Tips for Going to the Emergency Room with Sickle Cell

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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.

5 COMMENTS

  1. My mother had sickle cell and I have always wondered how to help it go by faster. I had no idea that you should go with a friend or family member when taking them to the emergency room. I guess that might just be a rule of thumb, and it is a good practice. Thanks for the information.

  2. i went to an er in Plymouth Indiana and a doctor told me he could not treat my sickle cell but that he would do it this time no blood work no ex-ray no nothing but 2 pills that did nothing I’ve lived in Knox,Indiana for over five years and i have yet to be admitted into a hospital nor had my pain taking care of in Indiana i have to drive 2 hrs away to Illinois to get the care i need yes i do have a doctor here in Knox,Indiana an internal medicine doctor but he’s not connected to the hospital here.now do you have any advice to how to help me because the pain is to much and i don’t go to the hospital unless i just can’t take the pain anymore.

  3. Wow, not getting the care you need is not acceptable. Sometimes you have to let the doctors in the ER know exactly what you need. In order to do that, you have to know yourself and how your Sickle cell reacts. Like if it is hot out and you have not hydrated or can’t hydrate enough and go into crisis, then tell the ER Doc that you need IV fluids. Also let them know what IV pain meds work best for you. For me it used to be Katorolic, now it is Diluted. If they give you a low dose or a half dose, and you are still writhing in pain, ask them for the other half of the dose. Be aware of your normal hemoglobin level. Make sure they check your hemoglobin at the ER and ask them the number so you know if you need a transfusion. If you are feeling dizzy, lightheaded, and headachey, you may also need some oxygen. If you have a fever then your body is fighting a bacteria or virus. If it is a bacterial infection, you might need some antibiotics. If it is a virus, there may be some anti-viral meds they can give you. ERs generally will give you as little care as possible to get you in and out of there as quickly as possible, so let them know everything that is bothering you so they have to take care of it all. Do not be afraid to ask questions and keep asking questions until you get the answers you need. The Author is correct though. You do want to do all of this with as much dignity and respect that you can even though you are in a lot of pain. When the doctors see that you really want to get better and get a solution to why you went into crisis they will get serious about providing you with the help you need.

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