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Advice for Living with Pulmonary Fibrosis

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  • Опубликовано: 19 фев 2018
  • Living with pulmonary fibrosis (PF) is not easy. Randy shares his tips on what he’s learned after being diagnosed with idiopathic pulmonary fibrosis (IPF) and his tips on how to live your best life with this rare lung disease.
    Learn more about pulmonary fibrosis, and access American Lung Association resources, at Lung.org/pf.
    Produced with support from Three Lakes Partners.

Комментарии • 277

  • @jariech87
    @jariech87 11 месяцев назад +19

    My husband was diagnosed 6 months ago and was once a very strong man. He stopped taking the OFEV because he’s lost 30 lbs. I and 74 and do my best to take care of him, try to force him to eat too. He now won’t do anything but lay down and cry which makes me cry. I really need a caregiver group and he needs a support group. I’m so scared. I continue to pray. Pray for us please

    • @chrisnorton4498
      @chrisnorton4498 11 месяцев назад +6

      Can you get palliative care? It is not hospice! They will help you with support and resources. There is a doctor, nurse and social worker. They will be your ‘team.’ Prayers for you and your husband🙏

    • @jariech87
      @jariech87 11 месяцев назад

      @@chrisnorton4498 thank you very much. I will look into it

    • @A---ti3zz
      @A---ti3zz 4 месяца назад

      Have you asked the doctors for nausea meds? There are also meds to increase appetite. Stay strong

    • @jimmierasmussen9298
      @jimmierasmussen9298 4 месяца назад +1

      Hello, I have watched your comments. I am 76 years old, diagnosed as IPF 2-1/2 years ago (todays date 04-16-2024), within last 3 to 4 months I have lost about 25 to 28 pounds weight, 8 months ago weighed 135 to 138 pounds, last week weighted 110 pounds. Today I had an appointment with hospice nurse came by to explain the meaning of hospice care. When you live alone it's very difficult to even make my self a morning coffee it takes 15 to 30 minutes. Helpful thing is was approved by VA to have care giver 4 times a week 4 hours each 2 months ago. It's not approved yet for hospice care but once approved, what I requested to hospice nurses and doctors are when my time is up, I could😢go peacefully (without much of pain and suffering)and this is what hospice caring do as they'❤ve explained. Well I wish I could give you and your husband a comfort words but I can not think any right now.

    • @WJK2198
      @WJK2198 11 дней назад

      I was recently diagnosed with ipf and had a meeting with my primary care doctor about palliative care and then met with them. Please call. They can really help

  • @somewherenear3003
    @somewherenear3003 2 года назад +31

    My father died from PF last month. I wish he was with me now. I wish there was a permanent cure for this disease.

    • @zeynepcantekin1622
      @zeynepcantekin1622 2 года назад +3

      Hello, my father also suffers from the same disease. Do you want to talk?

    • @riversmakris
      @riversmakris Год назад +4

      @@zeynepcantekin1622 My father was diagnosed yesterday with PF... due to COVID-19. We need to be strong.

    • @MeganWaitingOnJesus
      @MeganWaitingOnJesus Год назад +3

      My dad is walking through it now. We believe he has ILD. My heart is broken.

    • @JayeVee
      @JayeVee Год назад

      Im hearing that my pops might have this also not sure I just lost my lil brother last year I cant lose another

    • @devanshuomar7870
      @devanshuomar7870 Год назад

      How much time is there for the patient diagnosed with ILD ?

  • @moonglitter9855
    @moonglitter9855 2 года назад +38

    I lost my father just last week to IPF. I watched him go from the strongest man I knew, to a frail, out of breath man who couldn’t go from the car to my front door without having a coughing fit and hanging on to something to catch a breath. It was surreal. I saw him die from a simple bout of pneumonia and his lungs just completely gave out on him. I hope they find a way to treat PF a bit better and eventually a cure.

    • @dc.pentrumesteri4893
      @dc.pentrumesteri4893 2 года назад +2

      they will never find a cure for this cruel disease that I also have at the age of 46 with two small children I am from Romania plus efisem plus ankylosing spondylitis that aggravated my disease

    • @fabionaps
      @fabionaps 2 года назад +3

      I also lost my father today to IPF. He too was the strongest man and died weak and frail. He was given steroids but they didn’t help..instead the steroids caused an ulcer and blood loss. He died today. I’m so sad

