Re: oxygen therapy

[Guest guest]

What does your pulmonologist say? What is your oxygen sat rate with and without

oxygen?

Suzanne

[Guest guest]

June,

I use 1 and 1/2 liters of oxygen when I sleep. About four years ago a new respiratory therapist from the medical and oxygen supply company where I get my nebulizer kits called me and said that he wanted to meet the patients. He checked my oxygen just walking around in the house and my oxygen stayed around 95%. He then asked if I wanted my night sats (saturation) checked. I had it checked and found that my level dropped down to around 88%. This report was sent to my pulmonologist who prescribed 1 liter of oxygen whenever I sleep. I have since had it checked, and my pulmonologist prescribed 1 and 1/2 liters.

Do you have your oxygen checked when you see your pulmonogist? You may want to tell him how you feel and perhaps they can do a walk test with an pulse ox. to see what your oxygen level is when you are walking. You can get an oximeter and check it yourself. I don't have one, but am planning to get one.

Good Luck,

Norma

To: bronchiectasis Sent: Fri, October 1, 2010 4:59:21 PMSubject: oxygen therapy

Do any of you use oxygen with your bronchiectasis? My breathing has become very bad . If I do anything except sit in a chair I become severely breathless. It takes me a while to get back to normal breathing. I have become an invalid. I have oxygen but I not know whether to use it or not. I can't decide whether it helps me or not. Even with oxygen I still have great trouble trying to do anything. I don't know whether bronchiectasis can cause this severe breathing or maybe something else is going on. I would love to hear the experiences you have had with severe breathing problems and bronchiectasis. This groups is priceless and has lots of important information. Thanks for your help June K

[Guest guest]

Hi June

lee from Australia. Just wondering why you are on oxygen when your stats are so good they are normal readings. I also have breathing issues but my stats are normal same as yours so it could be lack of fitness and I am to see a cardiologist.

Cheers Lee

To: bronchiectasis Sent: Sat, 2 October, 2010 10:07:17 AMSubject: Re: oxygen therapy

My doctor is trying to figure out why my breathing is so bad. It. could be many things besides the bronchiectasis ; He gave me oxygen for the home when I need it. My finger pulse test always shows good oxygen levels without oxygen at 97 or 98; In the hospital with oxygen reading was about the same I sometimes think the oxygen makes me worse but then I get really bad even sitting in a chair so I have to believe the oxygen helps. My breathing doesnt improve and I think I get worse everyday. I would like to hear your experiences and others Sometimes this group knows mlore than the doctors. June K.

..Subject: Re: oxygen therapy To: bronchiectasis Date: Friday, October 1, 2010, 6:09 PM

What does your pulmonologist say? What is your oxygen sat rate with and without oxygen?Suzanne

[Guest guest]

Dear Lee thanks for your input. Thats what no one can figure out how my oxygen level is so good and my breathing so bad. I also learned that I have Non Tuburculous Micobacteria and am taking 3 strong antibiotics for that. Maybe they are causing the breathing problems. I always have trouble with my breathing with a lot of antibiotics. My daughter is a cardiologist and I took an echo and my heart looked good. I had a cat scan and there is no sign of a blood clot. They are checking me for pulmonary hypertention but it seems to be a level that doesn't require treatment. It's a mystery and can't breathe..

..Subject: Re: oxygen therapy To: bronchiectasis Date: Friday, October 1, 2010, 6:09 PM

What does your pulmonologist say? What is your oxygen sat rate with and without oxygen?Suzanne

[Guest guest]

Hi June,

Maintaining adequate oxygenation of our cells is critical to keeping all our organs healthy. If you've been prescribed oxygen it should be of benefit to you. It will keep your body as healthy as possible. If you use it during exercise it should enable you to do more than you otherwise would be able to do.

My knowledge of this is general. I'm sure others in this group use or have used oxygen. Hopefully they'll contribute their advice.

Best of luck to you!

