Forum Replies Created

  • earl-robinson

    Member
    April 3, 2022 at 1:06 pm in reply to: Returning to Work with a New Diagnosis

    The purpose for my writing here is to encourage some of you older guests that there is still life after IPF. I am on 10-12L of O2 during the day when I’m moving around some but mostly sitting and my O2 level can drop into the 70’s when I walk very short distances, say 20 or 30′. At night I reduce the O2 level to 6L.
    At age 83 I’m not planning to return to work. I was diagnosed with IPF 3 or more years ago and my condition is pretty stable now. Since my brain still functions about as good as it always has, I use it as I sit most days. I do go to pulmonary therapy to work out with some monitoring of what I’m doing. I also do some volunteer work helping with some desk chores for a small non-profit that helps to keep my mind active. There are some other groups I help with horticulture questions, and this also keeps my mind busy. Keep busy and do what you can, as long as you can. It isn’t easy but important to stay connected doing good for whom ever you can. You can always tell someone about Jesus after you have a relationship with Him. Read the some of the Bible starting in the book of Romans or the book of John. Then just keep reading for more comfort and suggestions of how to tell others about what God, through His son has already done for us. Hoping we connect after we leave this life and head onto eternity.

  • earl-robinson

    Member
    March 20, 2022 at 12:51 pm in reply to: OFEV low 02 levels

    Mike, I have been on OFEV for over 2 years and seem to have much the same reaction to activity as you do. I’m on 13L of O2 during the day and my levels will still drop to in the low 70’s just going to the bathroom which is only 20’each way from my chair. At night I lower the level of O2 to 6 or 7L. In addition to the IPF I also have PAH and I’m talking Tyvaso for that. I go to pulmonary therapy 2X a week where they up the O2 to 15L when on the machines. I use a wheelchair to get to and from the car. Sure puts a crimp on being active. Never thought I would see this. Earl

  • earl-robinson

    Member
    February 25, 2022 at 10:28 am in reply to: Split Ofev doseages

    I’ve been on Ofev for going on 3 years. I started on 150mg 2Xday and my doc had me get blood sample 3 times annually to check my liver function. At one point he suggested going to 100mg due to the effect the Ofev was having on my liver. I take an imodium tablet every other day and eat a meal with the Ofev so I have no serious digestive track issue.
    Wishing you all the best and learning we just have to slow down and take longer to do anything. I’m on 10L of O2 during the day and 6L at night.

  • earl-robinson

    Member
    February 21, 2022 at 2:10 pm in reply to: Extreme Fatigue

    I find that fatigue is what most of this disease is.  I’m used to going-at-it and getting it done. But guess what, those days are over.  My wife used to call me the Ever-Ready Rabbit.  I seldom ran out of pep.  Now…..I…. have….. to…. go…..slow.  Yes, pacing yourself for the day is all I know now.  We are all different and I’ve been told IPF affects each of us differently.  I have to remember to “breathe in through your nose, out through pursed lips…. slowly”. I’m on 10L of O2 during the day and 6L at night.  I’m into this game about 2 years now. OFEV 100mg 2X/day and Tyvaso (inhaler) 21 breaths 4X/day for PAH.  My condition seems to be stabilized.  I hate to be a burden on my wife but I really don’t have a choice. All the best to you.

  • earl-robinson

    Member
    February 3, 2022 at 3:20 pm in reply to: Help for High Oxygen User Nasal Pain

    Like many of you, I’m using between 6 and 10L of O2 and I have been using Vaseline in my nose for 6 months or so and it is the only product I have found to help me. I apply it in each nostril a couple of times a week and it helps keep the crusty build up soft so it can be removed easier, and it keeps my nose from getting sore. I’m not sure why it is frowned on other than it is a petroleum product. The flash point of Vaseline is 400F so if you keep that kind of potential heat away from your face I doubt you would have a problem. I hope you all find a solution. This is a great place to connect and be able to assist each other with this challenge we face. Keep the faith and press on. Keep a positive attitude for this will pass when we believers pass on to glory.

