Re: Maintaining Quality of life at High flow rates

[Guest guest]

Hi , A real good website to check out is: www.portableoxygen.org. I am on 4 liters at rest and then push it up to 5-6 when active. I read on this site that only 5% of high liter flow oxygen users are active!!! I'm with you. I want to keep on going and if I need more oxygen so be it. I had a friend who had a helios unit and he Y'd the tubes together. He was coming out to dinner with us on 12-13 liters. He had a huge mother tank in his car that his sister/girlfriend would fill for him as needed. I don't know if this helps or not. We have to be advocates for ourselves. Who's your oxygen provider? The helios unit only goes up to 4 liters / I have an Escort liquid oxygen - it goes up to 6 liters. There is something out there called a marathon which I think goes up higher and is a bit heavier at 8lbs.

Leanne wrote: New Member here and looking for answers. As I have recently had to increase my flow rate to 8 L/min, I find out that the "portable" devices do not accomidate this higher flow rate. Surely I am not the only one that is on a over 6 L/min rate! How do those of you on a high rate manage to maintain your quality of life (or are you no longer able to)? Is there a provider that has a higher flow rate portable unit to allow a person to still do shopping, go to doctors appt's, socialize? Would appreciate ideas to help cope. O-2 provider has no clue. Nor does my doctor or hospital pulmonary department. Thanks!

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[Guest guest]

I am on 6L and use Caire portable Stroller tank. They have tanks that go up

quite high. Also, does anyone have trouble with constant Larngitis. Wonder

if it's because of the high flow 24/7. chendrick@...

Maintaining Quality of life at High flow rates

> New Member here and looking for answers. As I have recently had to

> increase my flow rate to 8 L/min, I find out that the " portable "

> devices do not accomidate this higher flow rate. Surely I am not the

> only one that is on a over 6 L/min rate! How do those of you on a

> high rate manage to maintain your quality of life (or are you no

> longer able to)? Is there a provider that has a higher flow rate

> portable unit to allow a person to still do shopping, go to doctors

> appt's, socialize? Would appreciate ideas to help cope. O-2 provider

> has no clue. Nor does my doctor or hospital pulmonary department.

> Thanks!

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[Guest guest]

Have a 45L reservoir in garage to fill the Caire Liquid Stroller tank from.

Once again they do have the higher flow units. chendrick@...

Maintaining Quality of life at High flow rates

> New Member here and looking for answers. As I have recently had to

> increase my flow rate to 8 L/min, I find out that the " portable "

> devices do not accomidate this higher flow rate. Surely I am not the

> only one that is on a over 6 L/min rate! How do those of you on a

> high rate manage to maintain your quality of life (or are you no

> longer able to)? Is there a provider that has a higher flow rate

> portable unit to allow a person to still do shopping, go to doctors

> appt's, socialize? Would appreciate ideas to help cope. O-2 provider

> has no clue. Nor does my doctor or hospital pulmonary department.

> Thanks!

>

>

>

>

>

>

>

>

>

>

[Guest guest]

, I'm finding that things can change faster than I figered. Did 6 minute walk in september. That got me on ox. That was without ox. Just barely qualified, border line 90. Did 6 min yesterday with 2 lt ox and had to stop and rest recover at 3 min. Down below 85. Which tells me I need to carry the pulse ox meter when I go out so I can try to keep the ox level at 90 or above. I just got the ox meter a few weeks ago and realize how important it is to know what your ox levels are doing under different circumstances. I can take the ox off for awhile and start to get getty headed. That's scary. This tells me I am losing ground and will have to raise the ox for exercise. Would you care to share your story on how you arrived at your ox level. Grey

Maintaining Quality of life at High flow rates> New Member here and looking for answers. As I have recently had to> increase my flow rate to 8 L/min, I find out that the "portable"> devices do not accomidate this higher flow rate. Surely I am not the> only one that is on a over 6 L/min rate! How do those of you on a> high rate manage to maintain your quality of life (or are you no> longer able to)? Is there a provider that has a higher flow rate> portable unit to allow a person to still do shopping, go to doctors> appt's, socialize? Would appreciate ideas to help cope. O-2 provider> has no clue. Nor does my doctor or hospital pulmonary department.> Thanks!>> >>>>>>>>

[Guest guest]

Diane, my tx Dr. told me he has had patients on 14 L go figure that. I couldn't believe it. Peggy

What is a tx Dr ?

kiss kiss,

~Ginger~

[Guest guest]

I have the Caire Stroller portable, which is continous. They come once a week to fill my 45L reservoir. Also, I am on Hospice since April 2005, nearly a year. Looking forward to living longer. Go a lot. Have 4 portables & at 6L they will last me all day. Was first diagnosed in Jan. 2000.