Kay oxygen therapy

Do any of you use oxygen with your bronchiectasis? My breathing has become very bad . If I do anything except sit in a chair I become severely breathless. It takes me a while to get back to normal breathing. I have become an invalid. I have oxygen but I not know whether to use it or not. I can't decide whether it helps me or not. Even with oxygen I still have great trouble trying to do anything. I don't know whether bronchiectasis can cause this severe breathing or maybe something else is going on. I would love to hear the experiences you have had with severe breathing problems and bronchiectasis. This groups is priceless and has lots of important information. Thanks for your help June K

[Guest guest]

Thanks for your help Norma My problem comes with activity. When I am awake no matter what I do I/m breathless. Its so bad that going from room to room is an ordeal.I need to rest whatever I do with or without oxygenSubject: Re: oxygen therapyTo: bronchiectasis Date: Friday, October 1, 2010, 7:52 PM

June,

I use 1 and 1/2 liters of oxygen when I sleep. About four years ago a new respiratory therapist from the medical and oxygen supply company where I get my nebulizer kits called me and said that he wanted to meet the patients. He checked my oxygen just walking around in the house and my oxygen stayed around 95%. He then asked if I wanted my night sats (saturation) checked. I had it checked and found that my level dropped down to around 88%. This report was sent to my pulmonologist who prescribed 1 liter of oxygen whenever I sleep. I have since had it checked, and my pulmonologist prescribed 1 and 1/2 liters.

Do you have your oxygen checked when you see your pulmonogist? You may want to tell him how you feel and perhaps they can do a walk test with an pulse ox. to see what your oxygen level is when you are walking. You can get an oximeter and check it yourself. I don't have one, but am planning to get one.

Good Luck,

Norma

To: bronchiectasis Sent: Fri, October 1, 2010 4:59:21 PMSubject: oxygen therapy

Do any of you use oxygen with your bronchiectasis? My breathing has become very bad . If I do anything except sit in a chair I become severely breathless. It takes me a while to get back to normal breathing. I have become an invalid. I have oxygen but I not know whether to use it or not. I can't decide whether it helps me or not. Even with oxygen I still have great trouble trying to do anything. I don't know whether bronchiectasis can cause this severe breathing or maybe something else is going on. I would love to hear the experiences you have had with severe breathing problems and bronchiectasis. This groups is priceless and has lots of important information. Thanks for your help June K

[Guest guest]

If you feel you're getting worse every day, you may need to return to your pulmonologist or get a second opinion. Could you have an occult infection.

Kay

Re: oxygen therapy To: bronchiectasis Date: Friday, October 1, 2010, 6:09 PM

What does your pulmonologist say? What is your oxygen sat rate with and without oxygen?Suzanne

[Guest guest]

Thanks kayn.for your help. When my doctor prescribed oxygen he had no idea how bad I was. I am going to see him Monday and see what he thinks, I thought it would be helpful for me if this group gave me their experiences with oxygen and I would like to know if others have terrible breathing problems ,like meSubject: Re: oxygen therapyTo: bronchiectasis Date: Friday, October 1, 2010, 8:26 PM

Hi June,

Maintaining adequate oxygenation of our cells is critical to keeping all our organs healthy. If you've been prescribed oxygen it should be of benefit to you. It will keep your body as healthy as possible. If you use it during exercise it should enable you to do more than you otherwise would be able to do.

My knowledge of this is general. I'm sure others in this group use or have used oxygen. Hopefully they'll contribute their advice.

Best of luck to you!

Kay oxygen therapy

Do any of you use oxygen with your bronchiectasis? My breathing has become very bad . If I do anything except sit in a chair I become severely breathless. It takes me a while to get back to normal breathing. I have become an invalid. I have oxygen but I not know whether to use it or not. I can't decide whether it helps me or not. Even with oxygen I still have great trouble trying to do anything. I don't know whether bronchiectasis can cause this severe breathing or maybe something else is going on. I would love to hear the experiences you have had with severe breathing problems and bronchiectasis. This groups is priceless and has lots of important information. Thanks for your help June K

[Guest guest]

Kay what is an occult infection? Since I don't have a temperature I probably don't have an infection. I really appreciate your help. June K.

