Every Breath You Take

“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!

10 thoughts on “Every Breath You Take”

  2. Ian Cowart says:
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    Ian Cowart's avatar

    I believe in y’all! What an amazing team, especially your husband and your provider at the ALS clinic. Hats of to your hubby for managing things!!

    I get migraines from time to time, and at my worst I get them back to back for a few days so I understand that struggle. I’m also struggling to adjust to my bipap/asv machine so I only slightly understand your struggle with the ventilator but I empathize to the best of my abilities. Sending my crossed fingers and toes, good vibes and prayers to you and your family as you work to get things right!

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    • howilivewithals says:
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      howilivewithals's avatar

      Thanks for your support and compassion! I promise I haven’t forgotten you. I think about you, Samantha, and Luna all the time. The Bipap mask ruined my lower teeth, so I recommend getting a mouth guard from the pharmacy. That may help with your migraines, too, if you grind your teeth because it relieves pressure. Take care!

      Liked by 1 person

  4. Ann Dailey says:
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    Ann Dailey's avatar

    Hello Rachel,
    You and I worked together at Congressional back in the day. You taught with an excitement and a twinkle in your eye. Your passion for reading and writing was contagious and I knew if I was a student, you would have been my favorite teacher. 🙂
    When I read your updates, I’m reminded of the unconditional love Evan and you have for one other. No matter the challenge you are facing, you have each other. You aren’t alone. In fact , you have a whole village of people that you have positively impacted and we are rooting for the two of you. Sending you ALL the love, strength, and positivity.
    Your friend,
    Ann

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  6. Susannah Lints says:
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    Susannah Lints's avatar

    Hi Sending you a warm hug. Sorry you are having a pretty bad time right now. You have survived many things already that have been terrible so I know you are a very very strong and resilient lady. I love the way you continue to write your blog and your voice is clear and bright in the face of these may obstacles . i’ll keep you in my prayers.

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