Re: Bruce

[Guest guest]

Bruce, I am on a Z pac and will see my Dr. Wed. She just called and told me not to come for the PFT's until I am back to my base. So thanks for caring. Knowing her she will call or e-mail me later tonight or in the AM. to check in.I am taking the little pearls also. trotting,cramping but taking them to hopefully help the cough. Warm tea with honey is the best. Gonna try to take the Ty guys Wed.. Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." PeggyIf you aren't completely well, do not go from today until Wed withoutantibiotics. GET MORE TODAY!In our conditions and with today's antibiotic resistance, the odds ofone round of an antibiotic being enough are slimmer and slimmer. Everyday you miss between sets you back at least 2 or 3 in the process.Do not wait for a Wed doctor appointment, plllllllllleeeeeeeeeeeease.>>> ,>> Boy do you sound calm, cool and collected. I know you don't feel that> way on the inside. I'll be thinking of you both and praying. Don't> forget to take care of yourself too!>> Love,>>>> Beth> Age 48 Fibrotic NSIP 06/06 UCTD 07/08>> Change everything. Love and Forgive>>>>> Mike's in the hospital>> Good morning!!! Actually it's the middle of the night!> I just left Mike at the hospital.We had to call 911...he was having> chest discomfort and his> blood pressure was very high ( 165/98) and his Heart rate was 160.> He wouldn't let me call right away but after 1 hour I did.> Anyway he's staying the night at least..they have to rerun the EKG> and blood work to> check to see if the enzyme numbers go back to mormal..they were> elevated,> and may have to do a cath ( he had a nuclear stress test in April and> it was fine!)> It may or may not have been a heart attack...> He went through this 2 years ago and it wasn't one.!!!!We're both> scared Sh--less!!!> I'm up because I drove behind the ambulance and had to be able to> drive home,> so I drank a real Pepsi...sugar and caffeine!!! I'm probably not> going to sleep> bcause I have to be up at 8:00 to let theLiquid O2 guy in. I dare not> take the Lunesta> because I'll never get up on time.> I'll keep you posted.>> --> Z 64, fibriotic NSIP/o5/PA>> And “mild†PH/10/07 and Reynaud’s too!!>> No, NSIP was not self-inflicted…I never smoked!>> Potter, reader,carousel lover and MomMom to Darah>> and Sara>> “I’m gonna be iron like a lion in Zion†BobMarley>> Vinca Minor-periwinkle is my flower>

[Guest guest]

Beth

I don't know about any others here but I generally find the Zpacs to be

too weak in today's world and with our conditions. If I need an

antibiotic, I'm going straight to Levaquin. Fortnately, I've had no side

effects from it.

Just take care and get well.

> >

> >

> > ,

> >

> > Boy do you sound calm, cool and collected. I know you don't feel

that

> > way on the inside. I'll be thinking of you both and praying. Don't

> > forget to take care of yourself too!

> >

> > Love,

> >

> >

> >

> > Beth

> > Age 48 Fibrotic NSIP 06/06 UCTD 07/08

> >

> > Change everything. Love and Forgive

> >

> >

> >

> >

> > Mike's in the hospital

> >

> > Good morning!!! Actually it's the middle of the night!

> > I just left Mike at the hospital.We had to call 911...he was having

> > chest discomfort and his

> > blood pressure was very high ( 165/98) and his Heart rate was 160.

> > He wouldn't let me call right away but after 1 hour I did.

> > Anyway he's staying the night at least..they have to rerun the EKG

> > and blood work to

> > check to see if the enzyme numbers go back to mormal..they were

> > elevated,

> > and may have to do a cath ( he had a nuclear stress test in April

and

> > it was fine!)

> > It may or may not have been a heart attack...

> > He went through this 2 years ago and it wasn't one.!!!!We're both

> > scared Sh--less!!!

> > I'm up because I drove behind the ambulance and had to be able to

> > drive home,

> > so I drank a real Pepsi...sugar and caffeine!!! I'm probably not

> > going to sleep

> > bcause I have to be up at 8:00 to let theLiquid O2 guy in. I dare

not

> > take the Lunesta

> > because I'll never get up on time.

> > I'll keep you posted.

> >

> > --

> > Z 64, fibriotic NSIP/o5/PA

> >

> > And  " mild†PH/10/07 and Reynaud’s

too!!

> >

> > No, NSIP was not self-inflicted…I never smoked!

