Well not sure how to start, hello to all on the forum. I was diagnosed with IPF in 2016, in June of 2017 I had a bronchoscopy done and it did not go well, went into the surgery only needing 2 liters of oxygen at night, post-surgery needing 8L’s all the time. Before the bronchoscopy I would sometimes carry M6 tank with a pulse regulator as one of my clients requires me to climb 80 stairs to see him, old building.
When I was in the hospital recovering from the bronchoscopy, was visited by a social worker who was going to get me set up go home and gave me some options for medical equipment companies. In talking with a social worker asked if I could get setup to go back to work, as I am self-employed and work in the IT industry. It was told that the amount of oxygen I was on, that I cannot go back to work and should to go on disability.
After calling several medical equipment companies. They wanted to charge me $200 a month on a five-year contract for 10 L home concentrator. I asked about liquid oxygen and they said insurance wouldn’t cover it.
So, I decided to go a different route, called oxygen wholesale company’s and setup account to purchase wholesale, this saved 90% from the cost if purchased from a DME (Durable Medical Equipment), bought my concentrators on craigslist have never paid more than $250 for a single unit . Purchased all the testing equipment on eBay or directly from China. Purchase all the hoses, cannulas, humidifiers all online. Nobody ever asked me for prescription.
I will be on a transplant list shortly, have one last test next week. My current O2 requirements 10-14L at rest and 14-20L on the go. I have a backpack (still working on the design) that allows me to carry 2-Companion-T1000 with a max output of 30L if needed. Currently running on 2-10L concentrators at home set at 14L, have second pair of 10L concentrators in basement next to treadmill and am using both when on the treadmill. Using high flow cannulas from the first floor and non-rebreather with the basement setup. In the car 2-46L Liquid in my van, just using 1 tank to breath on for now and portable Inogen G3 for a boost 4L pulse, the second tank is to fill the portables. I currently have a O2 Sat monitor that monitors my levels both day and night, it is set to alert me when I go below 88%.
I have searched the internet and have engaged with many different Lung or IPF meetings and have yet to find anyone that has acquired O2 like I have. I just turned 60 and still working everyday even with the increase 02 usage. I enjoy what I do and have no plans to retire. Any Idea’s or suggestions would be greatly appreciated.