate for PTE surgery? I hope that you are staying well.

[Cindy]

Yes, I filled with Fluid in 2015 and been on Oxygen ever since, multiple blood clots in both lungs, first it was coumadin, then a few months later Xarelto (rivaroxaban). I have been on tanks, until Inogen 1 week ago. I love it.

[jen-cueva]

Hi @sharon7651, how are things going with you now? Have you found an oxygen source that works best for your needs?

@hamjam43, how are you doing now after the blood clots? Are you still taking Xarelto?

[Teri]

Hi!

Currently, I am on 6 liters of continuous oxygen at rest and 8 liters with exertion. Does anyone know if there is a portable concentrator that has continuous flow at 6 liters? I have an Imogen One G3 that is a pulse flow up to 5 liters which isn’t enough oxygen. I have to change my e-tanks every 45 min….so I would love to find a battery-operated portable with continuous flow for ease in transport.

Thanks!
Teri

[jen-cueva]

Hi @terilewis,
Thanks for your update. I that the Sequal Eclipse offers the highest continuous flow. When I had one, it was bulky, used, and not updated. That was 5 years or longer. I am unsure of which others are available. It seems like someone could make a POC specifically for high flow continuously.

I know my Inogen batteries don’t last long, and I am on 5 liters currently. I am hoping to eventually get back to 3-4 liters as I was pre-COVID.

Otherwise, how are things going for you?

[Rickie Daniels]

The Eclipse 5 autosat only has 3 liters continuous, and  it offers 1-9 pulse dose levels.

Check out the following:

http://www.pulmonarypaper.org

http://facebook.com/Pulmonary Paper

The Ryan Report guide details what each of the POCs on the market produce as far as how much 02 you are getting.  The Pulmonary Paper is now available on line quarterly for free.

Rickie 8/10/21

 

 

[Cindy]

Still on Xarelto (rivaroxaban). Will be for Life.

[Colleen]

@terilewis that is a good question. I hope one of our members can advise you on this. When my son’s flow increased to a high number there were no portable concentrators that could provide what he needed, but that was over 6 years ago. Plus he was a pediatric patient and options for them are far less.

[Sandra Greenberg]

I have a question, what do you all on O2 do to keep your noses from being sore? I’m on 5 continuous. I’ve used Ayr, Xlear, saline spray, and Flonase. My nose is always stuffy and sore. I was using water between my concentrator and line but my line that I drag around my house is 100 ft. so the humidity doesn’t seem to help.

[Colleen]

@zoemama excellent questions. I know this is a problem that many experience. Here is a link to a previous conversation about this that might help you. https://pulmonaryhypertensionnews.com/forums/forums/topic/do-you-use-a-humidifier-with-your-home-oxygen-concentrator/

Here is a link to what is available through Amazon. I don’t have personal experience with the products listed but maybe other members can provide a review of a few of them. https://www.amazon.com/nasal-moisturizer-oxygen-users/s?k=nasal+moisturizer+for+oxygen+users

And here is a link to an article I found. It sounds like you are doing much of this already but maybe there are a few things you haven’t tried that you will find helpful.
https://blog.lptmedical.com/how-to-make-supplemental-oxygen-more-comfortable

Do you use a humidifier with your home oxygen concentrator?

[Brett C Scogin]

Hi Sandra,

I have been on 7 liters of oxygen since 2016,  actually more prior to that.   At. One point they had me on 12 liters and would bring liquid oxygen every 3 days and the tanks would freeze up.

The data on tests say after 50’ of high flow tubing the amount of oxygen your getting is reduced.

I had to put my machine near the center of house and now have to buy the old style humidifier bottles from Home Medical direct or Amazon, because the ones Apria sends with the black caps run out to fast.

I used saline spray and nasal mist when I used to get bloody noses.  At That time especially after a meal I get a bloody nose.

Turns out it was caused by the 40 Mg of Revatio 3 times daily.

I on Adempas now and not had a bloody nose since.

in a larger home I can see ones problem with only a 50’ hose.

Doubt that helps, but if oxygen output would decrease I wonder if the humidifier on tubing is decreases also?

[jen-cueva]

This is the humidifier bottle that @pte1941 wants to share. I also use nasal gel, AYR, as well as a saline wash if needed. I get my humidifier bottles from my DME company, Apria.

Please make sure to use distilled water in the humidifier bottles.

I have been on oxygen for almost 17 years. It seems we learn as we go, huh?

Brett, I know that both of those medications can cause bloody noses. If it is continuous or more than usual, please report it to your PH team.