..Subject: Re: oxygen therapy To: bronchiectasis Date: Friday, October 1, 2010, 6:09 PM

What does your pulmonologist say? What is your oxygen sat rate with and without oxygen?Suzanne

[Guest guest]

Now there's a possibility. Are you fit, June? Do you walk regularly, lift hand weights, do water aerobics, or any type of exercise? Lee is right. The use it or lose it admonition is even more applicable to those of us with lung issues. If you can gradually up your walking distances, lift even the lightest of hand weights at home, get an exercise bike, or whatever else appeals to you, you'll be well rewarded. It doesn't necessarily require a "program", gym, or expensive rehab facility. Everyone can do so much for themselves by just "moving" every day, as much as you can for as long as you can. I think people lose sight of this in this day and age! Just "moving it" day after day has amazing results: it's what our bodies were meant to do. Look to Joy for inspiration. She goes out and walks, goes to community tai chi, and does a host of other active things to engage in life. And almost no one has had more lung and health challenges that she, yet she keeps moving, whenever and wherever she can.

Working on fitness is a great idea Lee :-)

Kay Re: oxygen therapy To: bronchiectasis Date: Friday, October 1, 2010, 6:09 PM

What does your pulmonologist say? What is your oxygen sat rate with and without oxygen?Suzanne

[Guest guest]

Occult means hidden, one that for one reason or another doesn't show up with the regular tests. But, you say you say you have Non-TB micobacteria... that's probably part of the answer. And everyone reacts differently to medicines. If you've taken antis many times of for long periods, those on this site often say they have a variety of negative consequences.

I'm so sorry. It does sound like you're getting good care. Would a second opinion be of value, if only to get more professional minds questioning what might be going on? Do you live near a teaching hospital or medical school? Not being able to breathe is just so scary... I'll be thinking of you.

Kay Re: oxygen therapy To: bronchiectasis Date: Friday, October 1, 2010, 6:09 PM

What does your pulmonologist say? What is your oxygen sat rate with and without oxygen?Suzanne

[Guest guest]

Lee you are right about fitness and exercise I have used a treadmilll for years and years but as of 2 or 3 months ago my breathing got too bad Now I can/t even walk from room to room.My husband and I visited Australia about 10 years ago and we fell in love with it. We wanted to live there and still do but we are 3 generation Americans and have children here..

..Subject: Re: oxygen therapy To: bronchiectasis Date: Friday, October 1, 2010, 6:09 PM

What does your pulmonologist say? What is your oxygen sat rate with and without oxygen?Suzanne

[Guest guest]

Dear kayn Thanks a million again for your help. .

..Subject: Re: oxygen therapy To: bronchiectasis Date: Friday, October 1, 2010, 6:09 PM

What does your pulmonologist say? What is your oxygen sat rate with and without oxygen?Suzanne

[Guest guest]

me too

To: bronchiectasis Sent: Sat, 2 October, 2010 10:29:03 AMSubject: Re: oxygen therapy

Thanks for your help Norma My problem comes with activity. When I am awake no matter what I do I/m breathless. Its so bad that going from room to room is an ordeal. I need to rest whatever I do with or without oxygen

Subject: Re: oxygen therapyTo: bronchiectasis Date: Friday, October 1, 2010, 7:52 PM

June,

I use 1 and 1/2 liters of oxygen when I sleep. About four years ago a new respiratory therapist from the medical and oxygen supply company where I get my nebulizer kits called me and said that he wanted to meet the patients. He checked my oxygen just walking around in the house and my oxygen stayed around 95%. He then asked if I wanted my night sats (saturation) checked. I had it checked and found that my level dropped down to around 88%. This report was sent to my pulmonologist who prescribed 1 liter of oxygen whenever I sleep. I have since had it checked, and my pulmonologist prescribed 1 and 1/2 liters.

Do you have your oxygen checked when you see your pulmonogist? You may want to tell him how you feel and perhaps they can do a walk test with an pulse ox. to see what your oxygen level is when you are walking. You can get an oximeter and check it yourself. I don't have one, but am planning to get one.

