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    • #32705
      Chati W
      Participant

      Hi Everyone,

      My father-in-law has been recently diagnosed with IPF. He is 67 years old and still very active for a man at his age. He swims, plays badminton, walks everyday (5-6km). The diagnosis (which is about a month old) came as a big surprise to all of us. We are worried and scared and are trying to learn as much as possible about IPF.

      If anyone can share their experiences with us, it would be greatly appreciated. We are just trying to understand what we can expect. His doctor, will likely prescribe him with Esbriet in August.

      As I am sure everyone in this forum once was completely taken aback with the IPF diagnosis, our family has been trying to cope and more importantly understand it.

      Any insights or information will be greatly appreciated! I

      Thanks,
      Chati

    • #32708
      Darcy
      Participant

      Hi Chati,

      I may not be the best person to answer this because I am still learning about IPF myself but, I believe the answer is that the course of the disease varies from person to person. Some people, like myself, live with mild disease for years while others progress more quickly. I was diagnosed six years ago and still maintain good lung function and do not require oxygen. I am 66 years old. My pulmonologist advised me to enjoy life and push myself physically. He said, “Some day we will have to deal with the disease but for now just live your life”. So, I am hiking, kayaking, bird watching, and picking huckleberries in the mountains. At some point lung function will diminish because it is a progressive disease and I don’t believe anyone actually escapes it. Hopefully, your father-in-law has decent lung function and his disease will progress slowly. That will give him time to continue enjoying life and give the people who love him time to spend quality time together.

      Darcy

      • #32730
        Chati W
        Participant

        Hi Darcy,

        Thank you very much for sharking your experiences! We found it very insightful and also encouraging. Like you, my father-in-law, still is able to maintain good lung function and does exercise regularly. We are really hoping that he is able to continue functioning at this rate but it is just too soon for us to know.

        When he was diagnosed with IPF earlier this summer, the doctors did a pulmonary function test and noticed that his lung function had declined since the last time he did the test which was in 2016. We were curious to know whether throughout the last 6 years, has your lung function slowly declined or stayed stable? Also, are you taking Esbriet and has that helped slow down any potential decline in lung function.

        Any information you can provide is greatly appreciated!

        Thanks,
        Chati

    • #32738
      Kerry
      Participant

      Hi, I’m Kerry and I’m 75. Five years ago I was diagnosed with IPF and so far so very good. My lung function has been closely monitored and has basically remained stable. I’ve taken both of the drugs that are currently available to slow the development of the condition and can tolerate neither. I exercise regularly, live a very busy and active life and I still can sing as a member 9f a pretty good choir.  I really push myself.  I do have periods when my breathlessness increases along with my associated cough and things go pear shaped but then things bounce back. I have never had the need to be on oxygen.

      I clearly remember how shocked and horrified I was when first diagnosed and I’m so very grateful that my IPF has progressed so very slowly so far

      I wish you well on your journey and hope you’re as fortunate as I am.

    • #32743
      Cheryl thomas
      Participant

      Hi Chati.

      I was diagnosed in 2016. Didn’t have any decrease in PFT’s and CAT scan until 12/19.. I also am 67. My pulmonologist will not order the 2 approved drugs because he says they will make me sicker than I am. I still am very active but definitely notice my pulse ox  goes low with any increased exertion. I am presently in a pulmonary rehab program. I swim, ride my e bike and kayak. I have been in a clinical trial for a year. Also have been getting tested for a lung transplant. Get involved with the PFF foundation.   I am also  in a support group. We meet monthly on line. That has been a life saver for me to be able to talk to people like me. Keep active and exercise!!! Take care. I think about this everyday, never can I forget about it. Cheryl

    • #32750
      Millie
      Participant

      I, too, was recently diagnosed—-in December 2021. It was quite a shock as I am very active, swimming laps 3 times a week exercising in the gym daily, line dancing and many other activities. I am 82. The scarring showed up on an x-ray I had done 3 years ago but I was never told about it. Pulmonologist said I could have had it for many more years as in the beginning it progresses very slowly. The only thing I’ve had to give up so far is swimming. I still do everything else but with oxygen. I went on Ofiv in march and seem to be tolerating it very well. I have no other major health problems. Everyone is different so you may have to take a wait and see attitude. Take one day at a time and live it to the fullest. Then you will have no regrets when you have to take that step back. Good Luck.