    • @lisagast4616
      @lisagast4616 Год назад +1

      They gave me 2 to 3 years it’s been a year I can’t walk I’m stuck on the couch I can’t breve good I’m on oxygen therapy I’ll kinds of medicine I don’t want to die I just found my soulmate and 55 I’m not afraid to die I don’t want to leave my family I’m not sure don’t wanna die did they put your father on any medication they try Ofev It was $10,000 a month the insurance paid for it taken me so much diarrhea I could get to the bathroom I quit breathing now they’re going to try another one they just keep giving me nebulizer medication and I’m on prednisone can you striving me crazy I don’t know what to do do you have any adviceDid your dad go through any lung therapy they want me to do that and they want me to take to test see if I qualify for a new long I’m supposed to go to long transplant pet place next month see if I qualify

  • @peaveawwii1
    @peaveawwii1 5 лет назад +32

    I have it but it was caused by bleomycine which is a chemo for lymphomia. I would say pulmonary fibrosis is much worse than lymphomia. You are a very strong man to live with such a horrible disease. We dont know how important breathing is until we cant

  • @MH-WM
    @MH-WM 3 года назад +23

    I've had it since 2012. I had to quit working in 2018 with driving a truck, can't be on oxygen. 2021 and I'm getting ready to get on the transplant list. There's a reason for all things, and I will fight!

    • @Rajendraprasad-zn1fq
      @Rajendraprasad-zn1fq 3 года назад +1

      I'm diagnosis fibrotic lesions in my lungs that mean fibrosis my age 32,one doubt sir how much live fibrosis patient not oxygen support and minimum 8yrs conform the life save this disease

    • @Rajendraprasad-zn1fq
      @Rajendraprasad-zn1fq 3 года назад

      Not any medicine use alive the ipf patients 10yrs sir? Not other health issue,please share which medicine use

    • @naturebound2901
      @naturebound2901 2 года назад +1

      My partner was also first diagnosed in 2012 and by some miracle is still hanging on. The last few years his condition has really deteriorated as he is unable to do even simple chores like mowing the lawn, carrying groceries, climbing up stairs. He is on oxygen a lot. He used to mountain bike, canoe and wildnerness canoe camping, hiking. He can't do any of those anymore. He has been on Ofev for several years but the disease is still progressing. He is only 58 years old. Because he also has HIV (for over 30 years now), we are not yet sure if he will qualify for a lung transplant. Specialists are gathering more info to let us know. He is losing weight too, and it is shocking how much muscle he has lost from not being able to do much from being out of breath. He still does a lot of walking, just not on hills. He keeps busy with light craft projects. He is my whole world and though I am trying to prepare for life without him, it is still heart breaking and I can't imagine not having him in my life. We have been together for 24 years. We have had no help figuring out how to travel to his appointments 2 hours away. I can't keep taking time off work. Looking into medical transport. And then me trying to manage a house and yard and work full time and care for him. It's overwhelming.

    • @manscv7037
      @manscv7037 3 месяца назад

      Any updates?

  • @joanpashinsky-greve8760
    @joanpashinsky-greve8760 5 лет назад +26

    I have this horrible disease buts it’s so hard to get around even with oxygen trying to stay positive love your video was inspiring thankd🙏

    • @mishukmeher4285
      @mishukmeher4285 5 лет назад

      Are there any treatment of this disease?is it life threatening?

    • @hisword1296
      @hisword1296 5 лет назад

      @@mishukmeher4285 Esbriet & Ofev.

    • @donishawhitfield7098
      @donishawhitfield7098 3 года назад

      My mom passed away in January from it. My heart goes out to you and everyone else who have this terrible disease. You guys are the real heroes and fighters

  • @louellaharris5661
    @louellaharris5661 4 года назад +47

    Hi I have pulmonary fibrosis and it’s been 4 years
    , I’m about to go into a new year, I’ve been on oxygen now for two years and I have a small traveling oxygen concentrator for when I go out and when I’m a air plane, I hope that that my new Dr can get my better and off oxygen and help me with my coughing , I cough a lot , and I’m in pain management because I have RA the pain moves in my joints and in my back , and I have MCTD, pray for me to get better , my name is Louella Harris , Thank you 🙏🏽

    • @sangeetasrivastav4704
      @sangeetasrivastav4704 4 года назад +3

      Hare krsna hare krsna krsna krsna hare hare
      Hare ram hare ram ram ram hare hare 🙏
      Start chanting this mahamantra

    • @louellaharris5661
      @louellaharris5661 4 года назад

      Sangeeta Srivastav what do that mean

    • @sangeetasrivastav4704
      @sangeetasrivastav4704 4 года назад +3

      @@louellaharris5661
      I have prayed for you
      To Lord krsna
      He is the Supreme personality of Godhead
      It is a powerful mantra
      Repose your trust in this and chant whenever u want
      And surrender to God
      He will take care of you and the rest 🙏🙏

    • @louellaharris5661
      @louellaharris5661 4 года назад +1

      Sangeeta Srivastav I have never heard of this , but I do believe there is a God , Jesus, I do pray and ask God to heal me in the name of Jesus, and thank for praying for me please continue to pray for me to get better , and may God Bless you, Amen, I can be reached on instagram by the name louella ross if you would like to send me future messages , have a wonderful holidays

    • @davidyonge4911
      @davidyonge4911 4 года назад

      May God help you

  • @marykaysexton9336
    @marykaysexton9336 4 года назад +34

    Thank you so much. We just had a friend diagnosed with this and the doctor gave him 5 years, but you have lived twice that long!! We are all in the "so mad, so sad" stage. I want to be that positive force for him. You've given me some hope.

