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!
*
Monday, August 31, 2009
Monday, August 24, 2009
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/
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/
Tuesday, August 18, 2009
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.
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.
*
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
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
Monday, July 20, 2009
NCAA Recommends Sickle Cell Trait Testing
My son plays football so this story is close to my heart.
The first time I heard about football players (with sickle cell) dying on the field was a story about a young player from Florida. I read, after he died from heat and over exertion, his family was blamed for "not telling anyone" that he had sickle cell trait. The problem was, he nor his family knew that he had sickle cell.
This terrible situation may be prevented forever, according to CBS Sports.com Senior Writer, Dennis Dodd. In his June 29, 2009 article, NCAA to recommend schools test for sickle cell trait he states, ... the NCAA and Rice University settled a lawsuit brought by the family of a Rice football player (Dale Lloyd) who died in 2006 due to complications resulting from sickle cell trait.
As a result of the settlement, the NCAA, regarding player safety, will now recommend testing for sickle cell trait of its players. In addition, Rice will help sponsor NCAA legislation to make sickle cell trait testing mandatory
Dale Lloyd did not die in vain. The legacy he leaves behind will benefit football players all over America. They will be tested prior to those HOT summer workouts and maybe now, they won't blame the players for not knowing.
Read Dennis' article:
For more information on the subject:
Rice University -Dale Lloyd Bio Page - http://riceowls.cstv.com/sports/m-footbl/mtt/lloyd_dale00.html
Dale Lloyd Memorial Scholarship - http://riceowls.cstv.com/genrel/101106aae.html
Black Coaches and Administrators - http://bcasports.cstv.com/genrel/062807aaa.html
*Wednesday, July 8, 2009
Exercise and Sickle Cell Care
When you are in pain the last thing you want to do is move your body. When a person with sickle cell disease has a episode of pain or “crisis, ” the pain is beyond understanding. What I have discovered is if I strengthen my body through exercise I am better able to manage pain. This is not to say exercise prevents a crisis or helps during a crisis. It is to say, a strong body is a healthy body.
Excessive exercise could cause over exertion and therefore, cause a sickle cell crisis. I am not advocating anything but gentle, consistent, light motion. Light weight lifting, gentle stretching, and easy cardio exercise.
Here’s my exercise regime. Three days a week: I stretch my legs to get ready for exercise, I walk for 30 minutes, then lift I light weights (3 or 5 lbs). To end it all, I gently stretch my arms, legs, neck, and back (somewhat like yoga stretching). After this exercise I feel strong and balanced. Of course, I eat well too….fruits and vegetables, and lean meats.
People with sickle cell disease have to participate in their own care. We have to take responsibility for what we CAN do to improve our health, and then let our medical professionals help us too. Keeping our appointments for preventive care; like mammograms, bone scans, blood test, eye exams, and dental exams all play a part in helping us live well.
Here’s my exercise regime. Three days a week: I stretch my legs to get ready for exercise, I walk for 30 minutes, then lift I light weights (3 or 5 lbs). To end it all, I gently stretch my arms, legs, neck, and back (somewhat like yoga stretching). After this exercise I feel strong and balanced. Of course, I eat well too….fruits and vegetables, and lean meats.
People with sickle cell disease have to participate in their own care. We have to take responsibility for what we CAN do to improve our health, and then let our medical professionals help us too. Keeping our appointments for preventive care; like mammograms, bone scans, blood test, eye exams, and dental exams all play a part in helping us live well.
*
Subscribe to:
Posts (Atom)