Re: Another lurker coming out

[Guest guest]

The best place to start on exercise is pulmonary rehab. You want it,

they'll prescribe it. The key is having the right oxygen flow as you do.

Many of us use far more on our treadmills than otherwise. And, the other

key is building up to it.

As to maintaining weight, most of us don't have that problem. However,

supplements like Ensure are sometimes prescribed. I'd ask my doctor.

>

> Hi All,

> I too have been monitoring the group for oh, 2 months I guess. I've

been reading and saving messages for future reference. I've gleaned

loads of good information and encouragement just " listening in " . You

guys are a great group.

> I have questions, so I plan on being a bit of a pest here and there

^.^

> My main issues right now are the breathlessness on trying to exercise

and I need to gain weight and am finding it really, really tough to just

maintain my weight as it is.

> Thanks for being here guys. God Bestest Blessings to you <><

>

> Hall

> Citrus Heights, Calif.

>

> A short medical introduction:

> Sjogren's syndrome since 1991RA since 1991dx NHL in 1999, nodes

noticed on lungs. (they called them COPD) dx with IPF in 2006 then

changed it to LAM, now it seems what I have most nearly resembles LIP

(Lymphocytic Interstitial Pneumonia)Treatments are:

> prednisone ,10 mgs , Imuran 100 mgs, Plaquenil 20 mgs, 02/ 2 Lpm with

exercise, Advair 2x daily, and Albuteral as needed.

>

[Guest guest]

Hi ,

Glad you joined us! I noticed you only use 2L with exercise and wonder if that is part of your breathlessness. Have you checked your sats when you are exercising? I only use 2 or 3 L when walking but when exercising I need a lot more to keep my heat rate down and my O2 level above 92. Also, where is Citrus Heights? I am trying to get a Southern California Support group going. Are you close to Orange County or San Diego? God's blessings to you too- R. (52) Sarcoid/PF 3/2006 Carlsbad, California

Subject: Another lurker "coming out"To: Breathe-Support Date: Tuesday, November 18, 2008, 5:03 PM

Hi All,I too have been monitoring the group for oh, 2 months I guess. I've been reading and saving messages for future reference. I've gleaned loads of good information and encouragement just "listening in". You guys are a great group. I have questions, so I plan on being a bit of a pest here and there ^.^My main issues right now are the breathlessness on trying to exercise and I need to gain weight and am finding it really, really tough to just maintain my weight as it is.Thanks for being here guys. God Bestest Blessings to you <>< HallCitrus Heights, Calif.A short medical introduction:

Sjogren's syndrome since 1991

RA since 1991

dx NHL in 1999, nodes noticed on lungs. (they called them COPD)

dx with IPF in 2006 then changed it to LAM, now it seems what I have most nearly resembles LIP (Lymphocytic Interstitial Pneumonia)Treatments are:prednisone ,10 mgs , Imuran 100 mgs, Plaquenil 20 mgs, 02/ 2 Lpm with exercise, Advair 2x daily, and Albuteral as needed.

[Guest guest]

Hi Bruce,Thanks for the input.I emailed my doctor just a bit ago to see if he will get me into pulmonary rehab. It would be nice to have help to know just how hard to push myself.I'm drinking 2 ensures a day and eating as much as I can tolerate, but if I'm moving I'm breathing really hard and I think that's the main problem. Kind of a catch 22. gotta keep moving. ^.^But any and all suggestions are appreciated.Thanks again,Blessings <><

The best place to start on exercise is pulmonary rehab. You want it,

they'll prescribe it. The key is having the right oxygen flow as you do.

Many of us use far more on our treadmills than otherwise. And, the other

key is building up to it.

As to maintaining weight, most of us don't have that problem. However,

supplements like Ensure are sometimes prescribed. I'd ask my doctor.

>

> Hi All,

> I too have been monitoring the group for oh, 2 months I guess. I've

been reading and saving messages for future reference. I've gleaned

loads of good information and encouragement just "listening in". You

guys are a great group.

> I have questions, so I plan on being a bit of a pest here and there

^.^

> My main issues right now are the breathlessness on trying to exercise

and I need to gain weight and am finding it really, really tough to just

maintain my weight as it is.

> Thanks for being here guys. God Bestest Blessings to you <><

>

> Hall

> Citrus Heights, Calif.

>

> A short medical introduction:

> Sjogren's syndrome since 1991RA since 1991dx NHL in 1999, nodes

noticed on lungs. (they called them COPD) dx with IPF in 2006 then

changed it to LAM, now it seems what I have most nearly resembles LIP

(Lymphocytic Interstitial Pneumonia)Treatment s are:

> prednisone ,10 mgs , Imuran 100 mgs, Plaquenil 20 mgs, 02/ 2 Lpm with

exercise, Advair 2x daily, and Albuteral as needed.

>