Maintaining Quality of life at High flow rates

- what kind of an oxygen system are you on? I have the Helios marathon portable...they deliver a base tank about every 2-3 weeks and I fill my portable from that. I'm on 4 liters, but don't think it's really enough....the Helios only goes up to 4 liters...so I wondered what is out there if you need more.

--Diane Quinlan dianequinlan@...

[Guest guest]

Hello , Good to hear from you. Where do you live? It's none of my business. I would like to feel connected to this group as we are all in the same boat. I am a retired railroad brakeman and conductor and have lived in the same area since 1942. Worked on rr since I was 19. I have lived in and around Hamlet, N.C. All of my life. Most of it anyway. We lived on a small farm untill I was 8. My Dad got a job on the rr and we moved to town. I loved the farm life and missed it a lot. Would go back and visit with kin folks every chance I got. This oxygen stuff is going to be changing for me as I was put on 2L in oct 05 as needed and I already am needing more. I am on it 24/7 now and my pulse ox meter tells me I need to increase it with activity. A close cousin had help from Hospice and told me they were good to him. Hang Tough and talk to us. We need each other. Grey ----- I need people I can talk to ---- Friends and relatives talk around but not about what we are going through.

Maintaining Quality of life at High flow rates

- what kind of an oxygen system are you on? I have the Helios marathon portable...they deliver a base tank about every 2-3 weeks and I fill my portable from that. I'm on 4 liters, but don't think it's really enough....the Helios only goes up to 4 liters...so I wondered what is out there if you need more.

--Diane Quinlan dianequinlan@...

[Guest guest]

The Helios only freezes when you are filling it. Liquid oxygen is normally a low temperature...they told me to be sure not to touch the parts that connect when I fill it because it would "burn" me because it is so cold. I usually have a frosty patch on the bottom of my helios portable tank when I carry it around. I should know better than to wait til I'm getting ready to leave the house and then fill my portable. Sometimes I have to leave it on continuous for 30-45 minutes until it thaws out and then works properly. I'm getting oxygen, but not the pulse method. I really prefer the pulse to the continuous.

--Diane Quinlan dianequinlan@...

Go figure. All I can say is God is good. I hope you don't have to increase to much. What do you do when your helios freezes up and your away from home?

[Guest guest]

Dear Diane:

Hi! And thanks for the reply. Sorry I did not get right back to you,

I am new to this computer stuff and did not realize how fast these

messages pile up. I could not use the helios system. It would not

trigger for my breathing rythem. But you do not need to worry about

getting more O-2 down the road. I am currently on 9L and using 2

units " Y'd " together. But I understand that Caire Strollers can go up

to 15 L/min. I am currently looking into that. I would rather tote

one tank than 2! Take Care.

[Guest guest]

, What kind of ox machine are you on at home? Grey

Re: Maintaining Quality of life at High flow rates

Dear Diane:Hi! And thanks for the reply. Sorry I did not get right back to you, I am new to this computer stuff and did not realize how fast these messages pile up. I could not use the helios system. It would not trigger for my breathing rythem. But you do not need to worry about getting more O-2 down the road. I am currently on 9L and using 2 units "Y'd" together. But I understand that Caire Strollers can go up to 15 L/min. I am currently looking into that. I would rather tote one tank than 2! Take Care.

[Guest guest]

Are people on high levals of O2 active at all? My O2 service man said only one client they serve is on 6L and he is at complete bed rest.

kiss kiss,

~Ginger

[Guest guest]

Wrong, yes we are active, Am at 6L-24/7. Have 4 portables and go whenever I can. Love those electric carts at K-Mart & Wall nMart. Travel to Casino sometimes. Thinking of having a garage sale if my husband will help again as he did a few years ago. Like to get rid of dust catchers. My advice to any of you is keep working as long as you can. I was diagnosed in 2000 and worked until March 2004. Also was put on Hospice in April 2005. Am still kicking. Made it thru the winter and looking forward to summer. Good Luck

Re: Re: Maintaining Quality of life at High flow rates

Are people on high levals of O2 active at all? My O2 service man said only one client they serve is on 6L and he is at complete bed rest.

kiss kiss,

~Ginger