Thanks again for sharing.

[jen-cueva]

Hi @zoemama, @colleensteele offers some excellent resources. I also have 100 ft of tubing and use a humidifier bottle. I am now on continuous oxygen, so even use my Ayr gel, I have not found anything that helps a ton.

I am also on 5 liters, but the Ayr and saline spray is not as much help as I would hope. I wish I had better answers; I often get nosebleeds too. Thankfully, they are not as bad as when I first got back home.

I did not realize that Amazon had so many options. I want to remind you to be careful if you see Afrin and other nasal sprays containing decongestants. Most of us with PH are told to stay away from decongestants.

If you do find any new tricks that help, please do share. In the meantime, I use what I have to help in some little way.

[Colleen]

Thank you @jenc and @mendo-bruce for sharing your experiences and important reminders! Jen pointed out the decongestant concern. I should have added to discuss any kind of products with your doctor before making a purchase. It goes in line with what @mendo-bruce said about what works for one may not work for another. Same is true in regard to, what is safe to use for one person might not be safe to use for another.

[Cindy]

Nosebleeds happen mainly because the inside of nostrils become dry and irritated because of the oxygen. Use Plain, Original vaseline, just a touch inside the nostrils, put moisture back in, no more nosebleeds.

[Mendo Bruce]

1. The Sequal is still the most oxygen available in a portable (3lpm). There are one or two other brands that also output 3lpm continuous but they all are bulky and weigh 18lbs+ like the Sequal.

2. NO pulse only machine outputs more than 1.2 lpm, No Inogen or any other brand! The numbers are NOT liters per minute! Some people can stay saturated with a pulse bolus, but many can not. If you are dropping into the 80’s with your top exertion, you are not being kept saturated. You should NEVER have to slow down for your oxygen source.

3. I have found a (new to me) spray for Oxygen induced dry nose. Hyalogic’s HYLAMIST. It is Hyaluronic Acid in a saline gel base. Hyaluronic Acid is used in skin moisturizers and wrinkle creams because it can absorb 1000 times it’s weight in water. This is in a saline solution designed specifically for the nose. BTW, there are currently clinical trials testing hyaluronic acid for COPD but don’t inhale it, just spray it in your nose.

[jen-cueva]

Thanks for sharing such excellent information, @mendo-bruce. I know that Sequal that I had years ago was so bulky and difficult for me to tug along, lol

You also share an important reminder, what works for one, may not for another. I know some who say the regular old tanks are the only thing that keeps them saturated.

I need to check on that spray. Did you purchase yours on Amazon? I will look and see if I find it. Thanks again.

I hope that you are keeping busy and safe.

[Cindy]

I have had my G3 Inogen for 1 week, it goes from 1-5lpm, the battery lasts for about 4 hours.

[jen-cueva]

I just wanted to share that I have been using, Hyalogic’s HYLAMIST. Thank you @mendo-bruce for sharing this with us.

I’ve been using it for almost 2 weeks, along with my humidifier bottle. I have noticed less dryness and I’ve only had 1 nosebleed since starting this.

This shows how sharing our experiences, we help others. I’m grateful for each of you.

[Jill Upshaw]

Glad to know. I hate the nosebleeds and with Adempas and Xarelto, I have plenty especially post COVID. But bleeding is better than clotting for sure.

[Rickie Daniels]

Please read Mendo’s description of what amount of 02 the Inogen  really produces — those are SETTINGS only NOT liters.  This is misread by almost everyone because everyone wants to carry five pounds and be “free to move around”.  You are misleading yourself if you do this.  I loved my Inogen when it was sufficient, rode my horse with my backpack and was so happy to continue on until….then reality set it.  Now I drag my Eclipse 5 auto and have to be satisfied with that.  I can carry along extra batteries and a charger and be well equipped for a good outing.  I did have to have my car electrical system modified to accommodate the Eclipse, it doesn’t want to share with anything else.  Spend money wisely on 02 equipment.

[jen-cueva]

Hi @indihomaaol-com, thank you for sharing your experience with the inogen. I, too, have an Inogen. I do notice that I am getting less air than with my home concentrator or small carrying tanks. I use all of those.

Is the Eclipse 5 newer? Is it any smaller than the older versions. I had one of the first ones, and it was so much for me to drag along. But I used it until it died on me.

I see that ride horses. Do you continue this? @dawnt also enjoys horses when she can spend time with them. Dawn, have you continued to volunteer with the horses?

