“Every breath you take just proves how blessed you really are.” – John Landry

“This is Rachel Doboga’s ventilator just after starting the nebulizer, and her oxygen is dropping to 95, now 93,” Evan says, holding his phone up to film my ventilator readings.

He stops filming and turns off the nebulizer.

“My head is on fire!” I say.

“I’m sure,” Evan replies. “Your oxygen just dropped to 89. How are you feeling? Are you catching your breath?”

I blink, my signal for “yes” and “good.”

“Hopefully this video will help the pulmonologist,” he says, putting the phone down.

I am having daily migraines because of the nebulizer, a machine that pumps medicine into my lungs. Tuesday morning I just couldn’t handle the feeling of suffocating. I felt like I was dying and at the same time I wanted someone to end the suffering and kill me. Fortunately, Evan and my nurse figured out that this was not just anxiety, that something really was wrong and I wasn’t getting enough air. Times like these make me think of Lou Gehrig and all those who came before me. How horribly they must have suffered being deprived of oxygen.

I’m in a classic Catch 22 situation. I need the medications the nebulizer delivers to my lungs to breathe, but the nebulizer literally takes my breath away. Evan made an adjustment on the machine that helped, but I still get short of breath and have migraines. Today we had to stop because my oxygen dropped to 92. Now we have to solve the mystery of why this is happening. We have tried every possible combination of 2 different nebulizers with 2 different ventilators, and no matter what machines we use, my oxygen drops.

In the meantime, I have to ration my imitrex, a drug that helps with migraine pain, because I only get 12 pills a month. Originally it was 9, but my provider at the ALS clinic fought insurance to get me more. She’s an amazing advocate.

Lots happening. My ventilator was dying so I got a new one and a backup. However, the settings were wrong so the machine forced me to hyperventilate and I passed out. While I was out, Evan had a video conference with my pulmonologist. Now we’re slowly adjusting the ventilator to get me to a healthy place. We have 3 days left of titration. My husband is amazing. He’s managing the process.

I do have some good news. My provider and I discussed the amount of meds I’ve been stacking to get through trach changes – the number is 5 – and decided it would be best if I could just have 2 medications – a painkiller and something for anxiety. She wrote me a prescription for a painkiller, but I asked her to give me just 4 pills. That will last me the rest of the year for trach changes. I told her I don’t feel comfortable having more than that in the house.

I have great support, but I could really use all the prayers, crossed fingers, and good vibes I can get!