Re: Prednisone, swine flu and updates!

[Guest guest]

It is Soooooooooooooooo GOOD to hear from you R...

CONGRATULATIONS

what a wonderful achievement finishing your Masters....your forgiven for not being around if THAT's what you've been up to.

I bet you're enjoying the break from Pred & it IS a great pity that it seems as though you'll need to re-visit....BUT Sarcoidosis IS one of those ones that Prednisone is known to be effective against girl...now you have the Proof which is always helpful when you have to do something unpalatable.

I'm not surprised your family wants you around ... inspite of puffy cheeks!

I've missed your Posts....

lots of lvoe n' hugs,

in Oz

>> Hi Dear Family,> It has been forever since I have posted and I wanted to check in and let all of you know how I am doing. First of all I finished my Masters Degree yesterday and after taking a two month break I am planning to apply at various colleges to teach online. I am hoping to make just enough to suppliment my disability income so that I can continue to visit my grandkids several times a year.> > Second, I have been off of prednisone for two months now and feel fantastic. I have lost weight, am not puffy , sleep great, have energy, etc.,etc. Yesterday ( a big day for me:) I took my PF tests and visited the pulmo doc and unfortunately my test results are not so fantastic. In May of 06 before starting the prednisone my lung volume was a dismal 34%. The prednisone increased it to 68% and it stayed that way for the last three years. Without the prednisone I have dropped back down to 50%. My pulmo is letting me go for three more months without the prednisone before I retake the tests and he makes a final decision , but he feels that without the prednisone I am heading back to transplant territory and he would like me to avoid that if I can. > > Although I hate hate hate prednisone, I think he is right and I would rather suffer the side effects than have to have a transplant. Yesterday I was depressed, today I realize that I am lucky that prednisone actually works for me and has kept me alive these past 3 plus years. I do however hate that I am going to be a pumpkin head once again! My kids all feel that they would rather have a chubby me then no me and are ecstatic that I am going to take prednisone again. And all I can think of is no bread, no sweets and no sleep for the rest of my life lol!> > Third, I am still not drinking coffee and I know that none of you want to hear this but with no coffee, I have no cough! I have started taking Emergen-C, a fizzy orange drink that some people with chronic illnesses say gives them energy and builds their immunity to the flu and colds-I have no clue if it works and will keep you updated. Other than that I try to keep my calories to about 1,400 daily, and I exercise 4 to 5 days a week. Light exercise like walking ( slow) and 3 pound arm weights but I find that I feel so much better afterwards.> > Last ( long post I know) I have been reading all the posts about the swine flu. I got my flu shot yesterday at UC San Diego and the specialist explained why there is so much hype about the flu. He said that to date about 144 people have died from the swine flu ( in the US), while last year 1,800 died from the regular flu. The swine flu is much more mild and even with my compromised lungs the chance I would die from it is slim. The problem is that while most of us have some immunity to the regular flu, none of us has any immunity to the swine flu and almost everyone who is exposed to it will get it. He said that if 100 people in an office are exposed to the swine flu, odds are all 100 will come down with it. Whereas if the same 100 people were exposed to the regular flu only about 10 would get it. The push for the vacine isn't so much to save lives, it is to keep the entire population from getting sick at the same time. > > I checked his statistics against the Center for Disease Control and he was close and while I do not want the flu it did relieve my fears and made me realize that the swine flu is not the black plaque and we are all not going to be dropping like flies.> > I am glad to be back, and to find out all about the newbies and how the "oldies" are doing. I love you all-> > > R. (53) Sarcoid/PF 3/2006 Carlsbad, California> > > __________________________________________________>

[Guest guest]

Congratulations on your Masters! So happy for you. It is quite an achievement.

If the pred helps I would take it. Chubby versus breathing, I choose breathing.

Again congrtas.

Merf 62 IPF 05

>

>   Hi Dear Family,

>    It has been forever since I have posted and I wanted to check in and let

all of you know how I am doing.  First of all I finished my Masters Degree

yesterday and after taking a two month break I am planning to apply at various

colleges to teach online.  I am hoping to make just enough to suppliment my

disability income so that I can continue to visit my grandkids several times a

year.

>  

> Second, I have been off of prednisone for two months now and feel fantastic. 

I have lost weight, am not puffy , sleep great, have energy, etc.,etc. 

