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oxygen blah blah blah

K

kybert

New member
im not too well at the moment. not well at all <img src="http://forums.vogue.com.au/images/smilies/newsmiles/eusa_wall.gif">. my hearts been racing like mad and ive been feeling so weak the past week due to low oxygen. they must be dropping even more when i sleep because ive had headaches when i wake up and these horrible jerking movements when i come out of sleep. so i went to the hospital last night to sort it out. i wasnt seen by my cf doc, just some emergency doc. my sats were 90% so they put me on oxygen and after a couple of hours i felt good the best ive felt all week. i even felt like i could cope with some walking which i havent been able to do [and which i NEED to do]. i asked if they could arrange some oxygen for home. i was told i could not get home oxygen because i dont need it when im well and that when i did need it, i would have to be admitted everytime to get it. well thats stupid, im not going to run to the hospital and be tied to a bed everytime my oxygen drops. its a waste of everyones time. if my cf doc thinks along the lines of the doc i saw, is there anyway to convince him to let me have a supply at home for when i am sick or am i doomed to stay here in this fun oxygen deprived state?
 
K

kybert

New member
im not too well at the moment. not well at all <img src="http://forums.vogue.com.au/images/smilies/newsmiles/eusa_wall.gif">. my hearts been racing like mad and ive been feeling so weak the past week due to low oxygen. they must be dropping even more when i sleep because ive had headaches when i wake up and these horrible jerking movements when i come out of sleep. so i went to the hospital last night to sort it out. i wasnt seen by my cf doc, just some emergency doc. my sats were 90% so they put me on oxygen and after a couple of hours i felt good the best ive felt all week. i even felt like i could cope with some walking which i havent been able to do [and which i NEED to do]. i asked if they could arrange some oxygen for home. i was told i could not get home oxygen because i dont need it when im well and that when i did need it, i would have to be admitted everytime to get it. well thats stupid, im not going to run to the hospital and be tied to a bed everytime my oxygen drops. its a waste of everyones time. if my cf doc thinks along the lines of the doc i saw, is there anyway to convince him to let me have a supply at home for when i am sick or am i doomed to stay here in this fun oxygen deprived state?
 
K

kybert

New member
im not too well at the moment. not well at all <img src="http://forums.vogue.com.au/images/smilies/newsmiles/eusa_wall.gif">. my hearts been racing like mad and ive been feeling so weak the past week due to low oxygen. they must be dropping even more when i sleep because ive had headaches when i wake up and these horrible jerking movements when i come out of sleep. so i went to the hospital last night to sort it out. i wasnt seen by my cf doc, just some emergency doc. my sats were 90% so they put me on oxygen and after a couple of hours i felt good the best ive felt all week. i even felt like i could cope with some walking which i havent been able to do [and which i NEED to do]. i asked if they could arrange some oxygen for home. i was told i could not get home oxygen because i dont need it when im well and that when i did need it, i would have to be admitted everytime to get it. well thats stupid, im not going to run to the hospital and be tied to a bed everytime my oxygen drops. its a waste of everyones time. if my cf doc thinks along the lines of the doc i saw, is there anyway to convince him to let me have a supply at home for when i am sick or am i doomed to stay here in this fun oxygen deprived state?
 
D

Debi

New member
I've never heard of needing to be hospitalized each time before you are able to get oxygen for home use. I have oxygen all the time. When I am doing well enough not to need it, it's still here for me. Of course, I have needed it 24/7 for over a year now, but before that I would go for months without, then maybe 4-6 weeks with, then months without. If you're at 90 at rest, that's not so great - it means you're below 90 every time you start moving around. Talk to your cf doctor about getting it prescribed at home I wish you much luck. No one should have to feel the way you feel when there is an easy solution.
 
D

Debi

New member
I've never heard of needing to be hospitalized each time before you are able to get oxygen for home use. I have oxygen all the time. When I am doing well enough not to need it, it's still here for me. Of course, I have needed it 24/7 for over a year now, but before that I would go for months without, then maybe 4-6 weeks with, then months without. If you're at 90 at rest, that's not so great - it means you're below 90 every time you start moving around. Talk to your cf doctor about getting it prescribed at home I wish you much luck. No one should have to feel the way you feel when there is an easy solution.
 