    • @saaifali888
      @saaifali888 4 года назад

      is your friend alive ?

    • @Jrshmokes
      @Jrshmokes 2 года назад +1

      My grandfather is going through this right now I pray for him everyday and I try to keep him active I love my grandfather and he means the world to me I hate this disease but I know we will get through it he’s been nothing but strong and shown good sign s

    • @nhurcube_tv197
      @nhurcube_tv197 2 года назад +1

      @mary Kay is your friend ok??

    • @nhurcube_tv197
      @nhurcube_tv197 2 года назад

      Is your friend ok?

    • @zumasuko
      @zumasuko 2 года назад

      Infelizmente tenho essa doença e não tem cura

  • @Leoviliti1
    @Leoviliti1 5 лет назад +48

    Diagnosed with it last week ..
    I'm now listening to many videos in reference ..and yours has been extremely helpful thank you
    I know what you mean when aiming to go just a few yards and have to take a breath.
    It began four years ago with a dry cough and up hill struggles..
    Thick white phlegm..
    So getting the diagnosis is quite late..
    As I put it off ..
    Believing it was just an age thing.
    The awareness needs to be addressed more doesn't it? X
    Again thank you and I hope you're still managing to do things for yourself ..bless you and take care!! Xx

    • @jodhvirsingh8677
      @jodhvirsingh8677 4 года назад +2

      Hi Corrienne..did you come across any cure/method of treatment for ipf in the last year.. kindly share your experience..thnx

    • @Rajendraprasad-zn1fq
      @Rajendraprasad-zn1fq 3 года назад +2

      Corrieene I'm diagnosed mild ipf 8th month before my age 32,I'm not use any medicine please tell me which medicine use

    • @DavidF971
      @DavidF971 2 года назад +2

      @@Rajendraprasad-zn1fq use systemic enzymes( serrapeptase) which will reduce scar tissue, cuz it has fibrin dissolving properties and aid in better blood circulation.

    • @polaris7122
      @polaris7122 4 месяца назад

      @@DavidF971 nothing can reduce the scar tissue. There are two medicines that will slow it down but nothing else!

  • @erosroyarocho7273
    @erosroyarocho7273 3 года назад +10

    Thank you for your video. I as well was diagnosed with IPF last year, and have been struggling with RA the past 20 years. I can relate with running out of breath just by going from a bedroom to the kitchen and back. I as well on O2, 2l for now. Noticed how my fitness level has been deteriorated the past year. I’m excited to start pulmonary rehab next week.

    • @toryberch
      @toryberch Год назад +1

      ErosRoy, how are you doing now 1 yr later and what are your symptoms like today? My husband is 61 and has had RA now 7 yrs. He just had a breathing test done and the Dr said it showed restrictive pulmonary process. We are thinking this is what he has.
      He has shortness of breath
      fatigue muscle/joint aches
      As if having RA isn't already hard enough!

  • @louellaharris5661
    @louellaharris5661 4 года назад +9

    Hello it’s Saturday and it’s cold and rainy today, my grandson is having a get together today with his friends at a bowling alley, I just don’t feel up to going today, I did have him his gift and told him happy birthday, he’s turned 16 , I hope he understands , my body sometimes get pain and I get sleepy

  • @genelandry5785
    @genelandry5785 Год назад +2

    I was just diagnosed with p.f. September 20 2022, thank you for this video.

  • @samsabastian5560
    @samsabastian5560 2 года назад +6

    I stopped the progress of this insidious disease by using high quality Manuka honey through a nebuliser, following information sourced from Professor Peter Molan of Waikati University, in New Zealand, who is a world export in Manuka honey. Within 2 months of using a nebulizer my coughing had reduced 98% and within 6 months the disease was no longer progressing.
    I was diagnosed in 2007, and 15 years later I am still here.

    • @sudais3532
      @sudais3532 2 года назад

      Are you talking of pulmonary fibrosis??

    • @samsabastian5560
      @samsabastian5560 2 года назад +1

      @@sudais3532 YES.

