Discussions

There is Hope For Us...

By andriah · Posted 7:10 pm
In Living better with pulmonary fibrosis · 3 replies
I have my lung function tested every 6months...my FVC% #s made a significant jump since starting Imuran.... Here's a quick breakdown since beginning the drug: Oct 2011: FVC%=48.14 (just prescribed Imuran(had ...

Prednisone and All The Weight!

By andriah · Posted 1:02 pm
In Living better with pulmonary fibrosis · 3 replies
How much weight did you gain on Prednisone? and How did you manage to lose it with struggling with exercise ...

What is the quality of life after undergoing Lung transplantation for IPF?

By ADT · Posted 10:28 am
In Lung transplantation · 0 replies
Hello! I am writing from India. My mother ( age: 68 yrs) has been suffering from Idiopathic Pulmonary Fibrosis and her condition is deteriorating rapidly and progressively. She has been given an approximate ...

Pregnancy and PF

By andriah · Posted 2:15 am
In Living better with pulmonary fibrosis · 7 replies
Just had my 6month lung function test and my lung capacity is up! In 2010, my capacity was at 47%...since taking Imuran for the last year, My lung capacity is up to 61%!!! Doctor is encouraging me to ...

Causes

By jjplayer · Posted 1:08 am
In Diagnosis and testing · 1 reply
Could thefumes of a rug when first bought of the glue or the new zealand wool be the cause ...

oxygen useage

By Diane1015 · Posted yesterday at 10:54 pm
In Living better with pulmonary fibrosis · 7 replies
I have very recently been diagnosed with pulmonary fibrosis. When I was sent home from the hospital I was given oxygen and told to use it 24/7. I am on the #2 setting. When I went last week to get my ...

Do you use Guaifenesin? If so, do you like this med?

By stacey9 · Posted yesterday at 10:17 pm
In Medications for PF · 4 replies
Hi, my hematologist suggested I take this med. as my lungs are getting filled with mucus once again; even though I just had another tracheostomy and my lungs were cleared of all of my lungs secretions ...

I got ripped off by a computer scam :((

By stacey9 · Posted yesterday at 9:56 pm
In Emotional support · 5 replies
HI... I am just a dingbat and got ripped off by a scam company as I needed some computer help as it crashed a thousand times... The company is called Superiortech.. I was told it is called Supertech ...

Costs of transplant

By Duka814 · Posted yesterday at 9:48 pm
In Lung transplantation · 2 replies
How can one afford a transplant if you only have Medicare? Check this site to see the costs: http://www.transplantliving.org/before-t he-transplant/financing-a-transplant/the -costs ...

Should I have let the old man die?

By Condoline · Posted yesterday at 8:35 pm
In Advocacy and awareness · 12 replies
So much is made in this forum about never interfering between a patient and his doctor, especially if you are not a doctor, that this got me wondering about whether I did right, years ago, when I did ...

Has anyone sequenced their own genome for PF factors?

By SteveCostaRica · Posted yesterday at 8:15 am
In Research and clinical trials · 3 replies
The genetic research for PF [IPF, ILD] genetic factors seems to be more specific and testing larger groups. Wondering -if anyone has sequenced their own genome for biomarkers? -if anyone has a current ...

15 Things You Should Give Up To Be Happy

By Arras · Posted May 18, 2013
In Living better with pulmonary fibrosis · 7 replies
It's long, but worth the read. I am really, really trying to live by these... 15 Things You Should Give Up To Be Happy Here is a list of 15 things which, if you give up on them, will make your life a ...

A PF walk in NYC !

By Trice · Posted May 18, 2013
In Advocacy and awareness · 9 replies
Hey guys hope everyone is breathing easy ! So I noticed there isn't a big PF walk and if it is I never heard of it! So I emailed Jennifer from the PFF org to see if its possible to start a walk in NYC ...

Brand New Oximeter Technology

By SteveCostaRica · Posted May 17, 2013
In PFF news and notes · 6 replies
There is a new patient oriented oximeter -it connects to your iPhone -records continuous data -makes records your Doc can see in an email Here is a video clip: http://ispo2.com/default.aspx Here is how ...

Be aware

By Retiredlibrarian · Posted May 17, 2013
In Diagnosis and testing · 6 replies
Hi all Had a lesson in IPF yesterday. In previous posts I was back and forth about whether I had PH or not. Recently had two echoes to check condition of heart and they conflicted with each other. Was ...

Hello

By martinDB · Posted May 17, 2013
In Medications for PF · 9 replies
I live in Belgium, 64, and IPF patient since may. I' am waiting for Esbriet, perfiridone. Has anyone experiences with the drug ...

Ambrisentan Fails in Lung Fibrosis

By SISORBIF · Posted May 16, 2013
In Research and clinical trials · 3 replies
http://www.medpagetoday.com/Pulmonology/ GeneralPulmonary/38925 ...

The PFF Communities on Inspire Celebrate One Year Anniversary

By PFFCourtney · Posted May 15, 2013
In PFF news and notes · 6 replies
Last year on May 15, 2012, the Pulmonary Fibrosis Foundation launched our online support communities on Inspire.com. Since then our membership has grown to almost 2,000 people on both our Patient and ...

Traechea cannulas

By GoJo4x4 · Posted May 15, 2013
In Supplemental oxygen · 16 replies
Hello everyone. I took a slight turn for the worse in the last 6 weeks and it is kinda freaking me out. I have been fairly stable for 3 years, with the exception of one bad exasperation in March of 2011 ...

A Battle Lost

By jefa · Posted May 15, 2013
In In loving memory · 24 replies
My husband Joe lost his battle with IPF on May 8th. He was 64 years old & diagnosed 2 years ago in May. He died at home with family as he wished. We recently joined Inspire & gained so much by the support ...

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