Tuesday, July 28, 2009

Being Sick in Nigeria vs Sick in America

As a transcontinental transplant, I experienced alot of dramatic changes in how I was treated as a sickle cell patient in Nigeria vs my treatment in America.

Those of you who have read the archives know that although I was born in Nigeria, I only lived there from birth to 4 years old, and then from 10 to 18 years old. During those tween years, I was sick enough to need going to the hospital a few times. I had crises probably a max of 3 times a year, and it was usually during some highly stressful event like my birthday, going to camp, high school graduation or anything that I was under extreme stress and not taking care of myself.

I've gone to different hospitals, both public and private in Nigeria, and the care that I got varied from hospital to hospital, but I never felt stigmatized. The nurses gave me pain medication as ordered on time, and the nurses never gave me placebos or acted like they didn't care. If they had given me a dose and I was still in pain 30 minutes later, they would call the doctor on my behalf as a PATIENT ADVOCATE. If I was in so much pain that I was crying and unable to cope, they would come to the bedside, hold my hand, give me warm compresses or menthol around my knees and keep calling the doctor until they got results. They would help me get washed up, get dressed, force me to eat, even if I was hurting so much that I couldn't...and even though I resented this, my hospitalizations usually never exceeded 5 days.

Fast forward to America. My parents actually pooled all their resources into getting me to the USA, thinking that I would have access to the best medical care for my condition. Here I was, in the land of dreams, the country where people from all over the world pray to come to.

When I lived in southern Michigan and in Huntsville, AL; I was treated well. The doctors/nurses had very limited experience with sickle cell, but they had lots of compassion. They worked with me to develop the best care plan, and I went to the closest hospital whenever I had a crises, my records always transferred however, because it was the same hospital system. I felt like a regular patient, and never felt punished because of my condition.

Until I moved to Baltimore, Maryland, an area that is populated with lots of African-Americans, an area that has access to the best research in sickle cell, one of the best comprehensive sickle cell centers and a high demographic of sickle cell patients. These were part of my reasons for moving to Maryland...had I known, I should have just stayed right where I was in MI.

In Maryland, I got the worst treatment that I've ever had in my life. I was stigmatized, ignored, insulted and abused. In the ER of the hospital where I worked as a nurse; I was discharged still in pain, with no access to a wheelchair, no family member present and having to crawl to the waiting room on my hands and knees waiting for 45 minutes until my sister could come pick me up. I had many close calls with death in Maryland, once having to have a total blood transfusion (hemapharesis), and once slipping into a coma that lasted several days. When I was in the ICU, I was treated very well, but as soon as I got to the Med-surg floor, I once again achieved pariah status.

California was an extension of my Maryland experience...but the medical professionals in Cali were by far some of the most callous people that I've ever encountered. It was in a prominent California hospital that a nurse came in and told me to stop crying "You've had sickle cell all your life, you should be used to the pain by now." It was in another Emergency room that the doctor had me in pain for 11 hours because she refused to increase my dose, having me on 2mg of Morphine every 4 hours (are you effing kidding me?). Her shift ended, and it was only then that I got relief.

I could go on and on and on, and I'm sure that many Sickle Cell Warriors all over the nation can tell you the same thing. When a patient has cancer, lupus or multiple sclerosis; they are given the best possible pain treatment plan. When a patient has sickle cell---they are treated like the bacteria on top of pond scum---and made to feel like they don't matter, they are worthless and their pain doesn't count.

When I see or hear of nurses diverting pain medications, giving placebos in place of real painkillers and ignoring their patient's cries of agony, it makes my blood boil over. So yeah, if we are cynical, jaded, bitter and mistrustful of the medical system in the United States...I'm sure you now can understand.


Becky said...

That kind of treatment is a travesty, plain and simple. I have thought numerous times about writing to legislators, etc. but where does one start? My daugter has never had a crisis but we have definitely had hospital issues over various things, and I have learned to be vocal. But I worry for the future, when she might be in a situation much as you related.

Take care, and hope you are feeling well.

Real Life Drama Queen said...

I would so come to Cali and kick some ass for you girl.. You know me well enough to find it true. HUGS

Anonymous said...

the same thing happens exactly in kuwait,

Dave said...

wow im going to Nigeria ... its crazy u would think it would be better in the states guess not.

Melly08 said...

I have been there and seen it, not personally, but my man went to a hospital in TX where they discharged him prematurely, he was lying on the waiting room floor begging to stay, unable to move or get up, they threatened to call the police to escort him out, which they did. Up here in MI, it was a little better, but not much. When they finally alllowed me into the emergency module, it was then they started rushing around getting him blankets, asking him if he needed water and refilling his painkiller IV bag which had run so dry it had crinkled up. One nurse got an attitude and I had to tell her off. Sad, cuz you can't fake that kind of pain.

Ms. Baltimore said...

I sat here for about 5 mins pondering on just how to comment, but really I'm still speechless. My mouth is still open at the 'sickle cell all your life' comment.

I remember the admission I made the switch from a Children's to an adult hospital. Apparently that was the day I became a drug seeker...

Vixen said...

Becky; I think with activism, you have to start the change in your local area first. Change the hospital where you and your daughter goes to. Be vocal to the supervisors, and ask to speak with the customer reps. A hospital is still a business...and customer happiness is important to them. Change that to begin with and the waves will continue. Right now there is a Sickle Cell Warrior named Dominique Friend that is seeking an audience with the White House.

RLDQ: You're such a darling! I know you will.

Anonymous: The same thing as in the US or as in Nigeria?

Dave: I guess since there are 4 million sickle cell patients in Nigeria, there is a greater impact in the community, and everyone knows someone with sickle cell.

Melly: That's another example. Every Sickle Cell Warrior has one story or another like this. We are not alone.

Ms Baltimore: Yep...sad but true.

LoveIsGreater said...

I pray that you continue to do well. My daughter is almost 5 years old and with SS since she was 6 months old. We found that by sticking to her Jamaican diet which is close to an African Diet, has kept her from having pain crisis so far. There is an awesome natural product called "Dioscovite" http://www.dioscovite1.com/1488479.html which contains the nutrients from the African Yam. Also she drinks lots of Tahitian Noni Juice to boost her immune system as well as to alleviate pain. http://www.tni.com/1422865 You & others who suffer with SS should really try this. I don't mind helping or talking with you more. My email is mpark777@aim.com. God bless you & Keep being strong and renouncing Sickle Cell!!

Stubborn Diva said...

I moved back to Nigeria and i am so happy here! My crises is doing so much better!

I remember being turned away many times from the ER because i didn't look like i was in pain. I also remember leaving in pain many times because i was black and the first SS patinet that the doctor had treated.
Yes, all this was in Cali!

Six years after i got there i found the best doctor there was who understood me and had clout at the hospital. I never had any issues after that.

It's hard! Not only do we have this disease, we have to deal with issues resulting from our disease.

Anonymous said...

I know how it goes to. I live in California, I love California. I don't have such a strong like for the hospitals or Doctors here though. Many of the nurses/doctors that treat me I have found I am the first person they have treated with Sickle Cell. One doctor told me to get out of his office that his son had the trait and could deal with it so could I and sent me home with Tylonel with out any sort of blood work or even test. Love Cali, hate the doctors.