Let's Talk NMO Attacks and Hospitalizations Part 3
What are some best practices or tips you keep in mind when you know you have to go to the hospital? What do you bring with you? How do you prepare?
"When I go to the hospital I have to keep in mind that NMO although is becoming more recognized, it is still rare and not everyone, including doctors, are aware of what it is. Now I tend to pack a bag when I have to go to the hospital because I am always going to assume that they will keep me (I'd rather be prepared and have some of the things that make me comfortable than to have to wait for them to be brought to me). In my bag, I will pack at least 1 change of clothes, pajamas, undergarments, hygiene supplies, chargers for my phone, and my iPad. If I do have to stay and it turns out to be a long stay, I just have my husband bring me more of what I need."
"Remembering and accurately relaying diagnoses, medication dosages, and other pertinent information is an enormous task for me on a good day. I find it’s easiest for me to keep an updated form on my computer that details all the medical information I’m required to provide at the emergency room. My husband and sister both have access to this document, and I keep a paper copy with me at all times in the event of an emergency. During an NMOSD attack (particularly if I’m unable to see), handing my medical information directly to the ER doctor has taken a huge amount of pressure off of me to answer questions and remember all there is to know. Not only has my life been made easier, but the feedback from ER doctors has been overwhelmingly positive."
"If I know I am likely going to be admitted into the hospital for several days, I will pack a bag for myself before going to the emergency room. I keep a checklist printed of all the things I typically need during a hospitalization. I’m able to get myself packed in 10 minutes or less, and I don’t feel rushed or scattered in the process."
"If for some reason I’m unable to pack my own bag, my husband knows where to find the checklist of the items I need. I no longer have to worry about spontaneously coming up with a list of items for him to gather. Having a thoughtfully created checklist for him to follow takes the guesswork out of the packing process and makes it less likely that something important will be forgotten."
"At this point in my life, I’ve learned not to go to small-town hospitals. I save myself the hassle and the 6 plus long hour of waiting for a “you will be transferred to another hospital because we don’t handle that type of care…” When I go to the hospital, I usually bring my own chargers (phone and laptop), my own pillow and fluffy blanket, snacks, personal hygiene products, and extra clothes. I usually leave my house organized and my clothes organized so if anyone ever had to get anything for me, they know exactly where to get it. Since I have school-age children, I always try to leave little love notes so they know that mommy will be back soon. Hospitals are intense and you can never be too prepared, but then again you can’t control the way things go."
How much do you share about life with NMO with family and friends?