    • @eduardolosanofficial
      @eduardolosanofficial Год назад

      Hi Sam! That’s great news! I’ve been reading about it too. Would you be kind enough to share specifics on how you added the honey to the nebulizer? How much? Which brand? I’m trying to help my mom, decreasing her coughing would help tremendously for a better quality of life. Thanks!

    • @eduardolosanofficial
      @eduardolosanofficial Год назад +2

      Also, did you mix it with the antibiotic amikacin?

    • @ashishb9216
      @ashishb9216 Год назад

      Ya did u use the antibiotic as well

  • @quintetoffourtriomusic7533
    @quintetoffourtriomusic7533 4 года назад +14

    I have PF although the cause of mine is known as a few years ago I had an MRSA infection in my lungs that nearly finished me off but I'm still around and working,although work is getting progressively more difficult as I tend to have to be mobile.I try not to let it bother me too much though although the coughing is getting a bit annoying now and I find some days more tiring than others.Not on oxygen yet but I can foresee that in the future but,for now,I enjoy my job and will continue for as long as I can possibly do so.

    • @connollysays
      @connollysays Год назад

      This is absolutely brilliant healing and an amazing performance from "Molemen Herbs". It really helped me heal permanently from my years of suffering from fibrosis and sores. Just when you feel there is no hope and you are completely left to your own illusion, "Molemen Herbs" will give you light at the end of the tunnel! Thanks for the great services and for helping me get a cure for my predicament. Y`all can find "Molemen Herbs" on RUclips or Facebook. Good Luck. Please take your health seriously.

  • @Bwianman85
    @Bwianman85 5 месяцев назад

    I lost my father yesterday morning from PF. Originally he had a diagnosis of colon cancer and then he found out about the PF. He finally succumbed to the disease and it was awful to see him suffer.

    • @kristena4880
      @kristena4880 Месяц назад

      I am so very sorry. Strength and love to you

  • @chariebasada2638
    @chariebasada2638 4 года назад +8

    Thank you for your video, I have diagnosed with this young age 20.

    • @louellaharris5661
      @louellaharris5661 4 года назад +6

      Charie Mae Basada
      Hello how are you doing
      I’m diagnosed with pulmonary fibrosis in 2016, it’s been four years going into a new year soon, I’m on oxygen 24/7 I have my good days, and days I don’t feel like doing anything, so I just relax I don’t work anymore, I’m single and now I live with my daughter, but I take care of yourself I don’t need any help anymore I do good now for myself,

    • @louellaharris5661
      @louellaharris5661 4 года назад

      Charie Mae Basada how are you doing?

    • @Jess-wk5jo
      @Jess-wk5jo 4 года назад +1

      I have question for you over pulmonary fibrosis. Can Idiopathic pulmonary fibrosis damaged both of lungs or only one of the lung

    • @Jess-wk5jo
      @Jess-wk5jo 3 года назад

      @@louellaharris5661 I have question for you over pulmonary fibrosis. Can Idiopathic pulmonary fibrosis damaged both of lungs or only one of the lung

    • @louellaharris5661
      @louellaharris5661 3 года назад +1

      @@Jess-wk5jo both lungs

  • @teresavale2517
    @teresavale2517 Месяц назад

    Just lost my dad a month ago. I now call this disease the Silent killer & am warning everyone about it. I’m going to get tested from now on cuz it isn’t going to catch up to me. Diagnosis wasn’t until 48hrs. BEFORE his death (1 week after 82nd birthday).

  • @hope3761
    @hope3761 4 года назад +5

    My friend is 44 and has this and she used to be a caregiver and helped me with my husband Sad to see her now so bad her self Shes become like a younger sister to me

  • @roshni6565
    @roshni6565 3 года назад +7

    My sister had been diagnosed with ILD in 2012. So it's 8 yrs now & it's now advanced to IPF. What matters is having the right diet, rest in between & an active lifestyle.

    • @vishwanathcool.6679
      @vishwanathcool.6679 3 года назад

      Mediation helps a lot ...

    • @roshni6565
      @roshni6565 3 года назад +8

      @@vishwanathcool.6679 In her case Jesus held her hand & took control of her life. So this is a name that is greater than all that is of the world.

    • @VIPINKUMAR-ci7wg
      @VIPINKUMAR-ci7wg 2 года назад

      @Roshani Hi Roshani, is she on some medications?

    • @roshni6565
      @roshni6565 2 года назад +2

      @@VIPINKUMAR-ci7wg yeah since 2018 she's on steroids,heart & lungs meds
      also oxygen support in between. She's very healthy as of now by god's grace.does all work independently. Also follows a healthy diet.It is also important to take treatment under a doc who doesn't prescribe too many medicines.

