Re: Good website, interesting article, and other stuff!

[Guest guest]

Elisa

Great links. Thanks.

Never apologize for sharing your issues and thinking others have it

worse. I can understand how you feel, knowing there is something more

that they just haven't clearly defined. I have found my sinuses often

elevate my pulse. While my sats are where they normally would be if I'm

exceptionally suggested the pulse will be higher. With our air quality

that is quite often.

As to the kids, nothing you can really do except make sure if you do get

flu to get Tamiflu fast. I have indirect exposure to teens through

so I have some already on hand for me to take if she gets it or I

do.

I am glad you're getting the stress and echo.

I think you have quite a bit going on physically and otherwise and doing

an incredible job to battle through it. Wouldn't it be nice sometimes

just to carry oxygen so people would know you have limits? I'll loan you

a tank...you can carry it empty. I do hope you remember yourself when to

say no and how to set boundaries based on your current limits.

>

>

> Hello to everybody!

>

> I am mainly a lurker here because of lack of time to read and

respond to hundreds of e-mails. I still work full-time and am not

currently on o2, so I am trying like crazy to live as fully as is

possible. I do cough continually and have many issues related to

Sjogren's and Raynaud's. I'm going in for a stress test and

echocardiogram next Wednesday (at my suggestion....grrrr!) mainly

because of a very rapid heart rate. Just sitting here right now it is in

the 90's. Doctors keep telling me that even 100 is normal, but I know

something is going on. The first day of school, it was 130 after

climbing the stairs. My sats are always still in the 90s, which I know

is surprising. My hands are throbbing most of the time and I break out

in sweats continually. I am terrified of many things these days, PH

being big on the list, followed by FLU!!! I take care of myself very

well, but know that my exposure to children on a daily basis is

dangerous. My

> husband suddenly has a suspicious cyst on his kidney and his business

of 20 years is failing. My son lost his job and will be moving back in

with us at age 23. My income and insurance are the only constants right

now. I read about so many of you and the horrible issues you are dealing

with.......so courageously! I have it good comparitively, and I know it.

> Thank those of you who post here frequently or even infrequently to

keep all of us better informed. When I can't sleep, I read e-mails from

the group in detail on my phone.

>

> The main reason I posted today was to share an a website for

physicians on pulmonology issues, called CHEST. You may have run across

it like I did, when searching for PF info. I plugged in Sjogren's

today, and got many articles of my disease related to PF. I read until I

got depressed, but found out some new and relevant info.

> http://www.chestjournal.org/

>

> Another thing I found today in my search for another pulmonologist in

Dallas, were some articles about salaries and discontent in the job as a

pulmonologist. Part of the problem is that there are not too many new

treatments that significantly help their patients to live longer. Many

of them are getting into the " sleep study " business to make a better,

and more satisfying living.

> http://www.chestjournal.org/content/127/4/1085.full

>

> http://mdsalaries.blogspot.com/2006/01/pulmonologist-salaries.html

>

> Anyway, this is my contribution for today. I do hope that those of

you reading this have a wonderful, reflective Sunday. Take care of

yourself, because nobody else does the job as well!

>

> Elisa NSIP/LIP/Sjogren's/Raynaud's Apr. '08

> age 53 Mansfield, TX

>

>

[Guest guest]

Elisa, I am sorry you and your family are experiencing so many problems.

Hopefully your husband's kidney syst is not serious. 30% of us will have one or

more by age 70, and the majority are harmless, though if they press on tissue,

they can be painful. This particular medical situation is often brought up by

those who say patients often have to deal with more stress and uncertainty than

in the past. We are doing more biopsies and imagings simply because we see more

opportunity for doing so. In past, imaging wasn't clear enough to even detect

most cysts on the kidney. Now we are aware on more cysts and hence have more

biopsies done as a consequence. Hopefully your husband's cyst will be found to

be harmless.

Your oxymeter may tell you if your lungs are not getting oxygen to your blood as

they should. I am in a similar situation in not needing oxygen therapy at

present, though I did 4 years ago. If your heart rate is above what you would

expect or know it should be, then going to your pulmonologist is the right thing

to do. And If you are getting to the point where you may need oxygen on

exertion, don't hesitate to use it. Your higher pulse could be a sign that you

may benefit from O2 therapy on exertion. I don't mind my heart pumping fast if

it and my body tissues are getting the oxygen they require. Take your O2 meter

to work with you and check your O2 at the top of stairs, and also check to see

how long before your O2 returns to normal at rest. That will help your

pulmonologist do a better assessment.

I will be thinking about you and your wonderful family, and you are one of those

special teachers who will always be needed and loved.

Jerry?Mississippi/54/IPF/dx April 05

> >

> >

> > Hello to everybody!

> >

> > I am mainly a lurker here because of lack of time to read and

> respond to hundreds of e-mails. I still work full-time and am not

> currently on o2, so I am trying like crazy to live as fully as is

> possible. I do cough continually and have many issues related to

> Sjogren's and Raynaud's. I'm going in for a stress test and

> echocardiogram next Wednesday (at my suggestion....grrrr!) mainly

> because of a very rapid heart rate. Just sitting here right now it is in

> the 90's. Doctors keep telling me that even 100 is normal, but I know

> something is going on. The first day of school, it was 130 after

> climbing the stairs. My sats are always still in the 90s, which I know

> is surprising. My hands are throbbing most of the time and I break out

> in sweats continually. I am terrified of many things these days, PH

> being big on the list, followed by FLU!!! I take care of myself very

> well, but know that my exposure to children on a daily basis is

> dangerous. My

> > husband suddenly has a suspicious cyst on his kidney and his business

> of 20 years is failing. My son lost his job and will be moving back in

> with us at age 23. My income and insurance are the only constants right

> now. I read about so many of you and the horrible issues you are dealing

> with.......so courageously! I have it good comparitively, and I know it.

> > Thank those of you who post here frequently or even infrequently to

> keep all of us better informed. When I can't sleep, I read e-mails from

> the group in detail on my phone.

> >

> > The main reason I posted today was to share an a website for

> physicians on pulmonology issues, called CHEST. You may have run across

> it like I did, when searching for PF info. I plugged in Sjogren's

> today, and got many articles of my disease related to PF. I read until I

> got depressed, but found out some new and relevant info.

> > http://www.chestjournal.org/

> >

> > Another thing I found today in my search for another pulmonologist in

> Dallas, were some articles about salaries and discontent in the job as a

> pulmonologist. Part of the problem is that there are not too many new

> treatments that significantly help their patients to live longer. Many

> of them are getting into the " sleep study " business to make a better,

> and more satisfying living.

> > http://www.chestjournal.org/content/127/4/1085.full

> >

> > http://mdsalaries.blogspot.com/2006/01/pulmonologist-salaries.html

> >

> > Anyway, this is my contribution for today. I do hope that those of

> you reading this have a wonderful, reflective Sunday. Take care of

> yourself, because nobody else does the job as well!

> >

> > Elisa NSIP/LIP/Sjogren's/Raynaud's Apr. '08

> > age 53 Mansfield, TX

> >

> >

>