Oxygen problem

[JennifersHope]

I was intubated and then flown to USC on Thanksgiving. I was extubated a few o2 days later and am now in a regular room, for the first few days after being extubated I had to go on helium oxygen to help keep my sats up,

At rest with a full mask on they can keep my sats at around 94, but as soon as I talk, eat or move around my sats are dropping so low,

I am unable to walk without coughing so hard I wet myself or worse.

My chest CT shows inflammation in the lungs, as well as edema and water. I also have an enlarged heart.

I most likely was told I will need to go home on oxygen. I already have oxygen an bipap at home but I need to get the portable tanks for when I am driving or out. I do not want the green tanks that you push, I wnt the portable btttles that I can carry oh jy shouolder and or in a backpack
I only have medicaid but my work said they would be willing to help pay for what medicaid won't pay.

Help please, sorry my typing is so bad I am on a lot of anti spasmarticsa and my eyes are killing me

 

[JennifersHope]

I was intubated and then flown to USC on Thanksgiving. I was extubated a few o2 days later and am now in a regular room, for the first few days after being extubated I had to go on helium oxygen to help keep my sats up,

At rest with a full mask on they can keep my sats at around 94, but as soon as I talk, eat or move around my sats are dropping so low,

I am unable to walk without coughing so hard I wet myself or worse.

My chest CT shows inflammation in the lungs, as well as edema and water. I also have an enlarged heart.

I most likely was told I will need to go home on oxygen. I already have oxygen an bipap at home but I need to get the portable tanks for when I am driving or out. I do not want the green tanks that you push, I wnt the portable btttles that I can carry oh jy shouolder and or in a backpack
I only have medicaid but my work said they would be willing to help pay for what medicaid won't pay.

Help please, sorry my typing is so bad I am on a lot of anti spasmarticsa and my eyes are killing me

 

[JennifersHope]

I was intubated and then flown to USC on Thanksgiving. I was extubated a few o2 days later and am now in a regular room, for the first few days after being extubated I had to go on helium oxygen to help keep my sats up,
<br />
<br />At rest with a full mask on they can keep my sats at around 94, but as soon as I talk, eat or move around my sats are dropping so low,
<br />
<br />I am unable to walk without coughing so hard I wet myself or worse.
<br />
<br />My chest CT shows inflammation in the lungs, as well as edema and water. I also have an enlarged heart.
<br />
<br />I most likely was told I will need to go home on oxygen. I already have oxygen an bipap at home but I need to get the portable tanks for when I am driving or out. I do not want the green tanks that you push, I wnt the portable btttles that I can carry oh jy shouolder and or in a backpack
<br />I only have medicaid but my work said they would be willing to help pay for what medicaid won't pay.
<br />
<br />Help please, sorry my typing is so bad I am on a lot of anti spasmarticsa and my eyes are killing me

 

[JustDucky]

My god Jenn! Sorry you are so sick. I sure hope they get your asthma under control and soon. As far as O2, I have the green tanks so I can't help you there. I put mine in a backpack though, it makes it easier to handle. They have the small M6 tanks that are very portable, you just need to use a conserver as your regulator so that those small bottles can last as long as the D tanks. Some people don't do well with conservers though, I am one of them, I feel better with constant O2 flow, so I am stuck with my D tanks. I do know of others who use liquid O2 and have those tiny tanks that they fill with their liquid Ox tanks...I think one system is Helios.
I wish I had more info...maybe someone will chime in. Hang in there and get out of there soon!
Hugs and good vibes your way,
Jenn

 

[JustDucky]

My god Jenn! Sorry you are so sick. I sure hope they get your asthma under control and soon. As far as O2, I have the green tanks so I can't help you there. I put mine in a backpack though, it makes it easier to handle. They have the small M6 tanks that are very portable, you just need to use a conserver as your regulator so that those small bottles can last as long as the D tanks. Some people don't do well with conservers though, I am one of them, I feel better with constant O2 flow, so I am stuck with my D tanks. I do know of others who use liquid O2 and have those tiny tanks that they fill with their liquid Ox tanks...I think one system is Helios.
I wish I had more info...maybe someone will chime in. Hang in there and get out of there soon!
Hugs and good vibes your way,
Jenn

 

[JustDucky]

