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I have pulmonary fibrosis. Now what? 

Pulmonary Fibrosis Foundation
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We know that pulmonary fibrosis is an overwhelming diagnosis. In this session from the recent PFF Education Symposium, join a roundtable discussion with people living with PF who talk about their experiences and how they’ve learned to live well.
Social media platforms -
Twitter - @PFFORG
Facebook - @PFFORG
Instagram - @PFFORG
LinkedIn- Pulmonary Fibrosis Foundation
Please note that any information contained in this presentation is for informational and/or educational purposes only. It is not intended to be a substitute for professional medical advice. Always consult your personal physician or health care provider with any questions you may have regarding your specific medical condition.
This presentation is protected by U.S. and International copyright laws. Reproductions and distribution of this presentation without written permission from the Pulmonary Fibrosis Foundation is prohibited.
© 2022 Pulmonary Fibrosis Foundation

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27 ноя 2022

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Комментарии : 75   
@reginasmithsuggabuttersoap8472
I was Diagnosed 2 weeks ago. It took a several months for Dr's to pinpoint why i was coughing, losing weight, etc. I am so grateful to you all for sharing.
@polaris7122
@polaris7122 9 месяцев назад
@@Jess-wk5jo yes, it does!
@ed7519
@ed7519 9 месяцев назад
​@@Jess-wk5joIt can. And usually.
@estellar.367
@estellar.367 2 месяца назад
​ @MrGuitarman1945 Hi, ask our doctor about if you can take some suplements: please look for fasting and spermidine, how enlarge the telomeros and increase telomerase, centella siatica, also look and Im not sure if glutation could help or interfere with the autophagy. look how fasting could help, even look if castor oil could help. there are trials for new medicines as well, look in the lung fibrotisis fundation and you can apply to be in a medical trial. all I say do your research, also look for nebulations with manuka honey or gluatation I really dont know if that could help or do fibrosis worse, recearch, Im not saying some of this could help but research about it also look if dont interfere with medicines and other medical problems etc. important reduce inflamation, increase long of telomeros and telomerase, autophagy . an there are some tees they say could help, look for them I dont remember the name, and tiphala or something it is a india herb, look for amla also vitamin D, research about brocoli sprouts and NAC and frankisence. I dont relly know I just saying so you do your research. serraaptase and natokinase recearch about side efects and evrything about, papain. boswellia cerrata, moringa, cordiceps
@anjalimulchandani1442
@anjalimulchandani1442 Год назад
My father passed away after three years of diagnosis due to IPF- Hypersensitivity Pneumonotis(HP). It is a dreadful disease, I hope we are able to find permanent cure of this disease.
@andrewbarker4992
@andrewbarker4992 7 дней назад
I retired at age 50 due to this condition its also given me pulmonary hypertension the best advice I can give people is don't be afraid grab the bull by the horns the best way to face this is head on keep yourself strong workout as much as you're body allows do it often and breath deeply when you do it walk as much as you can multiple times a day even if you can only manage 5 steps do it you'll soon manage 10 then 15 if u can lift light weights believe me you're body and lungs will love you for it I've been doing this for 10 years now for I have bad days YES but I keep on lifting my weights and doing my very very short walks guys please don't make the mistake of telling yourself that you're ill and sitting in the chair all day long keep on punching 👊
@zoedawn7032
@zoedawn7032 Год назад
My Dad was just diagnosed with this. I am crushed. Everything on the internet has had me terrified but this video had given me hope. Thank you so much. I will be sharing this with him.
@loidamallorca2985
@loidamallorca2985 Год назад
My husband had a pulmonary fibrosis what is the treatment of these sick
@polaris7122
@polaris7122 9 месяцев назад
@@Jess-wk5jo yes it does!
@polaris7122
@polaris7122 9 месяцев назад
@@Jess-wk5jo I have it in both of my lungs, and it's terminal. There are only 2 drugs that you can take to slow the condition down, but they don't improve your quality of life!