Yesterday ( a big day for me:) I took my PF tests and visited the pulmo doc and

unfortunately my test results are not so fantastic. In May of 06 before starting

the prednisone my lung volume was a dismal 34%.  The prednisone increased it to

68% and it stayed that way for the last three years.  Without the prednisone I

have dropped back down to 50%.  My pulmo is letting me go for three more months

without the prednisone before I retake the tests and he makes a final decision ,

but he feels that without the prednisone I am heading back to transplant

territory and he would like me to avoid that if I can. 

>  

> Although I hate hate hate prednisone, I think he is right and I would rather

suffer the side effects than have to have a transplant.  Yesterday I was

depressed, today I realize that I am lucky that prednisone actually works for me

and has kept me alive these past 3 plus years.  I do however hate that I am

going to be a pumpkin head once again!  My kids all feel that they would rather

have a chubby me then no me and are ecstatic that I am going to take prednisone

again. And all I can think of is no bread, no sweets and no sleep for the rest

of my life lol!

>  

> Third, I am still not drinking coffee and I know that none of you want to hear

this but with no coffee, I have no cough!  I have started taking Emergen-C, a

fizzy orange drink that some people with chronic illnesses say gives them energy

and builds their immunity to the flu and colds-I have no clue if it works and

will keep you updated. Other than that  I try to keep my calories to about 1,400

daily, and I exercise 4 to 5 days a week.  Light exercise like walking ( slow)

and 3 pound arm weights but I find that I feel so much better afterwards.

>  

> Last ( long post I know)  I have been reading all the posts about the swine

flu.  I got my flu shot yesterday at UC San Diego and the specialist explained

why there is so much hype about the flu.  He said that to date  about 144 people

have died from the swine flu ( in the US), while last year 1,800 died from the

regular flu.  The swine flu is much more mild and even with my compromised lungs

the chance I would die from it is slim.  The problem is that while most of us

have some immunity to the regular flu, none of us has any immunity to the swine

flu and almost everyone who is exposed to it will get it.  He said that if 100

people in an office are exposed to the swine flu, odds are all 100 will come

down with it.  Whereas if the same 100 people were exposed to the regular flu

only about 10 would get it.  The push for the vacine isn't so much to save

lives, it is to keep the entire population from getting sick at the same time. 

>  

> I checked his statistics against the Center for Disease Control and he was

close and while I do not want the flu it did relieve my fears and made me

realize that the swine flu is not the black plaque and we are all not going to

be dropping like flies.

>  

> I am glad to be back, and to find out all about the newbies and how the

" oldies " are doing.  I love you all-

>

>

>  R. (53)  Sarcoid/PF  3/2006   Carlsbad, California

>

>

> __________________________________________________

>

[Guest guest]

!... hello to you... it's good to see a post from you. What great news that finished your Masters. I hope you are really feeling proud of such an accomplishment.

I'm glad for you too that there is a break from the dreadful 'P'. I'll bet you are as cute as you were the time we met in OR!

I'm not sure what I will do IF I come to a time that P is the only way to go. Like you, many of us (Peggy pops into my mind first) hate hate hate that P. As I learned here tho' it's the worst of meds and best of meds. Let's pray for those who need it, it will be the BEST!

You kept on keepin' on girl and look where you are! Keep up the keepin' on.

Love ya,

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Prednisone, swine flu and updates!

Hi Dear Family,

It has been forever since I have posted and I wanted to check in and let all of you know how I am doing. First of all I finished my Masters Degree yesterday and after taking a two month break I am planning to apply at various colleges to teach online. I am hoping to make just enough to suppliment my disability income so that I can continue to visit my grandkids several times a year.

Second, I have been off of prednisone for two months now and feel fantastic. I have lost weight, am not puffy , sleep great, have energy, etc.,etc. Yesterday ( a big day for me:) I took my PF tests and visited the pulmo doc and unfortunately my test results are not so fantastic. In May of 06 before starting the prednisone my lung volume was a dismal 34%. The prednisone increased it to 68% and it stayed that way for the last three years. Without the prednisone I have dropped back down to 50%. My pulmo is letting me go for three more months without the prednisone before I retake the tests and he makes a final decision , but he feels that without the prednisone I am heading back to transplant territory and he would like me to avoid that if I can.

Although I hate hate hate prednisone, I think he is right and I would rather suffer the side effects than have to have a transplant. Yesterday I was depressed, today I realize that I am lucky that prednisone actually works for me and has kept me alive these past 3 plus years. I do however hate that I am going to be a pumpkin head once again! My kids all feel that they would rather have a chubby me then no me and are ecstatic that I am going to take prednisone again. And all I can think of is no bread, no sweets and no sleep for the rest of my life lol!