D

Debi

New member
I've never heard of needing to be hospitalized each time before you are able to get oxygen for home use. I have oxygen all the time. When I am doing well enough not to need it, it's still here for me. Of course, I have needed it 24/7 for over a year now, but before that I would go for months without, then maybe 4-6 weeks with, then months without. If you're at 90 at rest, that's not so great - it means you're below 90 every time you start moving around. Talk to your cf doctor about getting it prescribed at home I wish you much luck. No one should have to feel the way you feel when there is an easy solution.
 
K

kybert

New member
ive never heard of it either. my mum had to deal with oxygen with my brother when he needed it. she said the same thing as you. in the beginning he didnt need it all the time but was still prescribed it for the times he did need it, even if it didnt use it for ages. none of this "if you dont need it all the time then you cant get it" bull.
 
K

kybert

New member
ive never heard of it either. my mum had to deal with oxygen with my brother when he needed it. she said the same thing as you. in the beginning he didnt need it all the time but was still prescribed it for the times he did need it, even if it didnt use it for ages. none of this "if you dont need it all the time then you cant get it" bull.
 
K

kybert

New member
ive never heard of it either. my mum had to deal with oxygen with my brother when he needed it. she said the same thing as you. in the beginning he didnt need it all the time but was still prescribed it for the times he did need it, even if it didnt use it for ages. none of this "if you dont need it all the time then you cant get it" bull.
 
F

fr3ak

Guest
have they done overnight oximetry? To determine if you need O2 at night

headaches in the morning are usually from carbon dioxide levels rising not necessarily low O2 (they both kinda go hand in hand)

have they suggest Bpap for CO2 levels? (if you have high levels that is)

HAve they done blood gases? especially on waking to get a more accurate measurement of your sats/Co2 levels?

maybe get them to do a SAts while exercising to see what your sats are doing when you are working out etc? (might help get you come home O2)

My sats were between 85-90 for years(I was told anything below 90 is bad, but 90 and above was normal **shrugs**) and I was never suggested oxygen...I did have emergency oxygen on hand for my hempotisis but not for any other reason...

I had O2 for night for around 3 years before I went to full time O2 and that was just before being tranplanted....

only suggestions I have is to get an overnight oximetry done and an exercise oximetry and blood gases...

sorry I am not much help
 
F

fr3ak

Guest
have they done overnight oximetry? To determine if you need O2 at night

headaches in the morning are usually from carbon dioxide levels rising not necessarily low O2 (they both kinda go hand in hand)

have they suggest Bpap for CO2 levels? (if you have high levels that is)

HAve they done blood gases? especially on waking to get a more accurate measurement of your sats/Co2 levels?

maybe get them to do a SAts while exercising to see what your sats are doing when you are working out etc? (might help get you come home O2)

My sats were between 85-90 for years(I was told anything below 90 is bad, but 90 and above was normal **shrugs**) and I was never suggested oxygen...I did have emergency oxygen on hand for my hempotisis but not for any other reason...

I had O2 for night for around 3 years before I went to full time O2 and that was just before being tranplanted....

only suggestions I have is to get an overnight oximetry done and an exercise oximetry and blood gases...

sorry I am not much help
 
F

fr3ak

Guest
have they done overnight oximetry? To determine if you need O2 at night

headaches in the morning are usually from carbon dioxide levels rising not necessarily low O2 (they both kinda go hand in hand)

have they suggest Bpap for CO2 levels? (if you have high levels that is)

HAve they done blood gases? especially on waking to get a more accurate measurement of your sats/Co2 levels?

maybe get them to do a SAts while exercising to see what your sats are doing when you are working out etc? (might help get you come home O2)

My sats were between 85-90 for years(I was told anything below 90 is bad, but 90 and above was normal **shrugs**) and I was never suggested oxygen...I did have emergency oxygen on hand for my hempotisis but not for any other reason...

I had O2 for night for around 3 years before I went to full time O2 and that was just before being tranplanted....

only suggestions I have is to get an overnight oximetry done and an exercise oximetry and blood gases...

sorry I am not much help
 
K

kybert

New member
they havent done anything and they probably wont do anything. they arent big on investigating things until they get REALLY bad. ive had overnight oximetry done ages ago when i was well and it hovered around 91 [didnt go into a deep sleep though], so god knows what its like now. things have changed a lot since then. havent had it tested while exercising. its been mentioned but im sure everyone knows what my clinic is like now. i will definately ask to do further tests. i dont think my heart can take much more of this. its beating so hard and fast to compensate for the low sats. its 130 at rest and my whole body moves when it beats. so uncomfortable. the oxygen i had in emergency brought my heart rate down to 100 and stopped the hard thumping so that was good, but now that i dont have any at home im back to square one.
 
