Forum Replies Created

  • burma

    Member
    February 25, 2021 at 4:07 pm in reply to: Sudden deterioration in breathing

    I am sorry to hear your father is having a problem with shortness of breath.  It is very scary, I know.  I have been diagnosed with Pulmonary Fibrosis (2018) and take OFEV.  I am on 4 L oxygen., 24/7, for about a year now.  I was having a very hard time breathing just by taking a couple steps.  My Oximeter would go down to 74 and it would take 15-20 minutes to get it up to 90-92.  This went on for about two months, fighting it and being miserable.   I made the mistake of thinking it was just the PF and there was nothing they could do about it.  DON’T ASSUME ANYTHING!  Thursday morning I got up and decided I just couldn’t fight it anymore and called my Pulmonologist who advised me to go to the ER and get evaluated.  Long story short, after testing negative twice for covid-19, I was admitted to the hospital.  Of course there was lots of bloodwork, a CT scan, and an Echocardiogram.  The attributed the shortness of breath to some fluid on my lungs and once that was taken care of, my breathing got much better.  Of course, Pulmonary Fibrosis and many other lung diseases cause shortness of breath, but there are other things that can contribute to it also and it’s best to just go to the hospital and get checked out.  I am home now and still have issues but feeling a lot better and breathing better.  Good luck!

     

  • burma

    Member
    November 18, 2020 at 7:03 pm in reply to: Head aches

    Hello All,

    I too have been fighting headaches and I contribute it to possibly lack of oxygen and/or dry sinuses, if not both.  I am on oxygen and I do use a humidifier on my concentrator and that has helped.  I would wake up every morning with a headache.  My morning routine includes a few doses of saline spray and then it would seem to go away only to return later.  I see my Pulmonologist Dec 2nd and I plan on asking him about it.  Good luck!

     

     

     

  • burma

    Member
    November 5, 2020 at 2:26 pm in reply to: Cold Weather and Fatigue for IPF Patients.

    Hello Charlene!  I am one of those that dread the wintertime.  Not so much because of my compromised lungs and the cold temps, but because here in western Pennsylvania, we have a whole LOT of cloudy, dreary days and it just seems to suck the energy out of me.  I seem to be tired, have brain fog, loss of ambition, and quite lethargic on those days and when they last for a week or more, it is really bad.  It is a struggle.  I’ve discussed this with my doctor and my husband has installed the “daylight” light bulbs in the rooms I tend to be in the most during the day.  I take vitamins and use the lights all day on those days.  All this in turn, is bad for my lungs because it is such a chore to try to even walk around the house extra steps and get some exercise.  Then, when the sun comes out, I feel fine and the energy picks up.  So it seems like a vicious circle.  Short of moving south, does anyone else have this problem?  Any ideas or tricks to “wake up the brain”?

    Thank you, have a warm blessed day.  Hugs to all.

    Dijano

     

     

  • burma

    Member
    May 21, 2020 at 2:20 pm in reply to: The Frequency of Changing Your Nasal Cannula

    I am on oxygen 24/7 but I only change my canula every other month, and the oxygen tubing about every six months. I clean the canula every day with vinegar and soap and then rinse with hot water. Use the vinegar first and then the soap and water. Rinsing it will take away the vinegar smell. As for the long tubing, I gather it up, plug the drain, take it in the shower with me. While showering, I clean the tubing and rinse, and dry when I get out of the shower. It works well.

  • burma

    Member
    February 4, 2020 at 7:05 pm in reply to: The Awkwardness of Wearing A Mask In Public

    If I feel the need to wear a mask, I do and I really don’t pay any attention to anyone’s opinion. They aren’t fighting to breath! I use a VOG mask. A little pricey but worth it. Although, I don’t wear my mask into the bank. Don’t want to scare anyone. LOL I also purchased two “Gators” on Amazon, which work well. (You can also pull the back up to cover your head like a hat.) They slip over your head, around your neck and you can pull them up to cover your nose and mouth when needed. They aren’t as noticeable as the masks.

    Charlene, one other idea having to do with showering with Oxygen. Purchase a long terry-clothed robe in your favorite color. Put it where you can reach it from the shower and when you’re done with your shower, put the robe on. It acts like a towel and keeps the chill away as you step out of the shower.

    I do enjoy reading all the ideas and comments from our fellow patients and caregivers. They have helped me so much through this dx. (IPF May 2018, currently on Ofev and oxygen 24/7)

  • burma

    Member
    January 7, 2020 at 10:49 am in reply to: Is it time to give up Christmas?

    You are not a Grinch or Scrooge. Christmas Eve 2018, I ended up in the hospital. They thought I had pneumonia. As usual, I was supposed to host Christmas dinner for the family. My son, his wife and his three adult sons. Because I was in the hospital, family Christmas fell apart. I was released the 27th and felt fine, thankfully…they were just being causeous. Anyway, we ended up having pizza and wings a couple days later and I really enjoyed it. (so did they) This year, I put up a 3 foot tree in the living room and a 2 1/2 ft tree in the family room; hung cards on the kitchen cabinets and that was it. Mind you, years before IPF, I decorated every room in the house, bathroom, bedrooms, kitchen, everywhere. Not anymore. Don’t have the energy and decorating is not what Christmas is about anyway. I did host Christmas dinner this year but I ordered dinner from Boston Market and added a few favorites to it. Everyone enjoyed it. (Did the same thing for Thanksgiving too.) I think many of us feel we have to do what we always did and it depresses us when we don’t have the energy. As for gifts, we cut back to start with, and what we do give, we mostly order on line. So don’t stress over not decorating. It’s your holiday too, so do what makes YOU happy.

  • burma

    Member
    October 11, 2019 at 9:55 am in reply to: Aloha from Hawaii

    Charlene, so happy for you! And thank you for sharing your adventures and your pictures. You enjoy your dream vacation. You deserve it!!

  • burma

    Member
    July 19, 2019 at 12:11 pm in reply to: Hair thinning: a side effect of Ofev?

    I have been wondering about this. I seemed to have lost quite a bit of hair the last several months. While I was at my last hair appointment, my hair dresser said I was losing my hair, and maybe should have my thyroid tested. I did have it tested and the thyroid is just fine. I mentioned it to my GP and he said it might be a side effect of the OFEV, although, it is not listed as a side effect. Anyone else having a problem with hair loss?