Sickle Cell Warriors


 Breaking News
  • VOICE Crisis Alert App VOICE Crisis Alert App The VOICE Crisis Alert app is the first national app created for patients and families with sickle cell disease. The app stores all its data locally...
  • World Sickle Cell Day 2018 Hello Warrior Family! Don’t forget, today, Tuesday June 19th is World Sickle Cell Day. This was specially designated by the World Health Organization in 2009 to improve the education, research, and...
  • SCD Adult Support Groups in Southern California California Warriors, great news! Cayenne Wellness is now hosting monthly support group meetings in Fresno, San Diego, Los Angles, Loma Linda, and Antelope Valley. You get to meet others with...
  • Tracing sickle cell back to one child, 7,300 years ago Tracing sickle cell back to one child, 7,300 years ago Check out this amazing article by Nalina Eggert of BBC News for a journey of SCD from 7,300 years ago.  The...
  • Meet Brittany: Caregiver, poet, and writer This week’s warrior in the spotlight is Brittany Hightower.  Brittany is a caregiver who is beautiful, intelligent, and passionate about poetry. And oh yeah, she has sickle cell. How old...

Taking Control of Your Medical Chart

How many of you have ever requested your medical records? Do you know what is in your medical chart? You legally have the right to view your chart anytime, from labs, to reports, diagnosis, medications, doctor/nurses notes. In addition, the records department of your hospital can help you decipher the medical jargon and break it down for you to comprehend.

Most of the time, you the patient are given a brief synopsis of what is going on behind the scenes. But to take control of your sickle cell management, I heartily recommend that you get your chart and study it to understand the full picture. For example, I knew that I had an antibody incompatibility, but it wasn’t until getting my chart and discussing it with my doctor that I was able to fully comprehend why it takes 12-24 hours to cross match my blood. Other simple things that you may learn are things about your medical history that you didn’t even know before, like the reason the doctors held or gave a particular med, what the nurses’ impression of your hallucinations where (in my case what the full range of my hallucinations where), which gives you a greater understanding of how to manage your care.

You should know what your normal Hemoglobin/Hematocrit is when sick and when at baseline. You should know what your usual medications and doses are. You should know what procedures and operations you have had in the past. You should know what complications you have suffered due to sickle cell. These are things that you should know, because the more you know, the more input you can have into crafting the best care plan for yourself. You know that Morphine gives you constipation which can then develop to an ileus. As a result, you can advocate stool softeners, prune juice or less morphine to prevent this complication. You know that Dilaudid makes you itch. As a result you can advocate Hydroxyzine or Benadryl.

What if you end up going to a different hospital or clinic? Even if it takes a few hours to get your records from your old facility, having your own personal copies of your records will facilitate your care and perhaps even smooth things along.

Remember, when you are sick, you are mostly ‘out of it’ with the pain meds. So when you get your head right, ask the medical records department for your chart and peruse it carefully.

So please my dear warrior, become a self-empowered patient and take control of your medical chart. It’s yours, so learn it, study it, and question it.


About Author

Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

Related Articles


    ANTOINE May 15, 18:29

    TELL ME does anyone know what are the bilateral agreements or international laws that obligate a country – and there primary health institution, medical records DEPT, to give you your med records, I live in a very pertaining to international laws , lawless country.

    ANTOINE May 17, 17:46

    I recently went to get my a portion of my medical records, from a prevouse admission, I would just like to know with all others out there , dose your primary health institution , charge you for your medical records, E.G = $1 – per page, if it dose is there a way around this, also while I was on the ward , I asked for my med notes and the nurse sed no we do not give patients there notes while on the ward, dose your hospital do this, IM sure it’s against the law, in the U.S – but I do not live in the U.S , and I am not sure if the country that I live in is prone to bilattirale agreements that all first world nations are prone to, seeing as how this is a 3rd – emerging market nation. THANK YOU

  3. Sickle Cell Warrior
    Sickle Cell Warrior Author May 17, 22:43

    You should ask your doctor to request your records. Then you can collect it from him. They won’t charge your doctor the $$$. They usually don’t give you your medical records on the ward, you can ask for your lab results; but for everything else, you have to wait until you are discharged and get it from medical records.

    ANTOINE May 20, 22:04

    THANKS FOR The info SCW.BUT as a sickler with not that much admissions to the hospital I do not have primarry doctor, that I go to, althoght I do go to a private practice when it comes to things like my foot ulcers, from time to time, I will ask them if thay can get my notes.

  5. Joyce
    Joyce September 05, 04:02


    Am a sickle cell Patient. I don’t know where you are based but where am from (Nigeria)you can’t ask a doctor to give you your medical chart… You why? They will not answer nor attend to you.

Write a Comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.


Support awareness & education for SCD

WordPress › Error

Error! Donation amount must be a numeric value.