Salt in My Soul by Mallory Smith

Author:Mallory Smith
Language: eng
Format: epub
Publisher: Random House Publishing Group
Published: 2019-03-12T04:00:00+00:00

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I still can’t really process what happened. The constant upheaval of getting admitted, then adapting to hospital life, then getting released is giving me whiplash. My life feels like a disorganized shit show. I think I need a motivational life coach to help me get my affairs in order: to help me get organized, help me finish the book project, help me toward my goal of financial independence, etc. Those are lofty goals, though. For right now, I just need to stay out of the hospital for longer than a week.

But happily I’m writing this from home, having had a super fun weekend. Natasha is in town. We went to the beach Saturday and later played games with the usual suspects (chill night), and Sunday spent all day at the beach again. Being back at my apartment felt so familiar and so foreign at the same time. Weird. It will take getting used to, for sure, but I’m so excited to be back there.

2/20/16

It’s been eighteen days that I’ve been out of the hospital. Eighteen days!! That’s the longest time I’ve spent out of the hospital since October. Granted I’m still on round-the-clock home IVs, but I’m out living in the world.

And I’m moving to San Francisco. I went to Stanford on the ninth and saw Dr. Mohabir on the tenth, and he worked hard to convince me that I needed to be under his care again. Some of what we discussed:

Hemoptysis—he says it’s deadly, seen too many patients die from it, wants to make getting control of it a priority

Ataluren—his insistence I go off it

My thinking—he says not to focus on long-term lung function but instead, the possibility that I have cepacia syndrome and how to treat

Scheduling—he wants me in clinic every one to two weeks for six months to get me stable and back on track

L.A.—he says flying/driving up to see him every two weeks not workable; that I need to move back up

Marinol—he’s open to starting medical marijuana pills to decrease nausea/pain and increase appetite

Nausea/vomiting—need to get that in check

UCLA regimen—will continue for now minus ataluren

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