@jamelamaraj8296
@jamelamaraj8296 3 месяца назад
​@@Jess-wk5jo😅😅
@estellar.367
@estellar.367 2 месяца назад
​ @MrGuitarman1945 Hi, ask our doctor about if you can take some suplements: please look for fasting and spermidine, how enlarge the telomeros and increase telomerase, centella siatica, also look and Im not sure if glutation could help or interfere with the autophagy. look how fasting could help, even look if castor oil could help. there are trials for new medicines as well, look in the lung fibrotisis fundation and you can apply to be in a medical trial. all I say do your research, also look for nebulations with manuka honey or gluatation I really dont know if that could help or do fibrosis worse, recearch, Im not saying some of this could help but research about it also look if dont interfere with medicines and other medical problems etc. important reduce inflamation, increase long of telomeros and telomerase, autophagy . an there are some tees they say could help, look for them I dont remember the name, and tiphala or something it is a india herb, look for amla also vitamin D, research about brocoli sprouts and NAC and frankisence. I dont relly know I just saying so you do your research. serraaptase and natokinase recearch about side efects and evrything about, papain. boswellia cerrata, moringa, cordiceps
@thepropertygurus4474
@thepropertygurus4474 6 месяцев назад
coming across this video accidentally was like discovering a treasure, will certainly share all with my affected relative. Thank you all
@fordtrucklover90280
@fordtrucklover90280 4 месяца назад
My mom was originally diagnosed with Pulmonary fibrosis on 2016, she just passed away yesterday 2/24/24 so she lasted almost 8 year and 5 of these year without any medicine. This illness is not a joke, do not travel if you have PFF, a pneumonia caused her death while traveling outside of US
@--PYOWICK--
@--PYOWICK-- Год назад
I to wish I wish I knew the time I have left over. I was diagnosed this January and the emotional stress of leaving my 2 young sons orphans is killing me faster.
@cindygordon5242
@cindygordon5242 Год назад
Where is the father?
@--PYOWICK--
@--PYOWICK-- Год назад
He died in 2015
@cindygordon5242
@cindygordon5242 Год назад
How old are the boys now
@HeavyHaul51
@HeavyHaul51 Год назад
Can't worry about how long you have. I lived 8 years with it and probably could have gone another year or 2 with no problem. I had a chance to get a lung transplant so I took it. Transplanted September 30, 2022
@2003iamkhushi
@2003iamkhushi 9 месяцев назад
@@HeavyHaul51 has it improved your condition?
@bernieoconnell3583
@bernieoconnell3583 11 месяцев назад
Very thoughtful and informative discussion. Thank You!
@jeffb.2469
@jeffb.2469 Год назад
I received my chest x-ray report yesterday which showed I had chronic ILD. I had never heard of this disease before and assumed I had the beginning of COPD. I called today to get an appointment with a Pulmonary Physician, and guess to find out what I have and where do we go from there. Of course the last couple of days I've been searching the internet for answers, and I came across this awesome video, with folks just like me sharing their stories of hope. The first thing I saw in my search of this condition was the 3-5 year life ending sentence in big bold black letters. I don't know what to think, but to be honest, I'm scared. I'm 61, and the first thing I thought of was, I guess I don't need to save in that 401K program anymore. I won't be alive to enjoy the retirement I've been dreaming of. Anyway, thank you for this presentation. It's been a gift.
@gggracing113.
@gggracing113. Год назад
I’ve had it 4 10 years. Don’t believe everything you read. There’s a lot more medication that reduces the scaring. Positive attitude is the best medicine. I am a lung transplant candidate. However I am going to ride these dogs till there is no more. God bless!
@jeffb.2469
@jeffb.2469 Год назад
@@gggracing113. Thanks for your comments. It's scary stuff, but your 10 year journey gives me a little hope. I have a million questions about the lung transplant thing, and Maggi in the video looks so well and healthy. Is there a point where if your condition gets worse, you're no longer a candidate?
@gggracing113.
@gggracing113. Год назад
@@jeffb.2469 I’m younger by a few years to u. But I have gone through the process with the transplant team. Keep exercising/walking the best you can. The biggest thing with transplants Jeff are infections and heavy rejection medications. Find a solid pulmonologist. Do your home work on a specialist. I’m on my third and found a fantastic doctor that has done more for me in 6 months then the others have done over 10 years. Don’t be afraid to get a second or a third opinion. Don’t stop living. Your retirement may look a bit different as maybe running a marathon. Don’t give up.. seriously. Keep asking questions and pushing your doctors. There are plenty of documented cases and procedures to slow the process. Best of luck Jeff!
@jeffb.2469
@jeffb.2469 Год назад
@@gggracing113. Thank you for that
@jeffb.2469
@jeffb.2469 Год назад
@@gggracing113. Thanks for those words, because they mean a lot to me. I've got a three week wait to see the doctor, so this is a stressful time. As much as I try to control my thoughts and emotions, it's there, right in front of my face. It's the last thing I think about before bed, and I wake in the middle of the night with this stuff. I hear stories that give me hope, and others of despair. But I like your advice, don't stop living.
@jariech87
@jariech87 11 месяцев назад
My husband has this lung disease. Since being on OFEV he has lost so much weight. We are confused if it’s the medication or the fibrosis that is causing the loss of weight , energy and appetite. I’m so afraid at times. We are in our 70’s and have no help. Im having to do extra things now that he can’t and im so tired.
