Go Tell That

I surveyed a group of people who suffer with Sickle Cell Disease. The list of major issues they face with management of their disease AND with their interactions with healthcare providers are listed below:

1. Don’t like the side effects of medications (i.e. MS Contin, Vicodin).
2. Lack of compassion from healthcare providers.
3. Doctor’s who reduce pain medication prescriptions, not believing their pain levels.
4. Hospitals have a rule “3 doses of pain medicine, then discharge.” Not fair!
5. Health care professionals have nonchalant attitude regarding pain (no compassion).
6. When experiencing pain they are under medicated.
7. Teaching healthcare clinics seem to treat patients better, more informed about pain.
8. Discrimination by white doctors regarding SCD disease…demeaning treatment.
9. As tolerance to pain medicine increases, healthcare professionals debate increasing dose or quantity.
10. When experiencing a sickle cell “crisis”, they are under-treated. Pushed out of hospital before fully well.

I'm appalled just reading this list. I've experienced each and every one of these issues, but it makes me mad to see that others have too.

People who are sick, are sick...believe them. Most people who suffer with sickle cell disease only want help. They're not "happy" about being in pain just to get drugs. Believe that too!
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Sickle Cell Community

People Living With Sickle Cell

Are you living with Sickle Cell Disease? Go to the on-line community to meet other people with this disease. We support each other and share information.

http://sikcell.ning.com/

Blood & Sickle Cell Disease

Blood is the life force within our bodies. Like oil in an engine, we can’t run without it. We can live with a transplanted heart and we can live without a kidney. If we lose a limb, we can order up a prostatic part and keep going.

Blood, however, cannot be replaced entirely. Sure, we can get transfusions, which will supplement what we already have, but we need a full supply to live.

People with sickle cell have red blood cells with a shorter life span. Usually, red blood cells live 120 days. For people with sickle cell the red blood cell lives only 10 -20 days. When those short-lived red blood cells die prematurely it also causes anemia. To top that off, in addition to having short-lived red blood cells, the ones we do have are sickled shaped and lacking oxygen.

Transfusions may be needed if red blood counts get too low to sustain life. Blood is made up of red blood cells, white blood cells, platelets, and plasma. Blood is transfused either as whole blood (with all its parts) or as individual parts. Every person has one blood type (A, B, AB, or O). Also, every person’s blood has an RH negative or RH positive. When getting a transfusion, the blood type received must work with your blood type.

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Getting many blood transfusions can cause too much iron to build up (iron overload). People, who require multiple transfusions, are at risk for iron overload. Iron overload can damage the liver, heart, and other parts of your body. Blood transfusions can also damage lungs, making it hard to breathe. Most patients recover, however, 5 to 25 percent of patients (who are very ill to begin with) develop life threatening lung injuries.

When getting blood transfusions there is a (small) chance of contracting a virus or infection. In addition, some people experience allergic reactions. (I once grew hair on my chest after receiving a transfusion.) Hey, I’m a woman and this ain’t supposed to happen.

At some point, most people with sickle cell disease will need a blood transfusion, some more than others. Overall, this life flowing fluid is a blessing. Those of us who receive it, thankfully do. Those of you who give it, thank god for you.

For more information see:
National Heart, Lung and Blood Institute http://www.nhlbi.nih.gov/health/dci/Diseases/bt/bt_summary.html