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Permalink Reply by Ali on August 14, 2009 at 6:02pm

Reply to question 1: I don't like the side effects of MS Contin. I hate being drowsy all the time and my lack of concentration. I wish that there were non narcotics that provided the same amout of pain relief that MS Contin does. I wish that my healthcare provider had another treatment for my chronic pain other than MS Contin. I am 42 years old. When will I get off of it?

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Permalink Reply by Sickle Cell Warrior on August 20, 2009 at 10:07pm

I'm going to put this on my blog...just for more responses if you don't mind.

It's http://sicklecellblog.blogspot.com

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Permalink Reply by Sickle Cell Warrior on August 20, 2009 at 10:26pm

The main problem that comes to my mind is the lack of compassion that sickle cell patients receive from health care providers. Doctors don't believe your pain and ask you what your doses of pain meds are, and when you tell them, they respond "Oh that's too high, that can't be right, I'm only going to give you half of that or less..."

Usually, they ignore whatever you say, and go by whatever they feel is right---which ends up leaving you in more pain, or have your pain and anxiety increase. One of our members detailed a very sad experience where she was admitted to the hospital and was in pain for 4 days!!! The doctor pretty much ignored all her requests for better pain management. I'm sure we all can relate to that in one form or another.

What is up with that line, "You can't be in pain?" How do you know what my pain is? Are you in my body? Do you know anything about me that you think because a certain dosage works on you or others that it's okay for my pain as well? Pain is subjective, so if I'm telling you I'm in pain...then hell yeah, I'm in pain.

And whoever came up with the "rule of 3 doses of pain medicine then discharge" for emergency room visits needs to be garroted. This rule is now followed retardedly by every emergency room physician across the nation, and they are forcibly discharging sickle cell patients after the requisite 3 doses, no matter if they are still in pain, or even if they have other issues going on. Although the pain might have brought us in, sickle cell patients are at risk for a ton more complications and should have the right to a full assessment by the doctor.

Okay, before I get hit with the firing squad let me remind you---I work in the medical profession. So I see on a constant basis how we in the 'med profession' have a nonchalant attitude towards pain. If it's not your pain, you can't relate to it. So just try to help the person and stop hoarding the pain meds like you are paying for it our of your own pocket.

Yeah, it sucks the way hospitals and med. professionals treat us. I once was made to crawl out of the ED on my hands and knees, I was in so much pain and they just ignored me and watched me crawl.

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...the supposed greatest nation in the world, and this is not the case. I've been verbally insulted, abused, stigmatized and disrespected, all because I was lucky enough to have an abnormality in my DNA chain. 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 patients 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.

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Permalink Reply by Nina on August 21, 2009 at 5:53pm

Girl, I finished reading this in tears. I just feel like whatever I say to the docs they just look at me and I can see on their face the disapproval of my behavior to get as educated as I can to advocate pro my baby boy. I can tell you that always when we have the routine hematologist visit I get sick days before and when we back from the doctor's office I just be quiet and my husband always ask me if I'm ok.
J it's so painful to see how the doctors behave. That's why my husband and I are trying to do our best to manage my son condition at home and we thank God and this community for the strength because it's hard.
You know something that make me sick? The racism against African people. Another day I was discussing with my husband how ignorant people are and thing that only blacks came from Africa, J. Where this people live??? What this people read?
I think we, SCD patients and parents have to be together and do something to change this discrimination. I already told my husband the next time I meet a new doctor I'll open my mouth and I hope they listen to me, because if they don't I will keeping looking until I find somebody that is a real doctor and care about the patient health.

Attachments:

• Effect of zinc supplementation on incidence of infections and hospital admission in SCD.pdf, 53 KB
• ZINC SUPPLEMENTATION AND GROWTH IN SCD.pdf, 164 KB
• Nutritional therapy and infectious diseases.pdf, 334 KB

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Permalink Reply by B. Jewell on August 23, 2009 at 3:29am

Regarding the post by Sickle Cell Warrior:

ALL I could say is, "Amen to that, sistah." I shook my head at what you wrote about what the nurse said to you in California, and the other issues about being undermedicated. We have all had similar experiences and I have had experiences myself that make me think back and wonder why I didn't sue their sorry asses for negligence. Undermedicate me, send me home, then I end up back in the hospital days later at another hospital because of an infection that was left untreated. No wonder I was in pain!! I don't take anything laying down anymore. I wish I could get some legislation for Sickle Cell patients that would allow doctors and nurses to be fined for poor treatment. Then they would be washing our freaking feet with their hair to make sure they aren't reported.

