I have pulmonary fibrosis. Now what?
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- Опубліковано 22 вер 2024
- 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.
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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
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.
@@Jess-wk5jo yes, it does!
@@Jess-wk5joIt can. And usually.
@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
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 👊
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.
My husband had a pulmonary fibrosis what is the treatment of these sick
@@Jess-wk5jo yes it does!
@@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!
@@Jess-wk5jo😅😅
@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
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.
coming across this video accidentally was like discovering a treasure, will certainly share all with my affected relative. Thank you all
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
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.
Where is the father?
He died in 2015
How old are the boys now
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
@@HeavyHaul51 has it improved your condition?
Very thoughtful and informative discussion. Thank You!
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.
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!
@@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?
@@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!
@@gggracing113. Thank you for that
@@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.
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.
@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
Pray to God to help you and stay strong no matter what
Your Husband needs you.
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.
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
Very very informative . I thank you
Breaking News Nippon awarded exclusive rights to IPF treatment C21 in Japan. And thank you, Tom! Very encouraging regarding the O2!
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. ❤
@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
No nightshade vegetables, lots of greens , berries and fruits.
My husband found out few days back he has it. I'm so scared.
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.
@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
ibeen diagnosed they said just fibrosis no explanation yet iwant for secopinion
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.
Is there an age limit for lung transplant?
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?
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
@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
What kind of restrictions on diet for a person with IPF. I am on strict, no processed foods, only deep sea fish, no dairy.
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.
@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
Mam the fibrosis pulmonary apicis, where from to conecxt my lungs
Those who have portable I about to change a portable concercentor what do each say about?
How fast does this condition grow?
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.
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.
nébulisations with Ibuprofen sodic it’s very helpful
Have all these people had the vax. Just asking
Just want to know how to join a group so i can learn how to deal with my acid reflux and my cough
My husband has pulmonary fibrosis and we’d like to find a support group in the Las Vegas area
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.
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.
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...
I alarm notice on this panel. No1 seems sick no1 on ox. I glad your not but I wish it could be us
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
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
Christ the Lord, that's what your every thought should be about.
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😢
@@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
@@ahllorenzo3220
kumusta na lagay nyo?
ano mismong nakalagay sa x-ray nyo? sakin kasi residual fibrosis e