    • @dc.pentrumesteri4893
      @dc.pentrumesteri4893 2 года назад

      end this nonsense with your diet you don't know what that means on your skin you have to eat well because this disease consumes you more than cancers

  • @louellaharris5661
    @louellaharris5661 4 года назад +1

    I’m 60 years old with PF , RA, MCTD

  • @vishwanathcool.6679
    @vishwanathcool.6679 4 года назад +9

    In 2010 I was diagnosed with IPF @ the age 25 .... It's been a decade now 😔 life is hell ... There is no quality of life I feel hell do my daily routines. I'm disoriented completely with life ... I'm not interested in anything ... 😭 I feel breathless even while sleeping it's been ages I have slept peacefully .... Living is hell ...

    • @abhishektiwari2637
      @abhishektiwari2637 4 года назад +2

      hii bro are you ok

    • @rinakhatun9830
      @rinakhatun9830 3 года назад +3

      I feel you man , this isnt living anymore

    • @petsloversandgyan5192
      @petsloversandgyan5192 3 года назад +1

      How are you ?Plz reply

    • @vishwanathcool.6679
      @vishwanathcool.6679 3 года назад

      @@petsloversandgyan5192 lifeless .... Just pushing myself & keep myself disoriented from everything ... So that I don't get carried away emotionally .... Meditation helps boosts up stability mentally and emotionally

    • @vishwanathcool.6679
      @vishwanathcool.6679 3 года назад +2

      @@abhishektiwari2637 thank you for asking ... I'm stable meditation helps me lot .... Keep myself disoriented from materialistic life !!!!

  • @deborahstollman6238
    @deborahstollman6238 Год назад +1

    G-d bless you! You seem very strong 🙏🏻🇺🇸🙏🏻

  • @emilymarett9826
    @emilymarett9826 4 месяца назад

    My mom lived on oxygen for two years her lungs were damaged before she caught Covid but when she got the first time she was in the hospital for four months and was starting to make progress to get on the transplant list and this past January she lost her battle

    • @emilymarett9826
      @emilymarett9826 4 месяца назад +1

      It was a total shock because when she went into the hospital we thought it would be like how it was before she would be in the hospital for a few months and go to rehab and then come home but her lungs were too week she ended up passing a a week later after going into the hospital

  • @hisword1296
    @hisword1296 5 лет назад +11

    What if you don't have a support group, friend, or family member that cares .... absolutely 100% no support system-!?!

    • @10AntsTapDancing
      @10AntsTapDancing 5 лет назад +10

      Like me. You have to pull on your big girl or big boy pants and deal with it. I'm devastated that at 65 and just beginning what I thought would be an active retirement that it isn't going to happen. No family and a partner that thinks I'm lazy and doesn't want to understand that I'm dying a slow death. My walks consist of knowing where the park benches are so that I can sit down before I fall down but getting out into nature is good for my soul and I gain peace from that. I hope you can find the strength to be your own support group as well because there are many things you can do to make your life worth living. I've taken up painting and sketching outdoors to get me out and about.

    • @hisword1296
      @hisword1296 5 лет назад +14

      @@10AntsTapDancing I was diagnosed with ipf at age 44 ... they said I had three to five years to live ... well, I'm 49 and still alive.

    • @10AntsTapDancing
      @10AntsTapDancing 5 лет назад +4

      @@hisword1296 My doctor wouldn't put a time on mine but my shortness of breath has gotten worse over the last year. I bought a second hand home gym so that I can do light weight training at home at my own pace and it seems to have helped. I lost a lot of strength and that scared me more than anything because I'm independent to the point of stupidity lol. I think if you keep as healthy as you can and avoid people with flu you can live much longer than they say. It's your mental attitude that makes the difference. Good luck :)

    • @hisword1296
      @hisword1296 5 лет назад +6

      @@10AntsTapDancing Yes, I definitely agree, your attitude has a lot to do with living MUCH MUCH longer, and keeping up with all your vaccinations, last but not lest, your spiritual self can also play a big role in your heath-! God bless you-!! If you dont mind me asking, at what age was you diagnosed-? ....and, are you taking esbriet or ofev and/or prednisone-??? They just put me on oxygen 2LPM. Are you on oxygen....? xx

    • @10AntsTapDancing
      @10AntsTapDancing 5 лет назад +4

      @@hisword1296 I was diagnosed at 61 and I had gone to the doctor for other health problems and had investigations for those and lung function test was very poor and xray showed scarring on my lungs. I started eating low carb/high fat and that helped with my other symptoms. I worked in garment manufacturing for 50 yrs and it was breathing in polyester fibres that damaged me. I don't have any treatment at the moment (I'm not in the States) and was unaware there were drug treatments. I'm not on oxygen but I struggle to get enough if I'm walking and feel weak and fatigued. It takes me ages to do any gardening and have to rest every 10 minutes or so. I'm not sure if I'll go back to my doctor just yet. I have all my vaccinations for flu etc and stay home if there is flu going around :) Thank you for your blessing and the same to you.