> >

> > Potter, reader,carousel lover and MomMom to Darah

> >

> > and Sara

> >

> >  " I’m gonna be iron like a lion in

Zion†Bob

> Marley

> >

> > Vinca Minor-periwinkle is my flower

> >

>

[Guest guest]

LOL  not Beth but the Z pacs usually work well for me. I have had leviquin before and if necessary she will give me that Wed. It doesn't feel like it's in  my chest my throat and the stupid cough. hurts. Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." BethI don't know about any others here but I generally find the Zpacs to betoo weak in today's world and with our conditions. If I need anantibiotic, I'm going straight to Levaquin. Fortnately, I've had no sideeffects from it.Just take care and get well.> >> >> > ,> >> > Boy do you sound calm, cool and collected. I know you don't feelthat> > way on the inside. I'll be thinking of you both and praying. Don't> > forget to take care of yourself too!> >> > Love,> >> >> >> > Beth> > Age 48 Fibrotic NSIP 06/06 UCTD 07/08> >> > Change everything. Love and Forgive> >> >> >> >> > Mike's in the hospital> >> > Good morning!!! Actually it's the middle of the night!> > I just left Mike at the hospital.We had to call 911...he was having> > chest discomfort and his> > blood pressure was very high ( 165/98) and his Heart rate was 160.> > He wouldn't let me call right away but after 1 hour I did.> > Anyway he's staying the night at least..they have to rerun the EKG> > and blood work to> > check to see if the enzyme numbers go back to mormal..they were> > elevated,> > and may have to do a cath ( he had a nuclear stress test in Apriland> > it was fine!)> > It may or may not have been a heart attack...> > He went through this 2 years ago and it wasn't one.!!!!We're both> > scared Sh--less!!!> > I'm up because I drove behind the ambulance and had to be able to> > drive home,> > so I drank a real Pepsi...sugar and caffeine!!! I'm probably not> > going to sleep> > bcause I have to be up at 8:00 to let theLiquid O2 guy in. I darenot> > take the Lunesta> > because I'll never get up on time.> > I'll keep you posted.> >> > --> > Z 64, fibriotic NSIP/o5/PA> >> > And â€Å"mild†PH/10/07 and Reynaud’stoo!!> >> > No, NSIP was not self-inflicted…I never smoked!> >> > Potter, reader,carousel lover and MomMom to Darah> >> > and Sara> >> > â€Å"I’m gonna be iron like a lion inZion†Bob> Marley> >> > Vinca Minor-periwinkle is my flower> >>

[Guest guest]

Peggy

Well, I was thinking of MB and how both she and I don't like the idea of

you running out of antibiotics.

> > >

> > >

> > > ,

> > >

> > > Boy do you sound calm, cool and collected. I know you don't feel

> that

> > > way on the inside. I'll be thinking of you both and praying. Don't

> > > forget to take care of yourself too!

> > >

> > > Love,

> > >

> > >

> > >

> > > Beth

> > > Age 48 Fibrotic NSIP 06/06 UCTD 07/08

> > >

> > > Change everything. Love and Forgive

> > >

> > >

> > >

> > >

> > > Mike's in the hospital

> > >

> > > Good morning!!! Actually it's the middle of the night!

> > > I just left Mike at the hospital.We had to call 911...he was

having

> > > chest discomfort and his

> > > blood pressure was very high ( 165/98) and his Heart rate was 160.

> > > He wouldn't let me call right away but after 1 hour I did.

> > > Anyway he's staying the night at least..they have to rerun the EKG

> > > and blood work to

> > > check to see if the enzyme numbers go back to mormal..they were

> > > elevated,

> > > and may have to do a cath ( he had a nuclear stress test in April

> and

> > > it was fine!)

> > > It may or may not have been a heart attack...

> > > He went through this 2 years ago and it wasn't one.!!!!We're both

> > > scared Sh--less!!!

> > > I'm up because I drove behind the ambulance and had to be able to

> > > drive home,

> > > so I drank a real Pepsi...sugar and caffeine!!! I'm probably not

> > > going to sleep

> > > bcause I have to be up at 8:00 to let theLiquid O2 guy in. I dare

> not

> > > take the Lunesta

> > > because I'll never get up on time.

> > > I'll keep you posted.

> > >

> > > --

> > > Z 64, fibriotic NSIP/o5/PA

> > >

> > > And  " mild†PH/10/07 and

Reynaudââ

> ‚¬â„¢s

> too!!

