Living Well with a Bad Diagnosis - Lung Disease

Saturday, July 16, 2016

Portable Oxygen System

The attorney is back in my life for a short stay. He helped me gain approval to buy an Eclipse portable oxygen system from a newly formed and tightly held out-of-state family trust. After I tried to rent one in February before we drove to Seattle, I vowed to buy one. It was impossible. Apria, my oxygen supplier, offered one for rental ($350.00 for two weeks) but they didn't recommend it for sleeping. Duh. So, I would have to still give them two weeks notice to have a concentrator waiting for me at our destination on the road. That was difficult. We were going to take the 800 mile trip in two days but, because of a possible snowstorm in mountains, we would not be able to decide the route until a couple days before we left, so we could not give Apria two weeks notice for the concentrator at a hotel for the night on the road. We ended up driving the entire way in one day. It was tough. We were exhausted and I did get sick. It was just too much.

Life happens and sometimes one doesn't get a two week notice for a funeral, as an example. This will give us so much more freedom. We can take overnight trips on a whim. Feel like a museum run to LA? Hop in the car.

This all fell into place when I was talking about buying one with Kathy at the rehab class. She had a new Eclipse she bought in March but hated it. Too big. She does not have a restrictive lung disease so she doesn't need the continuous flow, which is so important to me. This is the exact system I needed. Through her husband's connections, she bought extra batteries and they got a really good deal.

Early Monday morning, I am meeting her at her house on the other side of the pass, we will make the exchange of a check for the Eclipse and a paid invoice so I can be reimbursed by the trust.

This weekend, I need to gather financial data, request a letter from Dr. K. to the trust administrators describing my condition and prognosis, three years of income taxes and proof of Michael's Social Security income.

People don't remember that most restrictive lung diseases happen when the person is in their early 50s, the highest earning years. Suddenly, no income. No income to increase Social Security income for later in life. No income to invest in retirement funds. I might be able to get a bit of money each month because of this. It is not a lot but it would help so much since Michael retired.

I will draft a letter to the trust administrators and a list of documents I plan to include and run it by my attorney on Monday morning. Sometimes, I tend to give too much information and he reminds me to give only what they require. He is a good lawyer!

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