  • @crbrown9615
    @crbrown9615 4 года назад

    Thank You for this video

  • @TheNorthsquad
    @TheNorthsquad Год назад +1

    How are you speaking so easily and fully with Pulmonary Fibrosis. I can barely speak a minute without Oxygen, been living with Pulmonary fibrosis 7 years now with meds and O2, but it's time to fish or cut bait. Transplant or slow death

  • @oscarmartinez2538
    @oscarmartinez2538 3 года назад +2

    This is a great video

    • @gabrieltimothy9193
      @gabrieltimothy9193 3 года назад

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  • @kellyford9279
    @kellyford9279 5 лет назад +7

    Goodness! What is up with all those stairs and CARRYING an oxygen tank?

    • @jeannietom1744
      @jeannietom1744 3 года назад +1

      Many folks living with lung diseases, require supplemental oxygen to give them a better quality of life.

    • @kellyford9279
      @kellyford9279 3 года назад +1

      @@jeannietom1744 Did you see how he was struggling going up the stairs carrying that e tank? Portable concentrators exist and many people have them, as for the stairs, well they become extremely hard to negotiate as time goes on and the combination of the two-torture! Btw I have had IPF for close to 21 years and am on oxygen 24/7 so I am familiar...

  • @brewjaz4529
    @brewjaz4529 2 года назад

    Thank you.

  • @toledojeeper2932
    @toledojeeper2932 4 года назад +4

    I have a lot of trouble breathing and coughing a lot ...blood oxygen is around 87% ...can't get any doctors to help me..my pulmonary doctor says I have asthma....how can I have asthma 24 hours a day...he gives me asthma meds that make me cough up my lungs ...only thing that provides a little relief is predisone

    • @joshua50101
      @joshua50101 3 года назад +2

      May I ask how old are you? I'm struggling with the same problem, I once was diagnosed with asthma but keep in mind we might have both asthma and fibrosis.

    • @toledojeeper2932
      @toledojeeper2932 3 года назад

      @@joshua50101 ...im 62 ...I got it under control with "wixela"....but then after 4 months I started feeling bad again so I quite that and I have been good without any medication...I also started to exercise more and less junk food...but in the last 2 months it has started to come back but I have been under more stress with a 1200 mile move and haven't been able to eat better foods so I may go back onto the wixela but only 1 puff a day instead of 2 .
      I'm hoping after I get settled in to go back to more excersise and eating better...that really seemed to help .

    • @chavitavb
      @chavitavb 3 года назад

      Have you asked to be referred to a specialist ?

    • @toledojeeper2932
      @toledojeeper2932 3 года назад +1

      @@chavitavb ...actually ended up being silent gerd , I couldn't believe it . I'm on Nexium for 1 month then going on pepcid , symthoms are better but still have a sore throat and mild cough , ENT said it could take 3-6 months for esophagus to heal.

    • @chavitavb
      @chavitavb 3 года назад +1

      @@toledojeeper2932 Wow how did your doctor discover that ? I think I have silent gerd, but I haven’t build the courage to seek help. I think gerd is giving me shortness of breath since any spicy food cause these symptoms.

  • @paulcarruthers2431
    @paulcarruthers2431 Год назад

    I know the scared and alone bit Had all tests just don't know if I have or not . But I have been improving . Think it may have been long covid , but i have the scarring on the lungs , had the shortness of breath .The worst bit is not knowing but to frightened to chase it up. The other worst thing is on you tube is the comments are mostly turned off on anything to do with PF

  • @kittyrichardson68
    @kittyrichardson68 4 года назад +2

    I have had it for a little over 3 years. I wear my oxygen tubes 24 hour ,a day. so yes that means I sleep in it. I wouldn’t be able do anything with it. If it comes out with in a short time my fingers start to turn blue which isn’t a good thing.

    • @kilowattg6542
      @kilowattg6542 4 года назад +3

      Has it affected you... cuz they sent me an oxygen therapy machine and I’ve had it for 2 weeks now and I’m on it almost 24x7

    • @realrider2197
      @realrider2197 3 года назад +1

      The blue colour of finger nail is because of lack of oxygen in the blood

    • @samrafarooq830
      @samrafarooq830 Год назад

      How are u doing now

  • @jimmierasmussen9298
    @jimmierasmussen9298 4 месяца назад

    I was diagnosed as IPF 2-1/2 years ago at that time I did not know what thia sickness can do other than doctor recommended oxygen therapy 24/7. As I watched your video you were speaking so norm like healthy person. So what are you trying to share in your video ? 😢😢😢 Thankyou

  • @cyberschmooze
    @cyberschmooze 7 месяцев назад

    I've read that low dose naltrexone may help to a great extent....used off label, of course.

