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

anxious

curtswife
  • By curtswife · New reply 8:51 am
  • Discussion in Emotional support · 2 replies
  • I am careing for my husband who has ipf caused by sarcoidosis. We are 49. He was diagnosed with interstitial lung disease 10 years ago. However diagnosed with end stage ipf in August. Its been one rollercoaster ...

Will Pirfendone be approved?

bdk994
  • By bdk994 · New reply 7:31 am
  • Discussion in Medications for PF · 1 reply
  • I heard there was a possibility of Pirfendone might be approved for use in the US? Anyone know more about this ...

PF sucks!!!

rsmith48198
  • By rsmith48198 · New reply 7:26 am
  • Discussion in Emotional support · 1 reply
  • Update to "help" post. My dad had to be air ambulanced home to Michigan. He did fine the whole way home. At some point thereafter (probably in transport from airplane to ambulance ride to the hospital ...

IPF Doctor

Dotann
  • By Dotann · New reply yesterday at 12:29 pm
  • Discussion in Diagnosis and testing · 6 replies
  • Does anyone know of a specialist in NY that they could recommend. My husband has been seeing a doctor in Miami who has been of no help. We are on our way back to NY and would like t o try and get him ...

Headache

19doll
  • By 19doll · New reply yesterday at 11:56 am
  • Discussion in Medications for PF · 3 replies
  • My husband was diagnosed 3 years ago with I p f. And has been on perifedone for the last 8 months. But has terrible headaches any one else suffering ...

Happy Spring! The Do Whats

Jastopp
  • By Jastopp · New reply April 22, 2014
  • Journal · 17 replies
  • Another year has passed for us...another spring has arrived and we are still here! What a blessing!! The last two months have been extremely difficult. for both of us. From the 19th of March on...we have ...

Cure Count Down

Breathless123
  • By Breathless123 · New reply April 22, 2014
  • Discussion in Good news, hope and humor · 5 replies
  • Please go to www.teespring.com/curecountdown! and take a look at the t shirt I designed to help make people aware of Interstitial Lung Disease. There is no cure as of yet but it is a disease that is being ...

"Honeycombing"

Annanana
  • By Annanana · New reply April 22, 2014
  • Discussion in Diagnosis and testing · 4 replies
  • Well this is my first post. My mother has IPF and last week had a CT scan and it showed what the doctors are saying is "honeycombing" he did say that since it has progressed so fast in just a month that ...

Oxygen

busymom459
  • By busymom459 · New reply April 21, 2014
  • Discussion in Supplemental oxygen · 16 replies
  • What is the highest level of oxygen that your loved ones are/ were on ...

Bringing my own copies of medical files to doctor

clhanson
  • By clhanson · New reply April 21, 2014
  • Journal · 14 replies
  • My husband is a helicopter since I was diagnosed. Most of the time that isn't a problem, but now he is telling me to get a digital copy of X -rays taken in the last 2 years to take to my Rheumatically ...

Oh WoW

Jastopp
  • By Jastopp · New reply April 21, 2014
  • Journal · 37 replies
  • Today has already started as challenge...not that every day isn't packed with something. The funeral for mom Bandelier was amazing and wonderful in the celebration of her life. Going home to their house ...

RA

Breathless123
  • By Breathless123 · New reply April 19, 2014
  • Discussion in PFF news and notes · 8 replies
  • THEY ARE TELLING ME THAT THE DAMAGE TO MY LUNGS WAS CAUSED BY RA . DOSE ANY ONE KNOW ANY THING ABOUT THIS ARE THAT MIGHT BE dealing with it ...

Right Leg Pain

BAScott
  • By BAScott · New reply April 19, 2014
  • Discussion in Caring for the caregiver · 6 replies
  • Hi, This is my first post and/or question. My husband was diagnosed with idiopathic interstitial pulmonary fibrosis at Cleveland Clinic about 1 year ago. We were told that he had the fibrosis approximately ...

Admitted in the hospital

Dutchwife
  • By Dutchwife · New reply April 19, 2014
  • Discussion in Living better with pulmonary fibrosis · 12 replies
  • My poor hubby has been admitted, fluid in and around the lungs, scary times. His PF came from severe RA, and they cannot do anything for either one anymore. He was scared in the hospital when they admitted ...

Doxycycline used to treat IPF

SenecaM
  • By SenecaM · New reply April 17, 2014
  • Discussion in Medications for PF · 7 replies
  • Has any one tried or know of someone that has been on doxycycline for IPF, not just short term for an infection? Mike has a doctor's appointment on Monday, and I have been gather research information ...

Support Groups

okg5
  • By okg5 · New reply April 17, 2014
  • Discussion in Emotional support · 3 replies
  • My dad is having a difficult time talking to anyone about mom's diagnosis and what it entails, what it means for him, and what changes have to take place. I would like to see if there are any local support ...

Urgent: Esbriet - when is it normal to notice changes?

hopegosselin
  • By hopegosselin · New reply April 17, 2014
  • Discussion in Living better with pulmonary fibrosis · 13 replies
  • Hi There - My mom started esbriet about two weeks ago. Her insurance company told her that she would start to feel positive effects in as little as two weeks? Do you know where I can find data about timelines ...

I'M STILL ALIVE AND KICKING

ShelaKay42
  • By ShelaKay42 · New reply April 16, 2014
  • Journal · 12 replies
  • Hello Friends, I'm still here slots been going on this past year I've been getting closer to my Lord and Savior Jesus Christ every day I rededicated my life to him and I am a born again Christian. I walk ...

Helpful Information

Sandygail
  • By Sandygail · New reply April 16, 2014
  • Discussion in Advocacy and awareness · 7 replies
  • My husband's pulmonologist shared some information that I wanted to share with you all. I hope you find it helpful: "Announcing the launch of 2 educational websites: www.IPFRALLY.com for providers, and ...

End stage of Pulmonary Fibrosis

Aseemtuteja
  • By Aseemtuteja · New reply April 15, 2014
  • Discussion in Lung transplantation · 17 replies
  • My mum, who is 71, is at the most advanced stage of pulmonary fibrosis. The doctors have told her that her lungs are the worst that they can ever be. In our last appointment, due to my being very anxious ...

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About this community

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

Disclaimer

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.