A couple of weeks ago I was up in the middle of the night because I couldn’t sleep. Then Stan came out for a drink. I realized that I was swallowing thin drainage without problem. As Stan was heading back to bed I said, typing, “I am swallowing thin stuff now no problem. Getting all mucus filled with the bipap every night starts a viscous cycle.” What an appropriate typo! Of course I meant vicious but it truly is viscous too! It is strange to have typos when speaking, but there have been some humorous ones. When I type fast I tell people to pick the one misspelled word!
With multiple trips to doctors as well as a helpful Facebook ALS caregiver (wife), I may be closer to a cure from mucus. Finally! I hope.
Just five days after our Bay Area trip to San Francisco with Jonika and Ollie, I had to go back for ALS clinic. Stan’s sister, Terry, Jonika’s mom, offered to join us to help with driving. We left at 5 AM and since we beat all rush hours we arrived with an hour to spare. We decided to hang out by the Bay with a view of the Golden Gate Bridge.
Then I had my painful botox treatment for salivary glands. We kept doses the same while I am trying to get to the bottom of the mucus problem because I don’t want to change too many variables at once.
I had ALS clinic that afternoon. I was able to report a weight gain (a really big yay for ALS patients!). I was able to suction the mucus out of my vocal chords while the respiratory therapist was with me and was finally able to do forced vital capacity without vocal chord involvement (another really big yay for me).
We stayed with cousin Julie again and Terry got to get reacquainted with her after as many years as it had been for Jonika and Andy. She cooked a lovely meal for Stan and Terry and had homemade scones for them at breakfast.
We had fun driving back home on Saturday on Interstate 80 with President’s Day weekend skiers, many of whom seemed to have Chinese New Year hangovers.
Then on Monday night we drove to Vacaville to be closer to San Francisco for an early Tuesday appointment with a UCSF ENT. Again, we were in President’s Day weekend traffic. It was snowing and traffic was moving slowly just past Truckee. Google maps said we could save an hour and a half if we went on Donner Pass Road past Donner Lake. So we took that bypass and avoided the freeway Donner Pass with accidents, slow trucks and heavy traffic. We stayed on that road (HWY 40) almost all the way to Cisco Grove. When we hopped back on I-80 traffic was moving better. It was good we left the night before because we were late for the appointment anyway due to traffic.
The UCSF ENT was kind and helpful but found nothing in my nose or ears or sinuses that could be causing my problem. He did point out that Mucinex is a vasodilator, which could be causing my severe rebound headaches when I am late on a dose.
We returned to Reno Tuesday night. On Wednesday, I was feeling dejected but at least had pretty trees, with a storm coming in, to look at while using my cough assist and suction, which seems to be my life.
Then we got a call from my gastroenterologist that they had a cancellation the next day. And my friend Steph Courdin from the Ambassador program posted on Facebook about a tight turtleneck feeling and when I replied and detailed my situation, I got a reply from a woman named Mary from Florida whose husband had had the same symptoms. I asked her to private message me about what worked for her husband. It turned out that what helped most was a drug that I discontinued in August. I still had some and started taking it right away. It should kick in in about a week.
My gastroenterologist wanted to do a endoscopy, to look at my stomach and esophagus. And for once we got it scheduled quickly, for the following Monday.
The next day, I was feeling more hopeful and my view was brighter too.
My endoscopy showed that my esophagus has been damaged by stomach acid. Two weeks ago my neurologist increased my omneprazole dose to twice a day. That is a good dose for me and my esophagus should heal quickly. Now hoping that the reintroduction of the drug I stopped in August and/or the Omeprozole will ameliorate my mucus problem.