Re: I think I might be getting worse

[Guest guest]

Hi Joyce,

As far as the stair situation, I only have a half bath on first floor so I will

always have to go up. It is SO scary the way my heart rate shoots up to 130-140

with O2 up to 6 lpm going upstairs. But i do limit going upstairs to once a day

and I do everything else downstairs. - nne, ILD 6/09

> >

> > nne,

> > You're not complaining, you are sick!!! How long have you been on the

zitromax? If it's more than three or four days you should be beginning to feel

better. Since you're not I would call the doctor.

> > I agree that an elevated sed rate when you're on pred is somewhat odd. 

There are more than three blood tests for connective tissue disease...you

definitely need that consult at Columbia. You need a full fledged work up for

all this stuff.

> >

> > Please try to rest and use as much oxygen as you need to keep your sats up.

Don't try to do without!

> >

> > Hugs,

> >  

> > Beth

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >  

> >  

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: teddyspenguins <teddyspenguins@ ...>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Fri, October 2, 2009 3:57:43 PM

> > Subject: RE: I think I might be getting worse

> >

> >  

> > Hi everyone,

> > VERY depressed the past week. Last week I was having a log of muscle

pain/weakness especially in my fingers which have also swelled up. It is so

difficult to even type - I am on Motrin all day long.I developed a low grade

fever which would come and go along with a rash on my face that would come and

go. Went to see my pulmodude and he felt I had a URI and gave me zitromax 500mg

for 6 days. He also did bloodwork. We discussed the fact that i have had 3 blood

tests checking for connective tissue disease that come back negative. I talked

to him on Tuesday and I have elevations in white count, platelets and liver

enzymes but he said it was slightly elevated and he thinks it is due to

prednisone(i' m on 10 mgs). What was really high was the SED rate and he just

can't understand with being on prednisone why it's so high. He also remarked

that I BARELY move and my SATS drop. I go from chair to exam table and go down

to high 80's. I can't even take a shower

> > without O2(and that's an adventure every morning)- I almost fainted without

it.My SATS are even getting into the 70's when I walk no more than 20 feet

without O2 or when I climb my flight of stairs at home with portable O2 on 5LPM.

My oximeter is telling me the same info. PLUS last Friday Columbia called

rescheduling my appt since the doc is not available this week. Now I have to

wait until Oct 16 but I have the feeling even on the 16th it will just be

filling out MORE paperwork. Maybe the setback is because of URI? I don't know

anymore! Thanks for letting me vent- sorry to always be complaining.

> > nne, Ild 6/09

> >

>

[Guest guest]

I have a split level home.......Lots of (* & %$*$ en) stairs. My studio and TV room are on the main floor and everything else is upstairs............limit my going up stairs to twice a day, I understand the heart rate and the 6l.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Monday, October 5, 2009 10:41:53 AMSubject: Re: I think I might be getting worse

Hi Joyce,As far as the stair situation, I only have a half bath on first floor so I will always have to go up. It is SO scary the way my heart rate shoots up to 130-140 with O2 up to 6 lpm going upstairs. But i do limit going upstairs to once a day and I do everything else downstairs. - nne, ILD 6/09> >> > nne,> > You're not complaining, you are sick!!! How long have you been on the zitromax? If it's more than three or four days you should be beginning to feel better.. Since you're not I would call the doctor. > > I agree that an elevated sed rate when you're on pred is somewhat odd. There are more than three blood tests for connective tissue disease...you

definitely need that consult at Columbia. You need a full fledged work up for all this stuff. > > > > Please try to rest and use as much oxygen as you need to keep your sats up. Don't try to do without!> > > > Hugs,> > > > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > > > > > > > > ____________ _________ _________ __> > From: teddyspenguins <teddyspenguins@ ...>> > To: Breathe-Support@ yahoogroups. com> > Sent: Fri, October 2, 2009 3:57:43 PM> > Subject: RE: I think I might be getting worse> > > > > > Hi everyone,> > VERY depressed the past week. Last week I was having a log of muscle pain/weakness especially in my fingers which have

also swelled up. It is so difficult to even type - I am on Motrin all day long.I developed a low grade fever which would come and go along with a rash on my face that would come and go. Went to see my pulmodude and he felt I had a URI and gave me zitromax 500mg for 6 days. He also did bloodwork. We discussed the fact that i have had 3 blood tests checking for connective tissue disease that come back negative. I talked to him on Tuesday and I have elevations in white count, platelets and liver enzymes but he said it was slightly elevated and he thinks it is due to prednisone(i' m on 10 mgs). What was really high was the SED rate and he just can't understand with being on prednisone why it's so high. He also remarked that I BARELY move and my SATS drop. I go from chair to exam table and go down to high 80's. I can't even take a shower> > without O2(and that's an adventure every morning)- I almost fainted without it.My SATS are even getting into

the 70's when I walk no more than 20 feet without O2 or when I climb my flight of stairs at home with portable O2 on 5LPM. My oximeter is telling me the same info. PLUS last Friday Columbia called rescheduling my appt since the doc is not available this week. Now I have to wait until Oct 16 but I have the feeling even on the 16th it will just be filling out MORE paperwork.. Maybe the setback is because of URI? I don't know anymore! Thanks for letting me vent- sorry to always be complaining.> > nne, Ild 6/09> >>