Tuesday, July 15, 2008

Catch Up

Wow, it's been 10 days since my last post. Part of the reason is that I've been out of town chilling with my family in Indiana. The flight's were long but I had no problem. No crises and very minimal pain to speak of.

Another thing happening is that I've been revving up for my mom's arrival. She's coming from Nigeria to visit for a week...and it's been such a stressful thing getting my crib "Parent Worthy".

See when I'm home by myself, I have clothes lying around, papers unfiled and not everything in it's proper place. My mom is a organization queen, and I know that anything not in it's place is going to get a derisive snort from her. Other than that, I think the visit will go well.

Another thing is that I'm planning Norio's Birthday Bash this Saturday. It's kind of a weird timing because my mom is here and I'm scheduled to work that night, but the show must go on. I'll let you all know how that turns out. And of course, my second course started in school this week and the reading material alone is time consuming. I just can't wait for school to be over already!

Sickle cell wise, I've been doing great. I got 6 more bottles of Nicosan from my mom, so I"m stocked up for the rest of the year.

I hope everyone is doing well. Summer is usually my best time of the year---I don't know if it's just me or other sickle cell warriors as well, but those months are usually idyllic with very little pain. Come fall, it's a whole new ball game.

Saturday, July 5, 2008

Stop Delays in Treatment of Sickle Cell Patients

This article is from the medical journal ED Nursing printed July 1st, 2007. I'm putting it on here so that more medical professionals can see that it's not wrong to treat sickle cell patients properly. The most pertinent parts for me will be in bold. Hola at Dr. Tanabe for hitting the nail on the head and standing up for sickle cell patients. I would love to meet the good doctor in person and just say THANK YOU! Please spread the word.

Stop delays in treatment of sickle cell pain patients

Believe what the patient tells you

Imagine being in horrible pain and knowing exactly what medication you need to control it, coming to an ED . . . and waiting an hour and a half for relief. Researchers recently looked at 612 patient visits for sickle cell disease (SCD) having an acute pain episode, and they found that took an average of 90 minutes for administration of an initial analgesic.

Emergency clinicians often perceive patients to be drug seeking, says Paula Tanabe, PhD, RN, the study's lead author and research assistant professor in the department of emergency medicine at Northwestern University in Chicago. "Nurses must begin to believe the patient," says Tanabe. "Patients with sickle cell disease do not want to come to the ED. By the time they do, they have exhausted all other interventions under their control." (Anonymous RN, please take note)

Provide better care to patients with SCD by increasing their personal knowledge base of the pathophysiologic complications and course of the disease, advises Tanabe. "ED clinicians receive very little education about sickle cell anemia. Until recently, the average age of death was in the 40s," she says.

SCD is a serious chronic disease often associated with many serious physiologic complications including strokes, acute chest syndrome, pulmonary complications, and acute pain episodes, says Tanabe. Two common mistakes are making wrong assumptions about the severity of their pain and not being aggressive enough in managing it, says Kathleen A. Delaney, MD, vice chair of the Division of Emergency Medicine at the University of Texas — Southwestern Medical Center at Dallas. "Sometimes they don't look like they're in pain because they are chronically in pain," she says. "There is no particular test that tells us whether they are having a crisis or not. We need to accept what the patient is saying and treat the pain aggressively."

To improve care of SCD patients, do the following:

• Develop an individual care plan for patients:"All patients deserve excellent pain management," says Tanabe. For patients with frequent visits to your ED, create an individual care plan with them, ED clinicians, and the patients' primary care provider, advises Tanabe. Emergency nurses can be important members of teams to establish individual patient care plans that outline analgesic management specific to each patient, she adds.

• Assign a high triage score: The study showed that a low triage score was the strongest predictor of long waits to receiving an initial analgesic. Rapid and aggressive analgesic management has been associated with decreased need for hospitalization, says Tanabe. "At a minimum, it is important to assign the correct high-priority score and do whatever possible to facilitate placement in a treatment space," Tanabe says.

• Do a thorough assessment: Don't make the mistake of assuming this is "just another pain episode," warns Tanabe. Patients often present with chest pain that may indicate acute chest syndrome, which is associated with high mortality, and other-life threatening complications include sepsis and stroke, she says.

Often patients with SCD are labeled as "difficult" or "drug-seeking," says Tanabe. "Emergency nurses can help contribute to softening this attitude," she says. Ask patients these questions: What methods did you use to control your pain at home? When did the pain episode begin? Where is the pain? Is this typical of your pain episodes? Do you require transfusions? When was the last time you were transfused? Do you have a health care provider that you see on a routine basis? What analgesic agents are usually effective to decrease your pain in the ED? How many and what doses?

"Typically, we are very impressed when patients can remember their medications and doses," says Tanabe. "The same should be true for patients with SCD."

