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    • #32071
      Linda
      Participant

      my question is for those of you on high continuous flow lpm are you able to get around the house or go out occasionally? Are you bedridden?
      i worry that my 75year old husband will be bedridden in the near future, horrible not knowing what the future will bring. I try to live in the present, one day at a time. I would appreciate all your advice.

    • #32072
      Terry Moriarty
      Participant

      Hi Linda,

      It hard having a condition that doesn’t have the ability to chart its progression path.  I don’t think that any two people’s journey is the same. I’m 73 this week.

      I’ve been on oxygen for 10 years and high flow oxygen for the last 9 months. I’m on 12 lpm resting and 15 lpm moving around. I do not have IPF, but do have PF from Hypersensitivity Pneumonitis that is similar to IPF.

      At home, I use 2 10 lpm home concentrators hooked together. That’s been a challenge because I need two humidifier bottles and they don’t seem to like working together. But I need them to keep my nose from drying out. I use a 50 ft and 25 ft tubing held together by a swivil connector.  That allows me to move around my house with a walker. The swivil connector helps keep the tubing from twisting.

      At this point, I’m pretty much housebound, but I’m definitely not bedridden.  Mostly now, when I do go out, it’s for doctor appointments. I probably could go out to restaurants, but can’t go shopping for anything because I get so short of breath so fast. I used to drive on my own, but have stopped that since going on tanks. I’m not confident that it won’t run out unexpectedly. This has been the biggest change in my life style.

      The hard part of being on high flow oxygen is the need to use tanks instead of my portable oxygen concentrator (POC) when I do go out because I’ve exceeded its capabilities. I have to determine how long each trip will take to ensure I have  enough tanks to be swapped in as needed. I use a power wheel chair that can carry 1 D tank and my companion brings another tank in a separate D tank cart.

      Hope this information is useful to you. You may want to talk to your pulmonologist about hospice support as it is meant for families who need additional support for caregivers like yourself.

      • #32079
        William Pommy
        Participant

        I sleep with oxygen on 4 L per minute  and a CPAP machine.  Well active during the day I use liquid oxygen small tanks and have it set on 10 L per minute sometimes up to 15 when I am going upstairs.  When grocery shopping I take one tank keep it on 10  and monitor my oxygen, and if it goes lower than 90 I increase to the next setting which is 15 and keep it there until my oxygen level goes up to 90.  I need to focus on moving more slowly and breathing correctly to maintain the proper oxygen level. It certainly is inconvenient but at least I’m able to get out and do things.

        • #32087
          Linda
          Participant

          Thank you, William. Liquid O2 is not available in Florida.

      • #32088
        Linda
        Participant

        Hi Terry, thank you for your quick informative reply. My husband is pretty much housebound too, doctors appointments are pretty much the only time he leaves the house. He is on palliative care which has been extremely helpful for both of us.

        • #32104
          Wendy Dirks
          Participant

          Hi, Linda – Just saw your husband is getting palliative care too. Wonderful!

      • #32094

        Hello….your information is very useful for me.
        I am 75, diagnosed 18 months ago with  Pulmonary Fibrosis ( although I do believe I have had it MANY years  longer) and was recently diagnosed with an additional disease, Pulmonary Hypertension,   I understand what you mean about needing to plan how many tanks will be needed for any type of trip…..mostly doctor or doctor related visits.   I do not go shopping or visiting .   I consider myself house bound and close to ‘sitting or lying down ‘ bound….not quite bedridden  .   I can do very little around the house unless I am seated.
        You seem to have devised a good way to navigate your house with the 50 and 25 foot tubing…..and the 2 machines.   I am going to reread your post to understand better what you are doing to make like easier.   I was doing very 6 months ago…..was able to drive, do my own grocery shopping etc.    At that time I was able to use the portable oxygenator and a small tank of 02…. I was only using 2…. sometimes 3, but still needed it 24/7.   Then I was rushed to hospital for a lengthy stay ( 2 actually) and have been on the very high lpm.   10 and 12 lpm. My lifestyle has changed considerably.    For sure everyone’s journey with PF is different.

         

    • #32082
      Millie
      Participant

      I am 82 and was diagnosed in December 2021. However, I’m told it showed up on an x-ray I had 3 years ago. I am on oxygen 24/7. At first it was scary. However, my life has not changed much. I’m out every day enjoying life as I always did. I’ve been on ofiv for a month now but will move up to the 150mg next month. No side effects on the 100mg’s. As this progresses things will change but I want to enjoy every day that I am able to go and do. I don’t worry about tomorrow or next week or month as I can’t change what will happen.