@estellar.367
@estellar.367 2 месяца назад
​ @MrGuitarman1945 Hi, ask our doctor about if you can take some suplements: please look for fasting and spermidine, how enlarge the telomeros and increase telomerase, centella siatica, also look and Im not sure if glutation could help or interfere with the autophagy. look how fasting could help, even look if castor oil could help. there are trials for new medicines as well, look in the lung fibrotisis fundation and you can apply to be in a medical trial. all I say do your research, also look for nebulations with manuka honey or gluatation I really dont know if that could help or do fibrosis worse, recearch, Im not saying some of this could help but research about it also look if dont interfere with medicines and other medical problems etc. important reduce inflamation, increase long of telomeros and telomerase, autophagy . an there are some tees they say could help, look for them I dont remember the name, and tiphala or something it is a india herb, look for amla also vitamin D, research about brocoli sprouts and NAC and frankisence. I dont relly know I just saying so you do your research. serraaptase and natokinase recearch about side efects and evrything about, papain. boswellia cerrata, moringa, cordiceps
@whendis.roberts9903
@whendis.roberts9903 27 дней назад
Pray to God to help you and stay strong no matter what Your Husband needs you.
@michaelbaughman8524
@michaelbaughman8524 17 дней назад
My wife quit the OFEV after a year because the side effects were so debilitating. She also decided not to pursue a transplant after viewing the video because the financial and social demands were too great. Our lives would cease to be our own but become an endless round of doctor's appointments and tests and fund raising and jumping through hoops to preserve her eligibility. All that for a less than even chance of getting a lung, surviving the surgery, and not rejecting the lung. The disease is progressing without a doubt. She is on hospice care now and not able to get out any more. In spite of that her quality of life and outlook are so much better now. We both honestly feel that in her case the "cure" (which isn't a cure) is worse than the disease. She'd rather be able to enjoy her remaining life as much as possible rather than extend it by an unknown number of months or years at the expense of constant misery.
@ernestinejones8822
@ernestinejones8822 2 месяца назад
Very very informative . I thank you
@WAjustina
@WAjustina 4 месяца назад
Breaking News Nippon awarded exclusive rights to IPF treatment C21 in Japan. And thank you, Tom! Very encouraging regarding the O2!
@dougbryant8181
@dougbryant8181 Год назад
Those who have portable I about to change a portable concercentor what do each say about?
@MikiBoleen
@MikiBoleen Месяц назад
stumbled on to this site. Diagnoised with IPFa year ago butan old CT scan looking fir cancer showed some fibrosis in 2011. Dont think it would have made any difference if had known.. i have been on oxygen for over a year now. Have to use the tanks-no portables, which is nusienceas imina wheelchair from polio
@user-bo2qe3ms6j
@user-bo2qe3ms6j Год назад
Agree with tom...I'm the same as you..being monitored..staying stable since rituxin infusions..I exercise too! It makes me feel so much more alive...I'll never understand how I got this. I do have Dermatomyositis and Unidentified antibodies..I go to john Hopkins transplant team..and the myositis clinic. ❤
@estellar.367
@estellar.367 2 месяца назад
​ @MrGuitarman1945 Hi, ask our doctor about if you can take some suplements: please look for fasting and spermidine, how enlarge the telomeros and increase telomerase, centella siatica, also look and Im not sure if glutation could help or interfere with the autophagy. look how fasting could help, even look if castor oil could help. there are trials for new medicines as well, look in the lung fibrotisis fundation and you can apply to be in a medical trial. all I say do your research, also look for nebulations with manuka honey or gluatation I really dont know if that could help or do fibrosis worse, recearch, Im not saying some of this could help but research about it also look if dont interfere with medicines and other medical problems etc. important reduce inflamation, increase long of telomeros and telomerase, autophagy . an there are some tees they say could help, look for them I dont remember the name, and tiphala or something it is a india herb, look for amla also vitamin D, research about brocoli sprouts and NAC and frankisence. I dont relly know I just saying so you do your research. serraaptase and natokinase recearch about side efects and evrything about, papain. boswellia cerrata, moringa, cordiceps
@johndlima5761
@johndlima5761 Год назад
What kind of restrictions on diet for a person with IPF. I am on strict, no processed foods, only deep sea fish, no dairy.
@nancyclaiborne5091
@nancyclaiborne5091 10 месяцев назад
How fast does this condition grow?
@oldladybird8528
@oldladybird8528 7 месяцев назад
My husband found out few days back he has it. I'm so scared.