[Rickie Daniels]

Hi Jen,

The Eclipse starts at 18 pounds, add a pound for the cart and bag, and 3 more for an extra battery.  Somewhere in the neighborhood of 25 pounds give or take.  I guess you have to choose — weight or breathing??  Insufficient oxygen is not a good thing.

Rickie

 

[jen-cueva]

Hi @indihomaaol-com, I agree, breathing is a priority. I have not looked into the new Eclipse. They think of it as a luxury item. But I fought for years to get my insurance to assist with my POC. As you can imagine, I offered a not-so-nice response to that.

I am grateful to have your input on the newer Sequal Eclipse. With the older one that I had. I did have the roll cart that I lugged around.

Before my COVID last year, the Inogen was OK as I was not on oxygen 24/7/ Now I am and hoping to get back to my previous baseline soon. But the Inogen is not the best for continuous flow or higher liter flow.

Again, thanks for your valuable feedback.

[Rickie Daniels]

I thought I had responded, but missed the submit button.  Duh.  I found that if I put my Eclipse in a pet stroller (secured with a belt to the side) it was almost like being free again.  So much easier to do.  With our 90+ weather I’ve given up outside for the time being.  Plus the breathing isn’t so great right now.

I’m with you — I loved San Diego and we got to stay there a whole 11 months before shipping out all over again.  On to Iceland.  That’s what a promotion does for you…..

Rickie 8/5/2021

[Jill Upshaw]

My insurance pays for both but I know in the future they may stop altogether. Because of that I went to Direct Home Medical and bought a home concentrator and I am also going to be buying an Inogen. My portable one has a double battery but on 5 Ls , it only last 3. DHM has some really good prices and service. They also have discount coupons and use Affirm and take credit cards. You might want to shop on their site and see how to proceed. I do much better on continuous but I want the portable to keep as active as I can. I got the Inogen 5 with a double battery down to 2300.00 after discounts. Most places was over 3k for the 5 with a double battery or else they want to sell you a used one. Good luck.

[Rickie Daniels]

You all should know that you can buy direct from Inogen.  Another source with good prices is OxiMedical, they have a great sale on right now.

Vaseline is a petroleum product — not a good blend with 02 which is flammable.

Rickie 8/5/2021

[Colleen]

Hey PHriends, @vanessavaile sent me an update and asked me to share it with all of you. Let’s do what we do best – offer our support!

I’m coming off the other side of a major set-back, which I’ve been meaning post about but I run out of mental bandwidth easier lately. I’m particularly keen to share oxygen notes with Jen. Setbacks seem to happen before we realize what they are; whereas recoveries are long and slow. Please share my update, such as it is, with the forum.

[jen-cueva]

Hi @vanessavaile. I’m sorry about this significant setback that you’ve been going through. So happy to hear that you are coming off the other side. Recoveries are undoubtedly long and slow when dealing with PH.

What specific oxygen questions do you have? Please let us know how you’re doing when you feel up to it. I know recovery sucks all the spoons we have and then some.

I’m sending you hugs, prayers, love, and light from San Diego.

Thanks for sharing the update for Vanessa, @colleensteele.

[jen-cueva]

I wanted to share this brief update from @vanessavaile. It seems she responded using an update instead of a reply. Here update is below.

@jenc and @colleensteele, I’ve been starting comments, not finishing because I wasn’t quite sure where or on which reply to start since they’re related but don’t quite fit the threads. Jen’s account of gradually working back to previous oxygen use and exercise levels after being totally worn down by covid and having to start over from scratch resonated with me and stuck in my mind.

At the beginning of September I experienced an almost overlapping series of exhaustion episodes — an unfortunate convergence of the ill-advised, inadvertent and unavoidable — brought me back to ground zero. I’m working my way back slowly, sometimes losing ground, and still not as far along as I thought when updating Colleen.

[jen-cueva]

Oh dear @vanessavaile, again, my heart aches for you because it resonates with me. I can’t believe only 3 years ago this month; I was in the ICU with COVID PHighting for my life! I started a column about this but haven’t been back to finish it yet, but hoping to have it done by early December at the latest.

Your comments remind me that we experience setbacks, and it takes a lot of work and energy to push through. I recall the many days of frustrations when I wasn’t where I thought I should be. Then, my supportive family and friends(PHriends) reminded me how far I had come. Baby steps are what I try to remind myself of. One day at a time, my PHriend.

Because of your post and updates, you’ve inspired me to push through the brain fog that I continue to struggle with and finish that column for others to read. I’m sending you positive thoughts, hugs, and light that you will take one day at a time, baby steps. You got this!