Sunday, February 10, 2008

Going to the ER with Sickle Cell

For some reason, the medical profession, especially in the US has a limited view of sickle cell. First of all, they think that people with the trait can't have pain---THAT IS A MYTH! Just because they don't have the full out disease, doesn't mean that pain doesn't exist in the life of a carrier too. On the sickle cell forum, I heard about the guy on the East Coast that has had the trait for YEARS but kept getting told that he couldn't be in pain. 

What is up with that bullshit line, "You can't be in pain?" How do you know what my pain is? Are you in my body? Do you know anything about me that you think because a certain dosage works on you or others that it's okay for my pain as well? Pain is subjective bitches, so if I'm telling you I'm in pain...then hell yeah, I'm in pain. 

Okay, before I get hit with the firing squad let me remind you---I work in the medical profession. So I see on a constant basis how we in the 'med profession' have a nonchalant attitude towards pain. If it's not your pain, you can't relate to it. So just try to help the person and stop hoarding the pain meds like you are paying for it our of your own pocket.  

Yeah, it sucks the way hospitals and med. professionals treat us. I once was made to crawl out of the ED on my hands and knees, I was in so much pain and they just ignored me and watched me crawl. I don't want that to happen to anyone ever again, so let's arm ourselves with some knowledge. 

Here are some tips that a sickle cell warrior should know before going to the emergency room:
  • You have to find a doctor...just one, that is with the program. Once your doc is on your side, he can write standing orders for you at the ER that you visit. Most people don't know about this, but it is possible for the doctor to leave standing orders with parameters on your file with the emergency room. That way the ER doc knows what he needs to do to get your pain under control.
  • Try using a hematologist or oncologist instead of an internal med. doctor. They have more compassion, especially the oncologists. Oncologists have a better relationship to pain management because cancer pts deal with alot of pain and tend to have high tolerance to pain meds just like we do.
  • Stick to the same ER.  I've noticed that when you go to different ED's you don't get a good history. They won't have you in their records and won't know your parameters. Also, it will look like you only get 1-2 crises a year instead of 4-6 if you play ED hopscotch. So find one that doesn't treat you too bad and go there often. That way they will have a thick file on you that they can refer to and realise from your labs that duh, you DO have sickle cell.
  • When going to a new hospital, I always take my doctor's notes and medical folder with me, just in case they try to give me grief. Usually this contains a set of lab work so they know where my H&H usually hangs out at as well as what kind of pain meds I've been prescribed. In the medical field, you can never have too much information. 
  • Always try to have someone go with you, like your mom, sis, friend or man, someone that they won't walk over that will raise hell to get your pain under control. Your family/friend can be your greatest asset during this, they are your advocate and are there to see to your comfort and make sure things are done correctly. When all else fails, ask for the manager (yes, hospitals/emergency rooms have managers too!) I once filed a complaint with the nursing supervisor against my doctor and nurse, and it went up the channels until the CEO of the hospital came to apologize on their behalf. Never think that you have to take whatever they dish out---remember, you are the customer!
  • Empower yourself. Learn as much about this ailment as you can so that when you get in the ED, if you are met with an ignoramus, you will be able to educate them. Just because someone has a medical degree, doesn't mean they know much about SCD. You are the most experienced person in the room because you've dealt with it everyday of your life. That's a whole lot of knowledge. So don't be afraid to step up and speak up for yourself. 
Good luck my warriors! 


Anonymous said...


Wow, that really sucks. It's crazy that this still happens with sickle cell, because we know so much about this disease. It's not a new one!!! It should be obvious to any doctor that sickle cell is going to cause a great deal of pain, and that even those with mild cases will need pain management. Sickle cell is covered many times in our curricula, and from several different perspectives. At my med school it has been covered in biochemistry, genetics, hematology, pediatrics, pharmacology, problem-based learning, and even infectious disease (because of the protective effect a single copy of the sickle cell gene has against malaria infection), and I'm not even done with the basic sciences yet. We have noooo excuses when it comes to our sickle cell patients. I sincerely hope my generation of doctors does a better job. I tell all my classmates about your wonderful blog. Keep it up!


LIFE IS GOOD said...


Thanks for the info. I too have the trait and have run into the same experience with what was called "phantom pain". Phantom my ass, that pain is real! I'm glad your blog is a good resource.

January Payne said...

Hi -- I'm a writer with U.S. News & World Report. I came across your blog and thought that you or some of your readers might be able to help me with a story I'm working on.

My story is about in-flight medical emergencies and how they're handled. I know from previous research (and from a friend with sickle cell who has gone through this, too) that sometimes people with sickle cell disease experience problems with their illness while (or right after) flying.

I'd like to talk with people who this has happened to. Please let me know if you or someone you know has experienced health problems (from sickle cell or other illnesses) while flying that required medical treatment during or after the flight. I can be reached at the following e-mail address (please replace the [at] with an @ symbol): jpayne[at]

Thanks in advance!

January W. Payne
Associate Editor
U.S. News & World Report

Ify said...
This comment has been removed by the author.
Ify said...

Good advice! I usually go to my hematologist's hospital and they know me. So whenever i am at the ED, it doesn't take less than 10mins to get my IV and pain medications. The only problem is when you travel and you are in a new hospital. They would think you are a drug addict and won't believe it even when you are trying to explain it to them. Just ask for the manager or the person in charge and you would see how their attitude would cahnge around you.
They really need education concerning SCD!