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

Admitted in the hospital

Dutchwife
  • By Dutchwife · New reply 12:15 am
  • Discussion in Living better with pulmonary fibrosis · 1 reply
  • 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 ...

I'M STILL ALIVE AND KICKING

ShelaKay42
  • By ShelaKay42 · New reply yesterday at 10:36 pm
  • Journal · 9 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 ...

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

hopegosselin
  • By hopegosselin · New reply yesterday at 1:11 pm
  • Discussion in Living better with pulmonary fibrosis · 11 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 ...

Oh WoW

Jastopp
  • By Jastopp · New reply yesterday at 12:11 pm
  • Journal · 35 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 ...

End stage of Pulmonary Fibrosis

Aseemtuteja
  • By Aseemtuteja · New reply yesterday at 11:25 am
  • 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 ...

Sinus issues

irispatch
  • By irispatch · New reply yesterday at 11:03 am
  • Discussion in Ask a Doc · 5 replies
  • My husband in on Oxygen 24/7 . He has constant sinus drainage, a mixture of dried stuff and thick heavy mucus. We have humidifiers going, not much help there. He uses sinus sprays... again not much relief ...

Fast change- what next?

okg5
  • By okg5 · New reply yesterday at 10:58 am
  • Discussion in Emotional support · 10 replies
  • My mom has been home for a couple of weeks and in that time, she has declined rapidly. She was on 2-3l of 02 at rest and 4 on exertion and now they have bumped her up to 5 on rest and 6-7 on exertion ...

Hi All....I'm back....

Phillygirl59
  • By Phillygirl59 · New reply April 14, 2014
  • Journal · 4 replies
  • I got back home yesterday from Philly....had a great week with my kids, grandkids & family....we talked and laughed about some memories of Tony and yes I had some meltdowns while I was there...... When ...

Very End Stage

weecampsiesoul
  • By weecampsiesoul · New reply April 14, 2014
  • Discussion in Emotional support · 7 replies
  • This is my first post, and I would like to thank you all for sharing your experiences, they have given me info and comfort for past few months. My mum was diagnosed with IPF 3 years ago, she has been ...

Doxycycline used to treat IPF

SenecaM
  • By SenecaM · New reply April 14, 2014
  • Discussion in Medications for PF · 5 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 ...

Helpful Information

Sandygail
  • By Sandygail · New reply April 14, 2014
  • Discussion in Advocacy and awareness · 6 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 ...

RA

Breathless123
  • By Breathless123 · New reply April 13, 2014
  • Discussion in PFF news and notes · 3 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 ...

ILD IPF or burnt out Sarcoidosis?

pnp1231
  • By pnp1231 · New reply April 13, 2014
  • Discussion in Emotional support · 13 replies
  • Hi, I have been spending a lot of my time reading on this website, never commented or wrote before as I did not know how to start? as I am from India, specially from area where no any good medical facility ...

Ideas on washing hair

strwbrymom
  • By strwbrymom · New reply April 12, 2014
  • Discussion in Living better with pulmonary fibrosis · 17 replies
  • My Mom has gotten to where she cannot get around too well at all now and cannot go without O2 for even a few minutes. Bath time has become exhausting for her. We have a shower chair and hand held shower ...

My Sweet Sweet Jon

DerbyQueen
  • By DerbyQueen · New reply April 12, 2014
  • Journal · 16 replies
  • I wanted to let everyone know that my Jon passed away on Tuesday, March 25th. For so long, I have been dreading the day that he would leave me, but there was such a relief that he was no longer suffering ...

Is It End Stage?

bull6311
  • By bull6311 · New reply April 12, 2014
  • Discussion in Supplemental oxygen · 4 replies
  • My father was diagnosed two days bf Christmas with PF and had apparently had this for some time un knowingly. He was still working doing ok then within three weeks he had to quit his job and is on oxygen ...

Blue Fingernails

70rose
  • By 70rose · New reply April 11, 2014
  • Journal · 12 replies
  • My husband's fingernails are really blue - scary - is this a common thing with IPF ...

Headache

19doll
  • By 19doll · Posted April 11, 2014
  • Discussion in Medications for PF · 0 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 ...

dr bouros treatment result for stem cell

reena2000
  • By reena2000 · New reply April 11, 2014
  • Discussion in Good news, hope and humor · 7 replies
  • hi my mum had stem cell treatment in Greece and had stem cell infused via bronchocopy and intervenously. Dr bouros said if it does not improve , it will stabilise, 6 months after treatment it has stabalised ...

My husband is in surgery!

Candigirl1
  • By Candigirl1 · New reply April 9, 2014
  • Discussion in Emotional support · 54 replies
  • We were called to UPMC today for a lung transplant! Prayers are needed, my husband is in OR now. Please pray for the donor family! God bless all those that are waiting for the call and those that are ...

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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.