Re: Sherry

[Guest guest]

Hi Joyce,

Yes, I've read most of your posts since I've joined. We certainly

have lots in common with this terrible disease. Thankfully, it seems

people with an " autoimmune " component (my terminology) seem to do

better long-term. Do you use NAC or like myself Musinex DM? My dr

at Vanderbilt in Nashville said he didn't recommend NAC, but after

reading about it on this board, that Musinex DM did about the same

thing, I've continued using it, twice a day - two pills. Plus I take

Clarentin D twice a day - 12 hour decongestant/antihistamine. These

I've added myself. I've come to the conclusion that drs don't know

everything!

I do get fatigued very easily, sad to say. I take a nap or at least

lie down for a couple of hours almost every day & still sleep at

night! Taking the immunosuppressant Imuran 200 mg daily for the past

8 years have kept me fairly stable, although I've also taken varying

amts of Prednisone - UGH!

Now after trying to recover from pneumonia in Feb AND again in March,

I am SLOWLY trying to once again taper off the Prednisone from 20 mg

to as low as I can get without backsliding. This, along with doing

the treadmill 5 days per week, I am hoping to once again get back to

where I was before these past illnesses and avoid a decision about

transplantation AGAIN.

I now think I got too excited when I started dropping & thought

something else was wrong with me. Now I'm sure I was experiencing

a " flare " . Why the docs didn't think the same thing is anyone's

guess, but then I didn't consult a rheumatologist - the expert in

autoimmune diseases.

One time here lately you mentioned having trouble " blowing " your nose

while on O2 & keeping the cannula in at the same time. Have you ever

just tried putting the cannula in your mouth during this time? When

my mother was in the nursing home and breathing through her mouth,

that's what the nurses did. It seemed to work for her.

Hope we can continue our dialogue and share experiences. I know this

is a long e-mail - sorry!

Sherry , 64

NSIP '98, Bronchiectasis, PBC (primary biliary cirrhosis), PAH 2008,

& oral lichen planus--an associated autoimmune disease with PBC

>

>

> Hi Sherry,

>

> I was reading your " bio " to Peggy. Your disease has followed much

the

> same course as mine. I am almost 64, I was diagnosed at 52. At

that

> time they said Pulmonary Fibrosis secondary to Connective Tissue

> Diseases, primarily Lupus. I had open lung biopsy. My docs now

tell me

> that the pattern on that biopsy looks more like UIP than any other

form.

>

> Anyway, I developed Bronchiectasis. For me, it is the worst part.

I

> have so much mucus and have to work so hard to keep my lungs

clear. I

> see that you have PAH, so do I. Just diagnosed within the last six

> months. It is in the severe stage and I have to take a drug Flolan

> through a main line in my chest.

>

> I am so glad that I have survived so long, but the battle is

becoming so

> hard. Some days it is just overwhelming. Do you ever feel the

fatigue

> of it all?

>

> I was turned down for transplant because of an autoimmune blood

clotting

> disorder. And some heart problems. So, I just keep taking all the

meds

> and praying for one more day. God has granted me many of those

days and

> I am thankful.

>

> I am glad you are here. We learn so much from one another.

>

> Hugs, Joyce D.

>

> Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary

Hypertension

> 2008

> Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)

Rejected

> for Transplant 2006

> .....I will not forget you. Behold, I have engraved you on the

palm of

> my hands. Isaiah 49: 15-16

>