Discussion topics

PFF news and notes

News and information from the Pulmonary Fibrosis Foundation.

The PFF Communities on Inspire Celebrate One Year Anniversary

By PFFCourtney · New reply May 22, 2013
10 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 ...

Living better with pulmonary fibrosis

Discuss the day-to-day ups and downs of life with pulmonary fibrosis including managing symptoms, and more.

Walk In BathTub

By ShelaKay42 · New reply yesterday at 11:01 pm
3 replies
We had a demonstration on the Walk in Tub because Im really getting to where I need one! We didn't qualify for the financing does anyone know where or how we can get a walk in tub and it be resonably ...

Diagnosis and testing

Discuss the diagnosis process as well as tests utilized in the diagnosis and follow-up of pulmonary fibrosis.

Progressive Idiopathic Pulmonary Fibrosis

By crkxp · New reply yesterday at 2:40 pm
82 replies
Hello to any who might be interested.. I was wondering if we all here have the same disease? I hear some of you say you have been diagnosed as many as 10-12, or 15 years ago. Many of you call your disease ...

Partnering with your medical care team

Discuss managing your overall health to get the best possible care. Share your tips and suggestions for how to be an informed patient and communicate effectively with your medical team.

Experience with Univ. Of Penn Hospital?

By NJArmyMom · New reply May 10, 2013
15 replies
Hi, I have been struggling with interstitial lung disease for almost a year. I was recently hospitalized for 5 days. My local pulmonary dr keeps telling me that I will get better and that walking to my ...

Medications for PF

Discuss medical therapies including treatment options and interventions.

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

By stacey9 · New reply yesterday at 8:24 pm
10 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 ...

Supplemental oxygen

Discuss supplemental oxygen therapy for pulmonary fibrosis.

How much oxygen do you use?

By Nivlag1 · New reply May 22, 2013
66 replies
I have IPF/UIP. I have been on oygen now for about 3 years. I went from needing 2 liters on exertion to now 5 liters on exertion. I am interested to know how many liters other IPF patients are using and ...

Pulmonary rehabilitation

Share your pulmonary rehabilitation experiences and discuss different techniques.

lung transplant

By okie2 · New reply May 13, 2013
11 replies
How long does a lung transplant extend your life? I am 73 and was told by my doctor they will not do one for me because I am over 65 of age. what does one cost? has anyone checked into a transplant in ...

Lung transplantation

Information and support related to lung transplantation.

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

By ADT · New reply yesterday at 4:27 pm
2 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 ...

Emotional support

Discuss the emotional impact of living with pulmonary fibrosis. Share your coping skills, talk about your specific challenges, and offer support to others.

Good & Bad News !

By Trice · New reply 12:35 am
1 reply
So I had my last day of my transplant week and they told me I wouldn't be able to have children at all ! At first they said I would be able too but now cellcept seems to cause deform effects and miscarriages ...

Good news, hope and humor

Share messages of good news, hope, and humor. Anything from positive doctor check-ups to transplant anniversaries and other celebratory news.

My Doctor is like Jackie Mason

By Jeff525 · New reply May 18, 2013
14 replies
since we all have the same thing PF, lets have some laughs with it. MY 1ST APT WITH MY DOCTOR. He says, 1ST YOU DON'T HAVE COPD BUT ON THE 3RD VIST YOU MY HAVE A TOUCH OF COPD, NOT A LOT, JUST A LITTLE ...

Research and clinical trials

Discuss research and your experiences in clinical trials for pulmonary fibrosis.

Has anyone sequenced their own genome for PF factors?

By SteveCostaRica · New reply May 19, 2013
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 ...

Your actions have the power to make an impact and create hope for pulmonary fibrosis patients and caregivers everywhere. Share information about advocacy, awareness, and fundraising opportunities here.

my doctor says I have 5 to 10 years to live just by an x-ray

By Jeff525 · New reply yesterday at 4:19 pm
19 replies
my doctor said I have 5 to 10 years to live just going by the x-ray he took. and after the CT. my diffusion level is 46%. every one said I am mild to moderate. can people tell me what there doctors have ...

All 31 discussions...

In loving memory

Share your memories and grieve for those who are missed. Find comfort from others who have lost loved ones.

In Memory Of Sue Ann Stansel

By Eldee · New reply May 19, 2013
25 replies
On April 11th my sister entered an inpatient hospice. Although I was well aware that her time was limited, this did seem sudden, as she was doing fine at Easter. She was unresponsive on day one, became ...

All 8 discussions...

Things you can do

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