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Permalink Reply by B. Jewell on August 23, 2009 at 3:22am

I think this is great. At the clinic/hospital I'm seen at there is an ongoing clinical study about the stressors and issues adult SC patients have with seeking healthcare. They ask questions such as, "If I tell my doctor I am in pain, what is the likelyhood my pain will be adequately managed in a timely manner..." You rank from very likely to totally unlikely, and so on.

(1) What issues are you having with self-management at home? I no longer have many issues with pain mgmt at home since I am on a long-acting medication for chronic pain, and have a good med for breakthrough pain as well. When my short-acting medication no longer relieves pain, I know its time to go to the hospital. Fortunately, I haven't had to go to the ER in 7 mos.

(2) With health care providers? (doctors, nurses, clinics)? I don't have issues with doctors very much, since I am at a teaching hospital that has a direct relationship with the adult Sickle Cell clinic, which is in the same healthcare system. In the past, I have had issues with doctors accusing me of being drug-seeking, but to be frank that was back in South Carolina where there is a lot of miseducation about African-Americans with SCD and also subtle racism/discrimination. I have a high tolerance to narcotics and sometimes have difficulty obtaining the dosages necessary for pain relief when I am dealing with a new resident in the ER. The good thing is that my doctor has been notified of this and all of my medical records have been adjusted to reflect my tolerance, so that the attending physician knows ahead of time.

(3) With pain medication (or lack of proper medication)? I find it aggravating that I run out of short-acting medication when I am in a lot of pain at home, and that the clinic will not prescribe enough to realistically last me until my next visit (remember my high tolerance). But, I understand what necessitates this. If a patient is going through so much medication at home as to run out of their prescription in between appts., then he or she needs to go to the ER or see the doctor at an appt. That's also why some medications aren't prescribed by clinic docs for at home use.

(4) Anything else that pisses you off about healthcare treatment of people with SCD. It pisses me off when nurses on the floor or in general act like they can feel your pain. I have had a nurse tell my attending physician to turn down my PCA because I "don't need all that." I was NOT oversedated, I was not "loopy," and frankly I think she herself has issues with alcohol and drug abuse. My pain ended up getting so out-of-control that my new nurse for the evening had to spend all night coming to my bedside dosing me by hand. Needless to say, I filed a complaint the next morning on the nurse and had her removed from my care. I also explained to the doctor the next day my issues with her. The doctor couldn't even justify why the PCA had been decreased, noting my hourly pain levels as still being at a 7/8. The nurse must have made up something over the phone to justify new orders to decrease it. Anyone who treats me harshly or inhumanely had better kick their tires and light the fires, because I don't play.

I will go through the chain of command to see that my complaints/issues are heard. Don't go into healthcare if you don't care. If you're just in it for the money like most nurses are, then you will be found out by the way you treat patients. Believe me, I know because I went into nursing-I actually love caring for people, and though I'm not done with my degree (4 classes left), I have been at many bedsides. I also saw a lot of classmates in it just for the money. Its really a shame, especially for SCD and cancer patients who have to deal with them and fight a painful, debilitating disease. I plan to write a memoir in the future just for the healthcare sector about my issues with seeking treatment for SCD, and about the stereotype that runs rampant through the healthcare community that we are mostly drug-seeking. The truth is that many SCD patients are undertreated and mismanaged by ill-advised general practitioners and over-worked hematologists. Their pain is rarely managed appropriately at home and in the hospital.

Oddly it seems that cancer patients are never doubted when it comes to their pain. What is the irony in that? How can you doubt someone who is born with a painful affliction versus one who was recently diagnosed? I am not saying cancer can't be painful or deadly, but I am saying that we (SCD patients) shouldn't be treated inadequately when it comes to the two diseases, especially when we are often coupled in treatment under the same physicians (hematologists/oncologists). This creates a sort of "hierarchy of needs" among the patient base, and often results in undertreatment of the SCD patient population in comparison to the cancer patient population. Sorry about the soapbox, but you see my point.

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Permalink Reply by P.Allen Jones on August 24, 2009 at 10:35pm

I see your comments and I'm making notes to submit them as one complete response......Keep it up!!. Thanks

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Permalink Reply by P.Allen Jones on August 31, 2009 at 2:21pm

See my blog at http://sicklecell-ourvoice.blogspot.com/ for your comments. These were sent to Johns Hopkins medical center to be compiled into reports for training material.

More info to come.
Thanks for your input. You are helping people with SCD all over the country!!!!!!

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