    • #32089
      Chris Montgomery
      Participant

      I am in a similar situation with approx 10 lph of O2 and at 73 I was very active and now I get out of bed and to the sofa and that’s about all I can manage. Iam not bed ridden yet but pretty close. My problem is quality of life. I feel as Iam holding up the inevitable and I realize it doesn’t get better from here so what’s the point. I feel fortunate that God has given me the opportunity to get my affairs in order and as of now Iam all packed and ready to go, just waiting for the train. Not to be negative but Iam not having fun and hate to see my loved ones have to worry about me and to my friends it’s like saying goodby over and over. I wish there was another way but I don’t see one. If anyone has any advice on how to encourage positivity I would love to hear.
      Chris M

      • #32103
        Wendy Dirks
        Participant

        Chris, are you able to access palliative care? I’m only able to get from chair to bed to chair now but am in the process of sorting a wheelchair. Palliative care has changed my life!

      • #32105
        Wendy Dirks
        Participant

        I know it’s not for everyone, but I meditate daily and do gentle chair yoga, both of which help enormously to keep me positive. I keep a gratitude journal as well. Through my palliative care team, I’m getting online cognitive behavioural therapy (CBT), which is great for dealing with unhelpful thoughts and self compassion. I don’t know if any of these could help improve your quality of life, but they do help mine enormously, along with a hobby that can be done sitting down.

    • #32102
      Wendy Dirks
      Participant

      Hi, Linda – My husband is my carer and I know how hard this must be for you. I am now using 5 lpm at rest and 10 lpm when moving. I have two oxygen concentrators downstairs and two upstairs so that it is relatively easy to adjust the flow rate. I’m in the process of getting a wheelchair set up. Yesterday my husband and I went for a walk with a liquid oxygen flask set at 5 lpm. It was my first trip out in months and delightful. My husband is 76 and it was difficult for him so I am going to look into getting an electric wheelchair. We live in England so all of this is free of charge on the NHS. I am receiving palliative care through a charitable organisation and it has made an enormous difference to the quality of my life and I can’t recommend it highly enough if you are able to access it. My understanding of the progression of lung diseases is that we will ultimately be homebound, chair bound, then bed bound at the end. The trick is to accept each change and strive for the best possible quality of life at each one. I also urge you to find a carer’s support group if you can. We are all so grateful to our carers. You are amazing. Much love, Wendy

    • #32106
      Wendy Dirks
      Participant

      Let me add to this conversation that 3 months ago I was admitted to hospital and during the first 24 hours it wasn’t clear that I would recover or leave alive. I did and that alone is enough to make me enjoy every breath I take. My loving husband, my cuddly cat, my devoted friends – I have so much for which to live and be grateful.

      • #32107
        Wendy Dirks
        Participant

        And the sound of Mr Blackbird singing outside my window!

    • #32110
      Chris Montgomery
      Participant

      Wendy, yes I have hospice and they check on me regularly even offering a bath which my wife has rejected. Lol. I do have days where I see a brighter side and my sense of humor seems to help a little. I spend time outside and can’t help but feel disappointed on how little I can do. I’ve lost my appetite now which was one of the last things I enjoyed. This is a horrible disease that takes your dignity little at a time but this slow process of dying is killing me. It is good to have someone to discuss my inter feelings with. Thanks to the forum
      Chris

      • #32112
        Wendy Dirks
        Participant

        Hi, Chris – I’m so glad to hear you have good days and hospice care. I understand the frustration of not being able to do what we could once do and also the relief of being able to express it. My family, colleagues, and friends do not want to hear about it when I talk about my death while I find it empowering to talk about it. I wish I could help more but you always have many understanding ears here.

