Living Well with a Bad Diagnosis - Lung Disease

Tuesday, January 19, 2016

Big Headaches

Rehab class this morning! Sherman! We plan to meet early, as usual, for a good chat. Apparently, during a doctor's visit, he either didn't hear or he didn't understand the implications of what the doctors was saying when he asked Sherman's daughter if they had contacted hospice yet.


We had an amazing experience with the local hospice before my aunt died. No more doctor appointments, no more having to deal with ordering medications, no more worrying about her care, we were just able to enjoy being with her. Spending time with her.

Mom and I were with her just after she died and waited for a hospice doctor to arrive to declare her dead. A young female doctor came through the night on her motorcycle and was extremely kind, thoughtful and helpful.

Through the grapevine, I realized Sherman's daughter doesn't understand what hospice entails. It will offer relief to the family during very stressful times.

I will not bring up hospice with Sherman but if he talks about it, I will explain what it is all about and our personal experience with it.

Portable oxygen systems. I tried to order one from a company I had rent from in the past. Well, no more. They no longer will rent to me if I get my oxygen from another company. Now what?!? I knew my company was a pain when ordering anything like this but...I phoned. The costs were high! $250 a week plus $35.00 for every additional day. I used to rent one for $350/month. I would need to fill out paperwork, have Dr. K. sign paperwork and get it back to them before Monday. They didn't understand that I just can't drive into town and have the doctor sign it. It would require a drive into the city and the form being left at a desk. There would be no guarantee that she would ever see it. They said they would FAX it to her. But, I needed both forms to be sent back to them together. That would be impossible. We both will FAX back, but no, that just wouldn't work for them.

But wait. It gets worse. They mentioned that the only POS they offer for rental was not appropriate for sleeping. WHAT? Isn't that why people rent one so they can bring it along on airplanes and trips instead of having to have concentrator sent to numerous hotels?

I was beginning to worry. We are only renting this to provide oxygen for just one overnight on our trip to Seattle. We were going to take two days, instead of one, to drive the 800 miles for the first time ever.

She also suggested we have a concentrator waiting for us in the Seattle hotel. So, I had to call Hilton and make the reservation. But, somehow I got connected to another department after I had my  confirmation number. I spent the next 10-minutes explaining to some guy, then his boss, that we were not interested in a nice, almost free vacation in Las Vegas for a week, if only we listened to a sales pitch for two hours while we were there. They finally got that I was not interested. Period.

Then, I phoned the oxygen company to order the concentrator. This was where I got really nervous. She told me that even though we are leaving Seattle on a Friday, the oxygen company would not be able to pick up the concentrator from the hotel until the follow Wednesday. I would be responsible for the equipment. WHAT? If it disappeared, my credit card would be hit for its cost. How much? She said $1000 to $2000. I asked if the driver notifies the hotel about the pickup date when they drop off the concentrator? Nope. And, I was responsible for informing the hotel of the pickup date. I told her that I was not too concern about ordering this one concentrator but when I order 15 of them on our cross country, that could potentially expose me to $30,000 of losses.

Immediately, I phoned the hotel where we are staying to notify them of the arrival dates of the concentrator and how sorry I was that it was not able to be picked up for five days after we leave. The woman at the desk was marvelous and told me that she would put a note on the reservation and make sure that it is protected after we leave. She told me that they have never had a problem.

Michael arrived home about this time. I explained all of the above and we made a major decision: we would cancel the order for the portable oxygen system and drive the entire 800 miles in one day. It will be exhausting, he will stay low and have lots of sleep for a few days before the drive and we will just plow through. Now, if only we could count on the weather to cooperate while we drive the major pass through the mountains near the Oregon boarder!

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