Re: oxygen therapy

[Guest guest]

dear June,

I wondered so often why I felt like I needed oxygen, couldn't

breathe, but sats were fairly ok medically speaking (around mid-90s,

not considered for O2). What I have found since using the SmartVest

is that by reducing the mucous and infx load in my lungs I can feel I

have space in there for air - so wonderful. I had developed plugs

earlyish 07, docs couldn't seem to explain what was happening,

baffled. CT showed lots cysts. Now with the vest I cough up loads

plugs from time to time, and mucous is becoming clearer and clearer

like I haven' seen in decades. Do you have any kind of means to

enable removal of sputum? At the time I wasn't coughing up much (oh

blessed relief!) but actually wasn't a good thing - it eventually

felt like I had concrete in my lungs. An expression I remember using

was that of feeling like my lungs were full of last weeks cold

porridge (if you've ever seen even several hours old porridge you'll

know what I mean!)

hope this helps - it isn't necessarily to do with gas exchange ie

oxygen.

For oxygen use you really need to be consulting a chemist, a doctor

or someone who knows how & when it's best used. I have no idea ....

joy

[Guest guest]

Norma,

wow lucky you, doctors here don't even consider that issue of sats

dropping low at night. I'm sure I 've had long periods, and

frequent, when my sats have been really low, tho can't verify that...

joy

[Guest guest]

our doctors are really wary of prescribing O2, it can be harmful if

used when not needed (it is a corrosive)... so sounds like something

else?

joy

[Guest guest]

June does your CT scan show any other lung anomalies, cysts,

fibrosis? They will impact on breathing quality.

joy

[Guest guest]

June,

re infection but no clinical signs....eg temp, not necessarily so.

I've had massive infx no temp since circa 5 yrs ago. Before then I

had massive fevers with rigors (broke teeth), then they stopped. I

still have had horrible infx since. The immune system kind of gives

up wasting energy! Often very elderly people die from pneumonia or

something because no temp, no-one picks it up..

sorry it sounds gloomy, but you sound to me like really bad infx

without clinical symptoms, and I've been through that well and

truly. At least now my docs know, which helps a great deal.

as Lee (?) said, if sats are 97-98 O2 really wouldn't make you feel

better.

How about nebulised meds - either of the bronchi-opening kind eg

ventolin (gives me awful shakes) or saline around 3% (if haven't used

before), increase if tolerant. Has helped me heaps in removing

impacted plugs.

joy

[Guest guest]

hi all, June, Kay,

I can understand being unable to breathe in such a short space of

time, and no it isn't to do with not enough exercise, I regularly

took long walks in our wonderful part of the world, but quite rapidly

deteriorated that almost everything prescribed or I tried seemed to

have adverse effects. Eventually I lost mobility and coughing fits

wrecked my spine (well, been happening for years!). Yes you have to

get moving, BUT, very BIG but you need the means. For me it's been

6% nebs partially and very specifically having the SmartVest. I now

actually have CLEAR sputum - wow....!!

the scariest part was that I clogged up so much my doc at the time

thought I was fine cos couldn't hear the usual crackles and wheezes.

Nor would believe me when I told her I feel it's set like concrete,

won't move.

Be gentle, take time to rest and meditate or something if you can.

Forcing at times like this never seems to work... stress makes

breathing hard at best of times. I hope your drs can help you and

pinpoint what will work for you.

blessings,

joy

[Guest guest]

Sandy been thinking about you a lot lately, must phone you, I did

ages ago, and emailed, no response! So glad you're back!

hugs,

joy

[Guest guest]

Kay, we must have the same " thermostats " ! My normal temp is sub-normal, too -

hard to get the doctors to take it seriously when my temp is in the 99's and I'm

having aches and chills and feel horrid.

I tell my family that I'm like a fine, vintage Jaguar - I run best when the temp

is between 45 and 70 F!!!

