As treatments improve, people with sickle cell disease (SCD) are having shorter hospital stays. However, hospitalizations are still commonly needed to treat acute pain crises, acute chest syndrome episodes, and other complications of SCD.1
Long hospital stays can be stressful. You may be experiencing severe pain while in an uncomfortable place that does not feel like home. Taking steps to make yourself feel comfortable and entertained can help you get through the stay.
What is the hospitalization data for people with sickle cell disease?
If the doctors in the ER decide you are not ready to go home, you will be hospitalized (admitted to the hospital). About 80 percent of hospitalizations for SCD begin in the ER.2
In the hospital, doctors and nurses visit you throughout the day to check on you and plan care. You may or may not have a roommate, but you are entitled to a quiet room.3
Common causes of hospitalizations for people with SCD include:4,5
- Acute pain crises
- Acute chest syndrome episodes
- Infections
- Severe anemia events
- Stroke
- Priapism (an erection lasting longer than 4 hours)
The length and type of hospital stay depends on the severity of your complications and many other personal factors. Here are some characteristics of hospital stays for people with SCD:2
- 75 percent of hospital stays involve a pain crisis
- Half of all hospital stays are for people 18 to 34 years old
- The average length of stay in the hospital is 5 days for adults and 4 days for children
- Hospital stays for people with SCD are concentrated in a small subset of hospitals
- Most hospital stays are for Black people from low-income communities, metro areas, and the South
What are some ways to cope with a long hospital stay?
A long hospital stay can be stressful. While dealing with severe pain, medicines, and procedures, you may be uncomfortable and worried about being away from your daily life. These concerns are totally normal.
Here are some tips to help cope with a long hospital stay:3,6
Stay connected to the outside world
Spending time with loved ones breaks up the day and distracts from stress. If in-person visits are possible, ask them to bring something you can enjoy together, like a board game. If visits have to be done virtually, you can still talk to them over phone or video. You can even play games or watch movies together virtually.
You can also bring comfort items that remind you of home. This could be a blanket or pillow, or photos of friends and family.
Bring your own food and toiletries
Most hospital floors let you keep labeled food in the hospital. If you are on a special diet or do not want hospital food, ask your family to bring some favorites from home. The hospital provides basic toiletries, but having your own will make you feel more comfortable. Ask a family member to bring you a bag with your own toiletries.
Bring comfortable clothing
Wearing a hospital gown can make you feel awkward and uncomfortable. Ask a family member to bring your own clothing, such as pajamas and a robe.
Stay entertained
Boredom is 1 of the most common complaints for people staying in the hospital. Bring a laptop, phone, and chargers to help pass the time. Some activities you can do from your hospital room include:
- Streaming new TV shows and movies
- Re-watching favorite shows and movies
- Meditating
- Starting a journal about your experience
- Reading books
- Playing video games
- Listening to music or podcasts
- Doing jigsaw puzzles, crossword puzzles, and brain teasers
- Chatting with your roommate
- Getting movement every day around the floor or outside
Hospitals often have a “recreational department” that can provide you with DVD movies, video games, puzzles, or other activities to keep yourself entertained. Be sure to ask if your hospital has a recreational department.
Find support
Talking to other people with SCD can help reassure you that you are not alone. You can also get advice on how others have handled long hospital stays. Join online support groups and communities to find people to talk to throughout your stay.
Therapists and counselors may also be available in the hospital. Depression and anxiety are common in people with SCD. It can help to talk to a therapist about your concerns and frustrations.
Ask questions and voice your concerns
Make sure you ask doctors and nurses to explain medical terms you do not understand. If there is a medical student on the healthcare team, you can also ask them. They may have more time to sit down and explain any test results, procedures, and treatments in more detail.
If you are not happy with your care, speak up. If something bothers you, doctors or nurses can adjust it. Be open and honest about any issues you are experiencing, and the medical team will often try to address your concerns. This is often a simple fix and can greatly improve your quality of life.