Discussions

Ease the cough

regene21
  • By regene21 · Posted yesterday at 11:15 pm
  • In Medications for PF · 8 replies
  • As my pulmonary fibrosis gets worse of course so does my coughing. I've tried cough drops. Robitusin DM and my doctors have prescribed teslon pearls. None of this has helped. I noticed when I can't breathe ...

Traveling with IPF

joyce334
  • By joyce334 · Posted yesterday at 7:56 pm
  • In Living better with pulmonary fibrosis · 3 replies
  • My husband and I along with the grandchildren have booked a cruise. He is diagnosed with IPF and uses oxygen. What will we encounter flying to Miami and cruising Royal Caribbean? Will they allow us to ...

IPF and TB

vinodgan
  • By vinodgan · Posted yesterday at 1:25 pm
  • In Diagnosis and testing · 3 replies
  • Hi my wife living with IPF since last one year started fever around 7 PM 99.2F since last one month.. The doctor advised her blood test for TB which came positive. Is there any body has TB along with ...

Phase 2 Study Simtuzumab (GS-6624

Smilebow
  • By Smilebow · Posted yesterday at 12:20 pm
  • In Medications for PF · 2 replies
  • HI everyone, I've just been accepted three weeks ago for a second phase trial of Simtuzumab (GS-6624) I'm wondering if anyone else is on it or was on phase 1 of this trial, of course they may have changed ...

Don't Give Up Hope

muskietim
  • By muskietim · Posted April 14, 2014
  • In Good news, hope and humor · 2 replies
  • A little inspiration for a Monday. I really like this band. First heard them on Sarah Palin's Alaska show. They sang the theme song, Follow Me There. https://www.youtube.com/watch?v=ueB2f33d --8 ...

Toe clubbing

Ladorna
  • By Ladorna · Posted April 14, 2014
  • In Living better with pulmonary fibrosis · 6 replies
  • Hi everyone, I wondered if anyone else is dealing with toe clubbing? Also is there anything you do to help with it. Thanks, Jacqui ...

Predisone

JudyeReiland
  • By JudyeReiland · Posted April 14, 2014
  • In Medications for PF · 7 replies
  • I am currently on Predisone (being tapered down) and have gained 20 pounds. What is concerning me is my memory loss. Is that a side effect of the drug? While my pulmonary doc is trying to taper off, my ...

Oximeters

NZKiwi
  • By NZKiwi · Posted April 14, 2014
  • In Advocacy and awareness · 14 replies
  • Can anyone tell me if there are any trusted sites on which to buy an oximeter. Also, is there any particular type that is better than another? My nurse tells me that the one she uses is $2000NZ, but I ...

POC??

heidstar77
  • By heidstar77 · Posted April 13, 2014
  • In Supplemental oxygen · 8 replies
  • Im 36 & finished workup for lung transplant. No one knows what i have but at rehab on 2L then 4L when on treadmill as a 'drop dramatically' according to Doc. I have been looking at Airsep Focus, only ...

Sleeping with POC

friedel
  • By friedel · Posted April 12, 2014
  • In Supplemental oxygen · 8 replies
  • Hello. This is my first post since joining the group which both of us enjoy very much.Thank you for all the informative posts you share as we have learned much.My husband was diagnosed with PF 3 years ...

HOME MADE CLEANERS SAVE YOUR LUNGS

KATHARINEBRAY1948
  • By KATHARINEBRAY1948 · Posted April 12, 2014
  • In Living better with pulmonary fibrosis · 11 replies
  • I WANTED TO SHARE THIS ARTICLE Making your own green cleaning products is good for the environment as well as the health of your family. But that’s not all it is good for – if you are looking to give ...

How "portable are E tanks?

BlueToad
  • By BlueToad · Posted April 12, 2014
  • In Supplemental oxygen · 18 replies
  • Hi. I am new to this disease and to this form of communication. I have been diagnosed with IPF and CVID. I am on oxygen 24/7 using 4 lpm at rest and 8 lpm when walking.. Is there a "backpack" style carrier ...

IPF and the flu

dannyhop
  • By dannyhop · Posted April 12, 2014
  • In Diagnosis and testing · 14 replies
  • I am new to the IPF world. Diagnosed in January. I had been on 2 L/min Oxygen at rest and 4L/min for walking. Even though I had flu shot, I ended up getting the influenza B bug last week. I am over the ...

Wedge pillows

Zebrina
  • By Zebrina · Posted April 12, 2014
  • In Living better with pulmonary fibrosis · 16 replies
  • What have been the experiences with these pillows? I've been using multiple pillows for my GERD. I do slide down and have to keep scooting up during the night. But I can't figure out how the wedge would ...

Pulse vs continuous

okg5
  • By okg5 · Posted April 11, 2014
  • In Supplemental oxygen · 10 replies
  • After moms apt the other day, need some clarification. Respiratory therapist put her through some tests and her sats would not stay up on her current o2 levels. So she bumped them up when using the portable ...

What major drug company owns InterMune?

MAskid52
  • By MAskid52 · Posted April 11, 2014
  • In Medications for PF · 4 replies
  • I have never heard anyone mention the name of the company that owns InterMune. Are they a drug company of their own? Or are they a division of another company, like TEVA or Lupin or any other major drug ...

Traveling with PF

hopefulday
  • By hopefulday · Posted April 10, 2014
  • In Living better with pulmonary fibrosis · 10 replies
  • My brother ( who has had a lung transplant), his wife, my husband and I decided to take a "bucket list" trip to Napa, Tahoe and Yosemite. Great idea, right? Well, it has been very challenging. We're all ...

Information on Esbriet

LZimmerman114
  • By LZimmerman114 · Posted April 10, 2014
  • In Medications for PF · 9 replies
  • Hello, I am new at all of this. Was just diagnosed with IPF. I am trying to find out how I go about getting the prescription "Esbriet" mailed to me in Florida from one of the 29 countries who have approved ...

Support Group Long Island??

chris2626
  • By chris2626 · Posted April 10, 2014
  • In Emotional support · 1 reply
  • Hello all. I am hunting around for Long Island support group(s) for my Mom. She was recently diagnosed with Pulmonary Fibrosis. She is 67, and lives alone. Any suggestions/recommendations are greatly ...

Coughing and Cataract Surgery

Ludja
  • By Ludja · Posted April 10, 2014
  • In Ask a Doc · 11 replies
  • Hello! I am a new poster to the boards. I am a family member who is helping an IPF patient (my father-in-law) with managing his disease. He was recently recommended to have cataract surgery because the ...

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The Pulmonary Fibrosis Foundation (PFF) would like to remind visitors and group members that information found in the PFF Support Community should not be considered a replacement for a consultation with a qualified healthcare professional. Please consult your personal physician regarding any medical information that is shared on this site. Any views or opinions expressed on this site are not necessarily those of the PFF.