Wednesday |
Apr 18 2012 |
It is pretty hard to believe that time has whizzed by as quickly as it has; it seems like only last week that my husband, Richie C, was suddenly hospitalized in connection with breathing difficultiesthat has been worsening over a period of months. When I first heard the diagnosis of idiopathic pulmonary fibrosis, I was unsure as to what it was. I had heard of cystic fibrosis and knew that it was a disease that was present from childhood--while IPF is not exactly like CF, it can also be a fatal disease.
I did a lot of online research and was disheartened to see how bleak the long-term prognosis for IPF really is. The disease progresses at different rates in different patients--sometimes advancing at an alarmingly fast pace, as was the case with my husband.
My hope in joining this forum is to provide support and/or advice to members who have been diagnosed with IPF, or have with loved ones or friends afflicted with it. I am not a medical professional, so my "advice" would be relegated to truthful accounts of what I experienced in connection with my husband's fight with IPF and the type of care that I provided for him during his illness.
One of the scariest parts of IPF is that a good deal associated with the disease is still shrouded in mystery. Doctors have trouble predicting the rate of progression of the disease (how much time a patient has until he/she is faced with end-of-life decisions) since they typically cannot tell how long the patient has had the disease. This lack of forthcoming info about what to expect, timelines, etc. can be unsettling and unnerving. ONe never knows what to expect; IPF is not only a devastating disease, it is one that can make a patient and his/her loved ones feel isolated, frightened and very alone.
Please feel free to ask questions -- I have walked the walk and would be happy to share what I know and have observed with people battling the same disease.
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