8.22.22 August Clinic Update

Do you ever tell people something in your head but forget to hit send? I’ve always been at a hefty level of insanity, but I swear it’s been worse since I had covid in January. I have MANY blog posts to purge from my head and I plan to get those out to you over the upcoming weeks.

Today we’re going to recap my clinic appointment on August 5th. Cindy the Great drove me to Dallas and we celebrated surviving the drive, clinic, and Dallas with sushi.

At Mays appointment the clinic had gotten a new respiratory therapy company. I did the normal tests and my FVC was in the 60s (out of 100). Terrifying but they assured me that in the few clinics they had attended the numbers were low for everyone. Ever the competitor, I was ready to blow with the best of them. Back at 84%, which is my normal, a lot of my breathing worries have been put back on the shelf. As y’all know, or don’t know and now you do know, I absolutely refuse to be trached so this number decreasing is my cue to make arrangements. Especially when it comes to having a feeding tube placed because most surgeons won’t do the procedure if your FVC is below 50%. Not that I’m giving up food any time soon or ever, but I am remaining diligent about this one intervention.

If you recall, 18ish months ago I was De-Ported due to sepsis symptoms which stopped Radicava Ridiculousness. Now there is an oral form of the medication so the party continues at $14k per 14 day cycle. Honestly I’m just thankful insurance approved it and looking forward to starting it again tomorrow.

Chins up! My neck has been bugging me for years and Dr. Heitzman even called me out on my drooping next this time last year. Stubborn for no logical reason, I’ve held out on a neck brace but it’s bad enough that I can’t continue to ignore. Thankfully ALS Texas has an Equipment Loan Program which allows me to borrow this fun new accessory for free.

Now for the best, most exhilarating part of the visit. We meet in an infusion suite and sign away our confidentiality so it’s just one big group session. It should be no surprise to y’all that I enjoy meeting people and socializing so this really is the best case scenario for me when attending hours long doctor appointments. When we rolled in the room was full and bustling with conversations so I jumped right into the action. There was a couple by the door that I’d never met before but that’s normal. No more had I made it to my assigned area did Tom – my equipment guy – say, these people say they know you. I roll over to my new to me friends to learn that the wife, a two time cancer survivor, had just been diagnosed in June, that this was their first clinic, that they are from Huckabay (30 mins from Hico), and that a few months ago they had seen me and Mah at a Mexican food place and anonymously bought our lunch. She told me about writing to her friend about seeing me walk into the restaurant with an ALS shirt on and feeling an immediate connection.

So, I’m excited to introduce y’all to my new pALS and small town, Mexican food loving friends: Joanie and Stephen Peterson. I love when God is obvious.

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