• Do frequent reassessment of pain after analgesic administration: This reassessment can help achieve rapid pain control and help decrease the need for hospitalization, says Tanabe. "Additional doses should be provided within five to 10 minutes," she says. (I wish this was the case!)

• Be concerned about infection: SCD patients are susceptible to multiple bacterial infections including salmonella and pneumococcal sepsis, warns Delaney. "They develop infarctions of their spleen, so they are essentially asplenetic," she says. "They should get pneumococcal vaccine, which is not usually done in the ED — but sometimes we act as their primary care doctors."


*Tanabe P, Myers R, Zosel A, et al. Emergency department management of acute pain episodes in sickle cell disease. Acad Emerg Med 2007; 14:419-425.

Friday, July 4, 2008

Going to School with Sickle Cell

One thing that I've learned with having this ailment is that I can't let it scare me or change anything about the way I want to live my life. I'm very determined and want to achieve all my dreams, goals and aspirations. I won't let anything stop me from attaining my full potential---and schooling was always on my list for something that was important.

There are alot of resources especially in the US for people going to school with a disease. Guess what---you are qualified as a handicapped person with sickle cell. This means that your school, teachers, administration and classmates can't discriminate on you based on your illness. Also, they can't flunk you out based on it--in fact, they are supposed to help you achieve your goals.

Now I'm not saying sit back and waltz through school without lifting a finger---hells no! But certain rules and expectations can be bent for you, as long as you have a documented medical history. The first thing you need to do is register with the Health Department at your school. This is that little building around the clinic where no one ever goes to unless they need condoms.

They are supposed to cover assistance for handicapped students. You let them know you have SCD, provide your doctor's statement and register for the service. When you fall sick, some schools have it that you can just call the Health Department and they will provide you with excuse slips or contact your teachers.

In addition, you have got to be proactive and stay on top of things. I know that I fall sick every 3-4 months like clockwork, so my homework is always done in advance, I read the syllabus and start drafts on all my papers while I'm healthy so that I have less to stress about when I'm sick. My friends also brought my assignments to me in the hospital and I was hooked up to painkillers and IV fluids studying for tests and completing homework.

It takes alot of guts and determination to keep ahead but you know that you have that cushion for when you do fall sick. And it's good student practice anyway.

Remember, you don't want a pity party thrown on your behalf. But if all you need are few extra days to finish a paper that you weren't able to get to, because you were sick and in the hospital, then by all means, go ahead and let your teachers know. Most people are sympathetic and will get on board with helping you out.

Another perk is that you are probably eligible for a bunch of scholarships that "healthy" people don't get. You can apply for all those Blood Disorder, Cancer, Sickle Cell and Handicapped scholarship. Plus your life story is a built in statement of purpose and might make you nail that scholarship:)

So go ahead---register, go to school and get that degree. I've known people with sickle cell becoming nurses, doctors, lawyers, engineers and bankers. You can do it, the sky is truly the limit, set your goals and achieve them. The only thing stopping you is yourself. Stop being a roadblock to your success and your future.


Thursday, July 3, 2008

Sickle Cell Clinical Trials

I got this from Our Voice, a new sickle cell blog that just launched in the blogosphere. Go over there and say hi!

According to the Washington Post, May 29,2008, Johns Hopkins Institute
researchers developed a human stem cell line containing the mutation associated
with sickle cell anemia.

They say, "One challenge to studying blood diseases like sickle cell anemia
is that blood stem cells can't be kept alive for very long in the lab, so
researchers need to keep returning to patients for more cells to study."

Linzhao Cheng, an associate professor of gynecology and obstetrics,
medicine and oncology, and a member of the Johns Hopkins Institute for Cell
Engineering said, "Having these new cell lines available might enable some
bigger projects, like screening for potential drugs."

Would you get involved in clinical trials if you thought it would help find
a cure?Check out the link
http://www.clinicaltrials.gov/. There
might be something you could do to help researchers find a cure.

Personally, I would love to donate my stem cells to research, as beautiful as they are. As long as it wasn't too painful for them to collect they could get as many as they wanted. From what I know, gathering stem cells can be tricky business, but I wish the good people at John's Hopkins good luck with that. Hopefully they will be able to hurry up and find this friggin' cure already!

Wednesday, July 2, 2008

No Pain

Check this out---this is my first week ever since I hit puberty that I haven't had to take any narcotics. That's intense! I haven't had any L3's at all and barely any L2's. In fact, the only thing I've taken this whole week since Monday last was 600mg of Motrin a few times.

Now I don't know if it's the Nicosan or the fact that now we are having lovely warm weather, but whatever it is, WOOHOO! Oh yeah baby, I want some more of that. In fact, I want some of that everyday for the rest of my life. It's been great, I've actually had more energy than normal and went out to do stuff. I don't know how my H&H is but I know that I feel friggin' fabulous!

So here is to my first week as a relatively 'healthy' person. I hope there are many more to come.