Being mobile on high flow

May 16, 2008

I am wondering (Joyce and Gwynne, I am sure that you have an answer to this question) what you used when you wanted to go outside the home. If there a mobile device that has a higher flow than 6? I need 8 in order to keep my oxygen level above 90 and I sure am not ready to sit at home yet. Diane IPF June 07New Brunswick, Canada

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May 16, 2008

Diane,

I use the Companion T liquid tanks which go to 15L. One tank does me about 1 hour 45 minutes at 8 - 10L. I take two of these. I can hang two on the handles of my wheelchair or I have a cart that I can push. I also take several E tanks in the car for back up in case I stay longer than 3 hours or so. (and we all know sometimes that happens with docs and testing). I have a bag for the E tank that fits on the back of my wheelchair, also.

So, if I think it is going to be a long trek, I have the E tank and two liquids on the back of my wheelchair. Of course you have to have someone to push....unless you have all the electric wheelchair lifts, etc.

It is a fiasco every time I leave the house. On top of all that I have a medicine bag to pack which has supplies for my Flolan infusion. Unreal. But, we do it and have a good time. Today, we went to Home Depot, a furniture store and out to eat. I am pooped....but it is much better than being stuck in the house!

Nope, Diane, don't give in to staying home. I push, push, push and keep upright as much as possible. Gets more and more difficult, but onward and upward.

Today I walked into the restaurant instead of using the wheelchair. I am having trouble getting my legs back. I hate the wheelchair. I feel somehow diminished in it. Hard to explain. But, whatever it takes!

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

>> I am wondering (Joyce and Gwynne, I am sure that you have an answer to this question) what you used when you wanted to go outside the home. If there a mobile device that has a higher flow than 6? I need 8 in order to keep my oxygen level above 90 and I sure am not ready to sit at home yet.> Diane > IPF June 07> New Brunswick, Canada> > > __________________________________________________________________> Ask a question on any topic and get answers from real people. Go to Yahoo! Answers and share what you know at http://ca.answers.yahoo.com>

May 16, 2008

Thanks for the info, Joyce. I am assuming that the E tanks are liquid as well? I saw my pulmo yesterday and I do not have pulmonary hypertension. That was actually the bad news. My disease is apparently very active and on a rampage. He says the only option is to try the course of medications (prednisone, imuran, NAC). He is not hopeful but we are going to try for 6 weeks and see if it slows down the progress. If not... no other options. I hope this finds you as well as you can be. Diane IPF June 07New Brunswick, Canada

Re: Being mobile on high flow

Diane,

I use the Companion T liquid tanks which go to 15L. One tank does me about 1 hour 45 minutes at 8 - 10L. I take two of these. I can hang two on the handles of my wheelchair or I have a cart that I can push. I also take several E tanks in the car for back up in case I stay longer than 3 hours or so. (and we all know sometimes that happens with docs and testing). I have a bag for the E tank that fits on the back of my wheelchair, also.

So, if I think it is going to be a long trek, I have the E tank and two liquids on the back of my wheelchair. Of course you have to have someone to push....unless you have all the electric wheelchair lifts, etc.

It is a fiasco every time I leave the house. On top of all that I have a medicine bag to pack which has supplies for my Flolan infusion. Unreal. But, we do it and have a good time. Today, we went to Home Depot, a furniture store and out to eat. I am pooped....but it is much better than being stuck in the house!

Nope, Diane, don't give in to staying home. I push, push, push and keep upright as much as possible. Gets more and more difficult, but onward and upward.

Today I walked into the restaurant instead of using the wheelchair. I am having trouble getting my legs back. I hate the wheelchair. I feel somehow diminished in it. Hard to explain. But, whatever it takes!

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

>> I am wondering (Joyce and Gwynne, I am sure that you have an answer to this question) what you used when you wanted to go outside the home. If there a mobile device that has a higher flow than 6? I need 8 in order to keep my oxygen level above 90 and I sure am not ready to sit at home yet.> Diane > IPF June 07> New Brunswick, Canada> > > ____________ _________ _________ _________ _________ _________ _________> Ask a question on any topic and get answers from real people. Go to Yahoo! Answers and share what you know at http://ca.answers. yahoo.com>

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May 16, 2008

Diane, Don't give up! I am new here also. Reading your post, I realized that you are probably in a panic. You don't have to accept that there are no other options, I feel. I'm hoping that a run of prednisone will slow things down. It's a very good thing that you don't have pulmonary hypertension. Hang in there and I'll be here to help you with prednisone issues if necessary. I have read a book and everything else I can find (no doctor will tell you the nitty gritty). Diane wrote: Thanks for the info, Joyce. I am assuming that the E tanks are liquid as well? I saw my pulmo yesterday and I do not have pulmonary hypertension. That was actually the bad news. My disease is apparently very active and on a rampage. He says the only option is to try the course of medications (prednisone, imuran, NAC). He is not hopeful but we are going to try for 6 weeks and see if it slows down the progress. If not... no other options. I hope this finds you as well as you can be. Diane IPF June 07New Brunswick, Canada Re: Being mobile on high flow Diane, I use the Companion T liquid tanks which go to 15L. One tank does me about 1 hour 45 minutes at 8 - 10L. I take two of these. I can hang two on the handles of my wheelchair or I have a cart that I can push. I also take several E tanks in the car for back up in case I stay longer than 3 hours or so. (and we all know sometimes that happens with docs and testing). I have a bag for the E tank that fits on the back of my wheelchair, also. So, if I think it is going to be a long trek, I have the E tank

and two liquids on the back of my wheelchair. Of course you have to have someone to push....unless you have all the electric wheelchair lifts, etc. It is a fiasco every time I leave the house. On top of all that I have a medicine bag to pack which has supplies for my Flolan infusion. Unreal. But, we do it and have a good time. Today, we went to Home Depot, a furniture store and out to eat. I am pooped....but it is much better than being stuck in the house! Nope, Diane, don't give in to staying home. I push, push, push and keep upright as much as possible. Gets more and more difficult, but onward and upward. Today I walked into the restaurant instead of using the wheelchair. I am having trouble getting my legs back. I hate the

wheelchair. I feel somehow diminished in it. Hard to explain. But, whatever it takes! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 >> I

am wondering (Joyce and Gwynne, I am sure that you have an answer to this question) what you used when you wanted to go outside the home. If there a mobile device that has a higher flow than 6? I need 8 in order to keep my oxygen level above 90 and I sure am not ready to sit at home yet.> Diane > IPF June 07> New Brunswick, Canada> > > ____________ _________ _________ _________ _________ _________ _________> Ask a question on any topic and get answers from real people. Go to Yahoo! Answers and share what you know at http://ca.answers. yahoo.com> All

new Yahoo! Mail - Get a sneak peak at messages with a handy reading pane.

May 16, 2008

Thank you, . I am not panicking much and I will be optomistic about the drugs. I am very realistic though and believe in facing things head on. My doctor has been very thorough and I think that I am aware of any potential problems that might come my way. When something does crop up that I am unsure of, someone on the board always has an answer. Welcome to the group but so sorry that you need to be here. Diane IPF June 07New Brunswick, Canada