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Myasthenic crisis provides new treatment options; hopeful outcomes

In ICU

I sat in the Admittance Room at KU Med Center biting my nails down to the nub.

For more than 13 years, I’ve dealt with the symptoms of myasthenia gravis, an autoimmune disorder that has impaired my abilities to speak, chew, swallow and breathe. Lately the symptoms have worsened and even activities of daily living have become a chore.

I couldn’t lift my head off the pillow or sit up in bed. Even the seemingly simple act of spoon-feeding my son his morning oatmeal exhausted my hands and wrists.

Something had to change and it had to happen immediately.

For the past several weeks, I’ve been waiting on insurance to approve an outpatient plasmapheresis or plasma exchange. Since learning of my candidacy for the treatment, I’ve been dreaming about the things I could do once I regained my health: read my son a book, kiss my husband properly, hold an actual conversation, go on a run, smile correctly and eat a juicy steak.

Unfortunately, the claim was denied.

In ICU

Catheter for plasmapheresis treatment for myasthenia gravis

However, this new exacerbation of my symptoms meant I was now in crisis and needed to be admitted to the hospital. It was a good news/bad news situation. I would have to spend 7-9 days in the hospital, but I’d finally be able to get the plasmapheresis treatment I needed.

I knew this was going to be difficult for my entire family. Steffen would have to shuffle Alden back and forth for his feedings while managing his care and going to work. And Alden would be without his mother–his primary source of nutrition and comfort since birth.

Despite the hurdles, we decided to go ahead and make it work.

So it’s bad blood out, new “clean” blood in as the non-stop hum of the plasmapheresis machine siphoned my blood through several protruding catheters in my neck.

Today was only my second treatment, and I’ve already seen positive results. My speech is still a bit slurred, but my breathing has improved dramatically. Apparently, they normally intubate people who have a lung capacity as poor as mine.

I’m hopeful that as I continue to improve, this time away from family will not be in vain. A healthier Liz will be a better mother and wife. She’ll have more energy to communicate better, play harder, run longer, laugh harder and love deeper.

Comments 1

  1. Stay strong Liz! Alden will be well cared for and we are all happy to chip in so that you can feel better. God speed!

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