My god Jenn! Sorry you are so sick. I sure hope they get your asthma under control and soon. As far as O2, I have the green tanks so I can't help you there. I put mine in a backpack though, it makes it easier to handle. They have the small M6 tanks that are very portable, you just need to use a conserver as your regulator so that those small bottles can last as long as the D tanks. Some people don't do well with conservers though, I am one of them, I feel better with constant O2 flow, so I am stuck with my D tanks. I do know of others who use liquid O2 and have those tiny tanks that they fill with their liquid Ox tanks...I think one system is Helios.
<br />I wish I had more info...maybe someone will chime in. Hang in there and get out of there soon!
<br />Hugs and good vibes your way,
<br />Jenn

 

[deanna]

Omg, Jennifer...
I have talked to you a couple of times, but it has been a couple of years.
I was reading all of your testing stuff nad am still a little speechless.
Are you at USC in cali? I didn't think you lived in Calif, but I guess maybe you moved.
i am on O2 full time, I get the little tanks ( life saver). I have medicare, and they pay for evrything. I don't think you should have a problem getting them covered. There has never been an issue for me between the 2 types.
Sorry about your thanksgiving, if i remember correctly you moved into your house around that time of year also, maybe not. Well I also am followed at USc and have really grown to like it there.

 

[deanna]

Omg, Jennifer...
I have talked to you a couple of times, but it has been a couple of years.
I was reading all of your testing stuff nad am still a little speechless.
Are you at USC in cali? I didn't think you lived in Calif, but I guess maybe you moved.
i am on O2 full time, I get the little tanks ( life saver). I have medicare, and they pay for evrything. I don't think you should have a problem getting them covered. There has never been an issue for me between the 2 types.
Sorry about your thanksgiving, if i remember correctly you moved into your house around that time of year also, maybe not. Well I also am followed at USc and have really grown to like it there.

 

[deanna]

Omg, Jennifer...
<br /> I have talked to you a couple of times, but it has been a couple of years.
<br /> I was reading all of your testing stuff nad am still a little speechless.
<br /> Are you at USC in cali? I didn't think you lived in Calif, but I guess maybe you moved.
<br /> i am on O2 full time, I get the little tanks ( life saver). I have medicare, and they pay for evrything. I don't think you should have a problem getting them covered. There has never been an issue for me between the 2 types.
<br /> Sorry about your thanksgiving, if i remember correctly you moved into your house around that time of year also, maybe not. Well I also am followed at USc and have really grown to like it there.

 

[Liza]

How much oxygen are you on? Going home on? We bought a portable oxygen concentrator for Anna' but it only goes up to 3 ltrs, so if you need more it won't work for you. Here's the link anyway though. Convenience was pricey, I'll admit.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.lifechoiceoxygen.com/products.php
">http://www.lifechoiceoxygen.com/products.php
</a>
Helios, I have heard is great. It wouldn't work for us though because you can not take it on a plane, which we needed because her tx clinic was in Ohio and she lived in NE.

 

[Liza]

How much oxygen are you on? Going home on? We bought a portable oxygen concentrator for Anna' but it only goes up to 3 ltrs, so if you need more it won't work for you. Here's the link anyway though. Convenience was pricey, I'll admit.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.lifechoiceoxygen.com/products.php
">http://www.lifechoiceoxygen.com/products.php
</a>
Helios, I have heard is great. It wouldn't work for us though because you can not take it on a plane, which we needed because her tx clinic was in Ohio and she lived in NE.

 

[Liza]

How much oxygen are you on? Going home on? We bought a portable oxygen concentrator for Anna' but it only goes up to 3 ltrs, so if you need more it won't work for you. Here's the link anyway though. Convenience was pricey, I'll admit.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.lifechoiceoxygen.com/products.php
">http://www.lifechoiceoxygen.com/products.php
</a><br />
<br />Helios, I have heard is great. It wouldn't work for us though because you can not take it on a plane, which we needed because her tx clinic was in Ohio and she lived in NE.

 

[JennifersHope]

Hey Thanks, I didn't mean to say usc I mean to say MUSC. I live in SC. Yesterday was a fog for me...

I don't know anything yet. I have two small tanks that my friend went and got for me that will last the two hour car ride home.

Right now if I sit still, don't talk or move I can keep my sats pretty high on a cool mist mask with about 4 liters.

