Most adults with CF will have to use home care in some form. This might include IV antibiotics, home physical therapy, tube feeding, IV nutrition, supplemental oxygen or assisted ventilation. Managing home care well will likely reduce your complications and hospital stays.
If you choose to do your treatments or tune-ups at home rather than in the hospital, you should be ready for the time and work that is required. That said, home care can become as routine and manageable as your daily airway clearance therapies. With practice, you can find out your own best way to make home care work.
As an added bonus, home care technology is always getting better. Be sure to ask your health care providers about any new access devices or delivery devices (pumps, oxygen tanks, etc.) that could increase your quality of life and make home care even easier.
Here are some good tips and thoughts to keep in mind for managing your home care successfully:
- Designate one “clean corner” of a table, shelf or counter for getting your medication ready. This is where you can hook up your IVs, prepare your meds, draw up syringes and do other medical work that requires good hygiene. You may want a clean corner in your fridge as well.
- Be hygienic — use paper towels and anti-bacterial soap religiously.
- Organize your home care supplies to make sure you have enough to get through your treatment without stopping. You may want to plan ahead by counting out your daily supplies and setting them aside for a week.
- When bathing or washing, follow your nurses’ guidelines on covering your IV line, implanted port or button. Consider washing your hair in the sink every day and showering every other day. Get a showerhead with a hose to make showering easier when you can’t get one part of your body wet. Use a plastic cover on your arm if you have a PICC (peripherally inserted central catheter).
- Keep IVs and other home care products safely away from young children and pets in your home.
- Don’t leave IVs in the sunshine or the car where the medication is subject to extreme temperatures.
- Get out and enjoy life. Our mental health impacts our physical health. It’s important to deal with the emotions that come with the extra burden of care and disability, and what that means to you. Going out in the sunshine, taking a walk with friends or just going out for a meal while on home treatment adds to your quality of life.
- Be creative. Figure out what works for you. If you have a gravity-drip IV bag, placing it on a tack on the wall or a hanger is sometimes more convenient than pushing a pole around.
- If you have a hectic home life, with roommates or family members who come in and out in an unruly way, or you are in the process of moving, talk to your CF health care team to see if you can receive care in the hospital rather than at home.
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