> > >

> > > No, NSIP was not self-inflicted…I never

smoked!

> > >

> > > Potter, reader,carousel lover and MomMom to Darah

> > >

> > > and Sara

> > >

> > >  " I’m gonna be iron

like a lion in

> Zion†Bob

> > Marley

> > >

> > > Vinca Minor-periwinkle is my flower

> > >

> >

>

[Guest guest]

Bruce,

I really think it depends....Levaquin is not without it's problems so I can understand it not being the very first thing that's prescribed. Some of us have had to be on antibiotics alot more than others. For most of my life needing an antibiotic was a rarity for me. Even since I was diagnosed with fibrosis I've only had to be on an antibiotic once. If my doctor wanted to start with something like Zithromax and work up from there I'd be open to it. Some of us know that our situations dictate that the big guns come out immediately. This is where having a physician whose judgement you trust is essential. If they know us and our history, hopefully they choose the correct antibiotic for us!

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Mike's in the hospital> >> > Good morning!!! Actually it's the middle of the night!> > I just left Mike at the hospital.We had to call 911...he was having> > chest discomfort and his> > blood pressure was very high ( 165/98) and his Heart rate was 160.> > He wouldn't let me call right away but after 1 hour I did.> > Anyway he's staying the night at least..they have to rerun the EKG> > and blood work to> > check to see if the enzyme numbers go back to mormal..they were> > elevated,> > and may have to do a cath ( he had a nuclear stress test in Apriland> > it was

fine!)> > It may or may not have been a heart attack...> > He went through this 2 years ago and it wasn't one.!!!!We're both> > scared Sh--less!!!> > I'm up because I drove behind the ambulance and had to be able to> > drive home,> > so I drank a real Pepsi...sugar and caffeine!!! I'm probably not> > going to sleep> > bcause I have to be up at 8:00 to let theLiquid O2 guy in. I darenot> > take the Lunesta> > because I'll never get up on time.> > I'll keep you posted.> >> > --> > Z 64, fibriotic NSIP/o5/PA> >> > And â€Å"mildâ€Â� PH/10/07 and Reynaud’stoo!!> >> > No, NSIP was not self-inflicted…I never smoked!> >> > Potter, reader,carousel lover and MomMom to Darah> >> >

and Sara> >> > â€Å"I’m gonna be iron like a lion inZionâ€Â� Bob> Marley> >> > Vinca Minor-periwinkle is my flower> >>

[Guest guest]

MB

I didn't mean to imply Levaquin was right for everyone. Main thing is to

do whatever necessary to clear up the problem. It would appear her Z pac

hasn't at this point. I guess one day without isn't a huge thing but if

it were me I'd sort of feel like I was giving back some part of whatever

ground had been made. I know that more and more the basic runs of Z pacs

or even ten days of Levaquin aren't being enough. I see lots of school

age kids given antibiotics, get almost well, run out, right back to

where they were, repeat. So even there I caution moms I know if they

aren't well, get back to doctor or call or something before you run out

and they relapse any.

I suspect I've had way too many antibiotics in my life. I know the old

standard of Cipro doesn't do it for me at all and hasn't for years.

Fortunately, to this point, while I have a long long list of conditions,

I still rarely get colds or infections. I'm healthy to be so unhealthy.

Its like an opthalmologist told me years ago: " you have good eyes for

someone who can't see. "

Yes, if doctor who knows you best wants to start with Zpac makes sense.

Just no stopping if not well. Now, I am under instructions from my

Pulmonologist that if its another doctor prescribing to tell him I need

to start with Levaquin, but that only applies to me. Today, because I'm

fortunate enough to have an accessable pulmonologist, if I had anything

of the nature to affect breathing or possible infection I would go to my

pulmonologist for the treatment.

As an aside, don't you hate going to your primary doctor's office now

with all the coughing and sneezing and nose blowing and germs all

around? I stay away from the waiting room, standing down the hall a bit.

I do the same thing at the lab downstairs. I feel like there is a

conspiracy of germs there waiting. How do others feel? Any of you wear

masks to your primary?

> > >

> > >

> > > ,

> > >

> > > Boy do you sound calm, cool and collected. I know you don't feel

> that

> > > way on the inside. I'll be thinking of you both and praying. Don't

> > > forget to take care of yourself too!

> > >

> > > Love,

> > >

> > >

> > >

> > > Beth

> > > Age 48 Fibrotic NSIP 06/06 UCTD 07/08

> > >

> > > Change everything. Love and Forgive

> > >

> > >

> > >

> > >

> > > Mike's in the hospital

> > >

> > > Good morning!!! Actually it's the middle of the night!

