Glenda Rouland
Forum Replies Created
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I am having same problem DLCO has gone down to 34 from 49 which I had for 3 years. So much more trouble breathing now with no change in ct or X-ray Just evaluated for list at Vanderbilt and no PH. Don’t get what’s going on
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I take Esbriet and have developed primoral dermatitis Never ever had sensitive skin or rashes before. Also my skin very dry
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I am attending the Summit
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I have noticed that I sweat a lot more with physical activity. Never used to. Dr said because having to work to breathe so everything working harder. I also go to UAB and being evaluated at Vanderbilt
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This sounds like my story. Got diagnosed in 2015 but cray shied in 2013 but dr never got it. My DLCO has been stable starting at 50 always testing between 48-50 which is stable. In May of this year it was in the low 40’s and recently it was 34. Concerning the drop wondering if I had exerbation. My FVC has stayed low 70’s this year I started 86 in 2015 and went to 70’s mostly last year. I am being evaluated for transplant
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There are no portables to go to 5l continuous. I have sequal eclipse that will go to 3 continuous and 9 setting for pulse. The setting numbers are not liters
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Yes all the time sometimes when I lay down keep doing until through is sore. Bought Grossan nasal irrigator on amazon at dr advice makes a huge difference.
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I have the better breathers backpack ordered on amazon. It has pockets and pouches to carry everything I use in my purse
when I use my wheeled sequal concentrator I use a small computer bag over the handle and pull it.
I am on 4 lpm soo do use tanks locally in my backpack .
i also got an iPhone case that has a door on back to hold license and debit card which is a great organizer
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I always walk as fast as I can on 6 minute walk test so I have an idea of oxygen I need when walking fast. Last time I did 1568 feet. I keep track of the feet I walk alo. Don’t know why they don’t do a stair walking test for oxygen
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Charlene and Bob I am living in Birmingham AL. Been here 18 years originally from Michigan and hubby from IL. I was diagnosed in with IPF in oct 2015 but had in 2013 dr never saw X-ray. I went on oxygen last Jan and have gone from 2L to last 3 months 4L. I go to UAB which is a center of excellence so I am lucky there although my doctor has left to go to Vanderbilt so having another in group.
I am an Ambassador for the pulmonary fibrosis foundation so doing some travel for them raising awareness. Been married 47 years 2 grown children and 2 precious granddaughters 8 and 11 so I am blessed best wishes for you all for a great happy healthy New Year
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Did look up muscle and joint pain is a possible side effect. I will call manufacturer
thanks
Charlene and Bob
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Had been on Esbriet for 2.5 years had a decline so doctor switched me to Ofev. Been taking 2 months getting bad joint pain and muscle pain. Anyone else experience and did it go away after a bit