Pulmonary Fibrosis News Forums Forums Welcome Lounge Updates – check-ins- Inspiration – Personal experiences?

  • Updates – check-ins- Inspiration – Personal experiences?

    Posted by Laurie on June 21, 2023 at 8:44 am

    Hello,

    I have recently been been diagnosed with PF.  Not sure what type but supposedly IPF as of now.  My first appointment with pomologist will be middle of next month.  (July 2023).

    OK I see all the horrible stats on the internet.. 2-5 year life etc.   I have no symptoms well I guess I do now since I contracted Pneumonia and that is when they found the Fibrosis tissue in my lungs.  I was hospitalized for 4 days and on supplemental oxygen (I am off it now).   SP02 averages 96-97 resting and 88-91 during exercise.  Which its only been about 5 weeks since my pneumonia hospital stay – so still recovering from that (I hear that can take months even on a healthy individual to recover fully from pneumonia)  I hope to get higher Sp02 after more time goes out from pneumonia.   I guess I have a little cough in the AM when I wake but not sure if that is still from Pneumonia or the other?

    Any rate – would others who have this disease please share some of your experiences?   Example how long you have been living with IPF since diagnosis and overall how you are doing?  Are you taking any medications or supplements, exercising etc?

    The stats on the internet are freaking me out a bit considering as of now I feel just fine.

    I have been walking on the tread mill 3 miles a day at 2.8mph. since my hospital stay and also do breathing exercises to strengthen my lungs.

    Thank you, any personal stories of hope or inspiration would be so appreciated.  I am recently widowed of 2 years.. my late husband passed of cancer.  And now just when I think I am getting my life back together this happens!

     

    John Maher replied 8 months, 3 weeks ago 14 Members · 19 Replies
  • 19 Replies
  • Steve Dragoo

    Member
    June 22, 2023 at 11:15 pm

    @laurie1960

    Hi Laurie,

    Welcome to PF News and forums.  Explore around and you will see lots of ideas and different stages of various clinical trials that may help you.

    Since life is progressive, so is IPF.  I was originally diagnosed in October 2016 and am now 74 with other issues. But I keep looking at lots of different supplements and breathing/PT – that may be something to bring up with your pulmonologist, also ask about doing a sleep test and if you have GERD; apnea and GERD can affect IPF negatively.  Stay well hydrated – water – stop processed foods, I am about 90% vegan and know it has helped me, exercise as much as possible that will carry you some when times get tough.

    As I age I recognize our spiritual walk is imperative. Some of my favorite verses are: ”Who by worrying can add a single hour to your life?” ”Since you cannot do this single thing, why worry about the rest?” Much more to the story. – Interested?

    Stay well…
    Steve

    • Laurie

      Member
      June 25, 2023 at 6:24 pm

      Thanks Steve..

      My spirits are good, I have always tried to eat, exercise and stay as healthy as i can..

      I guess IPF can kind of be like a chronic condition?

      • Steve Dragoo

        Member
        June 25, 2023 at 11:27 pm

        @laurie1960

        Yes, degrading chronic with ups and downs is a good way to understand the physicality of IPF, especially acute exacerbations.  But not to discourage you or anyone – we have a fight on our hands and I hear the bell ringing. Hope you(s) do too…

        Steve

  • Terry Bass

    Member
    June 23, 2023 at 1:30 pm

    Good news for me and you. To counter the negative reports and provide some inspiration, I would like to report some improvement in my IPF condition.

    It has been 18 months since diagnosis and began on 2LM 24/7. Started Esbreit 15 months ago and there was some stabilizing of IPF, but side effect of sun exposure and blistering skin was too much for me. Stopped it after 7 months and switched to OVEF and there are no side effects for me!

    PFT results are indicating the lung fibrosis has stopped growing. FVC was 66% 16 months ago and now it is 93%, DLCO was 38% then and now it is 59%.

    I’m 79,  stay positive, stay on the oxygen, take the medicine and complete the respiratory therapy weekly.

    • Laurie

      Member
      June 25, 2023 at 6:25 pm

      Thank you Terry..

      Your story has been VERY inspiring!!!!   You rock!

  • Dub Karriker

    Member
    June 28, 2023 at 6:52 am

    Hi Laurie,

    Having lost two close friends to IPF in fairly short order I was shocked to be diagnosed. That was three years ago. I tried OFEV and found the side effects for me to be unbearable (blood pressure spikes, crushing headaches). My pulmonologist wanted to switch me to Esbriet but I had noticed no advance of the disease. We agreed to wait to see if or when the decline would begin. It hasn’t. I did not regularly exercise before diagnosis but began shortly thereafter. I am very healthy otherwise. Regular exercise, walking, and particularly building and maintaining muscle mass as I age (I’m 68) has helped in many ways. I still run out of breath with aerobic exercise and just climbing stairs. I use Boost oxygen when I need a quick pick me up of my SPO2 which is similar to the numbers you posted. Don’t let the stats you see online discourage you. Most of those are outdated and unless there are other underlying health issues actual life span with IPF has increased significantly. As Steve mentioned, I find my Christian faith a great source of peace and strength. It’s good to be part of a supportive, praying community. You’re not alone.

