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One of the greatest challenges to living with HIV/AIDS is coping with hospital stays. While you are there, you'll feel better if you maintain control over your body and your life. The following hints will help.
While hospitals are a good place to be if you are in a health crisis, for many people home is a better place for recovery. So, make your stay as short as possible!
Bring the vitamins, drugs and herbs you usually take - your self care does not stop in the hospital. Once you are settled in, let a nurse or doctor know what you are taking. If it helps, make a list. Your health requires that that you keep as much control as possible, so don't let them take these self-medications away from you without a good reason.
Bring clothes from home, especially 'sweats' and T-shirts or pyjamas. Those open-air gowns can be embarrassing and uncomfortable. Ear plugs help you sleep in a a noisy place. To keep comfortable and connected to familiar things, bring personal items: pictures, flower vases, a stuffed toy, a "Walkman" or even a humidifier. But remember: you may be sharing a room, so too much stuff can be a problem.
Choose someone you trust and who is knowledgeable about HIV to act on your behalf while in hospital. When you are admitted, have his or her name placed on your chart, with permission to have access to all information about your health.
Sometimes you may be too ill or medicated to understand or remember what you have been told about your condition. Have it agreed that this person is to be consulted about all decisions affecting your care. Preparing a Medical Power of Attorney beforehand is a good idea.
This is where your advocate comes in handy. Do not permit tests or treatments until the doctor in charge of your case explains what is being done, why, and what the risks are. You have the right to say no to tests, treatments, or being a case study for the benefit of medical students.
Nurses are important to your recovery! They are generally overworked, underpaid and do not receive the recognition they deserve. So, be nice to them. They can make your stay a better experience.
If you have serious problems with your nursing care that can't easily be resolved, ask for the nursing supervisor, the director of nursing, a social worker, a chaplain or a hospital ombudsman.
Hospital food is legendary, so if you can, get your loved ones to bring in nutritious foods that you enjoy as well as your favourite comfort foods. If not, work with the hospital's dietitian directly to plan the meals that will meet your needs. Ask a relaxed and trusted friend to help you at meal times, especially if you are weak.
Hospitals are pretty good about letting your visitors come outside of regular visiting hours, but you may have to set some limits to get some rest. Decide who among your friends may come anytime, select a time when no one can come (a sign on the door helps), and don't hesitate to ask visitors to leave if you are tired or unwell. They will understand.
It is important to help children get used to your staying in hospital. Have someone to help you during their visit. Answer all their questions as best you can. Have them visit at a quiet time so there is less confusion. Let them leave something with you such as a toy or a picture, and let them take something home with them that reminds them of you. Seek advice from hospital staff.
Leave your room as soon and as often as possible. You need to remember there is a world outside your room. Walk the halls; go to the hospital lobby; and if you are able, go on trips outside for a few hours or overnight.
Don't leave the hospital unless you feel well enough to be at home. Make sure everything is ready for you - nursing care, child care, food, medications and people to check on you. The hospital social worker can be helpful here. Make sure your hospital doctor calls your personal doctor about your condition before you are released. Your General Practitioner is the one who has to do follow up care.
Contact your local AIDS Service Organization to talk about your hospital stay - what was good and what could have been better. If you ever need hospitalization again you will be better prepared.
text: Glen Pelshea
revised and reprinted 4/96
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