K

kybert

New member
they havent done anything and they probably wont do anything. they arent big on investigating things until they get REALLY bad. ive had overnight oximetry done ages ago when i was well and it hovered around 91 [didnt go into a deep sleep though], so god knows what its like now. things have changed a lot since then. havent had it tested while exercising. its been mentioned but im sure everyone knows what my clinic is like now. i will definately ask to do further tests. i dont think my heart can take much more of this. its beating so hard and fast to compensate for the low sats. its 130 at rest and my whole body moves when it beats. so uncomfortable. the oxygen i had in emergency brought my heart rate down to 100 and stopped the hard thumping so that was good, but now that i dont have any at home im back to square one.
 
K

kybert

New member
they havent done anything and they probably wont do anything. they arent big on investigating things until they get REALLY bad. ive had overnight oximetry done ages ago when i was well and it hovered around 91 [didnt go into a deep sleep though], so god knows what its like now. things have changed a lot since then. havent had it tested while exercising. its been mentioned but im sure everyone knows what my clinic is like now. i will definately ask to do further tests. i dont think my heart can take much more of this. its beating so hard and fast to compensate for the low sats. its 130 at rest and my whole body moves when it beats. so uncomfortable. the oxygen i had in emergency brought my heart rate down to 100 and stopped the hard thumping so that was good, but now that i dont have any at home im back to square one.
 
F

fr3ak

Guest
I lost faith in the hospital system YEARS ago.... and the frustrating part is that no one else suffers when everything goes to sh!t

And I know all too well that screaming until you're blue in the face usually accomplishes nothing more then giving yourself a headache.... Id love to say keep naggin em, but you get fed up after a while (been there and done that)

have they had a halter monitor on you? which monitors your heart over a 24 hour period?

In regards to the sleep study, I dont think anyone can manage a deep sleep with all them bloody cords attached to your head LOL

good luck and I hope you get some answers!
 
F

fr3ak

Guest
I lost faith in the hospital system YEARS ago.... and the frustrating part is that no one else suffers when everything goes to sh!t

And I know all too well that screaming until you're blue in the face usually accomplishes nothing more then giving yourself a headache.... Id love to say keep naggin em, but you get fed up after a while (been there and done that)

have they had a halter monitor on you? which monitors your heart over a 24 hour period?

In regards to the sleep study, I dont think anyone can manage a deep sleep with all them bloody cords attached to your head LOL

good luck and I hope you get some answers!
 
F

fr3ak

Guest
I lost faith in the hospital system YEARS ago.... and the frustrating part is that no one else suffers when everything goes to sh!t

And I know all too well that screaming until you're blue in the face usually accomplishes nothing more then giving yourself a headache.... Id love to say keep naggin em, but you get fed up after a while (been there and done that)

have they had a halter monitor on you? which monitors your heart over a 24 hour period?

In regards to the sleep study, I dont think anyone can manage a deep sleep with all them bloody cords attached to your head LOL

good luck and I hope you get some answers!
 
K

kybert

New member
i hear ya. ive been trying to sort out a separate 'issue' for a while with my clinic and im just not getting anywhere. really puts you off going to appointments when they just make you angry. why do staff find it such a huge effort to listen to patients? heh, probably because listening requires one to work harder.

no halters. ive brought up the subject before as i sometimes get heart flutters but they dont think further tests are necessary.

the sleep technicians actually got angry with me because i couldnt fall asleep haha. are they insane? maybe they were used to overweight people who fell asleep at the drop of a hat.
 
K

kybert

New member
i hear ya. ive been trying to sort out a separate 'issue' for a while with my clinic and im just not getting anywhere. really puts you off going to appointments when they just make you angry. why do staff find it such a huge effort to listen to patients? heh, probably because listening requires one to work harder.

no halters. ive brought up the subject before as i sometimes get heart flutters but they dont think further tests are necessary.

the sleep technicians actually got angry with me because i couldnt fall asleep haha. are they insane? maybe they were used to overweight people who fell asleep at the drop of a hat.
 
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