O2 problems

[Guest guest]

Carol,

I think they make a humidifier to add moisture to the o2 tube.

Arlen

[Guest guest]

Carol,

My dad had the same problem with the bloody nose. The oxygen company

came out and added a humidifier (sp?) to his oxygen machine. It has

helped him. They also have ear protectors to add to the tubing.

Debbie

>

> I have a close relative with IPF. I have been reading the posts and

> have forwarded some great info to him. Thank you. Really wished I

> found this site years ago. Question: Has anyone had the problem of

> rashes on the cheeks from the tubing? Have tried different

materials

> to wrap around, but too awkward. Also, should be on higher O2 but

it

> dries him out and nose bleeds occur and its off the the er to stop

them.

> Thanks,

> Carol

>

[Guest guest]

Carol: How long has your relative had IPF or PF? Barbdander613 wrote: Carol,My dad had the same problem with the bloody nose. The oxygen company came out and added a humidifier (sp?) to his oxygen machine. It has helped him. They also have ear protectors to add to the tubing.Debbie>> I have a close relative with IPF. I have been reading the posts and > have forwarded some great info to him. Thank you. Really wished I > found this site years ago. Question: Has anyone had the problem of > rashes on the cheeks from the tubing? Have tried different materials > to wrap around, but too

awkward. Also, should be on higher O2 but it > dries him out and nose bleeds occur and its off the the er to stop them.> Thanks,> Carol>

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[Guest guest]

Hi, He was formally diagnosed about 4 years ago. He started the coughing in 1992. The year that my sister in law died and we thought it was a result of her death. Even the drs, suggested nental health care because they couldn"t find anything wrong. CarolBarbara Soice wrote: Carol: How long has your relative had IPF or PF? Barbdander613 wrote: Carol,My dad had the same problem with the bloody nose. The oxygen company came out and added a humidifier (sp?) to

his oxygen machine. It has helped him. They also have ear protectors to add to the tubing.Debbie>> I have a close relative with IPF. I have been reading the posts and > have forwarded some great info to him. Thank you. Really wished I > found this site years ago. Question: Has anyone had the problem of > rashes on the cheeks from the tubing? Have tried different materials > to wrap around, but too awkward. Also, should be on higher O2 but it > dries him out and nose bleeds occur and its off the the er to stop them.> Thanks,> Carol> Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

[Guest guest]

Is coughing in the first stages of this disease? Anyone know? My oxygen level is about 80 without oxygen and 95 with oxygen. My lung capacity is suppose to be 61%. Will somebody here please give me a diagnosis as to what stage of this disease I am in? BarbCarol Santi wrote: Hi, He was formally diagnosed about 4 years ago. He started the coughing in 1992. The year that my sister in law died and we thought it was a result of her death. Even the drs, suggested nental health care because they couldn"t find anything wrong. CarolBarbara Soice wrote: Carol: How long has your relative had IPF or PF? Barbdander613 wrote: Carol,My dad had the same problem with the bloody nose. The oxygen company came out and added a humidifier (sp?) to his oxygen machine. It has helped him. They also have ear protectors to add to the tubing.Debbie>> I have a close relative with IPF. I have been reading the posts and > have forwarded some great info to him. Thank you. Really wished I > found this site years ago. Question: Has anyone had the problem of > rashes on

the cheeks from the tubing? Have tried different materials > to wrap around, but too awkward. Also, should be on higher O2 but it > dries him out and nose bleeds occur and its off the the er to stop them.> Thanks,> Carol> Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

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[Guest guest]

Barb,

last I checked, the airlines do not allow you to

take your own O2 on a flight. It may have changed

as it is being addressed by the government and

airlines. As it was when I checked, you have to

use their O2 on the plane. That means that you

must carry your own to the plane, then change

over. The major airlines that I checked also

charge you $100 per leg of a trip so it gets

rather expensive. If you were taking a trip that

involved a plane change, this would involve four

planes in a round trip, costing you $400 just for

the use of their O2. This would get much for most

of us.

Also, someone asked about concentrators for trips

in your car; the O2 company that furnishes your

stuff can supply you with a smaller one, capable

of moving around, like into your car or a hotel

room, etc. I think they go up to 5LPM. Of course,

you would have to supply O2 in the car, as most of

these concentrators hook up to house current only.