Suzanne

[Guest guest]

Joy, I learned about the need for a night sats study when I was in pulmonary rehab. One of the respiratory therapists said that people with lung disease often do not breathe as deeply when they sleep as those who do not have lung disease. I have been in pulmonary rehab. and maintenace on and off for about the last nine years. They watch you carefully there, monitor sats, heart rate, and blood pressure. I also had a sleep study done about eight years ago but could not sleep. If I were able to have had it done at home in my own bed, it might have been more helpful.

Norma

To: bronchiectasis Sent: Sun, October 3, 2010 9:18:09 AMSubject: Re: oxygen therapy

Norma,wow lucky you, doctors here don't even consider that issue of sats dropping low at night. I'm sure I 've had long periods, and frequent, when my sats have been really low, tho can't verify that...joy

[Guest guest]

Yes it is hard to get medical people to take a 99 degree temp seriously, no matter how rotten we're feeling. Been there!

Kay Re: oxygen therapy

Kay, we must have the same "thermostats"! My normal temp is sub-normal, too - hard to get the doctors to take it seriously when my temp is in the 99's and I'm having aches and chills and feel horrid.I tell my family that I'm like a fine, vintage Jaguar - I run best when the temp is between 45 and 70 F!!!Suzanne

[Guest guest]

You know Norma, I recently read that now they have equipment for doing the sleep study in one's home. You seem to live in an area with good medical service, you might ask if this is available. Don't really know anything specific about it.

Kay Re: oxygen therapy

Norma,wow lucky you, doctors here don't even consider that issue of sats dropping low at night. I'm sure I 've had long periods, and frequent, when my sats have been really low, tho can't verify that...joy

[Guest guest]

Kay, They probably do. The pulmonologist's office wanted me to go to a hospital, but I said that I would not be comfortable there. My sleep study was done in a house that was converted to bedrooms. My room was decorated very nicely in very dark green, but one room was decorated in red. It took them about half an hour to hook me up with all the leads. I was wired from head to toe. They wanted me to go to sleep at 9:00 p.m. which is much earlier than my normal bedtime.

On the night sats both the oxygen level and heart rate are monitored. I have a copy both reports. I probably have another one done again.

Norma

To: bronchiectasis Sent: Sun, October 3, 2010 11:49:32 PMSubject: Re: oxygen therapy

You know Norma, I recently read that now they have equipment for doing the sleep study in one's home. You seem to live in an area with good medical service, you might ask if this is available. Don't really know anything specific about it.

Kay Re: oxygen therapy

Norma,wow lucky you, doctors here don't even consider that issue of sats dropping low at night. I'm sure I 've had long periods, and frequent, when my sats have been really low, tho can't verify that...joy

[Guest guest]

My temperature was only 97.8 degrees the last two times I was hospitalized with pneumonia. My normal temperature is around 98.4. When I first get up in the morning my temperature is 97.3, 97.5 or 97.7. My blood pressure runs low also. Perhaps that is because I am so skinny.

Norma

To: bronchiectasis Sent: Sun, October 3, 2010 11:47:42 PMSubject: Re: oxygen therapy

Yes it is hard to get medical people to take a 99 degree temp seriously, no matter how rotten we're feeling. Been there!

Kay Re: oxygen therapy

Kay, we must have the same "thermostats"! My normal temp is sub-normal, too - hard to get the doctors to take it seriously when my temp is in the 99's and I'm having aches and chills and feel horrid.I tell my family that I'm like a fine, vintage Jaguar - I run best when the temp is between 45 and 70 F!!!Suzanne

[Guest guest]



agree. my norm,al temp is 97, so when I have 99.7. do many of us run low body temps?

Re: oxygen therapy

Kay, we must have the same "thermostats"! My normal temp is sub-normal, too - hard to get the doctors to take it seriously when my temp is in the 99's and I'm having aches and chills and feel horrid.I tell my family that I'm like a fine, vintage Jaguar - I run best when the temp is between 45 and 70 F!!!Suzanne

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[Guest guest]



and BTW, I am not skinny, with low body temps and low PB.

Re: oxygen therapy

Kay, we must have the same "thermostats"! My normal temp is sub-normal, too - hard to get the doctors to take it seriously when my temp is in the 99's and I'm having aches and chills and feel horrid.I tell my family that I'm like a fine, vintage Jaguar - I run best when the temp is between 45 and 70 F!!!Suzanne

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[Guest guest]

Hi Norma,

I had approximately the same readings when I had Pneumonia last two times. Never a fever and my normal temp. runs low.