  • @joanpashinsky-greve8760
    @joanpashinsky-greve8760 5 лет назад +3

    Update please 🙏

  • @mikeherrington1447
    @mikeherrington1447 4 года назад +7

    So my father in law has pf and he has had it for about 4 years, he has recently just about stopped eating about a month and he’s down to bones, we think he is about to die any day. Question is there any hope that he can sustain this and live longer or will he starve to death or will his lungs just fail. He drinks about 16 oz of water a day and rarely eats anything, he might have a couple bites of apple sauce or jello a day. We hate seeing him suffer like this but is there any chance to recoup?

    • @americanlungassociation
      @americanlungassociation  4 года назад +2

      Hi Mike, we recommend talking to our experts at the American Lung Association Lung HelpLine. Our service is free and we are here to help you. bit.ly/2OetcjP

    • @jayabhasin1701
      @jayabhasin1701 4 года назад +1

      Same with my father pls help he is getting weak day by day not eating loss of appetite pls help smeone

    • @mikeherrington1447
      @mikeherrington1447 4 года назад +1

      Jaya Bhasin we took him to the hospital he was in there for a week now he’s in a nursing home. He is doing a whole lot better he has gained about 5 pounds now and doing exercises to keep an appetite.

    • @mikeherrington1447
      @mikeherrington1447 4 года назад +4

      Jaya Bhasin for what it’s worth I don’t think the hospital help much he just died today. So it’s been almost 2 weeks but when he got to the hospital, his kidneys were shutting down. I think he had a few more days at home vs a little over a week in the hospital. If you need someone to talk to I’ll be here.

    • @jodhvirsingh8677
      @jodhvirsingh8677 4 года назад +2

      @@mikeherrington1447 sorry for you loss

  • @itsmemanolito9700
    @itsmemanolito9700 Год назад

    Hi May I know how to join the group? I was diagnosed recently with pleuroparenchymal fibrosis.

  • @cskiles318
    @cskiles318 2 года назад

    There are no updates on what I have seen sad 😞

  • @debrabogans5495
    @debrabogans5495 3 года назад +3

    My upper lobes has scarring from covid pneumonia doctor says it's not the same as fibrosis...🤨🤔🤨

    • @vishwanathcool.6679
      @vishwanathcool.6679 3 года назад

      😔😑 very sad to know

    • @VidhiKhandel
      @VidhiKhandel 3 года назад

      How are you doing now? My father has the same problem. Is it cured?

    • @abhinav_yadav001
      @abhinav_yadav001 2 года назад

      @@vishwanathcool.6679 My mother is diagnosed with lung fibrosis and we know it from last week she has very problem in breathing and have dry cough that doesn't go away pls suggest how can I take care of him pls reply.........I'm very dipressed

    • @dc.pentrumesteri4893
      @dc.pentrumesteri4893 2 года назад

      but it can be just as serious

    • @vandyverma218
      @vandyverma218 Год назад

      @@abhinav_yadav001 pls inform how you are take care of your mother and what the oxygen support level and oxygen saturation, my mother is also diagnosed the same disease...pls reply

  • @petermartin9335
    @petermartin9335 2 года назад

    Are there milder versions of COPD ? I'm being investigated for it at present. I have slight breathing difficulty on exertion sometimes, but no cough. Any advice appreciated.

  • @lisagast4616
    @lisagast4616 Год назад

    I know I read there’s two new drugs I tried Ofev it gave me bloody diarrhea I took it for three days each other kill me I couldn’t to make it back to the bathroom and I passed out joist and there’s another one new one out and will try for it and they’re like 10,000 a month and the insurance is going to pay for it but there’s help out there for people to afford it but I would try the Ofev I guess I’ve got to get on the lung transplant list if I qualify

  • @mdroky6998
    @mdroky6998 2 месяца назад

    Pf with ild

  • @Jess-wk5jo
    @Jess-wk5jo 3 года назад +1

    I have question for you over pulmonary fibrosis. Can Idiopathic pulmonary fibrosis damaged both of lungs or only one of the lung

  • @lisagast4616
    @lisagast4616 Год назад

    I mean you’re driving and stuff I’m frayed to get off the couch I can’t breve if I go to the bathroom look I’m not gonna make it back to the couch to my double Iser and I’m on oxygen therapy I’m on six units I’m going out of my mind I don’t know if the doctors are helping me or not all they do is put me on prednisone and nebulizer medication and then they want me to try this expensive truck I tried it and it gave me diarrhea I couldn’t walk fast enough to the bathroom I kept running out of air I did took a year for the doctorsI don’t feel like the doctors are helping me a big diagnosed for six months I don’t think I should be this badI know you’re not a doctor can you please give me some help or advice

