Tips for living with IPF/PF/ILD

[Guest guest]

I am hoping this will help some newbies a little. I'm going to try to start at my beginning and the things I have learned since. Somethings may not work for all but some will be happy to see a different way to do things.First since we first look at out 02 like it is going to eat us alive.. relax it is a lifeline. the cannula you get can be adjusted.Some of us have a problem with the nose prongs being to long.. TRIM them off just a little at a time until it is more comfortable.Your concentrator is loud and creates a lot of heat. So if you have a spare room to put it in do that and crack a window. Also if you use tanks they should be stored in a room that is not to tight. I have mine outside. It is fine except in cold weather. As long as it is protected from the elements. Have extra hoses, connectors ( to attach hoses to cannula) Extra key to open the bottles. (I have several.) and the little rubber and brass washers for your regulator. I keep all these little things in a little bag I call my tool bag.. never leave home without it.Change out your cannula and hoses frequently. some do it weekly. I do it every two to three weeks on the hoses. My cannula probably the same. I wash it in the shower with warm soapy water. (works for me. )GET OUT AND ENJOY YOUR LIFE.. It can be done just a little differently. Showering and hair washing can really be a challenge unless you have a few helpers. A shower chair is almost a must, sit relax an enjoy the soothing warm water. Try not to use to hot of water if humidity is a problem for you. Wash your hair then rest your arms while the shower rinses it. I also have a wonderful back brush.It is heaven. Wrap a towel around your head and slip on a terry robe. sit for a few min. catch up to yourself them you are going to feel so good Eat small meals it helps the full tunny feeling after.I want to add more here but must go to bake a few cakes with Amber for our PJ party.. lol.I hope these little things help some.Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up.