re: Breathing & to

[Guest guest]

Hi there. I can relate to both stories here as well. Lou- It is very scary

to wake up and not have the strength to breathe or find the cannula. The power

seems to go out more than necessary here in NY. One night the power went out and

my husband shut my door tightly (we have a wood stove and he didn't want me to

get smoke in my room) then he went to bed. The power went off during the night

and I did not hear the concentrator beeping because the door was shut. OMG I was

scared as well and couldn't find my flashlight to get up and get my portable on

and it was a scary 60 seconds or so because I felt so disoriented and out of

breath. I had to bang on the wall with the light for him to help me because I

was so weak I couldn't turn the portable on once I located it. Trying to stay

calm that night was unbelievable! I am more prepared now-but the feeling never

goes away and you are always thinking about it. Anxiety meds help sometimes when

we need them. Try to hang in there and stay calm. I also have a clothespin or

pin to my cannula on my shirt/pjs at night so I know where it is if it falls off

my face.

- yes being on Cytoxan it takes a while to get that out of your system. It

is a powerful drug and causes havoc! I too had a UTI and never had one before.

Taking cranberry pills or drinking the cranberry juices does help. Cipro should

do the trick to help you feel a little better. Cytoxan was doing my muscles more

damage with my polymyositis and nothing has changed since I have been off since

June 08. I was hoping my muscles would bounce back a little after being off but

taking pain pills was the result instead. I hope you have better luck.

Diane PF,PM,Raynauds, Sjorgrens 2006 PH2008

[Guest guest]

Thanks Diane I did start taking the cipro but it didn't stop.I was so sick by

Tuesday that I went to the emergency room. I have bacteria in my blood so they

are growing it to see what anti biotic work best but they are giving me 3 right

now and big doses of pred . now my sugar is real high so they might have to give

me insulin for a while. I am in the cardiac wing because of my high pulse but a

have a very small valve leak but that isn't an issue right now.I never had

oxygen on before and I get tangled all the time. I am starting to feel better .

The Dr. said I was a very sick girl. Hopefully it is no super bug otherwise they

have to call the CDC. This isn't the start I had planned for New Years. Lou

I hope you are feeling better soon .Peggy I am praying for your family.Happy New

Year to everybody.I had a bronchoscopy and he said nothing is growing in their

specimen so that is good news. I know I rambled I will blame the meds.

KAREN IPF 2/07 Scleroderma Raynauds and sjogrens 4/08 Il

[Guest guest]

Dear Kiki: Thank you for praying for all of us, you are really a

wonderful person and please take care of YOU> The past few days have

been horrible for me, just don't have any strength, harder to

breathe. I hope the pulmo stops by my house today, said he would

come this week to see me. Doesn't want me going out, his office is

15 miles downtown from here.

Everyone is having a lot of problems right now with their health and

I think the winter weather we have had is contributing some of it. I

know that each day that goes by, I don't feel as strong as the day

before.

I LOVE YOU THIS DAY

MARY LOU - IPF - 02

>

> Thanks Diane I did start taking the cipro but it didn't stop.I was

so sick by Tuesday that I went to the emergency room. I have bacteria

in my blood so they are growing it to see what anti biotic work best

but they are giving me 3 right now and big doses of pred . now my

sugar is real high so they might have to give me insulin for a while.

I am in the cardiac wing because of my high pulse but a have a very

small valve leak but that isn't an issue right now.I never had oxygen

on before and I get tangled all the time. I am starting to feel

better . The Dr. said I was a very sick girl. Hopefully it is no

super bug otherwise they have to call the CDC. This isn't the start I

had planned for New Years. Lou I hope you are feeling better

soon .Peggy I am praying for your family.Happy New Year to

everybody.I had a bronchoscopy and he said nothing is growing in

their specimen so that is good news. I know I rambled I will blame

the meds.

> KAREN IPF 2/07 Scleroderma Raynauds and sjogrens 4/08 Il

>