Pulmonary Fibrosis Foundation Patients Support Community

The Pulmonary Fibrosis Foundation Patients Support Community connects pulmonary fibrosis patients for support and inspiration... More about this group

Smells and coughing attack

By RipW · New reply 12:41 am
Discussion in Living better with pulmonary fibrosis · 9 replies
Do others have coughing attacks brought on by certain smells? I had noticed that some perfume will cause me to cough. Also some chemical smells will also cause a coughing fit. I live in the South and ...

xray offten

By okie2 · New reply 12:11 am
Discussion in Diagnosis and testing · 4 replies
The reason I say this is that when in China Sept 2009 I had pneumonia and had a chest xray they found a small spot on bottom of right lung so tested me for TB which came out negative. Then Oct 13th 2010 ...

Help in understanding this disease.

By mannymao · New reply yesterday at 11:42 pm
Discussion in Diagnosis and testing · 17 replies
Hi all. I do not have ipf but my father does. I'm trying to learn as much as possible about the disease and the people living with it. His doctor states its idiopathic so the cause is unknown but probably ...

Meds

By JoLouise · Posted yesterday at 10:43 pm
Discussion in Medications for PF · 0 replies
Has anyone been on SULFAMETHOXAZOLE TWP?? My Dr put me on it along with predisone for my cough. Well the cough is alot better but now the weight is starting to climb. I guess your dammed if you do and ...

Rehab program for IPF that can be used at home

By Katceced · New reply yesterday at 9:54 pm
Discussion in Pulmonary rehabilitation · 6 replies
I do not have a rehab program near me. 300 miles away is one of the programs but nothing near me. Is there a site that gives an at home program for rehab ...

VATS on 6-18-13

By mlgowen · New reply yesterday at 9:37 pm
Discussion in Diagnosis and testing · 13 replies
Quite scared, nurses make the worse patients, especially since I was an OR nurse for 20 yr. I already can't breath, it's really got me worried about post-op ...

sign this for little Sarah!

By dawni · New reply yesterday at 9:11 pm
Discussion in Lung transplantation · 19 replies
Please sign this petition for a 10 year old little girl to get a lung transplant! https://www.change.org/petitions/optn-un os-change-policy-to-allow-pediatric-tran splants-of-adult-lungs-based-on-medical ...

Itching skin

By shirleyc · New reply yesterday at 9:06 pm
Discussion in Living better with pulmonary fibrosis · 10 replies
Does anyone have a problem with itching skin? Nothing visible to scratch at. My skin is a bit dry and I cream up every night after shower. But even my scalp itches! Is it something in my medication? I ...

To get a hospital bed or a regular adjustable bed??

By stacey9 · New reply yesterday at 8:50 pm
Discussion in Living better with pulmonary fibrosis · 5 replies
Hi.. I am in a dilemma regarding my sleeping situation... I have severe PF and severe Relapsing Polychondritis which is an autoimmune disease that destroys cartilage. It is very rare and affects the lungs ...

Is IPF curable

By Ilango · New reply yesterday at 8:10 pm
Discussion in Living better with pulmonary fibrosis · 19 replies
Does a portable oxygen concentrator help you to lead a normal life - like walking , shopping , carrying little weight of shopped things to home etc ...

I tested my o2 purity and it was below manufacturer specs

By Jeff525 · New reply yesterday at 7:23 pm
Discussion in Advocacy and awareness · 1 reply
I think every one should read this about the o2 you are breathing I also started a discussion on it. I Just found out a lot about how Apria Air company works and find it very disturbing. I will Now assume ...

Going on a cruise with o2. any Advice ?

By Jeff525 · New reply yesterday at 6:43 pm
Discussion in Living better with pulmonary fibrosis · 33 replies
I am going on a cruise for 5 days. these ships are big and I may need o2. all I think I can take is my E-tank. just one and make it last. any advice to bring more o2 with me. I will not have a portable ...

Daily Notes on Observations-June, 2013

By FRANKIE_B · New reply yesterday at 5:50 pm
Journal · 60 replies
Wonderful swim this morning. MSLP: 1022; Max 18C; MIn 7C; Very slight wind; expecting a very low cough day; ended the day with <10 coughs. Able to breathe to full depth today without any soreness. Something ...

Transplant evaluation today

By RipW · New reply yesterday at 12:26 am
Journal · 5 replies
Today I had another transplant evaluation at UNC Medical Center. I am stable with little change in pulmo tests. They do not want to rush me to the transplant list. My weight loss has brought me to about ...

Transplant Evaluation

By Eldee · New reply June 18, 2013
Journal · 11 replies
Well, had my three day pre-transplant eval this week, and it went well. My children were a little overwhelmed, with all of the aspects of the transplant adventure. As I had just gone through this with ...

OXYVIEW OXYGEN

By dawni · New reply June 18, 2013
Discussion in Living better with pulmonary fibrosis · 17 replies
I saw the best thing that I have since I started wearing oxygen and glasses.I was wondering if any of you out there have tried this..... www.oxyview.com If not then it is the cannula attached to your ...

Looking for other viewpoints

By Duka814 · New reply June 18, 2013
Discussion in Lung transplantation · 14 replies
Last fall, I went to Brigham & Womens Hospital in Boston and was told I would be a good candidate for a transplant. I am having trouble trying to decide whether or not to pursue a transplant or not. I ...

Dreaded 6 minute walk test results

By SteveCostaRica · New reply June 18, 2013
Discussion in Diagnosis and testing · 29 replies
Wondering if you have a 6 minute walk test experience to share? I did the 6 minute walking test check-up and 30 minutes on the treadmill today with a pulmonary therapist. Whew! Done with that. The results ...

FUZZY MIND

By ladydidi · New reply June 18, 2013
Discussion in Supplemental oxygen · 16 replies
My stats run usually with sitting activity 96-98 and walking regular pace 95-94 however I anotice that I have been waking up with a dull headache in the morning lately and at times my mind does not seem ...

What are the options for portable oxygen at 6 lpm or more?

By GolferBill22 · New reply June 18, 2013
Discussion in Supplemental oxygen · 5 replies
I'm up to 5 lpm on my Invacare Perfecto2 V stationary oxygen converter at home (the max. it can put out) - and 6 on my Respironics Simply-Go POC (the 6 is a demand system setting; the actual volume is ...

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About this community

The Pulmonary Fibrosis Foundation Patients Support Community connects pulmonary fibrosis patients for support and inspiration. This community is sponsored by the Pulmonary Fibrosis Foundation, an Inspire trusted partner.