Good Luck,

Norma

To: bronchiectasis Sent: Fri, October 1, 2010 4:59:21 PMSubject: oxygen therapy

Do any of you use oxygen with your bronchiectasis? My breathing has become very bad . If I do anything except sit in a chair I become severely breathless. It takes me a while to get back to normal breathing. I have become an invalid. I have oxygen but I not know whether to use it or not. I can't decide whether it helps me or not. Even with oxygen I still have great trouble trying to do anything. I don't know whether bronchiectasis can cause this severe breathing or maybe something else is going on. I would love to hear the experiences you have had with severe breathing problems and bronchiectasis. This groups is priceless and has lots of important information. Thanks for your help June K

[Guest guest]

That is alot of my problem I havent done any exercise in 2 years. Have gained weight and spend days sitting at the nursing home with my mother. Or at hospital appointments with hubby. This has all got worse since having gallbladder out and menopause. Fat and no energy. Once I see the cardiologist to make sure I am ok in that area I shall start walking properly but right now the slightest walk makes me out of control and I panic. See lung specialist next month so by then I should know something

cheers Lee

To: bronchiectasis Sent: Sat, 2 October, 2010 10:44:02 AMSubject: Re: oxygen therapy

Now there's a possibility. Are you fit, June? Do you walk regularly, lift hand weights, do water aerobics, or any type of exercise? Lee is right. The use it or lose it admonition is even more applicable to those of us with lung issues. If you can gradually up your walking distances, lift even the lightest of hand weights at home, get an exercise bike, or whatever else appeals to you, you'll be well rewarded. It doesn't necessarily require a "program", gym, or expensive rehab facility. Everyone can do so much for themselves by just "moving" every day, as much as you can for as long as you can. I think people lose sight of this in this day and age! Just "moving it" day after day has amazing results: it's what our bodies were meant to do. Look to Joy for inspiration. She goes out and walks, goes to community tai chi, and does a host of other active things to engage in

life. And almost no one has had more lung and health challenges that she, yet she keeps moving, whenever and wherever she can.

Working on fitness is a great idea Lee :-)

Kay Re: oxygen therapy To: bronchiectasis Date: Friday, October 1, 2010, 6:09 PM

What does your pulmonologist say? What is your oxygen sat rate with and without oxygen?Suzanne

[Guest guest]

If your heart checks out OK, maybe you could walk briskly near the hospital or the nursing home. I used to do that when my mom was in the hospital. I'd take a break every couple hours and walk down the flights of stairs, then around the neighborhood near the hospital. Can only take so much sitting, then I go a little crazy. Park a couple blocks from the store when you do errands, or walk to any stores, post office, etc that are near enough. Having a destination is nice. When it's just too hot (like this past week when its been well over 100 for several days) or raining here and I don't have an aerobics or yoga class I do jumping jacks and other exercises while I watch the business channel on TV. Or go out and mow your yard or pull weeds for a half hour, prune trees, etc. My little place has an unending list of chores I need to do. They say chores are great exercise. I sure get winded pruning my many big citrus trees, hauling the branches to the green waste container and cutting them small so they'll all fit inside.

Once you start looking for ways to exercise you'll find dozens!

Cheers, Kay

Re: oxygen therapy To: bronchiectasis Date: Friday, October 1, 2010, 6:09 PM

What does your pulmonologist say? What is your oxygen sat rate with and without oxygen?Suzanne

[Guest guest]

now wonter is over plan on moving more xxx

To: bronchiectasis Sent: Sat, 2 October, 2010 1:45:36 PMSubject: Re: oxygen therapy

If your heart checks out OK, maybe you could walk briskly near the hospital or the nursing home. I used to do that when my mom was in the hospital. I'd take a break every couple hours and walk down the flights of stairs, then around the neighborhood near the hospital. Can only take so much sitting, then I go a little crazy. Park a couple blocks from the store when you do errands, or walk to any stores, post office, etc that are near enough. Having a destination is nice. When it's just too hot (like this past week when its been well over 100 for several days) or raining here and I don't have an aerobics or yoga class I do jumping jacks and other exercises while I watch the business channel on TV. Or go out and mow your yard or pull weeds for a half hour, prune trees, etc. My little place has an unending list of chores I need to do. They say chores are great exercise. I sure get winded

pruning my many big citrus trees, hauling the branches to the green waste container and cutting them small so they'll all fit inside.

