Living with Pulmonary Fibrosis

My husband Bill is in the late stages of pulmonary fibrosis, a lung disease with no known cure. This is our story of our journey through the disease and how it has affected one family's life.

Friday, November 18, 2005

We Have Oxygen!


Today Bill was qualified to receive oxygen. We had to be pro-active and get a copy of the MediCare guidelines and fax them to the doctor's office to get them to test him. According to the guidelines, he can qualify for oxygen if his blood oxygen level drops when he is ambulating (walking or exercising). They then place oxygen on him and if his blood oxygen level increases, then it becomes obvious he needs help. When I told the nurse about this guideline, she indicated that she knew about it but had never offered it as as solution; she had focused only on his resting blood oxygen level.

A physical therapist visited twice but said she couldn't work with someone who couldn't breathe, so she hasn't returned. Her report helped sway the nurse to the fact that we are not just complaining - there really is a problem.

Once qualified, the nurse (not the one we usually see, but two more sympathetic and thorough ones) faxed a request to an oxygen supply company. The man arrived within 2 hours of the time we left the doctor's office. Bill now has an oxygen generator with a 50 foot hose and 4 portable tanks that he can carry on his shoulder when he goes out. He noticed an immediate difference in how he feels. Perhaps this will help him to not be so tired all the time.

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