Third, I am still not drinking coffee and I know that none of you want to hear this but with no coffee, I have no cough! I have started taking Emergen-C, a fizzy orange drink that some people with chronic illnesses say gives them energy and builds their immunity to the flu and colds-I have no clue if it works and will keep you updated. Other than that I try to keep my calories to about 1,400 daily, and I exercise 4 to 5 days a week. Light exercise like walking ( slow) and 3 pound arm weights but I find that I feel so much better afterwards.

Last ( long post I know) I have been reading all the posts about the swine flu. I got my flu shot yesterday at UC San Diego and the specialist explained why there is so much hype about the flu. He said that to date about 144 people have died from the swine flu ( in the US), while last year 1,800 died from the regular flu. The swine flu is much more mild and even with my compromised lungs the chance I would die from it is slim. The problem is that while most of us have some immunity to the regular flu, none of us has any immunity to the swine flu and almost everyone who is exposed to it will get it. He said that if 100 people in an office are exposed to the swine flu, odds are all 100 will come down with it. Whereas if the same 100 people were exposed to the regular flu only about 10 would get it. The push for the vacine isn't so much to save lives, it is to keep the entire population from getting sick at the same time.

I checked his statistics against the Center for Disease Control and he was close and while I do not want the flu it did relieve my fears and made me realize that the swine flu is not the black plaque and we are all not going to be dropping like flies.

I am glad to be back, and to find out all about the newbies and how the "oldies" are doing. I love you all-

R. (53) Sarcoid/PF 3/2006 Carlsbad, California__________________________________________________

[Guest guest]

I have no side effects with pred....I DO EAT LIKE A pig BUT I have lost weight went from 216 to my collage weight of 185 and still loosing.

Pulmo said it had something to do with the lungs not working so hard and slows down the metabolism.

Don't know what it is but I hope it keeps working.

<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: Breath Support <breathe-support >Sent: Fri, November 6, 2009 8:15:53 PMSubject: Prednisone, swine flu and updates!

Hi Dear Family,

It has been forever since I have posted and I wanted to check in and let all of you know how I am doing. First of all I finished my Masters Degree yesterday and after taking a two month break I am planning to apply at various colleges to teach online. I am hoping to make just enough to suppliment my disability income so that I can continue to visit my grandkids several times a year.

Second, I have been off of prednisone for two months now and feel fantastic. I have lost weight, am not puffy , sleep great, have energy, etc.,etc. Yesterday ( a big day for me:) I took my PF tests and visited the pulmo doc and unfortunately my test results are not so fantastic. In May of 06 before starting the prednisone my lung volume was a dismal 34%. The prednisone increased it to 68% and it stayed that way for the last three years. Without the prednisone I have dropped back down to 50%. My pulmo is letting me go for three more months without the prednisone before I retake the tests and he makes a final decision , but he feels that without the prednisone I am heading back to transplant territory and he would like me to avoid that if I can.

Although I hate hate hate prednisone, I think he is right and I would rather suffer the side effects than have to have a transplant. Yesterday I was depressed, today I realize that I am lucky that prednisone actually works for me and has kept me alive these past 3 plus years. I do however hate that I am going to be a pumpkin head once again! My kids all feel that they would rather have a chubby me then no me and are ecstatic that I am going to take prednisone again. And all I can think of is no bread, no sweets and no sleep for the rest of my life lol!

Third, I am still not drinking coffee and I know that none of you want to hear this but with no coffee, I have no cough! I have started taking Emergen-C, a fizzy orange drink that some people with chronic illnesses say gives them energy and builds their immunity to the flu and colds-I have no clue if it works and will keep you updated. Other than that I try to keep my calories to about 1,400 daily, and I exercise 4 to 5 days a week. Light exercise like walking ( slow) and 3 pound arm weights but I find that I feel so much better afterwards.

Last ( long post I know) I have been reading all the posts about the swine flu. I got my flu shot yesterday at UC San Diego and the specialist explained why there is so much hype about the flu. He said that to date about 144 people have died from the swine flu ( in the US), while last year 1,800 died from the regular flu. The swine flu is much more mild and even with my compromised lungs the chance I would die from it is slim. The problem is that while most of us have some immunity to the regular flu, none of us has any immunity to the swine flu and almost everyone who is exposed to it will get it. He said that if 100 people in an office are exposed to the swine flu, odds are all 100 will come down with it. Whereas if the same 100 people were exposed to the regular flu only about 10 would get it. The push for the vacine isn't so much to save lives, it is to keep

the entire population from getting sick at the same time.

