It’s 2am in the morning, and much to your dread, you are in a crisis. The dread doesn’t come for the anguishing pain—no: the dread comes from the fact that the pain is so overwhelming that you have to go to the Emergency room. For many of us with sickle cell, going to the emergency room is one of the worst parts of having sickle cell. Everything about the ED screams “NOT SCD FRIENDLY” whether its the bright lights, cold temperatures, thin blankets, inadequate pain meds, blank stares or cold, callous health professionals. The formula for every ER visit is usually the same, and at the end of the day, sometimes, you are more emotionally bankrupt than when you came in.
After talking to some of the warriors on the Sickle Cell WarriorsFacebook Page, we settled on a few important tips that we all should adhere to when going to the emergency room.
1. Hydrate as much as you can before you go in, and while you are in the waiting room. Drinking water will help those tiny little veins make an appearance. The quicker they can start an IV on you, the quicker you can get treated.
2. Take some pain medication BEFORE you leave the house. Going to the ED in full crisis might be too overwhelming if you have to wait for a long time. Have some pain meds to tide you over, so that you are bone dry in excruciating pain before you are seen.
3. Go with a friend or family member. Everyone should have an advocate ESPECIALLY in the Emergency Room. Your advocate will be the one to assert your needs, and pressure the nurses and doctors to take care of you better (if they haven’t).
4. Try to use the same ED every single time. Hospital hopping leaves you with a choppy medical history, and oftentimes, not having a comprehensive record in one location can lead to multiple unnecessary tests, and delays in treatment.
5. Have a regular doctor/hematologist. Most people use the ER for routine doctors’ appointments, and this annoys the nurses and doctors to no end. Make sure you have a primary doctor that covers you regularly for non emergent issues. If possible, he should be affiliated with the hospital system you are visiting, so that all your records are in one place.
6. Know your history. You should know what your normal blood counts are, when you last period was, the last time you were hospitalized, and all medications you are taking. You should know your doctors phone number by heart so you can call him if things get dicey. If possible, have a copy of your last laboratory work/discharge summary.
7. Take your pain meds with you. One of the warriors suggested that you should take all your pill bottles, even your empty prescriptions with you. This way, the nurse/doctor can see that, “Yes, you really are on that Dose of pain medicine” and that you get your prescriptions filled for that high dose. This will help cut down on under-medication.
8. Don’t be THAT patient. Carry yourself with dignity at all times. Even if you are frustrated and upset, try to use reason and logic instead of tears and shouting. It is true that the squeaky wheel gets the oil, but you can be assertive without being aggressive. Be polite, but firm. Keep asking for the doctor/nurse until you get one. Ask for the supervisor/charge nurse if you feel you are being treated unfairly. Speak up, but don’t be an assh*le (you’ll create a stereotype that another sickle cell patient has to fight against).
9. Find your spiritual center. Sometimes, the pain can be so overwhelming that you just want to curl up in a ball and die. Recite your favorite quote, Bible verse or say a prayer. You have to find a way to calm your inner soul, to relax yourself amidst the chaos and to believe that, ‘Yes, you will survive, it does get better and you can make it through.’
I know that it can be hard, it can be scary, and it can be difficult. But armed with these tips (and hopefully God lighting your path), you will have less horrendous ER visits and more positive ones. Blessings and be well.