Preparing for the ER or a Hospital Stay

Are you prepared for a trip to the ER or a hospital stay? A follower asked what she should pack.

Dear Andrea,
I have suspected pneumonia and am going to the emergency room. I feel certain they will admit me. What should I take with me?
Thanks, 
Packing for the Hospital

Dear Packing,
While I am sorry to hear you may have pneumonia, it is a common scenario for those with muscle-wasting diseases. I have fortunately never been in this situation, so I reached out to my peers in the Breathe with MD Support Group at https://m.facebook.com/groups/breathewithmdsupportgroup, and they responded with excellent advice.

If you can contact the specialist you see for Neuromuscular Disease (NMD) related breathing muscle weakness, do so in advance. They may be able to do a “direct admit,” allowing you to bypass the emergency department, avoiding the germs, and reducing your wait. If direct admit is not possible, they may be able to call ahead and tell ER staff what to expect before your arrival.

If the hospital is a long distance from home or you have never been there, you should err on the side of over-packing. Take snacks, bottled water, any toiletries you use such as toothbrush and toothpaste, all medications, and all respiratory equipment (bi-level device or ventilator) with extra supplies. Small hospitals tend to not even know what the Philips Respironics CoughAssist is, so if you have that vital piece of equipment, by all means, take it.

If pre-admit is not possible, bringing your own pulse oximeter may be helpful to monitor your oxygen saturation while you wait. If you have any other medical devices such as a feeding tube, catheter, etc., pack the necessary medical supplies for that too. If you have a surge protector or extension cord, take them along. Many hospital rooms have limited electrical outlets. Don’t forget your wheelchair charger too! 

If you have a blanket, pillow, or stuffed animal that adds to your comfort, take that with pajamas and shoes or slippers. A change of clothes is never a bad idea. A copy of your living will, durable power of attorney, and a medical binder that includes articles about your NMD, recent pulmonary function test (PFT) results, etc. can also be helpful. 

The International Ventilator Users Network (IVUN) has a portfolio of four documents called “Take Charge, Not Chances” that you can save, fill out, print, and bring along. They are designed to assist with advanced preparation of an emergency, communication between patient and medical staff, and to help educate the medical staff. Find them athttp://www.ventusers.org/vume/.

And lastly, it never hurts to take along a well-informed advocate for your care. They can speak on your behalf and help to ensure a smoother hospital visit and/or stay. 

Wishing you a rapid recovery,
Andrea

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