How to Prepare for a Hospitalization with Lupus

Kellie McRae avatar

by Kellie McRae |

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As a lupus warrior, a hospital stay (or several) will be a definite part of the future. I am becoming an expert about making a hospital stay as pleasant as chronic pain will allow.

Any hospital stay is a challenge for you and your whole family, especially if your family is far away. Still, with the right preparation you can make it safer and more pleasant.

Planning and packing

There’s a big variation in the quality of care at hospitals, and different facilities excel in treating different conditions. If time permits, consult your doctor and go online to research your best options. Make sure your primary care doctor and your rheumatologist have privileges at your chosen facility.

Calculate your insurance coverage. Calculating your insurance coverage and out-of-pocket expenses can be difficult, but do your best to work on some of this when you are having a low-pain day with minimal brain fog. I know it sounds boring, but it really will help you over time. Determine what private insurance and Medicare may cover by reviewing your policy, relevant websites and old bills. This has helped me in ways I can’t describe, because sometimes insurers mis-bill. This can cost you more in your deductibles, and the portions they don’t cover (their errors are never in your favor, so it seems). When it comes to arranging post-hospital care, most insurers pay only for temporary skilled care, and only if you’re homebound.

Keep your paperwork handy. Keep important information in a paper file or on a flash drive. (I had seven pounds of medical bills when I moved abroad.) You also can keep your files in Dropbox or a Google Drive. This includes insurance cards, lists of medications you take, emergency contact numbers, a written power of attorney and living will.

Decide which clothes to bring. You may need sleepwear, robes, and underwear. You’ll be changing into street clothes when you get discharged, so bring slippers and shoes. I have become guilty of getting dressed solely to come to the hospital, so I wear what I will wear home because they typically give you hospital garb. Take your personal hygiene products like toothbrush, face-wash and skin-wipes. (They don’t always allow you to wash those … ahem, personal parts, so the skin wipes become essential.)

Don’t forget these items! You also may want a hand mirror. (I don’t bring a mirror; I’ve become a master at using my selfie camera as a mirror.) I really do my best to pack as light as I can. Remember your medications, eyeglasses, hearing aids or other medical aids that help make your hospitalization easier.

Keep yourself entertained. Books, needlework, coloring books and snacks can make your stay more pleasant. If hospital rules permit, you also may be able to use your laptop or portable media player.

Lastly, protect your valuables. Theft can be an issue in hospitals. If at all possible, remove your jewelry prior to heading out, and take your credit cards only if necessary for co-pays and such.

How to communicate with your care team

Get to know your care team. Partner with your care team immediately, including the doctors, nurses, social worker, discharge planner, patient representative and billing staff. Your primary physician may be able to play an advisory role, even if other specialists perform your treatment.

Understand your rights. You have the right to refuse care, and get an explanation of the benefits and risks of all procedures. Be observant, ask questions and, above all, know you are in control. Sometimes our caregivers see so many people they forget we are indeed people. If you must complain, in the U.S., start with your attending physician, let them know your concern and then you can move up to the hospital administrators. If that does not work, start working your way up the ladder; do not take your healthcare for granted and don’t let them do it either.

Ask a loved one to oversee your care. You’ll be under significant strain, so it will be nice to have a friend or relative look out for you. My daughter, who is only 26, has become a professional advocate for me. If no one is available, most major hospitals have patient advocates who can help you communicate with hospital staff.

Discuss your medications. Medication errors can be prevented. Tell the staff which medications you take and the dosages. Give them details of any adverse reactions you’ve had in the past. For best results, make sure you take your medications from home with you so they can physically see the bottles and read the dosages. If you have any allergic reactions to the medications, or any other medications that may not be part of your regimen, still be certain you let them know. DO NOT forget to tell them of any allergies.

Arranging for your discharge

Understand the benefits of going home as soon as possible. Hospitals are under financial pressure to discharge patients, but it’s difficult to return home while you’re still in pain. However, there is an upside. Going home reduces your risk of hospital-acquired infections, and regaining your mobility helps protect you from potentially deadly blood clots. Let’s face it: No one ever really gets any real rest in the hospital, so sometimes even being in pain in your own bed beats the daylights out of being in pain in theirs.

Ask about equipment. You may need hospital beds, commodes and other items. Check with your insurer or see what they will cost you out-of-pocket to rent. Have them installed before you arrive home. The hospital discharge manager may be able to advise you.

Arrange post-hospital care. Depending on your condition, options range from rehabilitation centers to home health aides. Even if you live with your spouse, or in an assisted living community, you may need a skilled nurse for some functions. Talk with your care team about everything you’ll need to recuperate.

Lupus can really cause us to need more things than we realize; just do your best to minimize the discomfort as soon as possible.

Being proactive will help make your hospitalization more comfortable, and will speed your recovery, and minimize stress (a huge lupus trigger). Trying to arrange for the inevitable ahead of time is never a bad thing. Of course, you may miss something, but if you have the big things handled, the smaller things are easier.


Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.