Re: Tips for living with IPF/PF/ILD

[Guest guest]

Peggy, you're a peach!

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Friday, June 19, 2009 10:56:23 AMSubject: Tips for living with IPF/PF/ILDI 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, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

[Guest guest]

i did try the terry cloth robe per suggestion from board

didn't like it

i use two towels instead

and sit down on the nearest seat (the throne) to get dried

standing up to dry my legs creates sob or dizzyness

don't need a shower seat yet, but sometimes will bring in a plastic step stool to sit on when i am exhausted or just not feeling well

observe fancy wheel chairs and scooters -- just in case i need one down the road -- hopefully the road will be a very long one

the idea of the scooter sounds like fun, zipping in and out of lanes, going beep, beep or toot, toot

watch out! OD driver coming!

i wonder if you have to pass a driving test to ride a scooter??? -- lol

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Tips for living with IPF/PF/ILDTo: Breathe-Support Date: Friday, June 19, 2009, 10:56 AM

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, Florida

Worry looks around,

Sorry looks back,

Faith looks up.