> > > I just left Mike at the hospital.We had to call 911...he was

having

> > > chest discomfort and his

> > > blood pressure was very high ( 165/98) and his Heart rate was 160.

> > > He wouldn't let me call right away but after 1 hour I did.

> > > Anyway he's staying the night at least..they have to rerun the EKG

> > > and blood work to

> > > check to see if the enzyme numbers go back to mormal..they were

> > > elevated,

> > > and may have to do a cath ( he had a nuclear stress test in April

> and

> > > it was fine!)

> > > It may or may not have been a heart attack...

> > > He went through this 2 years ago and it wasn't one.!!!!We're both

> > > scared Sh--less!!!

> > > I'm up because I drove behind the ambulance and had to be able to

> > > drive home,

> > > so I drank a real Pepsi...sugar and caffeine!!! I'm probably not

> > > going to sleep

> > > bcause I have to be up at 8:00 to let theLiquid O2 guy in. I dare

> not

> > > take the Lunesta

> > > because I'll never get up on time.

> > > I'll keep you posted.

> > >

> > > --

> > > Z 64, fibriotic NSIP/o5/PA

> > >

> > > And  " mild� PH/10/07 and

Reynaud’s

> too!!

> > >

> > > No, NSIP was not self-inflicted…I never

smoked!

> > >

> > > Potter, reader,carousel lover and MomMom to Darah

> > >

> > > and Sara

> > >

> > >  " I’m gonna be iron

like a lion in

> Zion� Bob

> > Marley

> > >

> > > Vinca Minor-periwinkle is my flower

> > >

> >

>

[Guest guest]

Well, since I developed an allergy to Levaquine it is not an option

for me. Now, they usually dump me in the hospital and pump in

rosefin and vancomycin as the little guns rarely fix what ails me.

Zpac has not killed the bugs I seem to get for a long time.

Luckily it does not happen often, of late. Knock on wood!

Tom from PA Stills Disease 05/05 Asthma 11/06 PF 05/08

> > >

> > >

> > > ,

> > >

> > > Boy do you sound calm, cool and collected. I know you don't feel

> that

> > > way on the inside. I'll be thinking of you both and praying.

Don't

> > > forget to take care of yourself too!

> > >

> > > Love,

> > >

> > >

> > >

> > > Beth

> > > Age 48 Fibrotic NSIP 06/06 UCTD 07/08

> > >

> > > Change everything. Love and Forgive

> > >

> > >

> > >

> > >

> > > Mike's in the hospital

> > >

> > > Good morning!!! Actually it's the middle of the night!

> > > I just left Mike at the hospital.We had to call 911...he was

having

> > > chest discomfort and his

> > > blood pressure was very high ( 165/98) and his Heart rate was

160.

> > > He wouldn't let me call right away but after 1 hour I did.

> > > Anyway he's staying the night at least..they have to rerun the

EKG

> > > and blood work to

> > > check to see if the enzyme numbers go back to mormal..they were

> > > elevated,

> > > and may have to do a cath ( he had a nuclear stress test in

April

> and

> > > it was fine!)

> > > It may or may not have been a heart attack...

> > > He went through this 2 years ago and it wasn't one.!!!!We're

both

> > > scared Sh--less!!!

> > > I'm up because I drove behind the ambulance and had to be able

to

> > > drive home,

> > > so I drank a real Pepsi...sugar and caffeine!!! I'm probably not

> > > going to sleep

> > > bcause I have to be up at 8:00 to let theLiquid O2 guy in. I

dare

> not

> > > take the Lunesta

> > > because I'll never get up on time.

> > > I'll keep you posted.

> > >

> > > --

> > > Z 64, fibriotic NSIP/o5/PA

> > >

> > > And  " mildâ€� PH/10/07 and Reynaudâ

€™s

> too!!

> > >

> > > No, NSIP was not self-inflicted…I never smoked!

> > >

> > > Potter, reader,carousel lover and MomMom to Darah

> > >

> > > and Sara

> > >

> > >  " I’m gonna be iron like a lion in

> Zion� Bob

> > Marley

> > >

> > > Vinca Minor-periwinkle is my flower

> > >

> >

>

[Guest guest]

Jane

In an ideal situation you'd just use the demand settings. I have lots of

allergies and sinus congestion at times and at other times just don't

breathe as much as I should. I have come to realize when the demand

isn't working well for me more quickly now. However, here is how I do

it. First, I watch my sats. If I'm on 4 demand and they're dropping its

time for continuous. I also listen to the clicking. If I'm not hearing

it enough or too slow between clicks (for those who aren't aware the

marathon makes a clicking noise that you hear based on each breath-its a

bit loud to the user, but not bad for others around).