  • @rajeshrajaghatta
    @rajeshrajaghatta 3 года назад

    My dad is suffering from fibrosis.Doctor advised me to admit him in hospital & few doctors said there is no medication so don’t admit better keep him on oxygen cylinder at home..confused,can anyone quickly suggest what to do plz

    • @americanlungassociation
      @americanlungassociation  3 года назад +2

      Talk to our experts at the American Lung Association Lung HelpLine! Our service is free and we are here to help. Call them at 1-800-LUNGUSA or submit your question online: bit.ly/2Z7HcmS

  • @pujanaskar6321
    @pujanaskar6321 2 года назад

    My father diagnosed with minimal fibrosis. Can anyone please tell me what is it?
    And beside he has 95-97% blood oxygen level. And he can hold breath for 40 secs and more. Is it a good sign?

  • @deborahstollman6238
    @deborahstollman6238 Год назад

    My husband was just diagnosed with small stable pulmonary fibrosis. We can’t figure out what this means exactly. It’s located in the upper section of one side of a lung. Since it’s small and stable that sounds positive but can it change and no longer be stable? Is this a death sentence? I don’t think I could make it if it kills my husband.

  • @DenisPop
    @DenisPop Год назад

    Hi! Can you tell me if " linear lesions of bilateral pulmonary apical fibrosis " is serious?

  • @sherlyjean-noel8678
    @sherlyjean-noel8678 2 года назад +1

    At this point i'm still very shocked with the negative result I got after suffering from pulmonary fibrosis for so long. Thanks once again Dr.Ogudugu on RUclips for your medication.

    • @dc.pentrumesteri4893
      @dc.pentrumesteri4893 Год назад

      Bagamias pula in the dead ordinary mates, all his family mates, may you experience something like this, lit candles for you

  • @carmencita.k
    @carmencita.k 11 месяцев назад

    Is it exactly like COPD?

    • @polaris7122
      @polaris7122 4 месяца назад

      No, it's a lot worse, your lungs go brittle with the fibrosis and won't expand!

  • @Jess-wk5jo
    @Jess-wk5jo 3 года назад

    Does IPF pulmonary fibrosis damaged both of the lungs or only one of them and can young age like 20s 30s get pulmonary fibrosis and can women get IPF thank you for your time

    • @americanlungassociation
      @americanlungassociation  3 года назад

      Hi Jess, Talk to our experts at the American Lung Association Lung HelpLine! Our service is free and we are here to help. Call them at 1-800-LUNGUSA or submit your question online: bit.ly/2Z7HcmS

    • @sundoesshine8800
      @sundoesshine8800 2 года назад

      Any age, I believe both lungs.

    • @dc.pentrumesteri4893
      @dc.pentrumesteri4893 Год назад

      baa you have nothing to do but ask the same question in every post? make people sick with your stupid questions

  • @aakrit4421
    @aakrit4421 2 года назад

    Do you still use oxygen therapy?

  • @bruhe
    @bruhe Год назад +1

    There is zero quality of life with this. Zero relief. I don’t want the transplant because it won’t stop the pain. For me, it’s hopeless and helpless. I want to move to a state where I can end my life on my terms.

  • @mouhamedbouchakel8369
    @mouhamedbouchakel8369 5 лет назад

    Bonjour

  • @fuhrer50
    @fuhrer50 2 года назад +1

    I am 32 years old, and I have lungs fibrosis, is there any exercises can help to reduce or at least stop the fibers ?

    • @cskiles318
      @cskiles318 2 года назад

      Here looking for info also. I wish to find 1 with tips to help

    • @dc.pentrumesteri4893
      @dc.pentrumesteri4893 2 года назад

      there are no irreversible ones

    • @fuhrer50
      @fuhrer50 2 года назад

      @@dc.pentrumesteri4893 it possible by surgery.. but it's dangerous

    • @Jess-wk5jo
      @Jess-wk5jo 11 месяцев назад

      ​@@fuhrer50I have question does pulmonary fibrosis affect and damage both lungs yes or no

    • @fuhrer50
      @fuhrer50 11 месяцев назад

      @@Jess-wk5jo sorry, I don't know

  • @rayunseitig6367
    @rayunseitig6367 3 месяца назад

    ok

  • @getupstairstobed
    @getupstairstobed 4 года назад

    My dog had this, christ, what she went through despite my best efforts, uh,

    • @getupstairstobed
      @getupstairstobed 4 года назад

      @Sleeping Warrior How did you do that?

    • @toledojeeper2932
      @toledojeeper2932 4 года назад

      @@getupstairstobed ...i don't think you want to know