Regards,

Bob in Utah

[Guest guest]

Hey Bob: Thanks for taking the time to answer my question..Now I have another one. I am pretty sure I will be flying delta non stop to and from orlando. Does Delta have oxygen on their planes? I can bring my tank on board, but I just can't use it while on board? Thanks bunches, BarbBob Holt wrote: Barb,last I checked, the airlines do not allow you to take your own O2 on a flight. It may have changed as it is being addressed by the government and airlines. As it was when I checked, you have to use their O2 on the plane. That means that you must carry your own to the plane, then change over. The major airlines that I checked also charge you $100 per leg of a trip so it gets

rather expensive. If you were taking a trip that involved a plane change, this would involve four planes in a round trip, costing you $400 just for the use of their O2. This would get much for most of us.Also, someone asked about concentrators for trips in your car; the O2 company that furnishes your stuff can supply you with a smaller one, capable of moving around, like into your car or a hotel room, etc. I think they go up to 5LPM. Of course, you would have to supply O2 in the car, as most of these concentrators hook up to house current only.Regards,Bob in Utah

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[Guest guest]

When I first went> on oxygen they gave me that big E tank to take when> I went out. Well,> that thing is real easy... NOT.. to drag around when> you are too weak to> spit.

I have always had the "E" tanks for the portable cart and have never had a problem with them. Have had the "B" tanks too, but they don't last very long. I guess to each his/her own.

kiss kiss,

~Ginger~

[Guest guest]

Barb,

Delta carries O2 on their larger planes; most of

the shuttle planes do not carry O2 for your use.

No, you cannot carry on your own O2 even if you

did not use it; someone must be able to take it

from you at the plane. This procedure is being

changed so check with Delta. The small

concentrators can be shipped as hold luggage or

carried on as carry-on, I believe. It is best, as

Joyce said, to arrange for a sister O2 company to

arrange the set-up at your destination.

Good luck and hope it works out so that you can

take your own now.

Regards,

Bob in Utah

[Guest guest]

Joyce,

You don't by any chance use Apria do you? We've

been having the same sort of problems.

Chris

--- janne5303 wrote:

> The suppliers that I have

> had are not

> helpful. I have dug for every piece of information.

> When I first went

> on oxygen they gave me that big E tank to take when

> I went out. Well,

> that thing is real easy... NOT.. to drag around when

> you are too weak to

> spit. It has been like pulling teeth to get info or

> help. Every time I

> call they have a new person working. I either get no

> information or

> wrong information. So, you just have to be a pest

> and keep seeking

> information. I am still finding out info right here

> on this site and I

> have been at this for six years.

>

> Be strong!

>

> Joyce

>

>

>

__________________________________________________

[Guest guest]

Ginger,

I believe it was Joyce who wrote about having a hard

time with the E tank, just clarifying.

Chris

--- TongueDancer2U@... wrote:

> In a message dated 3/28/2006 3:13:50 PM Central

> Standard Time,

> cmjonesohio@... writes:

>

> When I first went

> > on oxygen they gave me that big E tank to take

> when

> > I went out. Well,

> > that thing is real easy... NOT.. to drag around

> when

> > you are too weak to

> > spit.

> I have always had the " E " tanks for the

> portable cart and have never

> had a problem with them. Have had the " B " tanks

> too, but they don't last very

> long. I guess to each his/her own.

> kiss kiss,

> ~Ginger~

>

>

>

__________________________________________________

[Guest guest]

Get him some K-Y or Ayr. Mercy!

Joyce

Joyce, what is Ayr.?

kiss kiss,

~Ginger~

[Guest guest]

Sorry, but here I go again, Joyce. How have the Dr's kept your disease from progressing so fast. I think I just might have to inform my pulmonary dr. on how to do it.

Barb

Just thought I'd share this. My last CT scan 2 weeks ago showed no more progression at the time. My Rheumatologist and Pulmanologist got together and decided it was possibly the gram of cytoxin that I am taking monthly. They have decided to schedule me for another year of treatment. We shall see.

kiss kiss.

~Ginger~

[Guest guest]

Hey Joyce: If I understand this correctly you were diagnosed six years ago? What were your symptoms when diagnosed? How old are you now? Not being nosey but trying to figure out where I am with this disease. Hope your having a great day. Barb wrote: Joyce, You don't by any chance use Apria do you? We'vebeen having the same sort of problems.Chris--- janne5303 wrote:> The suppliers that I have> had are not> helpful. I have dug for every piece of information.> When I first went> on oxygen they gave me that big E tank to take when> I went out. Well,> that thing is real easy... NOT.. to drag around

when> you are too weak to> spit. It has been like pulling teeth to get info or> help. Every time I> call they have a new person working. I either get no> information or> wrong information. So, you just have to be a pest> and keep seeking> information. I am still finding out info right here> on this site and I> have been at this for six years.> > Be strong!> > Joyce> > > __________________________________________________

[Guest guest]

You may move on up from that scooter to a Harley soon!!!!

