• Advocating for Your Healthcare and Oxygen Needs

    Posted by Mark Koziol on July 7, 2020 at 6:00 pm

    Periodically, members of our forums comment or ask questions about  supplemental oxygen. It is unfortunate that everyone doesn’t receive proper medical care, or a standardized approach to receiving oxygen. Receiving supplemental 02 should be discussed at the first sign of scarring. I am lucky to have been treated by a world class hospital and research institution, and was connected with a social worker the first day I began to receive medical care for my IPF diagnosis. Future supplemental oxygen considerations were discussed with my physician and social worker. When I became ill and hospitalized because of an exacerbation and RSV; my oxygen needs drastically increased. The social worker completed all of the necessary paperwork and summoned a representative from a national oxygen supplier. My social worker and oxygen supply representative contacted my insurance company and when I was discharged, the oxygen supply company truck was waiting for me, which was at 9 p.m.

    I often hear stories on this forum and several other online PF groups where patients must jump through loopholes in order to be provided with supplemental oxygen. This should be a right and not a privilege. A person should not have to suffer to breathe because their oxygen needs have not been met. I encourage everyone to be their own advocate for their healthcare.

    Part of being an advocate for your healthcare is being aware of your medical condition. You must know your body and how it reacts to certain situations. One of the first purchases I made after my diagnosis was an oximeter. We need to be aware of our oxygen saturation and heart rate at all times. I still use mine despite having a successful lung transplant. Since I had a single lung transplant and am working with one lung; I feel more comfortable when I monitor my oxygen saturation, especially when  I am exerting myself.

    I was given several options of oxygen supply companies who would be available to come to my house upon discharge. Several were companies having locations in all states and several who were a local entity. I chose a national company because I wanted to travel and my needs could be met while traveling to different states. I previously wrote a column titled; “The Time I Took a Road Trip with My Oxygen Tanks”. In the column, I talk about a trip I took after my IPF diagnosis.

    I find the Pulmonary Fibrosis Foundation an excellent resource for PF patients. The supplemental oxygen section has valuable information for persons suffering with PF and on supplemental oxygen. Please click on the links below to access information on supplemental oxygen.

    Oxygen Basics Booklet

    Quick Start Guide

    Traveling with Oxygen

    I am interested how many forum members have had difficulty obtaining supplemental oxygen.

    Does your medical provider offer you wrap around services to assist you in acquiring supplemental oxygen?

    Have you been able to travel either by air or ground using supplemental oxygen?

    Mark Koziol replied 3 years, 9 months ago 2 Members · 2 Replies
  • 2 Replies
  • Mary Echberg

    July 7, 2020 at 11:38 pm

    Hi @mark-koziol, I too use an oximeter and all my readings (pre oxygen) are below 90.  I generally only use oxygen via concentrator, at night but, on occasions I use it when I feel breathless. Good luck. Mary

  • Mark Koziol

    July 8, 2020 at 2:01 pm

    Hello Mary, thank you for sharing your experience. If possible try to keep your o2 at 94 or above I think you will have more energy to perform your daily activities. Take care, Mark.

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