    • #32111
      Chris Montgomery
      Participant

      Wendy, yes I have hospice and they check on me regularly even offering a bath which my wife has rejected. Lol. I do have days where I see a brighter side and my sense of humor seems to help a little. I spend time outside and can’t help but feel disappointed on how little I can do. I’ve lost my appetite now which was one of the last things I enjoyed. This is a horrible disease that takes your dignity little at a time but this slow process of dying is killing me. It is good to have someone to discuss my inter feelings with. Thanks to the forum
      Chris

    • #32122
      Linda
      Participant

      Thanks, everyone, for all your comments. Are any of you going to pulmonary rehab? My husband’s pulmonologist referred him to Pul. Rehab, however, my husband is so out of shape that it’s very difficult for him to walk into the facility. Palliative care has prescribed PT to come to house to work with him which has helped a bit.
      My husband has been on Esbriet for two years which has decreased his appetite resulting in a 20lb+ weight loss.

      he is also on 2 anti-depressants which helps with his mood along with his family and our precious schnauzer. 🙂

      • #32123
        Terry Moriarty
        Participant

        I’ve done both. From what you’ve described, in-home PT would probably be the better starting point. Getting into the rehab facility was difficult for me too and I used  a walker. I had to stop going because of low blood pressure.  Now, I have to use a power wheelchair when out of the house,  as it carries my oxygen tank. I can lower the oxygen lpms when in the chair, thus getting more time from the tank.

        Once he gets to the point he can get into rehab facility, I think he would find it beneficial. I found the equipment to be fairly easy to use and I felt a bit better after each session.

      • #32125
        Wendy Dirks
        Participant

        I loved pulmonary rehabilitation and was actually in a promotional video distributed to GP surgeries to encourage participation. The lockdown during the pandemic closed our class down. It was so much fun to exercise with others in the same boat. During lockdown I continued working with a physiotherapist one to one as part of my palliative care. Now that I’m chair bound more or less, I do gentle online chair yoga every day. I also took part in an online yoga class via Zoom but since my latest exacerbation and 2 hospitalisations, I’m slowly trying to work up to the level of fitness I need for a long class. For those of us who were once fit and active, finding joy in moving is really a wonderful way to keep from getting depressed. Sometimes I listen to James Brown’s music and “dance” in my chair with my upper body. I hope your husband finds ways to keep moving too.

      • #32132
        Millie
        Participant

        I’m doing pulmonary rehab now. I have always been very active physically so it has been easy for me. I’d try the pt at home first and then, if you can, go to the rehab that was recommended. You can start slow. You will be monitored for your blood pressure and heart and lung numbers by the staff several times during your session. They say that exercise is one of the best things you can do for yourself and it is free. Just try to do as much as you can without overdoing it.

    • #32161
      Randy
      Participant

      Hello Linda, IPf is a terrible disease that is very unpredictable and effect different people in different ways. I was diagnosed over 2 years ago but I have feeling I had it before that and was told it was emphysema. I started out right away on oxygen because one of my lungs was already gone. I was able to get by with  4-5 l. Then as it worsened I had to have 2 machines hooked together. Then one machine died and it was replaced with one that goes to 10l. Well, I was doing 5, then 6 and now 7. My breathing and caughing is getting worse and I am at the point where I cannot do anything that involves bending over. I instantly start caughing and my oxygen goes to about nothing. So my poor wife is now doing her thing and mine. I got an Inogen after getting out of the hospital so I wouldn’t have to haul tanks around. I only problem with it is it’s pulse so you don’t get oxygen continuous. It says it put out 6 but my doc says it really only puts out about half. So, the only time I use it is when I go someplace either as a driver or passenger. Yes, I am still driving and will tell I just cannot anymore. I have driven since I was about  years old.

      Don’t know it this is any help to you but if you would like, contact me by email. Would be happy to talk with you.

    • #32162
      Robert B
      Participant

      Randy, I’m only on 3 but I coughed all the time and had 7 lung infections in a year. My pulmonologist decided to try me on 10 mg of prednisone daily and 250 mg of Azitromiacin (?) three days a week. It has been almost two years and I’ve not had an infection nor do I cough all the time. I rarely cough. I even got by after having Covid. It changed my quality of life. I always used large does of steroids for recovery but haven’t needed to do that since I made the change. I thought I’d let you know. It sounds like it is difficult maintaining quality.
      Bobby Bell

    • #32167
      Randy
      Participant

      Hello Bob,

      I too take 10mg of prednisone daily plus an inhalent of flovent 110mcg 4 times per day. It used to do good, but not so much anymore. My doc now has me on a nebulizer 3 times per day. It does pretty good for awhile as long as I don’t lean over. Leaning over gets me big time. Next month I have my next breathing test. I am almost afraid to find out what it will be. My last one showed at 37%. All I can do is live day by day.

    • #32163
      Linda
      Participant

      Thanks everyone

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