Life expectancy in pulmonary fibrosis
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- čas přidán 13. 10. 2023
- In this video I talk about life expectancy, survival and prognosis in pulmonary fibrosis (lung scarring). This is a common question that patients and their carers have. In the field of interstitial lung diseases (ILDs), there are many conditions which may lead to progressive pulmonary fibrosis. The prognosis and life expectancy are different depending not only on the type of pulmonary fibrosis, but also on other factors, such as the person's age and other associated conditions (not only lung conditions). The effect of antifibrotic medications (such as nintedanib and pirfenidone) also matters in how quickly the scarring will progress and affect life expectancy.
Unfortunately it is hard to give exact estimates, but several factors play a role:
- the type of pulmonary fibrosis
- how much scarring is present on the lungs at the moment of diagnosis
- the pattern of fibrosis
- other medical conditions (not only lung related)
- tolerance to treatments
- the person's frailty and exercise capacity (ability to cope with the pulmonary fibrosis over time).
#pulmonaryfibrosis #survival
Please leave comments below if you want me to cover other topics in ILD.
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The opinions presented on this channel are my own and do not constitute medical advice in specific cases. If you are watching/listening to this content as a patient, you must seek personalized advice from your own healthcare team (who can provide you with a consultation and appropriate treatment and advice. This information presented here may not apply in your case. If you are a health professional, please use your professional judgement when treating patients.
My Mom died of PF which was instigated from a bad case of chicken pox, which she was told also landed in her lungs. She was also a smoker (never a good thing). She was diagnosed at about age 33-34 and managed to survive until just past her 50th birthday in 1986. Have really appreciated your videos to help me understand how she suffered & why. It's been healing :)
I'VE been on this earth for 77 years. I was diagnosed with IPF in 2021. I've heard that life expectancy is 3-5 years. Im not afraid of death because I have a savior who promised a resurrection some day. I believe Him. This life on earth society wise has deteriorated through my life time so much that I'm ready to check out. Things are getting so crazy today. Hatred and strife everywhere one turns.
Death is just a step to eternal life in Yeshua Messiah. Again, I have no fear of death. It's a natural process. Blessings to all.
amen
I’m in my 10th year, and share your belief. Keep the faith and maybe we’ll meet on the other side with our savior.
@@steve-fy4pk I'm sure we will. God bless you Steve
You must be Muslim
My dad sadly died two weeks ago from ipf he worked in construction and was first diagnosed 2 years ago... I am hoping there will be a cure very soon so nobody has to go through it like my dad.
Blessings to you and your family. Sorry for your loss
Om shanti
Hello my name is Sheila and I would to tell you I am deeply sorry for the loss of your dad!
My husband has just recently been diagnosed with IPF. And this has been devastating to us as I'm sure you are completely aware, receiving such news. I am looking into everything possible to get more educated especially from others whom have this diagnoses! Maybe if you wouldn't mind, we can become friends for further info. Thank you for your time.
@@sheilaburnett3370my father has been diagnosed PF. I would like to know more about this. Plz share what treatment ur taking
@@sheilaburnett3370how is he now
Thank you for the very helpful and detailed videos !
Thank you for sharing this important information
I'm was recently diagnosed with u.i.p and this was the first video I heard you say anything about it and I'm just having a hard time learning anything about it from my doctor or online.I was really hoping maybe for to your video you could do one about u.i.p because the way you explain things just makes it easier for me to learn.Thanks for your time and I look forward to seeing more videos
Hello sir my mom too has u.i.p plz give advice
I have had asthma for and GERD for decades and now have scarring in my lungs and COPD from the inflammation over a long time period. So as far as I know, my diagnosis is pulmonary fibrosis from reactive airway disease (asthma) and severe GERD. I also have an extremely rare genetic metabolic disease called Variegate Porphyria, that can also have a pulmonary component. I have appointments with specialists soon, so now it's just hurry up and wait (lol). So right now I'm just taking things one day at a time and doing what I can to stay as healthy as I can. I'm 64 and have no family history of PF or asthma but both of my parents and both of my siblings have all had GERD. One brother has it worse than I and now has Barrett's Esophagus (a pre-cancerous condition). Once I see the specialists at my upcoming appointments, I will regroup and make a plan for lifestyle, diet, and medication changes - whatever can have a positive effect on my health.