I checked his statistics against the Center for Disease Control and he was close and while I do not want the flu it did relieve my fears and made me realize that the swine flu is not the black plaque and we are all not going to be dropping like flies.

I am glad to be back, and to find out all about the newbies and how the "oldies" are doing. I love you all-

R. (53) Sarcoid/PF 3/2006 Carlsbad, California____________ _________ _________ _________ _________ __

[Guest guest]

congratulations on your master's degree

i read about it on face book prior to your current post

what you said about prednisone is interesting

except for major flare ups I have been on 10 Mg's for long periods of time

recently the pulmonary decided to decrease it by 1 mg per month

as of yesterday, i am down to 7 Mg's per day

unlike a lot of people, i have a fear of going off it completely since it has helped me so much

for me the benefits of the low dose out weigh the side effects

as to the weight gain and the high blood sugars

once diabetes was diagnosed and i learned about counting carbs, i started losing weight

my problem is that the endocrinologist that the transplant team sent me too, put me on metformin

since being on metformin, i am not as careful with monitoring the glucose levels on a daily basis, nor recording everything that i eat, nor counting the calories

so the weight loss seems to have stopped

i do have a new wardrobe -- the stuff in the back of the closet that i couldn't wear for a couple of years lol

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Prednisone, swine flu and updates!To: "Breath Support" <breathe-support >Date: Friday, November 6, 2009, 8:15 PM

Hi Dear Family,

It has been forever since I have posted and I wanted to check in and let all of you know how I am doing. First of all I finished my Masters Degree yesterday and after taking a two month break I am planning to apply at various colleges to teach online. I am hoping to make just enough to suppliment my disability income so that I can continue to visit my grandkids several times a year.

Second, I have been off of prednisone for two months now and feel fantastic. I have lost weight, am not puffy , sleep great, have energy, etc.,etc. Yesterday ( a big day for me:) I took my PF tests and visited the pulmo doc and unfortunately my test results are not so fantastic. In May of 06 before starting the prednisone my lung volume was a dismal 34%. The prednisone increased it to 68% and it stayed that way for the last three years. Without the prednisone I have dropped back down to 50%. My pulmo is letting me go for three more months without the prednisone before I retake the tests and he makes a final decision , but he feels that without the prednisone I am heading back to transplant territory and he would like me to avoid that if I can.

Although I hate hate hate prednisone, I think he is right and I would rather suffer the side effects than have to have a transplant. Yesterday I was depressed, today I realize that I am lucky that prednisone actually works for me and has kept me alive these past 3 plus years. I do however hate that I am going to be a pumpkin head once again! My kids all feel that they would rather have a chubby me then no me and are ecstatic that I am going to take prednisone again. And all I can think of is no bread, no sweets and no sleep for the rest of my life lol!

Third, I am still not drinking coffee and I know that none of you want to hear this but with no coffee, I have no cough! I have started taking Emergen-C, a fizzy orange drink that some people with chronic illnesses say gives them energy and builds their immunity to the flu and colds-I have no clue if it works and will keep you updated. Other than that I try to keep my calories to about 1,400 daily, and I exercise 4 to 5 days a week. Light exercise like walking ( slow) and 3 pound arm weights but I find that I feel so much better afterwards.

Last ( long post I know) I have been reading all the posts about the swine flu. I got my flu shot yesterday at UC San Diego and the specialist explained why there is so much hype about the flu. He said that to date about 144 people have died from the swine flu ( in the US), while last year 1,800 died from the regular flu. The swine flu is much more mild and even with my compromised lungs the chance I would die from it is slim. The problem is that while most of us have some immunity to the regular flu, none of us has any immunity to the swine flu and almost everyone who is exposed to it will get it. He said that if 100 people in an office are exposed to the swine flu, odds are all 100 will come down with it. Whereas if the same 100 people were exposed to the regular flu only about 10 would get it. The push for the vacine isn't so much to save lives, it is to keep

the entire population from getting sick at the same time.

I checked his statistics against the Center for Disease Control and he was close and while I do not want the flu it did relieve my fears and made me realize that the swine flu is not the black plaque and we are all not going to be dropping like flies.

I am glad to be back, and to find out all about the newbies and how the "oldies" are doing. I love you all-

R. (53) Sarcoid/PF 3/2006 Carlsbad, California____________ _________ _________ _________ _________ __