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Diagnosed With Pulmonary Fibrosis

Oct 31, 2009 - 2 comments

pulmonary fibrosis

It has been a while since i have been here. The surgery for the TC's (which they call them Meningeal Cysts now in my case) was scheduled for Aug 20th of this year. I decided not to have surgery because I just did not feel healthy enough even though my Dr gave clearance for me to have the surgery.

Not long following this decision I began getting sick. Having COPD and getting sick causes alarm for me! Because I get sicker than those who do not have lung issues. After a few emergency trips and my oxygen being low the last trip to the ER they admitted me for 24 hours to watch me and see if I needed to be there. They kept me 6 days! I was on antibiotics,nebulizer treatments and alot of Prednisone!! From there they sent me home with oxygen, I have been on oxygen24/7 since!This has been for several weeks.I am on 3ltrs. I was on 2 ltrs but that was not enough. I have a nurse who comes 2 times a week and an aide who comes 2 times to asst me with baths along with a provider to help me with the house and showers the other days.

I see the Pulmonologist for the first time Nov. 9.They have diagnosed me with having Pulmonary Fibrosis and possible Emphysema. I have COPD. They were saying I had CHF (congestive heart failure) but they ruled that out after my echocardiogram.

They have scheduled me also for a sleep study in Nov. They believe I may have sleep apnea.

So this is whats been happening with me. My next journal I will talk more about my emotions around all this and getting use to the changes and the help I need.

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by Tinychick, Oct 31, 2009
I have recently been diagnosed with Idiolpathic Pulmonary Fibrosis but had a bad heart attach two and a half years ago and damaged my heart quite a but.  I am not a candidate for Prednisone because of the heart and right now am just very frustrated as I can't seen to walk very far without getting really short of breath.  Sitting or just being at home my oxygen level is pretty good (91-94).  I am fortunate enough to work out of my home, but feel I am becoming a recluse.  I'm not on oxygen yet and am afraid to go there.  I am currently using a Volumizer hoping to help my lung capacity.  My husband and I want to semi-retire and travel but I am concerned about the travelling.  I am glad to have found someone who unfortunately is experiencing the same thing as myself.

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by virtualangel, Oct 31, 2009
Well its nice to meet you. I am sorry meeting one another had to be in this way but yes it feels good to have someone who goes through what you do and can be supportive. My name is Donna. Happy Halloween!

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