Monday, May 20, 2013

Sickle Cell Pain And Opioids

There is no way around pain. It will not be ignored and it must be addressed. The issue doctor's deal with is how to treat it. One way is through the use of Opioids.

Sickle cell pain is chronic and life-long. Unless you have the coveted bone marrow transplant, with 100% marrow match and you've been confirmed "cured," you're gonna have episodes of pain. People with sickle cell disease are prescribed many drugs to help us deal with pain, and we have to be careful not to over take our cure our suffering.

In my previous post, I talk about misconceptions people with sickle cell deal with. One misconception is we're seeking drugs...for fun. This is a huge problem for most people in pain. In addition to misconceptions, there are issues like addiction, depression, damage to organs, and death.

We need Opioids for the relief of pain, however, they are not to be taken lightly. When taking medicine for chronic pain, we (the user) must be informed. Specially related to Opioids, we should know what are they, what they're doing to our bodies, and the risks associated (including abuse and overdose).

To learn more check out this video "Opioids: Friend or Foe" by Canadian Institute for the Relief of Pain and Disability (CIRPD).  It was intended for healthcare providers, but I also think patients (Opioid users) could benefit from this information. Also, CIRPD's article "Opioids and Chronic Pain."
Take the time and learn about Opioids. These medications are intended to help us, but they can also hurt us if we (the user) do not understand their usefulness and our responsibility. 

Check out CIRPD videos or visit their website
Also, news related to sickle cell disease and opioid effects go to Medical News Today

Monday, May 6, 2013

Fighting ER Misconceptions About Sickle Cell

Based on an article by Beryl Lieff Benderly

An all too familiar emergency room experience for people with sickle cell disease is humiliating, scary and painful.
Just imagine you are wheeled into the emergency room, every limb on your body feels like large butcher knives are stabbing into your bones. You barely speak except to nod to acknowledge your name and medical record number. A nurse fills out every form, then sends you over to a corner to not disturb others with your cries. You feel like you are dying. Your body hurts, your mind wants to give up and your soul is ready to get out of this pain filled life. This is how it is for many people with sickle cell disease during an emergency room visit.
Last year, Paula Tanabe, an associate professor at the Duke University School of Nursing was commissioned by The National Heart Lung, Blood Institute (NHLBI) to explore this problem.

This issue is complex.

People with sickle cell experience acute and unpredictable pain, severe enough to require large doses of narcotics, is a well-documented feature of sickle cell disease. But Tanabe has found that too often patients in sickle cell agony are not handled properly by doctors and nurses in the emergency department because they erroneously think the patients may be running scams, seeking drugs.

She believes stereotyping is the number one barrier behind that wait: "After being cute little kids with sickle cell that everybody felt bad for when they had pain, now they become this African American 20-year-old asking for high doses of opioid narcotics." 

Ms. Tanabe says better training of health providers and changes in emergency room procedures can improve the care that sickle cell patients receive.

There is hope and help is coming.

Currently, a team has been assembled to update the NHLBI Guideline of Treatment of Sickle Cell Disease. The guideline will be principally aimed at primary care practitioners and their patients to help manage the ongoing processes of the disease. The guideline will also be valuable to hematology specialists and their patients.

There will also be a webinar to discuss these updated guidelines in September 2013 through The Sickle Cell Information Center website.

Personally, I have experienced bad emergency room treatment as well. And, I'd like to thank NHLBI and Ms. Tanabe for their efforts to identify and address this issue.  I appreciate your help in this area.