@maryjeantablizo6919
@maryjeantablizo6919 11 месяцев назад
I just got my x ray ,as I read it a parenchymal fibrosis seen in my upper lung .but I never cough or experience the lost of breathing..can you help me clarify about it .Thank you very much.
@johndlima5761
@johndlima5761 Год назад
No nightshade vegetables, lots of greens , berries and fruits.
@TwoTwentyHighvoltage
@TwoTwentyHighvoltage Год назад
I had covid19 2 yrs ago today and was on life support for 2 weeks and was not suppose to survive and now I have PF and I am taking Ofev and after 6 months they had to reduce the dose because of my liver and I stay so stressed out all the time.
@WAjustina
@WAjustina 4 месяца назад
Why is Tom the only one with O2 nasal cannula. I was told that I had IPF about 8 years ago based only on a PFT. F/u appt I was told IPF unlikely. No further diagnosis. Now I'm told that I DO have IPF based on O2 sat drop and heart rate increased during 6 min. walk. I have been on nasal O2 ever since. Is it possible to have oxygen discontinued?
@FatLittleOldLady
@FatLittleOldLady Год назад
I don't know who diagnosed me or when but it was in my hospital discharge papers under problems-current from a few weeks ago. I'd gone in to get an upper endoscopy. No one ever told me I had it. I had to ask my surgeon. He said he is not the one who diagnosed me. I've seen many doctors. I can't believe someone thought I didn't deserve or need to know.
@estellar.367
@estellar.367 2 месяца назад
​ @MrGuitarman1945 Hi, ask our doctor about if you can take some suplements: please look for fasting and spermidine, how enlarge the telomeros and increase telomerase, centella siatica, also look and Im not sure if glutation could help or interfere with the autophagy. look how fasting could help, even look if castor oil could help. there are trials for new medicines as well, look in the lung fibrotisis fundation and you can apply to be in a medical trial. all I say do your research, also look for nebulations with manuka honey or gluatation I really dont know if that could help or do fibrosis worse, recearch, Im not saying some of this could help but research about it also look if dont interfere with medicines and other medical problems etc. important reduce inflamation, increase long of telomeros and telomerase, autophagy . an there are some tees they say could help, look for them I dont remember the name, and tiphala or something it is a india herb, look for amla also vitamin D, research about brocoli sprouts and NAC and frankisence. I dont relly know I just saying so you do your research. serraaptase and natokinase recearch about side efects and evrything about, papain. boswellia cerrata, moringa, cordiceps
@AlmaAlmorte
@AlmaAlmorte 11 месяцев назад
I have the results of my chest x ray and stated that i have a pulmonary fibrosis.I feel so sad because we live on a simple living and because of the result I cannot go back to work.I have 3 children and Im very worried because who will support us financially what will happen to my children the are only 14,13, & 5 years old.Im only 45 yrs old.what will happen to us.I dont have money to support my medication.Im so deepressed.
@ludygidoc6583
@ludygidoc6583 Год назад
ibeen diagnosed they said just fibrosis no explanation yet iwant for secopinion
@matozzafrank706
@matozzafrank706 Год назад
nébulisations with Ibuprofen sodic it’s very helpful
@laurawilliams5363
@laurawilliams5363 Год назад
I have diffuse systemic scleroderma and ILD is very common for us. I was diagnosed with emphysema about 9 months ago, I never smoked. I have been on Cellcept and a multitude of other medications. This autoimmune has no cure but it destroys so much more, our skin, and all internal organs.
@estellar.367
@estellar.367 2 месяца назад
​ @MrGuitarman1945 Hi, ask our doctor about if you can take some suplements: please look for fasting and spermidine, how enlarge the telomeros and increase telomerase, centella siatica, also look and Im not sure if glutation could help or interfere with the autophagy. look how fasting could help, even look if castor oil could help. there are trials for new medicines as well, look in the lung fibrotisis fundation and you can apply to be in a medical trial. all I say do your research, also look for nebulations with manuka honey or gluatation I really dont know if that could help or do fibrosis worse, recearch, Im not saying some of this could help but research about it also look if dont interfere with medicines and other medical problems etc. important reduce inflamation, increase long of telomeros and telomerase, autophagy . an there are some tees they say could help, look for them I dont remember the name, and tiphala or something it is a india herb, look for amla also vitamin D, research about brocoli sprouts and NAC and frankisence. I dont relly know I just saying so you do your research. serraaptase and natokinase recearch about side efects and evrything about, papain. boswellia cerrata, moringa, cordiceps
@batangpasawayofficial44
@batangpasawayofficial44 Месяц назад
Mam the fibrosis pulmonary apicis, where from to conecxt my lungs
@lafinbrat765
@lafinbrat765 10 месяцев назад
I found out i have PF over a month ago now. My doctor didnt even tell me.. i had to ask him about it as he was walking out the door to end the appointment. I said "do I have PF ? I seen on my MyChart that i do" he said yes, I than asked when should I start seeing a pulmonary specialist.. his response was "not yet". I thought with PF the earlier you start getting any type of treatment or therapy helps? I feel like i have no where to turn. Any advice would be greatly appreciated. Im 57.