This is really informative as I was also diagnosed ILD NSIP familial this July, I had review on 16th Oct and doc checked my condition said it is stable as of now, I keep listening to information shared by Dr Stefan and this really helps to understand what I am going through.
How are you now ?❤
@@nada-io1dd hi I am stable, have issues like my heart rate goes high when I walk or do normal activities oxygen level also goes down , but the moment I sit and relax just for couple of minutes It fix , definitely have a restricted life.
Thank you 👍
Thank you.
I was diagnosed (by biopsy) in 2014 (sure I had it before then that’s what sent me to Cleveland clinic) it’s 2024 and I’m still here. I’ve cough uncontrollably all along, and have been in 4 clinical trials for it (no help). I just had a bad lung infection (probably from not being good at cleaning my cpap machine). Give lots of steroids (which makes me feel like a million bucks) and am weaned off now. Having difficulty now with catching my breath even with 3-4 liters of oxygen. Despite the pulse ox says I’m at 94-95 (really misleading). Tried quite a few natural things with no avail.
I have just diagnosed with minimal subpleural fibrosis both lung apices. I wanna understand more about this. What does the findings means? I only hear the word IPF, what’s the difference between the two? Is the findings for me is more risky? I hope i can get an answer pls. Thank you
Dr. I hope you are familiar with the tipy of the fibrosis I have. Is cwll Hermansky-Pudlak syndrome. A very rear kind of it.
Please give me information regarding Chemotherapy (Paclitaxel) and radiotherapy induced Lung fibrosis
What if the CT scan includes atelectasis, subpleural reticulation and multiple irregular streaky linear densities, in addition to fibrosis? What does all of this mean? I was just diagnosed and am waiting for the follow up appointment.
Are there any new findings on the ssc diesese ?
My Dad has Severe Progressive Lung Fibrosis caused from when he was in the Military and he worked Around Nuclear Bombs that he had to move on and off his B-52's he was working on. He was an Aviation Mechanic In. The Military. Then when when he got out of the Military he became an Auto Mechanic and he did alot of Aspestos Brake Jobs....For 25 years.
How old was he when he passed ?
I have been diagnosed with mild fibrosis in the lower lobe of the lung. I do not know what that means. Does this mean that it is ocular fibrosis? I have not received any treatment from doctors. I do not know why I am afraid, but the doctor does not pay any attention to that?
My mom was diagnosed with early stage fibrosis caused from severe GERD.. do you think if she gets the GERD surgery to eliminate the acid that the progression will be slowed down?
Me to having gerd n o have suffer plurel effusion
I was diagnosed in Jan 2024. Dr. wants to start me on Esbriet very soon. Scary stuff. I am 65 athletic non smoker. Had pneumonia last March. They found scarring in same place as pneumonia. Could end up lung transplant.
Esbriet has really prolonged my condition. I’m in my 10 th year with it, but feel like it’s catching up with me. Good luck
If your coughing what I did I bought lung cough tonic n health shop. I also bought mullen it's good for respiratory . I was diagnosed 2017 n I'm doing good than 2018. I'm doing exercise in d morning under d sun 15 minutes. Lung exercise.
The absolutely longest non-answer I have ever encountered. Wanting to know what is ahead is not “looking in dark places” Pulmonologist will proffer answers without having a clue. I am near the end of my journey with IPF and never received a straight answer.
💕🙏🏻💖🌟
yeah. so little hard info.'i hope you are still alive., i have no idea what timeline to plan for
Dr Stephan ... I have noticed you have not answered the questions that Utubers are putting to you. My sister died of this condition, and my friend has been diagnosed with it. Please answer the comments placed as people ae awaiting your answers. I know you are busy.
Was your sister diagnosed with mild ILD?
I had COVID left me with fibrosis in lungs what can you tell me to expect
My mother has been diagnosed with early onset of IPF with UIP pattern of scarring. She is 55 year old and has diabetes too. She has been suffering for over 5-6 years now but the diagnosis happened only this year. What should I preparing myself for?