EILEEN

Subject: Re: oxygen therapyTo: bronchiectasis Date: Monday, October 4, 2010, 8:08 AM

 and BTW, I am not skinny, with low body temps and low PB.

Re: oxygen therapy

Kay, we must have the same "thermostats"! My normal temp is sub-normal, too - hard to get the doctors to take it seriously when my temp is in the 99's and I'm having aches and chills and feel horrid.I tell my family that I'm like a fine, vintage Jaguar - I run best when the temp is between 45 and 70 F!!!Suzanne

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[Guest guest]

Hi Eileen,

I am not alone then. When I was first diagnosed with bronchiectasis, the physician's assistant told me not to call the office unless I was sick and had a temperature of at least 101.4 degrees. When I went to the pulmonary doctor's office last spring with pneumonia, I saw the same physician's assistant and had the below normal temperature. I reminded her about what she told me about being sick and having had to have the 101.4 temperature before calling in, she said, "sometimes you don't have a fever with pneumonia". Now I can tell if I am sick due to the way I feel and due not rely on an elevated temperature. I hope the 7 mL of tobramycin the first 15 days of each month keeps me out of the hospital. It did between 2003 and 2008 when I was on tobramycin and Tobi. Are you on Tobi?

Norma (in Texas)

To: bronchiectasis Sent: Mon, October 4, 2010 12:51:06 PMSubject: Re: oxygen therapy

Hi Norma,

I had approximately the same readings when I had Pneumonia last two times. Never a fever and my normal temp. runs low.

EILEEN

Subject: Re: oxygen therapyTo: bronchiectasis Date: Monday, October 4, 2010, 8:08 AM

 and BTW, I am not skinny, with low body temps and low PB.

Re: oxygen therapy

Kay, we must have the same "thermostats"! My normal temp is sub-normal, too - hard to get the doctors to take it seriously when my temp is in the 99's and I'm having aches and chills and feel horrid.I tell my family that I'm like a fine, vintage Jaguar - I run best when the temp is between 45 and 70 F!!!Suzanne

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[Guest guest]

The only info on body temp and health status I've ever read was positive, as I said before. I suppose it could be low as a result of factors having to do with specific conditions, too. My daughters have the same low-normal temp that I do, and they have no health problems. Guess one would have to do more research to get complete clarification on the possibilities.

Kay Re: oxygen therapy

Kay, we must have the same "thermostats"! My normal temp is sub-normal, too - hard to get the doctors to take it seriously when my temp is in the 99's and I'm having aches and chills and feel horrid.I tell my family that I'm like a fine, vintage Jaguar - I run best when the temp is between 45 and 70 F!!!Suzanne

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[Guest guest]

How funny (not) Norma. I was told the same at a pulmonologist's office when I was seeking general knowledge. Was also told that sputum color was not an indication of having an infection, that the sputum had just "been down there too long". I have since read in several of the medical journal article updates that I receive daily that the darker the sputum the more likely an infection or COPD exacerbation was taking place! And that treating with the appropriate antis improved outcomes greatly.

We have to be our own advocates at all times. Makes dealing with issues that much harder, which is such a shame... sigh.

Kay

Re: oxygen therapy

Kay, we must have the same "thermostats"! My normal temp is sub-normal, too - hard to get the doctors to take it seriously when my temp is in the 99's and I'm having aches and chills and feel horrid.I tell my family that I'm like a fine, vintage Jaguar - I run best when the temp is between 45 and 70 F!!!Suzanne

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[Guest guest]

My VERY knowledgable pulmonologist at Washington U Med School told me that

sputum color is not an indication of infection or degree of infection in

bronchiectasis patients. What he said it IS an indication of is that the

patient is not getting the mucus up and out - it HAS been down there too long.

And that may well lead to infection. But he told me to not be alarmed by the

color.

I'm not sure that this is the case in " normal " people as they don't have mucus

that hangs around like we do, so for them it might well be an indication of

infection.

