I Saw His Face Before Me: Living with Sickle Cell Anemia

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And with that, Jasmin offered a rousing sendoff message for researchers. September is Sickle Cell Awareness Month. Learn more about sickle cell disease and clinical trials at:. Receive latest updates. To sign up for updates or to access your subscriber preferences, please enter your contact information below. Washington, D. Skip to main content. Drug Pricing Emergency Preparedness and Response Fraud 2. Global Health 7. Grants and Contracts 2. Health Data 2. Health Insurance Reform 4. Health IT 4.

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HHS Administrative Holidays and Observances Mental Health and Substance Abuse 8. Opioids Prevention and Wellness Programs for Families and Children Public Health and Safety Research Value-Based Care 1. It can reduce the number of white blood cells, so patients require blood tests every month or two. To work well, it must be given at the maximum tolerated dose, which patients build up to over about six months. As a result, sickle cell patients who might have avoided vaso-occlusive crises and the ER wind up there and, often, as hospital inpatients. After her last vaso-occlusive crisis, Trimnell was admitted to a Florida hospital.

Her doctor in California phoned the hospitalist at 3 a. A number of efforts are underway to fix a system that is letting patient after sickle cell patient die. Goals include improving ER care, including by educating staff about the disease. First, I am so sorry to hear what happened to your husband. Sickle cell disease is a life-threatening condition that requires vigilance. As a medical laboratory scientist who worked for years with two Hematologist MDs, I have always been aware of this condition, having seen these cells on a microscopic level, and observed the human agony first hand.

They are NOT in to science.

They somehow dissociate themselves from the role these cells have in the symptoms suffered by the afflicted. I am left to wonder about the training these ER staff, including MDs, have received. Individuals with Sickle Cell and any other hemoglobinopathy should be followed regularly by a Hematologist MD. Sadly, present day insurance companies may balk at that, so they are complicit as well. Best wishes.

My husband died in the ER two months ago. He experienced all of the horror in this article and I remain in disbelief.

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  4. They ignored his cries, my calls for help, and waited until he was dying in my arms to tend to him. I felt like they treated him like an addict in withdraw or something just ignoring a grown man clearly in pain and showing signs of dehydration. I found myself yelling at them about the clear racism and lack of care after he was gone. They only tried to resesitate a dying man, but never tried to prevent that state.

    My husband died in terrible pain and my health insurance paid them 24k to let him die in pain and only try to bring him back after he was gone. This is wrong. He arrived in an ambulance and went fatal minutes later.

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    Within that timeframe all they did was check his temperature, blood pressure and oxygen through tht finger thing. Nothing else. Please keep up the fight. Someone has to care. This is really tragic. I myself have a condition that would give a new physician pause to treat, for similar reasons. One tip, to make your own life and your physicians SO much easier: always get paper copies off all of your medical records.

    Keep them in a safe place, and always bring them with you. That is proof of your condition, and you will no longer be treated as potentially drug seeking.

    Sickle Cell Association Of New Jersey

    As I read this article i could only break out in tears because of how close to home this hit for me. There are times i just want to surrender because its so hard to get good health care and treatment.

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    I cannot seem to find a doctor who will treat Me like i have a disease and not a drug addict. I once waited 14 hours in the emergency room. They say priority goes first not since when does a person with a hangover present as more serious than a crisis. Wow, my brother just went through this in Texas. He almost died from the lack of care he received at a hospital in Katy, Texas.

    Not only did they not give him pain meds, they NEVER hooked an IV up to him to give him fluids, and they basically never gave him proper care. Then they released him with his pain not managed at all. He heard nurses laughing at him in the hallway because he was screaming for help. He begged them to take him to another hospital, which eventually one of them asked a supervisor and they did. Once he got to that hospital, the Doctors there informed him that he had pneumonia in his lungs and that it was from the lack of care from the hospital he was just at.

    I am calling the newspapers and the news stations and reporting them. It is one thing not to get proper care in the ER but to have nurses laughing at your pain is just plain cruel and should never happen to anyone. I have sickle cell myself and I live in the same area as your brother. Please, if you can. Inbox me.

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    I want to make sure he files the complaint properly. Hello, my brother just had an awful experience with his sickle cell and a hospital where he almost died. What is SM?? I would like to post his experience on there if I can.

    sickle cell disease

    Thank u in advance. Wow — I thought other chronic pain patients had it bad. What an enlightening article. I am so sorry to hear this is happening. In the ER, I was always asked — what does your doctor prescribe and what has worked for you in the past? After verifying that my doctor recommended it, they would give it to me some nurses would always give you dirty looks, or speak to another nurse, very loudly so that you could hear them, about you being an addict.

    A year ago, you specifically asked me to tell you which medicine at what dose works. Also, the more I advocated for myself, the more they said I was exhibiting drug-seeking behavior, just like the gentleman in the article stated.

    Unfortunately, I will suffer for days on end in bed and miss work. Apparently ER doctors and the government prefer that I lose my job and suffer over giving me a small dose of a medicine a few times a year that has never harmed me in the past. Again I am so sorry to the sickle-cell community. We need help from the medical community, the government, the legal community, ANYONE, for all pain patients, who are We are dying and suffering, mostly in silence, which is why journalism like this is so important.

    Stolen Child

    By Helen Branswell. By Megan Thielking. Alexis Thompson, president of the American Society of Hematology.