Re: practical ideas for pulmonary fibrosis

[Guest guest]

great tips! Thanks!

Subject: practical ideas for pulmonary fibrosisTo: breathe-support Date: Monday, August 31, 2009, 1:55 PM

this is a list of ideas that i have collected and saved in word perfect

some of them have the names of the original author, some don't

there are soo many, too many, newbies, that i think you will appreciate some of the tips

in the last month i spoke to 2 people who didn't know you can wear the cannula in the shower -- yes the plastic tube can get wet --

Practical Solutions Beth-Moderator

Fibrotic NSIP 06/06 UCTD 06/08

Thanks for that and I do remember that you and I were diagnosed in the same year. The shower chair was and is a big help. Taking the O2 in the shower with me was another thing that actually enabled me to take a shower longer than about 60 seconds. Lots of us have difficulty with our SATS dropping in the shower, whether it's due to the high humidity or lots of upper body movement, whatever it is, I actually turn my O2 UP while I'm in the shower so that I can breathe comfortably while I'm in there.

Some of the other little things I've learned along the way....

Take naps! Since many of us don't sleep well at night so grab sleep when you can. Sometimes I just need 15 or 20 minutes to recharge my batteries. We all get fatigued more easily than the average healthy person. We should not consistently push ourselves beyond our limits.

In rehab I learned that people with lung disease use different muscles to breathe than people without lung disease. We use muscles in our shoulders, upper back and even our upper arms without even realizing it. This is because our diaphragms and intercostal muscles (those are the ones between our ribs) become over used and tired from our constant struggle to get enough air into our lungs. Because of this any other activity that involves using our upper body muscles will cause us to become short of breath. Washing my hair, folding laundry, putting groceries away can all be more strenuous than I expect and I may need more O2 to complete these seemingly simple tasks.

Someone, it may have been Zena or May suggested breaking tasks into 15 minute increments and taking breaks after 15 minutes or so. This "15 minute rule" has been helpful to me. I'm one that tends to push myself too hard so forcing myself to do things in short bursts with breaks in between actually allows me to accomplis more than trying to do something in one long marathon.

I'm sure others will have more tips and maybe we can post a 'Practical solutions" type document in the file area of the website with all our collected tips!

More practical solutions from Sherry :

As for rehab, I still do 40 minutes 5 or 6 (try for 6) times per week.

I do 2 mph using 10 liters continuous oxygen.

I also lift 3 lb hand weights at least three times per week.

hope this helps some of you newcomers & gives you incentive to take very good care of yourself.

Exercise, stay away from large crowds & small children,

don't SHAKE hands (bump elbows instead),

DO NOT take any herbal medicine! It is not FDA regulated & you don't know what it might contain! Doctors have told me this more than once.

Use hand sanitizer liberally.

Oh, last thing, I use 1 1/2 liters sleeping & up to 15 liters (could use even more at times) when doing active things. Why the extreme variation, even the doctor doesn't know. Perhaps the good exercise routine I've always done for years now????

I am just now going to try a shower chair. Why I have not done that before I don't know, as I need 15 liters when showering!

Sue Dassel:

One tip I offer when showering – when you get out of the shower, put on a terry cloth robe and slippers – it's easier than having to use the towel to dry off.

Bruce Moreland:

"Have Oxygen, Will Travel"

"Disease = bad, Oxygen = good"

R (52) Sarcoid/PF 3/2006 Carlsbad, California:

I bought a small clip ( the one they use for name tags) at the drugstore and I clip the hose to my shirt. I clip it at waist level. It takes the pressure off of my ears and if I accidently step on the hose ( or one of my grandkids purposely does!) it doesn't hurt so much. Hope this helpsPeggy Florida, IPF/UIP 2004:

Sue, I understand. I make a big loop around my neck so if anything catches it won't pull on my ears so much.

I also put the tubing under my shirt while cooking or messing around in the kitchen. I don't have a problem with

my glasses. " I hate this disease and all the stuff it puts us through." Just ain't right.

Joyce Rosenberg

instead of a terry robe, i prefer 2 bathtowels, wrap myself in one and sit down on the closed toilet and use the other one to dry the rest of me

sit down when drying your legs -- bending over can make you SOB -- short of breath

taking clothing out of the front loading dryer -- I sit on the floor and use a ruler for the stuff in the back that is hard to reach

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

Donate Life Listed 1/09 Inactive 4/09

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