41: Advocate

Whelp, I get to use the title word, Advocate, as both a noun (One who promotes the interests of another person or organization) and a verb (I’m advocating for myself really hard here!)

Verb: As mentioned in the last post, my surgery for the Inspire device was denied by my insurance. Formally and officially. In the denial they say they’d be happy to pay if only I had proof that I had failed at CPAP and with an oral appliance. So I spent the bulk of yesterday (along with a bunch of yard work) tracking down the providers of my previous CPAP attempts. Of course, neither doctor (one of whom is actually at the same hospital as I’m using for the surgery) has any compliance data. That’s because, as I’ve alluded to, neither doctor ever followed up with me. I did find the company’s that shipped me the devices though, and was able to be in contact with both of them. They each sent me billing statements showing that I had received the devices and then returned them. One of them actually had some compliance data too! Insurance wants three months of attempts. I can give them two days. That’s it. The big problem is that they shipped the device for attempt number two on June 25. That was the same day I had my PET scan, which I got the results of on July 5. That means I KNEW on July 5, probably right around the time I was beginning to attempt to use the machine - which I really didn’t want. I was officially diagnosed by the neurologist on July 8.

So, now I was up all night stressing, angry, and depressed AND trying to figure out how to get comfortable with an elephant trunk and an abnormal airflow. It did not work. I’d try for an hour or two, and then get caught up inside my head and be unable to sleep or even think normally. (Actually, if you asked Wendy, she’d say normal and inside my head have never coexisted in any way!) I tried. I really did. But, I was a mess, and I just couldn’t make it happen. So I sent the unit back. End of story - or so I thought…

Amongst the frustrating moments during this process were the fact that the pulmonologist who prescribed the CPAP (and the sleep studies) then refused to meet with me because he was not a “qualified sleep pulmonologist”. So I had, as mentioned, no follow up - in fact the hospital I did the sleep study at was non “in network” for the sleep pulmonology department, so I couldn’t get anyone to see me to discuss the sleep study or the resulting prescription of the CPAP machine which just showed up at my house one day. I had no doctor to complain to, and thus there were no records kept of my attempts - or so I thought…

In order for the new sleep pulmonologist to see me, I had to send records of my sleep studies. Let me repeat that. I. Had. To. Send. Records of my sleep studies. Which were not in my on-line chart. So, I had to call doctor’s offices, one of which I hadn’t been to in 4 years, and another of which I had left because of a distinct lack of service to ask if they had records. They, of course, didn’t. I mean… Why would a doctor’s office, which prescribed a CPAP machine, have a record of it, right? They both were able to tell me the name of the company that actually shipped the unit to me though, as I mentioned, and so I was able to get some proof. We’ll see if that helps at all. I know I’ve done all I can. Now it’s up to the “professionals”. So, I used the online messaging app to try to send all the acquired info to my surgeon in hopes that he could use it to convince the insurance company to cover my device and surgery. (This is all after I called the woman who had been so helpful over the past week, left a message, and heard bupkis in return.). The app bombed. It would not accept my PDF attachments. So I wrote another message explaining all I had done and asked for an email address I could send the documents to. Still bupkis. So, I’m going to research another clinic that might do the operation. I’m not sure I have much choice.

Noun: Yesterday I had the opportunity to perform my first speaking engagement as an Early Stage Advocate (local) for the Alzheimer’s Organization. Behold the flyer:

And behold the speaking (apologies for the poor audio quality (lawn mowing outside the window was occurring in the early stages of the clip). Subs have been added to make it possible to understand what was being said):

I had a great time doing it, and I think it was well received. The information imparted by Meghan was informative, and I learned a lot - and was even able to incorporate some of it into my talk. In another of the grand “small world” moments that seem to permeate everyday existence, after the talk was over, an attendee came over to us to show her wallet off. Not, unfortunately, to give us tons of money, but to point out that her friend had gifted the wallet to her, and it was from (and proudly embossed with the word) Madaba, which she recognized from my intro. Madaba, of course, is the town that Wendy and I lived in during our sojourn in Jordan as members of the founding team at King's Academy from late 2006 through 2009.

So now, I’m on my way to the big city (not the REAL big city, but another largish metropolitan area. (Those of us actually FROM the REAL big city understand my clarification. There is only ONE real BIG city, and it has been gentrified into a bland paste by now, sadly) to meet with my second opinion (and hopefully new) neurologist. I’ve got all my notes, scans and other good stuff packed up and ready to show off. I’m hopeful that I’ve found a care partner that is on the same wavelength (or at least approximately) as I am.

No music to report on this week.

Back at it soon, and a (hopefully) positive report from my neuro visit to come!

Thanks for reading, and remember to support the #Walk2EndAlz and work to #ENDALZ by donating in honor of team ALZblog here.

Dy