Now, I have the occasional day in which I'm so congested, its pretty

much continuous from the start. However, thats rare. More often what I

encounter is when I start moving fast. I'll have it set on 4 demand and

see my sats dropping and flip it over to continuous. This could be

walking through a store or walking anywhere in the 100+ degree heat (the

stifling heat definitely leads me to need more). When that happens I

just go to continuous. Then when I stop walking I can go back to demand

normally.

You want to use demand as much as possible to conserve as on 2 demand

you can get 17-18 hours versus about 5.5 on 2 continuous. However, you

don't want your sats to drop. Thats why I love the Marathon. It has the

continuous settings the Helios Plus doesn't but the demand than the

Companion1000 doesn't.

As to usage, here are approximations:

2 Demand-17 hours

2 Continuous-5.5 hours

3 Demand-11.5 hours

3 Continuous-3.8 hours

4 Demand 9 hours

4 Continuous-3 hours

Now that assumes all the way full. I know I change the settings more

than most people but its to get the most hours while keeping my sats up.

Here's an example of what I might do.

Put it on and walk to my van at 3 Demand. Turn it down to 1.5 demand in

van. Rush into convenience store-4 Demand. Back to van and 1.5 demand.

Drive to Walmart. Get out to go inside in 105 degrees. Realize demand

not making it. Turn it briefly to 4 Continuous. Once I get inside and

put the Marathon in the shopping cart, I find I can turn it down to 3

continuous. Head back to car and then back to 1.5 demand. I decide to go

to Fry's Electronics and just do a slow walk through looking at new

stuff, not going to buy anything. I find that 3 demand works good for

that. I might spend an hour just walking around aimlessly but

discovering cool things. This is part of my get out even though its too

hot to do anything. Then back to car and back on 1.5 demand. Now ride to

friend's in Denton. On the way my sats are ok, so turn it off. Get

there. 3 Demand to go in. Sit around talking and watching tv at 1.5

demand. Five hours later, 3 demand to Van. Back home with it off. Get

out and go inside on 3 demand.

Total time on the portable that day 8 hours. Marathon still about half

full. Of course most of that evaporates over night. But the good part is

I got all the continuous I needed but conserved most of the time. I've

had to turn it up to 5 Continuous before for a brief time to get sats

where they belong. But even on an active day, you spend a good bit of

time sitting or just standing. Going to doctor's offices, you're in the

car, then the waiting room, then the examining room. All those times I'm

able to conserve. Normally walking in and out I can get by on 3-4

Demand. Sometimes I have to use continuous. But rarely do I need

continuous for the whole trip and most people wouldn't ever.

Now, I find I do need a higher setting on demand generally than I would

on continuous. Thats normal with a Marathon and the degree is based on

your breathing habits.

>

>

> Bruce,

>

> I have a question about the Helios Marathon. I have one just like

> yours. How do you know when to switch between continous & pulse? When

> you are on continous how long is it before your tank is empty? I think

> we are on about the same liter flow. I use pulse 3 or 4 for active

> moments or 3 continous or 2 continous or 2.5 pulse when sitting. I

sure

> could use some of your advice.

>

> Toodles!

>

> Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>

[Guest guest]

Jane

One more thing. There are two types of cannulas available for the

Marathon. The most common sends you air through one nostril and gets the

exhale from the other. However, there is one that has inhale and exhale

in both nostrils. It is designed for sinus congestion and makes it more

likely that demand will work for you. The negative is that to get both

inhale and exhale in both nostrils the cannula is bigger and a bit more

noticeable even than a regular one. But still I do use it at times.

> >

> >

> > Bruce,

> >

> > I have a question about the Helios Marathon. I have one just like

> > yours. How do you know when to switch between continous & pulse?

When

> > you are on continous how long is it before your tank is empty? I

think

> > we are on about the same liter flow. I use pulse 3 or 4 for active

> > moments or 3 continous or 2 continous or 2.5 pulse when sitting. I

> sure

> > could use some of your advice.

> >

> > Toodles!

> >

> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

> >

>