Suzanne

[Guest guest]

all right ladies, give me a clue what color mucus is mucus that has been down there too long. I go by clear(never), yellow, green.?

Re: oxygen therapy

My VERY knowledgable pulmonologist at Washington U Med School told me that sputum color is not an indication of infection or degree of infection in bronchiectasis patients. What he said it IS an indication of is that the patient is not getting the mucus up and out - it HAS been down there too long. And that may well lead to infection. But he told me to not be alarmed by the color. I'm not sure that this is the case in "normal" people as they don't have mucus that hangs around like we do, so for them it might well be an indication of infection.Suzanne

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[Guest guest]

The medical journal articles I read were reporting results of different symptoms to use to determine whether to treat or not in COPD exacerbations, which isn't exactly bronch, of course, but they did find that treating patients with color changes to darker green produced better patient outcomes than not treating. That's just the studies I read reports on, so I don't know how it relates to bronch or to anything else. It seems each of our problems in this group are slightly different, and it is a different disease than COPD, per se, so who knows!

Kay Re: oxygen therapy

My VERY knowledgable pulmonologist at Washington U Med School told me that sputum color is not an indication of infection or degree of infection in bronchiectasis patients. What he said it IS an indication of is that the patient is not getting the mucus up and out - it HAS been down there too long. And that may well lead to infection. But he told me to not be alarmed by the color. I'm not sure that this is the case in "normal" people as they don't have mucus that hangs around like we do, so for them it might well be an indication of infection.Suzanne

[Guest guest]

hi June,

did you find out the number for the degree of your hypertension?

Sorry for the dumb question, NTM is a new one on me, what is it

Other than that, even abx themselves can sometimes cause breathing

difficulties (yeah!) it pays to look at the blurb inside the

packaging or look them up on govt or reputable medical centre websites.

Not knowing other factors, as I think I mentioned some time ago I

found much of my breathing difficulties occur when I'm really full of

mucous, mucous plugs, just generally blocking off air intake. Since

being able to remove that buildup my breathing has improved, even tho

still puff on slightest exertion - guess I've just got too much

damaged lung now...

I know how distressing that feeling of fatigue and difficulty

breathing reduces you to being like an invalid, it's truly awful, i

do hope things start turning in the right direction for you...soon!

joy

[Guest guest]

The pulmonary hypertension number is 51. NTM stands for Non Tuberculosis Bacterial Disease which is hard to treat and requires 3 antibiotics for 1 year. I have been off the antibiotics for 2 weeks now and no improvement in my breathing so will go back on them in a week or two. I bring up a lot of mucus every day so it causes coughing but I think I get it all up before it causes me breathing problems. I do take Sulfatrim which I've been taking for 2 years so I dont think that is the problem. I need to rest a few minutes in between every little thing I do.Doctor says my lungs are terrible but shouldnt cause this much trouble breathing.Trying to figure out what is wrong. Took a heart scan yesterday to see if there is a problem with my heart. I never had this much trouble breathing before they diagnosed the NTM disease. I think maybe this is causing a lot of

trouble but my doctor seems to think there is something else going on. By the way I do have trouble breathing with many many antibiotics. Thanks for all your help June KSubject: Re: oxygen therapyTo: bronchiectasis Date: Monday, October 18, 2010, 12:48 AM

hi June,

did you find out the number for the degree of your hypertension?

Sorry for the dumb question, NTM is a new one on me, what is it

Other than that, even abx themselves can sometimes cause breathing

difficulties (yeah!) it pays to look at the blurb inside the

packaging or look them up on govt or reputable medical centre websites.

Not knowing other factors, as I think I mentioned some time ago I

found much of my breathing difficulties occur when I'm really full of

mucous, mucous plugs, just generally blocking off air intake. Since

being able to remove that buildup my breathing has improved, even tho

still puff on slightest exertion - guess I've just got too much

damaged lung now...

I know how distressing that feeling of fatigue and difficulty

breathing reduces you to being like an invalid, it's truly awful, i

do hope things start turning in the right direction for you...soon!

joy