  • earl-robinson

    Member
    May 6, 2021 at 4:19 pm in reply to: Supplemental Oxygen Questions

    @richardguerard

    Rich, my Anthem Blue Cross and Medicare cover most of the cost. My cost is less than $25 /mo.  I lease all the equipment. I do have 5 small O2 tanks here at the house for use when I need a constant flow of  O2 instead of the pulse flow from my POC.

  • earl-robinson

    Member
    May 6, 2021 at 4:14 pm in reply to: Supplemental Oxygen Questions

    Hi there, I have been on supplemental O2 for over a year now. Diagnosed with IPF and PAH and using O2 concentrators when home @ 8L/M during the day and 6L/M at night. Have very little use of O2 tanks. When I’m sitting and driving I use a 6L/M pulse unit that works well.  It is an OxyGoNext unit.  I can’t imagine the hassle with tanks.  I have my air tubing from the concentrator hung up out of the way with some little homemade hangers that allow me to have a day set up and one for night when sleeping. Keep as active as you can be.

     

     

     

  • earl-robinson

    Member
    March 4, 2022 at 1:02 pm in reply to: OFEV low 02 levels

    Ron, I’ve been on OFEV 150mg 2 times daily, with food and then down to 100mg 2 times daily with food for over 2 years with no problem with low O2. I suggest you look for some other reason for the drop in O2. I have very little problems with digestive track either.
    Earl

  • earl-robinson

    Member
    December 7, 2021 at 4:00 pm in reply to: Help for High Oxygen User Nasal Pain

    Karen, I talked briefly to my pulmonary therapist, and she said it all depends on your own condition, and since there are a number of issues that we each have our own treatment.  In my condition she said “you don’t have to worry about being overly oxygenated”  but that doesn’t mean your condition would have the same answer.  You will have to talk to your doctor about your condition.      I have had another idea that I bounced off my doctor and that is we O2 users that need to adjust the O2 flow need a Blue Tooth app. so we can remotely adjust the concentrator to different levels of O2 output.  If my O2 Concentrator is on 6L and I want to move around I need to change it to 10L my O2 level drops and then I have to wait until I get back into the 90’s and after I’m ready to sit for a while I have to go and turn back the concentrator to 6L and by the time I get back to my chair my O2 level has tanked again and I have to wait to recover.  Do any of the rest of you have this problem?

     

  • earl-robinson

    Member
    May 27, 2021 at 2:51 pm in reply to: Supplemental Oxygen Questions

    Marianne,

    I have been on O2  24/7  for over a year @ 8LPM during the day and 6L at night when sleeping.  I am using Oxygen Concentrators that run 24/7 and the cost is mostly covered by my insurance.  I occasionally use a tank when away from home but most of the time I use a battery operated Concentrator that pulses the O2 so the supply is diminished and is not enough for any activity but works when sitting, like driving the car, etc.  I would encourage you to explore the Concentrator option. Cost for all equipment is under $25/month.  Earl

     

  • earl-robinson

    Member
    May 5, 2021 at 5:48 pm in reply to: Tyvaso for IPF

    I am 82 and also on Tyvaso for the past 2 + months.  Started at 3 breaths 4 times a day, 4 hours apart and now I’m up to 18 breaths each time.  Causes some coughing during the session but nothing I cannot tolerate.  No known side affects at this time.  I also take OFEV 100mg two times a day with food.

    I’ve been diagnosed with IPF and PAH, slow to move around but with O2 24/7, 8L day and 6L night I seem to be stable and possibly some slight improvement.  My insurance didn’t help much at all but I was able to get financial assistance from the 2 great companies that make these meds. I would encourage to contact the companies and see if you can qualify for assistance.  For OFEV contact B.I. Cares.  CVS rep. was able to help me with the Tyvaso.