Once you start looking for ways to exercise you'll find dozens!

Cheers, Kay

Re: oxygen therapy To: bronchiectasis Date: Friday, October 1, 2010, 6:09 PM

What does your pulmonologist say? What is your oxygen sat rate with and without oxygen?Suzanne

[Guest guest]

Hi, have you had an overnight test. My pumologist & I had talked about oxygen and I had never had the over night done. We did it and it came out good for me. But you might consider it.

To: bronchiectasis Sent: Sat, October 2, 2010 12:19:56 AMSubject: Re: oxygen therapy

now wonter is over plan on moving more xxx

To: bronchiectasis Sent: Sat, 2 October, 2010 1:45:36 PMSubject: Re: oxygen therapy

If your heart checks out OK, maybe you could walk briskly near the hospital or the nursing home. I used to do that when my mom was in the hospital. I'd take a break every couple hours and walk down the flights of stairs, then around the neighborhood near the hospital. Can only take so much sitting, then I go a little crazy. Park a couple blocks from the store when you do errands, or walk to any stores, post office, etc that are near enough. Having a destination is nice. When it's just too hot (like this past week when its been well over 100 for several days) or raining here and I don't have an aerobics or yoga class I do jumping jacks and other exercises while I watch the business channel on TV. Or go out and mow your yard or pull weeds for a half hour, prune trees, etc. My little place has an unending list of chores I need to do. They say chores are great exercise. I sure get winded

pruning my many big citrus trees, hauling the branches to the green waste container and cutting them small so they'll all fit inside.

Once you start looking for ways to exercise you'll find dozens!

Cheers, Kay

Re: oxygen therapy To: bronchiectasis Date: Friday, October 1, 2010, 6:09 PM

What does your pulmonologist say? What is your oxygen sat rate with and without oxygen?Suzanne

[Guest guest]

yes twice he said I should get a cpap. tried it and hated it

To: bronchiectasis Sent: Sat, 2 October, 2010 5:57:42 PMSubject: Re: oxygen therapy

Hi, have you had an overnight test. My pumologist & I had talked about oxygen and I had never had the over night done. We did it and it came out good for me. But you might consider it.

To: bronchiectasis Sent: Sat, October 2, 2010 12:19:56 AMSubject: Re: oxygen therapy

now wonter is over plan on moving more xxx

To: bronchiectasis Sent: Sat, 2 October, 2010 1:45:36 PMSubject: Re: oxygen therapy

If your heart checks out OK, maybe you could walk briskly near the hospital or the nursing home. I used to do that when my mom was in the hospital. I'd take a break every couple hours and walk down the flights of stairs, then around the neighborhood near the hospital. Can only take so much sitting, then I go a little crazy. Park a couple blocks from the store when you do errands, or walk to any stores, post office, etc that are near enough. Having a destination is nice. When it's just too hot (like this past week when its been well over 100 for several days) or raining here and I don't have an aerobics or yoga class I do jumping jacks and other exercises while I watch the business channel on TV. Or go out and mow your yard or pull weeds for a half hour, prune trees, etc. My little place has an unending list of chores I need to do. They say chores are great exercise. I sure get winded

pruning my many big citrus trees, hauling the branches to the green waste container and cutting them small so they'll all fit inside.

Once you start looking for ways to exercise you'll find dozens!

Cheers, Kay

Re: oxygen therapy To: bronchiectasis Date: Friday, October 1, 2010, 6:09 PM

What does your pulmonologist say? What is your oxygen sat rate with and without oxygen?Suzanne

[Guest guest]

From time to time when my breathing was really bad, I've had to go on high doses

of prednisone and then taper it down (started at 60mg) over a period of several

weeks. You might ask your doctor about it. It allowed me to do my exercise

which has helped so much. Getting down the inflammation is sometimes necessary.