I am not sure where I stand, Yesterday I was told I had PCP pneumonia, today they are not sure. I hate the weekends here because the covering doctors dont know their butt from their elbow.

Overall I think I am getting better but I am on a ton of drugs, I mean a ton, antispsmatics to help with the laryneal spasms, ativan because I am losing my mind, cough medicine with codiene in it, and nebs every few hours.

What is so alarming is my sats can'[t keeop up, this has never been a problem for me before. My heart also is enlarged on one report but not on the othere,,,, But over all the heart is functioning wonderfully.

My amazing bosses and friends I work with are going to help me get the back pack o2 tank so I can just strap it on and go. I can't deal with wheeling around a green o2 strap when less then two weeks ago I was running/jogging 5 k several times a week.

They are also talking about doing biopsys of the lungs to see what the heck is going on

Hopefully I can go home just on two liters and get that backpack. I know it is a stupid thing to be concerned about especially because they think I have PCP pneumonia but for some reason I am obsessed with diet pepsi, unsweet tea, the back pack and having my room totally decorated for christmas.. I even have my stocking hung and christmas PJS I guess you have to control what you can right?

 

[JennifersHope]

Hey Thanks, I didn't mean to say usc I mean to say MUSC. I live in SC. Yesterday was a fog for me...

I don't know anything yet. I have two small tanks that my friend went and got for me that will last the two hour car ride home.

Right now if I sit still, don't talk or move I can keep my sats pretty high on a cool mist mask with about 4 liters.

I am not sure where I stand, Yesterday I was told I had PCP pneumonia, today they are not sure. I hate the weekends here because the covering doctors dont know their butt from their elbow.

Overall I think I am getting better but I am on a ton of drugs, I mean a ton, antispsmatics to help with the laryneal spasms, ativan because I am losing my mind, cough medicine with codiene in it, and nebs every few hours.

What is so alarming is my sats can'[t keeop up, this has never been a problem for me before. My heart also is enlarged on one report but not on the othere,,,, But over all the heart is functioning wonderfully.

My amazing bosses and friends I work with are going to help me get the back pack o2 tank so I can just strap it on and go. I can't deal with wheeling around a green o2 strap when less then two weeks ago I was running/jogging 5 k several times a week.

They are also talking about doing biopsys of the lungs to see what the heck is going on

Hopefully I can go home just on two liters and get that backpack. I know it is a stupid thing to be concerned about especially because they think I have PCP pneumonia but for some reason I am obsessed with diet pepsi, unsweet tea, the back pack and having my room totally decorated for christmas.. I even have my stocking hung and christmas PJS I guess you have to control what you can right?

 

[JennifersHope]

Hey Thanks, I didn't mean to say usc I mean to say MUSC. I live in SC. Yesterday was a fog for me...
<br />
<br />I don't know anything yet. I have two small tanks that my friend went and got for me that will last the two hour car ride home.
<br />
<br />Right now if I sit still, don't talk or move I can keep my sats pretty high on a cool mist mask with about 4 liters.
<br />
<br />I am not sure where I stand, Yesterday I was told I had PCP pneumonia, today they are not sure. I hate the weekends here because the covering doctors dont know their butt from their elbow.
<br />
<br />Overall I think I am getting better but I am on a ton of drugs, I mean a ton, antispsmatics to help with the laryneal spasms, ativan because I am losing my mind, cough medicine with codiene in it, and nebs every few hours.
<br />
<br />What is so alarming is my sats can'[t keeop up, this has never been a problem for me before. My heart also is enlarged on one report but not on the othere,,,, But over all the heart is functioning wonderfully.
<br />
<br />My amazing bosses and friends I work with are going to help me get the back pack o2 tank so I can just strap it on and go. I can't deal with wheeling around a green o2 strap when less then two weeks ago I was running/jogging 5 k several times a week.
<br />
<br />They are also talking about doing biopsys of the lungs to see what the heck is going on
<br />
<br />Hopefully I can go home just on two liters and get that backpack. I know it is a stupid thing to be concerned about especially because they think I have PCP pneumonia but for some reason I am obsessed with diet pepsi, unsweet tea, the back pack and having my room totally decorated for christmas.. I even have my stocking hung and christmas PJS I guess you have to control what you can right?