    Take care and I’ll be praying for you.

    Dub

    • Laurie

      Member
      June 30, 2023 at 12:03 am

      Thank you Dub,

      Yes I plan to keep up my exercising, my positive attitude and just continue to live life as best I can.  I just became a Great Grandma.. got to be around so he can get to know this Granny!

      I am not afraid to die everyone does, its not the fear of death I guess I just don’t want to die in pain or agony.  Which I guess there are drugs and stuff so that does not happen.

      For some reason I feel mine is slow progressing not sure why but I just sense that it, and then again maybe its only wishful thinking.

      Thank you for sharing your story.

       

       

  • John Keck

    Member
    June 28, 2023 at 12:59 pm

    Hello Laurie,
    I was told in December 2022 that I had fibrosis in my lungs after a CT scan. I went through testing to try and determine the cause. The testing was inconclusive and in March 2023 was given the diagnosis of early stage IPF. Like you, I started researching the disease and became absolutely depressed by what I read. I started OFEV on June 7. I am 71 and so far have little if any symptoms. I am very active and belong to a cycling club. We ride over 100 miles each week and I do core and upper body two days as well. My goal is to do all I can to fight this disease through exercising my lungs, eating a healthy diet, and taking the available medications. I think the average life expectancy really depends on how far along a person is when diagnosed. I see a number of contributors who are diagnosed and are put on oxygen right away. My hunch is they have had IPF for some time and it was not diagnosed. Naturally their life expectancy is going to be shorter. I have read information which states that the average life expectancy of someone on OFEV is over eleven years. So take hope as I have, and let’s make the eleven year number and more.

    • Laurie

      Member
      June 30, 2023 at 12:12 am

      Thank you John!  I am planning to be around for atlesast the  next decade and longer as well.. I as you plan to stay as healthy both, mentally, physically and well my lungs are all part of the package that this life gave me in this body so going to take extra care of them as well.

      I hope you continue will little or no symptoms as I am the same no symptoms.   If they didn’t tall me I had this I would never have known as I feel absolutely great besides the IPF diagnosis in the back of my mind.

      Thank you for sharing your story.   Stories like this help many especially ones who were recently diagnosed.  What one reads on Dr. Google is all horrible!

       

  • Sally

    Member
    July 4, 2023 at 3:15 pm

    I am 74-1/2 and was diagnosed when I was almost 65.  I was stable (no oxygen unless flying)  – meaning out of breath on exertion, etc – until almost two years ago.  I had an exacerbation (no known cause) and was in the hospital for 10 days on 240 mg of prednisone and 30 LPM of oxygen !!  It took a long time to get back to “normal” but I have been on full time oxygen Ince.  I was doing well until January when I had another mini exacerbation but now have bounced back pretty well.  My oxygen needs are now 5+LPM on exertion – basically just walking around here- and 1-2 if sitting.  If I didn’t have another knee in need of replacement, I would probably try walking more but my oxygen tank only goes to 5LPM Pulse, so not really enough.  I use a NuStep machine (one machine they usually always have at Pulmonary Rehab) daily for an hour.  I go to PT weekly and do all sorts of exercises related to that.  I used to travel a LOT, but can no longer fly due to oxygen requirements.  Its’ hard when I have grandkids in Alaska and California . I have just started learning watercolor and I knit a lot.  I see friends occasionally but have a lot of alone time which is fine with me.  I am happy to be here and feeling OK. And, I have never been on OFEV or Esbriet (mainly due to stomach issues/IBS) and my pulmonologist thinks that is just fine. I am in my third clinical trial so hoping someone along the line gets some help from me doing them !!

    • Steve Dragoo

      Member
      July 4, 2023 at 10:36 pm

      @salgal

      Hi Sally,

      We have a lot in common – well sorta.  Contracted IPF at 67, now just 74 in May.  Had a similar exacerbation and did not eat for almost 6 weeks.  I don’t recommend that as a weight loss program.  Did not go to the hospital as over here in the Philippines IPF is very rare so my wife and stepson ran around all over the city getting those huge O2 bottles and I could finish 1 in about 12 – 16 hours.  Could not even shower it was so bad and took more than a year to ”recover” (I use that term loosely).  The 2nd event was just a few months ago and much much milder – was mostly able to still work online.

      We will be flying stateside later this year and I am concerned about my O2 on the plane without any support for the very long journey. But no one said getting old was easy or for the timid and I will have to make the journey regardless.

      My faith and spiritual walk will support me through these trials – regardless of the result.

      Stay well,
      Steve

  • Jan Cohen

    Member
    July 6, 2023 at 8:50 am

    I was diagnosed with IPF in August 2022.  I did not want to go on the suggested drug (OFEV) and preferred to try a more natural way to deal with it.  I just had my 90th birthday and figure that if I get 5 more years that will be okay.  For 4 months I tried some Chinese herbs (Wei Labs) which were outrageously expensive and didn’t seem to do anything.  Then I read about a study using AST Enzymes, (1 Serrapeptase & 3 Serracor-NK – 3 times a day) which seemed to help slow down and even reverse the growth of fibrin in the lungs).  I’ve been doing this program for 10 weeks now and am also on 2lm oxygen 24/7.  Can’t see a lot of difference, but at least, I don’t think I’m getting worse. I would like to hear from anyone else who has tried these products and the results.  My pulmonologist said to come back in 6 months, when I turned down the drugs.  I think, actually, that he thinks I’ll be dead by then. But I’m going to fool him.

