Advice from Nancy

Some of you may have watched the various survival shows on TV, Survivor man or Dual Survival.  In every episode the guys on these shows pick up some kind of survival kit and see how they can use it to survive in their location, maybe a jungle in Costa Rica or the mountains of Ecuador.

Unfortunately, going to the ER is kind of like a survival experience.  You are likely to face threats and dangers that could cause injury or harm.  The situation of going to the ER and getting the help you need seldom happens for the sickle cell patient.  A person complaining of chest pain and shortness of breath gets seen right away while the sickle cell patient waits in agony as their ragged sickled blood cells wreck havoc on their internal organs.

Just as the survivors in the jungle need fire, water and shelter, the sickle cell patient needs a way to get immediate, appropriate medical care.  You wouldn’t think it would be so hard but it is.

The first steps begin weeks before the trip to the ER.  First, you must connect with your doctor and get letters and treatment plans.  He/she should be able to make suggestions for which ER to go to.  Going to the wrong ER can be a deadly mistake.

Next, go to the NIH guidelines on sickle cell disease. Don’t be overwhelmed, it’s a terribly long, technical report.  You may want to read it along with a search engine so that you can find the meanings of medical terms. Look for the part that most pertains to your situation and begin to study it.  You may be most interested in sickle cell pain or leg ulcers.  Print out the parts you need, study them, then print them out for your survival kit.  Doctors may not be aware of these guidelines so you may have to educate them.

You will also need to look at the CDC publication on opioid treatment.  Some doctors think that the CDC, DEA and other government agencies are forcing them to cut back on all pain medication.  THAT IS NOT THE CASE.

The CDC says,

“Given the challenges of managing the painful complications of sickle cell disease, readers are referred to the NIH Expert Panel Report for the management of sickle cell disease.”

We have provided a direct link to this important document:

Okay, just one more thing, the Emergency Severity Index is a triage system which is used by more than half of emergency departments in this country, suggests that persons with sickle cell be triaged at ESI level 2, a very high priority, and that rapid placement be facilitated. This means you really shouldn’t be forced to wait, you should be seen right away.

Hopefully with this information in hand, you or your loved one will have a much easier experience in the ER.  If not, wait for our next advisory, Filing a Claim against a Hospital.