    • #32776

      Everyone’s experience is different, as noted previously.  It is important to stay as healthy as possible, including exercise, maintaining normal weight, good nutrition and correction of any metabolic illnesses including abnormal cholesterol and diabetes.  It is helpful to have a pulse oximeter to check blood oxygen saturation (they are available at any pharmacy or on amazon and are inexpensive).   It is hard not to look ahead and worry, but try to live your life now and if there are places you want to go or things you want to do, plan for them now while you’re able to do them.  It is worth looking into what is involved with lung transplant in case that becomes an option if it becomes difficult to function even with oxygen.  I wish you all the best.  I was diagnosed 5 yrs ago and did well for 3+years.  I could not tolerate the meds.  I had a single lung transplant 1+ yrs ago and had a rough 6-8 months after, but am now able to do what I want, though at a slower pace.  A supportive family makes a big difference.

    • #33579
      Mike
      Participant

      I’ve joined the forum and have scanned a bit of the info here, and I don’t seem to be able to find anyone with similar symptoms and/or disease progression as myself.  I was told by a doctor a few years ago that I had IPF.  As the Xray that discovered the IPF was taken because I had colon cancer, the IPF was put on the back burner.  I beat the cancer, but my lungs are now quickly shutting down.  I experienced an exacerbation in Mar this year, and a CT scan showed advanced scarring, and was started on O2 therapy.  I started on occasional use at 2 LPM.  Since then, (7 months) I now need about 6 LPM for maintenance.  Any small exertion sends my O2 saturation into the 70s.  A moderate exertion, like going up a few stairs, and my O2 goes to the 60s and my pulse is 100+.  Now I need 10 LPM for a few minutes to get the O2 back to 90. I took Ofev for a couple of months, but stopped because it was making me feel sick, and I read some studies done with patients on Ofev.  A cost/benefit analysis made me choose to not be sick in my last months.  A long story.

      So my reason for joining the forum is to get some insight into end of life issues.  My doctors won’t answer me, just give me a sad eyed shrug.  Barring a heart attack or stroke, I imagine my end will be like drowning slowly.  Like a fish out of water.  I hate being so negative, as so many forum posters are doing very well.  But I accept my mortality, and I am not sad or worried as I have a deep faith in God, and his Son Jesus.  I’d just like for someone to describe to me what to expect if they’ve had someone go through this.

    • #33599
      Bruce F.
      Participant

      Mike,

      I would encourage you to speak with your pulmonologist, your internist, their nursing staff, and perhaps with a hospice team if you want to learn more about the very end stages of the disease.

      I had the experience of watching my father and  my grandmother die of IPF, and now I have been diagnosed as well.  I am not a medical person nor a psychologist, but I can tell you that seeing my Dad go through the last part of his disease and his life makes me less fearful than I would be otherwise.  There are very effective medicines that any compassionate team of caregivers will provide you to help you cope with the drowning sensation; palliative care teams can be wonderful and have helped my family through some of the hardest and most fascinating moments of our lives.

      For now I am just living my life, trying (often unsuccessfully) to cultivate healthy habits that my older self will thank me for.  That dynamic has defined my whole life, come to think of it.

      Let’s keep moving as well as we can!  And best to all.

      • #33631
        Christie Patient
        Keymaster

        What a lovely, compassionate, and helpful post Bruce. Thank you for sharing your story and advice here. I know a lot of people are afraid of the end stages of this illness. It’s good to hear from people who have seen it, and you have the unique position of having both seen IPF in family members and experienced it yourself. Your perspective is valuable.

    • #33600
      Bruce F.
      Participant
      1. Mike,

      I would encourage you to speak with your pulmonologist, your internist, their nursing staff, and perhaps with a hospice team if you want to learn more about the very end stages of the disease.

      I had the experience of watching my father and  my grandmother die of IPF, and now I have been diagnosed as well.  I am not a medical person nor a psychologist, but I can tell you that seeing my Dad go through the last part of his disease and his life makes me less fearful than I would be otherwise.  There are very effective medicines that any compassionate team of caregivers will provide you to help you cope with the drowning sensation; palliative care teams can be wonderful and have helped my family through some of the hardest and most fascinating moments of our lives.

      For now I am just living my life, trying (often unsuccessfully) to cultivate healthy habits that my older self will thank me for.  That dynamic has defined my whole life, come to think of it.

      Let’s keep moving as well as we can!  And best to all.

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