Hugs,

Joyce

WOOHOOO...and I look SOOOO good in leather. Thanks ((((Joyce)))).

kiss kiss,

Harley Momma ~Ginger~

[Guest guest]

Hey Bob: Thanks for the info. BarbBob Holt wrote: Barb,Delta carries O2 on their larger planes; most of the shuttle planes do not carry O2 for your use. No, you cannot carry on your own O2 even if you did not use it; someone must be able to take it from you at the plane. This procedure is being changed so check with Delta. The small concentrators can be shipped as hold luggage or carried on as carry-on, I believe. It is best, as Joyce said, to arrange for a sister O2 company to arrange the set-up at your destination.Good luck and hope it works out so that you can take your own now.Regards,Bob in Utah__________________________________________________

[Guest guest]

Barb - it definetly means that you need supplemental oxygen. Just because we are on oxygen doesn't mean we are in the last stages of our illness. Oxygen is a drug like many others....a normal oxygen level is 95% or greater. Are you on oxygen now? I hope so.

To answer your question....just because your oxygen level is 80% is not an indicator of where your disease is....my oxygen level is in the high 70's without oxygen if I'm walking around....I'm sure others are similar.

--Diane Quinlan dianequinlan@...

-------------- Original message --------------

Hey, you all: Is the fact that my oxygen level is 80% while not on oxygen a real bad sign or am I still in the first stages with 61% lung capacity? I am not a baby, give it to me point blank.

Thank Ya,

Barb

[Guest guest]

YES! > > > The suppliers that I have> > had are not> > helpful. I have dug for every piece of information.> > When I first went> > on oxygen they gave me that big E tank to take when> > I went out. Well,> > that thing is real easy... NOT.. to drag around when> > you are too weak to> > spit. It has been like pulling teeth to get info or> > help. Every time I> > call they have a new person working. I either get no> > information or> > wrong information. So, you just have to be a pest> > and keep seeking> > information. I am still finding out info right here> > on this site and I> > have been at this for six years.> > > > Be strong!> > > > Joyce> > > > > > > > > __________________________________________________>

[Guest guest]

Ginger,

I have a hard time getting those big old things(E tanks) in and out of the car. I like the M6 tank with the shoulder bag. You can hold it in your lap at the movie or stick it under your seat at dinner....fits in the basket at Walmart It is not lasting very long now that I am breathing faster. That is why I took Bob's (Bob in this group) advice and got a wheeled backpack. It is better for me than the E tank cart because I can put my purse, bible and two tanks in there. It has inline skate wheels and is so smooth. I am just so pleased. You are right...everyone has thier preferences. I am all for whatever keeps us moving and out there. I still think of you every day and remember your grief. You are such a role model. What a hero!

Stay strong,

Joyce >> > > When I first went> > on oxygen they gave me that big E tank to take when> > I went out. Well,> > that thing is real easy... NOT.. to drag around when> > you are too weak to> > spit.> I have always had the "E" tanks for the portable cart and have never > had a problem with them. Have had the "B" tanks too, but they don't last very > long. I guess to each his/her own.> kiss kiss,> ~Ginger~>

[Guest guest]

It's funny that you should mention Apria....before I became disabled, I worked as a pediatric nurse in home care....I worked near Philadelphia....I took care of some kids who needed IV antibiotics or some other treatment from us...but they had Apria for respiratory equipment...like ventilators and oxygen. I thought they were a terrible company....they had bad patient education....weren't available when patients needed them....I felt really bad for the patients. I told them when they complained about Apria that they had a right to choose another company if they weren't happy. Honestly, I'm surprised that they are still in business!

I have Neighbor Care....I picked them because I worked with them when I took care of home care patients....it was a little rocky in the beginning, but they did fix the problems I was having....they are responsive and the people who deliver my oxygen are very nice.

There are a lot of home care companies out there....but it seems like some of them just have medical equipment and just deliver it and then leave.

What companies are you guys using? This is a great place to talk about who we like and who we don't.

--Diane Quinlan dianequinlan@...

Joyce, You don't by any chance use Apria do you? We'vebeen having the same sort of problems.Chris

[Guest guest]

Barb,

I am 61. Was diagnosed with PF (secondary to Lupus which I have had since age 33) in 1997 at biopsy. I had been coughing horribly and having pleuisy type pain for 8 years by then. The docs have treated Lupus and have kept my fibrosis from moving so fast. However, I am in end stage (honeycombing and developing bronchiectasis, pft's poor). I was on oxygen, then got off for awhile after rehab, but within a year or so I had to go back on 24/7.