How is she now
@@narayan12376 She is fine. The doctors don't seem too concerned. She does get bouts of severe cough but otherwise she is able to manage basic household chores along with taking care of herself and my father.
@@vilearninglife4723 good to hear.god bless
Thank you Dr osuma I just found out that I’m free from fibrosis !
My husband was dx with IPF about 3 yrs ago..fast progression. O2 24/7 past year...8 lts now. Recently dx with bladder ca. I question all the vaccines in the past 2 years? Is there a connection?.
Was he diagnosed mild?
Question - can the scaring ever heal themselves? Reason being is will a person ever be able to stop being dependent on portable oxygen?
Unfortunetly not. I have IPF and talking with my Doctor the damage is done and cannot be repaired just slowed down. I run 3L and can see the difference when im not on the oxy. and pretty much know that this is my life from now on.
@@Teenagegoogoomukhang in there, this ipd sucks
@@Teenagegoogoomukwhat if it’s mild ??
@@Lizbeth36961 From what I have learned it can not be healed or cured. OFEV prolongs the deterioration but not a cure.
Unfortunately a lung transplant is the only way now. I quit everything and have gotten a little better from when it started but again it's the meds helping me feel better.
does having residual fibrosis in upper lobes mean i have pulmonary fibrosis?
i uploaded a video now that hopefully clarifies the terminology
How about minimal scar right lobe fibrosis doc is it harm?
She told me that I have mild fibrosis in the left lobe of the lung, but no one talks about it
In your experience, whats the longest you have seen anyone living with IPF ?
20+ years with regular walk and basic work outs with light weight.
@@amitorlogisticsyour known?
@@amitorlogisticsit's good to hear
I have minimal pulmonary fibrosis,please advise me.
Same po tayu
Hi sir,
On oct 7, 2023 My wife (age-26yrs) has undergone a bronchoscopy test (biopsy)and is diagnosed with ILD - PPFE. What is the treatment for this ? Is it curable?
Note: Her younger brother died with the ILD NSIP disease at the age of 19. (Consagenous marriage to her parents).
Can you please respond as soon as possible?
Are you based in UK
@@dorothajordan
No , I am from India living in Bangalore.
If possible plz share the communication id email or WhatsApp number so I can share all the diagnosis details.
Doctors prescribed 3 weeks medicines -capsule Omnacrotil 40mg morning dose, nebulizer 3 time, and in case of cough Benz perl , syrup Lupituss.
Can we plan for an online consultation?
We have lost hope for treatment but With god's grace in case treatment options are there then I am trying to get possible treatment for her.
Hello Doctor,
I didn't hear anything from you.
Can you please respond as quickly as possible?
@@dorothajordan i am based in uk and my mum has same issues
Hello sir, my mom had scleroderma with ild she is taking nintedanib for that but she is coughing so much a day is there any prevent for dry cough
I have IPF and take OFEV for the past three months. I too have dry cough and mucus build up.
I found that eating hard candy helps alot, Life savers, jolly ranchers, werthers, etc. hope this helps
YUP -candy for lung disease - medicine has come a long way!
@@robertstellato5172 it was in regards to the cough, not lung disease!!
My mother was suffering from ILD since 2020
We try our best
But nothing work
She Died on 31st March 2024
Infection in lungs is increasing During the treatment.
She didn't smoke or do anything but still they have ild....
I never smoked a day in my life, I was diagnosed MILD ILD. What stage was your mom at? Thank you
@@Lizbeth36961 She was At the age of 64yr old.
Lungs are infection rise and start honey combing...
Anyways Dnt Ask any one in this Channel or Google go to doctor and consult your self...
You will be ok soon dear...
Make you life style better this will help you a lot.
@@Lizbeth36961 Btw Do you have any pet or bird cat at home ??
@@Lizbeth36961 Some time ILD caused by Pet/bird/cat..
There is no specific reason
And my mom was on honey comb stage in October 2023
For you dnt ask about ild consult your doctor b cz every person have different life style.
Google and YT only suggested not correct
Such a brutal pathology…………..slow and very painful way to expire
Thank you, very helpful
Watching my mom suffer from this too…this is heartbreaking