    I did 20 sessions of exercise at a pulmonary rehab clinic and then continued on with the same type of exercise machines in the senior facility where I live.  I try to get some exercise every day, though a hip bursitis laid me low for a while.  I’m very active within this community, but only go out on occasion.  I would like to join my family for a week in Mexico, but am hesitant about the difficulties in traveling by air, especially since I would need to make one transfer.  I have an Inogen portable unit with a double battery which gives me 8 to 9 hours.  I’d like to know about how others have handled traveling by air.

     

     

  • Meredith

    Member
    July 23, 2023 at 4:38 pm

    Hi Laurie,

    The 2-5 year life expectancy was the fore the antifibrotics were available.
    They help slow progressing some.

    Wait until you see a pulmonologist before making any decisions.

    As everyone has said, take care of diet and exercise. More exercise than the recommended 30 min. Per day won’t make any difference.

    PF is a chronic, progressive, and incurable disease. Stay in touch with your pulmonologist. Go to check in appointments. Avoid catching colds, flu, etc.

    You will look normal so act normal. Do not try to plan your future just live in each day S it arrives.

  • Anthony Dalessandro

    Member
    August 2, 2023 at 8:29 am

    This is for anyone who may be interested in flying by air with a portable oxygen concentrator.  I recently (3/4 weeks ago) flew on Southwest Airlines and, even though I had a document from my doctor prescribing the oxygen, I was not asked for it at security check-in at the airport.

    Also, I ran my poc thru security check-in with no problems and no questions.   So, I would suggest checking with the airline you will be using and get their input.   You may be surprised that it  may not be a problem for you.

  • Phil Ryan

    Member
    August 5, 2023 at 2:24 pm

    I’m 77 and was diagnosed with IPS (as well as Pulmonary Hypertension) over 11 years ago, and like most others was given the potential lifespan of 3-5 years.  I’m still going strong, possibly as a result of medications (Esbriet and Tyvaso).  I’m on supplementary oxygen, but am leading a lifestyle that is pretty active, and going to pulmonary therapy sessions twice a week, which I find quite helpful.   I’m surprised that they’re still using that 3-5 years timespan because from what I’ve read it doesn’t appear to be valid with current medications.

  • Julian Bilier

    Member
    August 8, 2023 at 9:31 pm

    Please keep up your exercise and think positive.
    Sorry about your loss, my wife passed away in December 2020

    I was diagnosed with IPF in 2014 at the age of 71, I am 80 years old now and yes I have gone down hill so to speak. I have been on Oxygen since 2015 and have also take Esbriet.

    So don’t worry about numbers, just keep healthy and as the song goes One Day at a time sweet Jesus

  • Sailor

    Member
    September 1, 2023 at 5:27 pm

    This is my first post on this site. I was officially diagnosed with pulmonary fibrosis in April 2020 by biopsies of both lungs. Turns out the VA was aware of scaring of my lungs for at least ten years prior to the diagnosis. I’ve had lung problems as far back as 1977 and after recovering from surgeries through the years. The current belief is toxic exposure to Agent Orange in the early 70s and Asbestos exposure on ships and bases throughout my naval career. It took until January 2021 to be approved for Esbriet by the VA. My last PFT showed a marked reduction in lung function loss, but have been designated in Stage-2. I am 68 years old and have a positive mental attitude vowing to live life until the day the Good Lord takes me home. Breathing has been very painful for years, but recently worsened. I have lost roughly 80 pounds this year. My medical team have been straight with me and we are in the process of requesting grants from the Veterans Administration for Special Adaptive Housing assistance as my condition deteriorates and my mobility needs increase.

  • Sayee

    Member
    September 2, 2023 at 11:18 am

    Guys see this video it would give you a hope https://www.youtube.com/watch?v=EYluX-UOHOE If any other guys can chime in on their journey which will give rest of the people hope please do.

  • John Maher

    Member
    September 5, 2023 at 2:43 pm

    You were diagnosed because you were sick . my two older brothers had it, so I went and had a ct scan in 2017. I have shortness of breath but my oxen level is 95. I find that the dry cough is when the clock starts ticking, at least in my brothers cases. About two years after that was their end of life. One of my brothers was at deaths door and was in excellent shape otherwise and was saved by a transplant over a year ago. He just started playing golf a few weeks ago.

    I do not have the dry cough, but we are trying to do as much travel as we can wile I can. when the cough comes I know. the doctor will not commit on what my life span might be.

    so don’t throw the towel in and think you have two years go out and enjoy life if you are able take your family on vacation. I am married 43 years and i am trying not to spend too much of our retirement accounts. My wife is 66 and very healthy and her Mom is 93 and healthy so she may have a long life ahead of her.

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