These have been good years. I wonder if I would have appreciated these years as much had I not been so seriously ill. It is a burden...all these contraptions...but just got to get up and get going every day.

You have a good attitude. Once you get the facts all straight with the docs, go through rehab and get a plan going....you are going to do great. I just know it. You don't seem like the kind of person who just lays down! I am not!

Hugs to you and hope for a good tomorrow!

Joyce> > > The suppliers that I have> > had are not> > helpful. I have dug for every piece of information.> > When I first went> > on oxygen they gave me that big E tank to take when> > I went out. Well,> > that thing is real easy... NOT.. to drag around when> > you are too weak to> > spit. It has been like pulling teeth to get info or> > help. Every time I> > call they have a new person working. I either get no> > information or> > wrong information. So, you just have to be a pest> > and keep seeking> > information. I am still finding out info right here> > on this site and I> > have been at this for six years.> > > > Be strong!> > > > Joyce> > > > > > > > > __________________________________________________>

[Guest guest]

Carol,

Please tell your brother-in-law that vasoline in

the nose can be very dangerous as it is petroleum

based. That and O2 do not get along and can

actually ignite a fire.

I've actually seen folks smoking while using O2.

My daughter works in a VA hospital and they

ocassionally get a burn patient that smoked and

sucked O2 at the same time.

Bob in Utah

[Guest guest]

I purchased the Nasal Ayr and LOVE it!! Got it online. It worked so well...

--Diane Quinlan dianequinlan@...

[Guest guest]

Hey Joyce: I don't mean to keep bugging you about this crazy disease, but I do have at least one more question here. My biopsy showed honeycombing. Does that mean I am in the last stages of this disease? Barbjanne5303 wrote: Barb, I am 61. Was diagnosed with PF (secondary to Lupus which I have had since age 33) in 1997 at biopsy. I had been coughing horribly and having pleuisy type pain for 8 years by then. The docs have treated Lupus and have kept my fibrosis from moving so fast. However, I am in end stage (honeycombing and developing bronchiectasis, pft's poor). I was on oxygen, then got off for awhile

after rehab, but within a year or so I had to go back on 24/7. These have been good years. I wonder if I would have appreciated these years as much had I not been so seriously ill. It is a burden...all these contraptions...but just got to get up and get going every day. You have a good attitude. Once you get the facts all straight with the docs, go through rehab and get a plan going....you are going to do great. I just know it. You don't seem like the kind of person who just lays down! I am not! Hugs to you and hope for a good tomorrow! Joyce> > > The suppliers that I have> > had are not> > helpful. I have dug for every piece of information.> > When I first went> > on oxygen they gave me that big E tank to take when> > I went out. Well,> > that thing is real easy... NOT.. to drag around when> > you are too weak to> > spit. It has been like pulling teeth to get info or> > help. Every time I> > call they have a new person working. I either get no> >

information or> > wrong information. So, you just have to be a pest> > and keep seeking> > information. I am still finding out info right here> > on this site and I> > have been at this for six years.> > > > Be strong!> > > > Joyce> > > > > > > > > __________________________________________________>

[Guest guest]

Sorry, but here I go again, Joyce. How have the Dr's kept your disease from progressing so fast. I think I just might have to inform my pulmonary dr. on how to do it. Barbjanne5303 wrote: Barb, I am 61. Was diagnosed with PF (secondary to Lupus which I have had since age 33) in 1997 at biopsy. I had been coughing horribly and having pleuisy type pain for 8 years by then. The docs have treated Lupus and have kept my fibrosis from moving so fast. However, I am in end stage (honeycombing and developing bronchiectasis, pft's poor). I was on oxygen,

then got off for awhile after rehab, but within a year or so I had to go back on 24/7. These have been good years. I wonder if I would have appreciated these years as much had I not been so seriously ill. It is a burden...all these contraptions...but just got to get up and get going every day. You have a good attitude. Once you get the facts all straight with the docs, go through rehab and get a plan going....you are going to do great. I just know it. You don't seem like the kind of person who just lays down! I am not! Hugs to you and hope for a good tomorrow! Joyce> > > The suppliers that I have> > had are not> > helpful. I have dug for every piece of information.> > When I first went> > on oxygen they gave me that big E tank to take when> > I went out. Well,> > that thing is real easy... NOT.. to drag around when> > you are too weak to> > spit. It has been like pulling teeth to get info or> > help. Every time I> > call they have a new person working. I either

get no> > information or> > wrong information. So, you just have to be a pest> > and keep seeking> > information. I am still finding out info right here> > on this site and I> > have been at this for six years.> > > > Be strong!> > > > Joyce> > > > > > > > > __________________________________________________>