[susan-ferreira-atencio]

@bakerbob

Hello Bob….I am very interested in your post of Jan 23 mentioning the episode with the autoimmune rare blood disease.    I was diagnosed this past October with IPF ….my cough started ten years ago……with no other symptoms

until the shortness of breath started about a year ago.    I was also diagnosed with a rare blood disorder…aplastic anemia….. also about ten years ago.   It was severe but I am now in remission for that although I still have it.     I believe that is what started my IPF…..Of course it can not be proven hence the IPF.
I seem to be moving very quickly after my diagnosis….O2  almost all the time…Breathing has become very difficult because I often breathe thru my mouth if I am having trouble and therefore not getting the O2…I have started the Ofev about  two weeks ago……I was afraid of all the side effects so I postponed until after the holidays .   To my surprise  I have had no side effects other than an occasional mild headache, an occasional feeling of nausea and dizziness that only lasts moments.
Mostly I would like to know about that rare autoimmune blood disorder……do you have it still……?

Thank you

Susan

 

 

 

 

[susan-ferreira-atencio]

Hello….your information is very useful for me.
I am 75, diagnosed 18 months ago with  Pulmonary Fibrosis ( although I do believe I have had it MANY years  longer) and was recently diagnosed with an additional disease, Pulmonary Hypertension,   I understand what you mean about needing to plan how many tanks will be needed for any type of trip…..mostly doctor or doctor related visits.   I do not go shopping or visiting .   I consider myself house bound and close to ‘sitting or lying down ‘ bound….not quite bedridden  .   I can do very little around the house unless I am seated.
You seem to have devised a good way to navigate your house with the 50 and 25 foot tubing…..and the 2 machines.   I am going to reread your post to understand better what you are doing to make like easier.   I was doing very 6 months ago…..was able to drive, do my own grocery shopping etc.    At that time I was able to use the portable oxygenator and a small tank of 02…. I was only using 2…. sometimes 3, but still needed it 24/7.   Then I was rushed to hospital for a lengthy stay ( 2 actually) and have been on the very high lpm.   10 and 12 lpm. My lifestyle has changed considerably.    For sure everyone’s journey with PF is different.

 

[susan-ferreira-atencio]

Love your attitude !

[susan-ferreira-atencio]

Exactly!