@csearles
@csearles 3 месяца назад
I hope that you have found an ILD/PF specialist. I was in the same boat, I trusted my original pulmonologist and that was a mistake.
@nicolef.peniston-bird5031
@nicolef.peniston-bird5031 21 день назад
I have just had the same experience. He just said, "you don't have cancer"... and I asked him, "well, what about the ILD diagnosis?". Only then did he say, ok go see a lung specialist...
@jihadrishmawi4664
@jihadrishmawi4664 Год назад
Just want to know how to join a group so i can learn how to deal with my acid reflux and my cough
@llme5364
@llme5364 Год назад
My husband has pulmonary fibrosis and we’d like to find a support group in the Las Vegas area
@Daniel-uf1fq
@Daniel-uf1fq 3 месяца назад
Maybe Certa will be hero and change this tragic situation. FT011 is in the fast track in FDA
@cskiles318
@cskiles318 Год назад
I’d ask about the highs and lows. I don’t mean to be negative but as a caregiver for my husband who says he’s not sick he just out of breathe and pushes hisself to heart rate of 145 ox 84 in 1 day i feel he will die and nxt day he’s just happy to watch tv. Hard for me to help him when he’s in denial the pollitive nurse said let him do what he wants. At this Time6/25/23 he’s so tired but ok sitting his toes are purple and clubbed but he says ok. I keep thick socks on him. Diagnosed 11/21 the pills hit his liver and kidneys not an option. Lung transplant ruled out first day. No response needed. I will tell his story if I our live him. Thanks for speaking of this disease. Hugs to all on this crazy roller coaster ride ipf
@estellar.367
@estellar.367 2 месяца назад
​ @MrGuitarman1945 Hi, ask our doctor about if you can take some suplements: please look for fasting and spermidine, how enlarge the telomeros and increase telomerase, centella siatica, also look and Im not sure if glutation could help or interfere with the autophagy. look how fasting could help, even look if castor oil could help. there are trials for new medicines as well, look in the lung fibrotisis fundation and you can apply to be in a medical trial. all I say do your research, also look for nebulations with manuka honey or gluatation I really dont know if that could help or do fibrosis worse, recearch, Im not saying some of this could help but research about it also look if dont interfere with medicines and other medical problems etc. important reduce inflamation, increase long of telomeros and telomerase, autophagy . an there are some tees they say could help, look for them I dont remember the name, and tiphala or something it is a india herb, look for amla also vitamin D, research about brocoli sprouts and NAC and frankisence. I dont relly know I just saying so you do your research. serraaptase and natokinase recearch about side efects and evrything about, papain. boswellia cerrata, moringa, cordiceps
@ladyria81
@ladyria81 Год назад
good morning! I'm ria from here in the Philippines. I just found out that I have pulmonary fibrosis.. I hope you can help me what should I do.. what should I think about so that I don't feel so sad anymore
@josnath7475
@josnath7475 Год назад
kamusta po kayu? nag treatment na po kayu? ako kahapon lang nakuha chest xray. may fibrosis din ako magfollow up check up pa ako sa doctor ko
@MrTadfortitude
@MrTadfortitude Год назад
Christ the Lord, that's what your every thought should be about.
@ahllorenzo3220
@ahllorenzo3220 Год назад
Ako din kahapon ko lang nakuha result pabalik ako abroad pero sabe unfit daw after ko mag medication mg 5 days nag 2nd xray ako then sabe fibrosis’ daw nakaka panic at lumo haist😢
@maureenbartolome3875
@maureenbartolome3875 9 месяцев назад
​@@josnath7475nakita rin po sa xtray ko na sa right upper lobe yung fibrosis sa Monday pa po yung doctor kaya dipa po nababasa kamusta po ang health nyo
@kimcarig714
@kimcarig714 6 месяцев назад
​@@ahllorenzo3220 kumusta na lagay nyo? ano mismong nakalagay sa x-ray nyo? sakin kasi residual fibrosis e
@cskiles318
@cskiles318 Год назад
I alarm notice on this panel. No1 seems sick no1 on ox. I glad your not but I wish it could be us
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