mary-e-gemmill
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In addition to ILD, also have severe osteoporosis to the point that I recently had a compression fracture of T6/7, causing me to hunch over and severely compromising respiratory capacity. Am on a low dose oxycodone every 6 hours (which I do take) but any exertion causes pulse ox to drop although I do recover.
Had an epidural for the nerve pain from the fracture which has helped (Yay! No pain after 3 months) but also realize the postural problem is a major problem. May be time to move to Hospice from Palliative Care.
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mary-e-gemmill
MemberFebruary 22, 2022 at 3:21 pm in reply to: Wrestling with the End Stage of Pulmonary FibrosisI am in year 2/3 of IDF (formally diagnosed), probably longer with increased shortness of breath, cough, etc. Was going along reasonably well until had some chest discomfort and increased shortness of breath. I also have severe Osteoporosis and have within the past month sustained two compression fractures of L2 and T11. The pain has been incredible! Not sure if I have not compressed another vertebrae and today has been rather rough.
I, too, like to know what to expect -primarily so I can prepare myself and my sons as to what is coming. Have mentioned Hospice to one physician who says I am not there yet. Am on Palliative Care and I suspect have to have a frank discussion with them.
Even if news is not good, better to know and be ready than be caught unawares.
Mary
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I try to do what I can – which is not much. Have just engaged a housecleaning service to come once a month to do the ‘heavy’ cleaning – bathroom, kitchen, vacuuming. I can still do my dishes, put laundry in and fold. But I do find I tend to have piles of clean clothes on the bed instead of putting into a drawer. Am dealing not only with IPF but also vertebral compression fractures which also limits mobility. Ah, we do what we can.