I agree about a 2nd opinion - sometimes that's what it takes.

Suzanne

[Guest guest]

Nona I have done the overnight breathing test and it was very good. I have big trouble moving around. WIsh I could solve this problem.Still trying to decide whether the oxygen is good or bad for me. Sometimes I use it because I think I need it, but then after a while I think perhaps it makes me worse. Still trying to figure it out..

..Subject: Re: oxygen therapy To: bronchiectasis Date: Friday, October 1, 2010, 6:09 PM

What does your pulmonologist say? What is your oxygen sat rate with and without oxygen?Suzanne

[Guest guest]

Suzanne it's a good idea about the prednisone. I have used it in the past and always hated it. Sometimes prednisone is necessary and I think this is a good suggestion for helping for breathing problems. June KSubject: Re: oxygen therapyTo: bronchiectasis Date: Saturday, October 2, 2010, 7:48 AM

From time to time when my breathing was really bad, I've had to go on high doses of prednisone and then taper it down (started at 60mg) over a period of several weeks. You might ask your doctor about it. It allowed me to do my exercise which has helped so much. Getting down the inflammation is sometimes necessary.

I agree about a 2nd opinion - sometimes that's what it takes.

Suzanne

[Guest guest]



Joan agrees with the prednisone at this time as well. of course here you need an RX for it. does anyone know how often is too often for prednisone?

Re: oxygen therapyTo: bronchiectasis Date: Saturday, October 2, 2010, 7:48 AM

From time to time when my breathing was really bad, I've had to go on high doses of prednisone and then taper it down (started at 60mg) over a period of several weeks. You might ask your doctor about it. It allowed me to do my exercise which has helped so much. Getting down the inflammation is sometimes necessary.I agree about a 2nd opinion - sometimes that's what it takes.Suzanne

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.856 / Virus Database: 271.1.1/3172 - Release Date: 10/02/10 02:34:00

[Guest guest]

Fat fingers today on my iPhone! Yes " red " was meant to be " pred " for

prednisone. Most doctors would like one to take this as seldom as possible - I

went 5 years without needing it until last Nov - been on it off and on ever

sense. I'm trying to taper off - I'm on 10mg - will taper to 5mg on Mon. I'll

probably stay at that until I see my pulmonologist in early Nov.

Suzanne

[Guest guest]

June, before you decide to rely on the prednisone,ask your dr or even one that you know cares, like your

daughter... about the adrenal function after extended use of steroids. Scary biz, getting diagnosed w/

adrenal insufficiency or worse, adrenal crisis.

The adrenal gland continues to receive the steroid so it becomes a problem now that the adrenal gland no

longer needs to produce cortisole! It's called 'secondary adrenal insufficiency' and has caused us many

urgent trips to the E.R. w/ our 8yr old son. He got secondary adrenal insufficiency from flovent for his

mis-diagnosed asthma. Damned Florida doctors!! I have to agree w/ EVERYone about getting

a second opinion from a dr. @ a MAJOR University hospital. We opted for many miles of traveling to

Minn and the Mayo Clinic.

Don't give up, we now have a nearly healthy little man and Mayo Clinic is the ONLY reason that I

am still a mommy. Had clergy brought in a few times in the E.R. Just go to the Dr. appts WELL

informed. Take your daughter, even! My son now wants to be a dr! Beware and stay informed! Kris

To: bronchiectasis Sent: Sat, October 2, 2010 10:54:28 AMSubject: Re: oxygen therapy

Suzzanne what do you mean by loving and hating red? Are you refering to prednisone? June K

Subject: Re: oxygen therapyTo: bronchiectasis Date: Saturday, October 2, 2010, 7:48 AM

From time to time when my breathing was really bad, I've had to go on high doses of prednisone and then taper it down (started at 60mg) over a period of several weeks. You might ask your doctor about it. It allowed me to do my exercise which has helped so much. Getting down the inflammation is sometimes necessary.I agree about a 2nd opinion - sometimes that's what it takes.Suzanne