Forum Replies Created

  • floyd-c-montgomery

    Member
    February 9, 2021 at 8:59 pm in reply to: Oxygen

    Hi all.  I am 85 years old and I’m in the final stages of this disease, and have been on oxygen 24/7 for over 3 years.  My needs have increased as it progresses.  I currently use 15l just to walk, and have 2 concentrators hooked in tandem to supply what I need in the home.

    My pulmonologist has set my goal to try to stay above 89%, and I can do that as long as I do not exert myself.  I know we are all different in how our bodies use oxygen,  but I know I would have been dead a while ago if not for the rather heavy use that  I do.  I have sleep apnea,  and have oxygen going through it as I sleep.  The flow is 15 l, and I know I don’t need that much at night, but my pulmonologist said it doesn’t hurt to have it that high, but that may because of how bad my lungs are at this point.

    My main reason for writing this is to assure victims of this disease that they should not hold back from using oxygen to make their lives easier.  It is much better to have a little more than you need than to not have enough.  Low levels not only damage your organs, it makes your life much harder.  I wish all of you well.

  • floyd-c-montgomery

    Member
    July 7, 2020 at 3:51 pm in reply to: how long can you take Esbriet?

    I’ve been on it for 5 months now, and am lucky that i do not suffer any side effects.  My first pulmonologist really knew nothing about IPF, and simply would not put me on anything but some inhalers, which did no good.  By the time i got to a pulmonologist who specializes in IPF, I am on 10l flow on oxygen to walk, and use oxygen 24/7.  The good news is that my use of oxygen has held steady fo the last 4 months.  I can’t answer your question,  but i intend to keep on it to the end (which may not be too long).  I’m 84,  and this has definitely made these last few months better.

  • floyd-c-montgomery

    Member
    October 29, 2019 at 9:10 am in reply to: Inhaler Use for Pulmonary Fibrosis

    Hi Charlene. I use both symbiocort and ventolin inhalers twice a day, and have used them for almost a year and half. I forgot to use then one evening, and really had trouble catching my breath, even though I was on 8l oxygen flow, so they make a difference for me.
    Last week I went through a 2 hour series of testing, including a nebulizer, which made no difference in lung function.
    I have a doctors appointment on the 18th of November with a specalist that deals with IPF, but I am not to optomistic about much help. I was diagnosted with IPF about 2 and a half years ago, and currently going down hill rapidly. I use 10l flow to walk, and am getting a dry cough. I would like to try laser, but cannot find anyone close that can do it.
    I am soon to be 84, so I have had a good life. The only good thing about this disease is that I am not in any pain.
    I enjoy reading this forum and wish everyone the best. It is a terrible disease!
    Floyd Montgomery

  • I am an 83 year old man that was diagnoised with IPF about 2 years ago. I just completed my seco jnd round of 24 therapy sessions,(twice a week).
    I currently am on O2 24/7, and my walking need is 6 liters per minute.
    The first day in therapy, at the end of my 6 minute walk with oxygen, my level dropped to 86. At the end of the sessions, with my 6 minute walk, it never dropped below 91. Not big numbers, but certainly a pleasent surprise to me and my pulmologist. I really feel better physically, so now I just need to discipline myself to keep up the routine. I feel it has improved the quality of my life, for how long, no one knows.

  • floyd-c-montgomery

    Member
    March 15, 2019 at 7:49 am in reply to: Laser Therapy Part III

    I simply cannot find anyone in the Lancaster, PA area that can or will do laser treatment. There are 2 Chiropractic practices that advertise having levrl IV lasers, but neither have responded to any inquiries I sent them. What would you suggest I to try to find someone to do the laser treatment?

  • floyd-c-montgomery

    Member
    February 4, 2019 at 8:14 pm in reply to: Dying from IPF

    I am not at the stage yet that I can avail my self of their services, but my wife has been very active in hospice and I won’t hesitate to use them.

    Thanks again for sharing. I will keep in touch.

    Floyd Montgomery

  • floyd-c-montgomery

    Member
    February 2, 2019 at 10:08 am in reply to: Dying from IPF

    Hi Megan.

    I am sorry about your dads death, but I wanted you to kmow how much it meams to me to read about his last 5 months.

    I am an 83 year old man that was diagnoised with IPF about 15 months ago, and I am slowly but surely going down hill. Currently I am on 6l of oxygen to walk around and more if I do anything. I am discouraged about how fast my need for oxygen increases, but realize it is what keeps me going.

    It is almost as if my pulmonologist doesn’t want to meet with me because, in truth, there is nothing he can really do except try to keep me pain free. He does not recommend, I go on either of the drugs, basicially because of their side effects and my age.

    What I really fear in not dying, but but how this thing ends. I have all the fears your dad did, but NO ONE wants to talk about the end of my life, or how it will happen. What a relief to read your post. It gives me a sense of serenity to know how it ended for your dad, and a hope that my death will be as painfree as his.

    THANK YOU SO MUCH FOR SHARING.

  • floyd-c-montgomery

    Member
    March 6, 2019 at 12:13 pm in reply to: Flying with IPF

    Hi Barry.
    I was diagnoised with IPF about 2 years ago. I have been on oxygen for over a year, and currently use a flow of 6l to walk.
    Last August my wife and I flew from Lancaster PA to Colorado Springs to see our great grandkids. I made arrangments through my oxygen suplier for a concentrator in my motel room and oxygen bottles to use when walking. I have an Inogen portable concentrator I use to fly, but made arrangements for wheelchairs for my wife and myself at the airports. The Inogen only goes up to pulse 5, but that is enough when I am sitting in the plane or in a wheelchair.
    My doctor ordered a high alititude test, and since I passed that, he reluctently let me fly.
    Had a scary experence coming home, when the TSA in Colorado took my extra battery from my wifes carry on and didnt tell us, but that their fault, not the concentrators.
    Flying is a challenge, but knowing this was probably the last time I would see my great grandkids, it was worth the effort.
    PS. I am 83 yrars old