Living Longer

In the United States when President Nixon signed the “Sickle Cell Control Act “ (1972) the life expectancy for people living with sickle-cell disease was 14 years old. In the rest of the world it was 5 years old (per World Health Organization).

Since that time, in America, treatment and care for pediatric patients was greatly improved. I remember going to a sickle-cell disease clinic in 1972 where doctors finally spoke to me about the disease and what it meant to live with it. I was twelve.

Fast forward to 2011, I’m fifty-one years old and many of us pediatric patients are still alive. We’ve lived passed the prognosis of death (14 years) and we are now in our fifties and sixties. This is where the story gets complicated. People with sickle-cell disease (since 1972) received better treatment and that extended our lives.

Currently, in America, healthcare organizations (and insurance companies) do not know how to deal with aging sickle-cell disease patients. Now that we’re living longer, we’re dealing with long-term complications such as; heart disease, stroke, renal failure, retinal detachment, leg ulcers, etc. etc. etc.

In addition, many sickle-cell patients are on Medicare and Medicaid. Since there are no clear guidelines on how to treat these aging patients, Medicare and Medicaid are not approving or reluctant to approve treatment & medications.

The National Heart, Lung, and Blood Institute (NHLBI) has recognized this issue and is addressing it by creating “Treatment Guidelines” for the medical community.

By 2012, the healthcare community will know “what the heck” to do with aging sickle-cell patients. They will have guidance on treatment and care of adult sickle-cell patients, just as they did for pediatric patients in the 1970s.

There is still work to be done to get Medicare and Medi-cal to NEVER DENY treatment or medication for people suffering with sickle-cell disease. But that’s a battle to be waged toward our elected officials by notifying them, “This is unacceptable!” First things first.

People with sickle-cell disease are living longer, thank God, and now the healthcare community will get information about treatment and care for us. All we want is to live happy and healthy lives, now someone’s willing to help.

Thank you NHLBI for taking the lead in this effort.

(Information from teleconference meeting held with NHLBI and various Sickle-cell Disease Advocates and bloggers September 2, 2011)

listen to meeting @ (855) 859-2056 #97067391, (give your name and Our Voice blog)

September - National Sickle Cell Awareness Month

Get smart about Sickle Cell Disease and Thalassaeemia around the world.

World Health Organization (WHO)

Sickle Cell Information Center

Sickle Cell Disease Foundation California

American Sickle Cell Anemia Association

Sickle Cell Disease Association of America

National Heart, Lung, Blood Institute

Is Sickle Cell Disease an epidemic worldwide? Check out the World Health Organization (WHO) report on Management of Haemoglobin Disorders.

Answer: Yes

The Best Therapy

I love to travel, but sometimes it is difficult when I’m not feeling well. What most people take for granted, we who suffer from chronic illness must consider when doing the simplest things. Even a road-trip is a big deal for us.

The September issue of Westways Magazine, the Automobile Club of Southern California’s travel magazine, contained an article by Heidi Nye, “The Best Therapy, the rigors and rewards of traveling with a disability.” This article got me to thinking, we who suffer with Sickle-cell disease should also enjoy life despite our condition….why not travel?

Heidi says, “Travel emphasizes the big, wide world, making it easier to not focus on your infirmities. The aches, pains, and inconveniences of chronic illness or disability temporarily take a backseat to the adventure ride of new sights, sounds textures and tastes.”

I say, “Amen to that sister!”

When we (who suffer with chronic illness) travel, we have to be smart and prepared. I thought I’d share a few of my travel tips, in addition to Heidi’s found in the Westways Magazine article.

1. Plan Ahead –

a. I check weather conditions so that I can dress appropriately. If I get too cold or overheat that can trigger me to have a ‘crisis’.

b. I check the elevation to make sure it is not over 4,000 feet (anything over 3,500 feet makes me begin to feel light-headed and over 4,000 begins elevation sickness associated sickle-cell)

c. I check travel distance or time. If it is a flight, I check how many layovers (stops) my flight might include. The more time it takes me to travel the worse it is for me.

d. I look for non-stop flights with larger airline companies that have larger airplanes. This way I'm confortable. If I have to travel for more than 5 hours I experience leg swelling and pain.

2. Schedule Wisely – I always pace my travel schedule to include rest. The first day AND last day of every trip is my rest day. If I’m travelling with other people I let them know, “I’m taking a nap,” and then I slip away for a few hours….they will understand.

3. Food/Water – If I need certain things to eat or drink I buy them when I arrive at my destination. If it's bottled water, I buy large jugs and keep them in my room. I carry small bottles of water with me everywhere. I make sure that I don’t eat fast food (too often) because it makes me feel dehydrated and sluggish.

4. Pace Activities - I don’t include too many activities in one day. I look at what events are planned and I decide how much I can do. I don’t try to keep up with anyone. I enjoy travel, but I enjoy good health even more.

My conclusion is that I may just sit and watch a sunset, but that’s just fine with me.

ALERT - Pain Medication Recall

According to American Pain Foundation there has been a "voluntary pain medication recall" for mis-labeling.

They say:

"Endo Pharmaceuticals, Inc., and Qualitest, a generic drug manufacturing subsidiary, issued voluntary recalls on June 27, 2011 for certain lots of oxycodone with acetaminophen (Endocet), hydrocodone with acetaminophen (generic Vicodin) and butalbital, acetaminophen and caffeine (generic Fioricet) because some bottles may contain different strength tablets, resulting in individuals taking more than or less than the intended doses of active ingredients."

See lot number information and read the entire article:
American Pain Foundation article
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Higher Doses Justified for SCD Patients

As reported in an article in the the June 2011 Pain Monitor "Researchers from departments of pediatrics at five U.S. medical centers collaborated on a study of 21 SCD patients to determine the impact of the disease on the rate at which morphine begins to effect relief and the duration of relief."

As we already know these researchers found, "Results showed that the half-life of morphine in the SCD patients was 3 to 10-fold shorter compared to morphine clearance in non-SCD patients."

In english....FOR SCD SUFFERERS PAIN RELIEF DOESEN'T LAST AS LONG!!!!

Check out the entire article at:
www.newswire.com/articles/higher-doses-of-morphine
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