What to Keep in Your Bag if You Have ADPKD

Autosomal dominant polycystic kidney disease (ADPKD) is a genetic condition that causes cysts to grow in the kidneys, according to the National Institutes of Health. These cysts can eventually lead to kidney damage and kidney failure.

“These are the common reasons why people with ADPKD might end up in urgent care or the emergency room for more access to care, especially kidney stones,” says Anjay Rastogi, MD, PhD, director of the CORE Kidney Program and PKD Program at UCLA Medical Center in Los Angeles. These hospital visits can be unexpected.

How to Be Ready for an ADPKD Emergency, No Matter What

Even if your ADPKD symptoms are mild, it’s a good idea to keep a go bag ready, just in case you ever need to go to a hospital. Your partner or other family members should know where it is, in case they end up coordinating your care with doctors and nurses once you’re in the hospital.

Here are some must-bring items to have on hand.

1. Your medical history This should be a printed sheet of paper with your health conditions, any known drug allergies, and names and phone numbers of your emergency contacts, including your regular doctor. “This is especially important when you’re traveling if you go to a hospital where nobody knows you and they don’t have your records,” says Dr. Rastogi. Many medical practices now offer online “patient portals” that provide users with all this information in one place. You may also be able to print it out and keep it in your bag in case you need it.
2. A copy of your advance directive While you’re unlikely to need it, it’s good to bring a copy of your advance directive (living will), stating your wishes for end-of-life care, notes Robert Greenwell, MD, chief of nephrology at Mercy Medical Center in Baltimore. The National Hospice and Palliative Care Organization recommends you download and fill out one for the state in which you live.
3. A list of all the medications you’re taking While the hospital will probably administer separate drugs to you, Rastogi says, it’s a good idea to bring a list of all your medications and hand it to your nurse. “One important reason why is that we don’t want to have unknown drug interactions in the hospital,” he explains.
4. Items that will remind you of loved ones and home Hospitals administer treatment, but they aren’t the best place for calm and relaxation. You might want to bring pictures of your loved ones or a smartphone or other device with which you can watch videos of your family.
5. Things to make your stay more comfortable If you want to bring your own bedsheets and pillows, by all means do so, says Rastogi. You can also bring books, iPads, magazines, or games. You might want an eye mask and ear plugs, but the hospital may also provide those for you. Don’t forget to pack your toiletries and a phone charger, Dr. Greenwell adds.

What You Don’t Need to Bring

Although it’s fine to bring extra face masks and hand sanitizer for protection against COVID, the hospital should be fully stocked with personal protective equipment (PPEs) for you, Rastogi says. In addition, you don’t need to bring snacks and drinks, because you’ll likely be on a restricted diet while being treated. If there’s something in particular you’d like to eat or drink while you’re recovering, first ask your doctor before you have a loved one bring it in for you, Rastogi advises.

Likewise, it’s not a good idea to bring your own sleep medications to the hospital, because they could potentially interact with treatment. “Everything that goes into your mouth or on your skin needs to be run by your doctor first,” says Rastogi.

With these basics, you can prepare for anything with ADPKD.