Sikcell: People living with Sickle Cell

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How do you keep your record of your sickle cell?

If you have sickle cell disease, you will have to keep records of you sickle cell and how you look after yourslef. Do you keep any records? How and where do you keep this information?
What information do you keep?.....Last crisis, duration, last Hb or retics, which medicine worked for pain, HbF level, Your TRJV (tricuspid regurgitant jet velocity) etc.
Is it important to keep this information?

Do you rely on your local physician or hospital? What happens if you travel away from base and have a crisis? What key information do you carry with you to better inform your emergency helathcare provider so that you get the best care possible?

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Permalink Reply by Sickle Cell Warrior on December 23, 2008 at 8:38am

I have all my discharge summaries from my last few years of hospitalizations. I always ask for the discharge summary, the one that the doctor has to dictate before I leave. This has all the info about the hospitalization on there, the pertinent labs, what they did, xrays etc. I have all these in a folder that I take with me to every hospitalization.

I don't rely on my local anything, since I travel alot, it's better to have my records with me. Anytime I'm going to the hospital/ER, I always go with a bag that has a change of underwear, toiletries, magazines, some pain meds, snacks, water and my med. records.

Although...I haven't had to do that in long, looooooong time!

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Permalink Reply by Austyn Hart-Tinsley on May 25, 2011 at 4:32pm

What I do is have a pocket sized notebook that I write in every day. I call it my Body Book. I write what meds I take how I feel and the pain level and location. I also write what I eat and drink that day and if I exercise. It helps went I go to the Dr’s I can just show them my book and if they have any questions it’s all right there. I try and write in it every day so I know what signs to look for and what I can do to improve my health. I also have a problem with memory because I have had a few strokes in my short life span and that also helps me to remember thing that are important. My Body notebook helps me keep track of what medications I’m currently taking. If I have pains, how bad they hurt and were hey hurt. I find it to be a great help and my Dr’s seem to love it. If I every end up in the hospital that goes in there too with what treatments I got and my CBC. Hope that helps.