Mind Mapping & Staying Organized for Hospital Visits
Have you ever caught yourself lying awake in the middle of the night, going back to months ago to find out what went wrong? Or preparing a session with the hematologist while being in your bed, putting everything together, and when you are at your initial meeting you don't even remember half of what you were thinking about?
Organizing our medical records
This happened to me a couple of times, and then I decided to do something different. I started a medical folder with all the lab work, all my questions, all my information about sickle cell disease which I have found on the internet, in books, etc. Here is an overview of what my medical folder looks like.
Our medical folder contains several important documents that I faithfully take with me on every visit to the doctor. In the medical folder, I have a map with my daughter's lab results, sheets with questions for the doctor, important remarks, mind mapping sheets, medication she is on, and important dates.
1. Lab results
Keep all your child's medical information in a special folder. I have placed all lab results from the past 3 years in an Excel sheet so that I can see there are abnormal values. This helps you can easily keep track of the baseline.
Here is an example values I keep and how I try to explain to myself what they are about:
- Hemoglobin (g/dL) Lower number mean more severe anemia
- Bilirubin Total (mg/dL) Breakup of red blood cells, a by-product of hemoglobin recycling.
- Reticulocyte Count (%) Measurement to see if the bone marrow is making new red blood cells fast enough. If increased this means more red blood cells are newly produced. This level is always a little high in SCD but will jump up when a large amount of red blood cells dies at once. This is common with both pain and infections.
- Ferritin is the best simple blood test to measure the level of iron in the body. (Very important when getting blood transfusions)
I indicate the moments when she was in crisis with a special color on the excel sheet, so that I know which values are normal in crisis. I also indicate hospital admissions.
3. Questions for the doctor
As soon as I come across something I don't understand, I write it down in a special notebook. In my notebook, I have all my questions and comments so that I can have a healthy discussion with the doctors. I also put information from google in the notebook so that I always have it with me.
4. Mind mapping
It's always helpful to create some sort of mind map so that you can jot down anything that comes to mind, or even just simply comment.
5. Date of pain or discomfort
I keep track of the moments of pain or discomfort that my child experiences. This is so that when I go to the doctor I have everything with me.
The doctor also always asks about the medication your child is taking and the amount (e.g. 400mg Ibuprofen when needed and 1mg Folic acid daily).
Resources that help me navigate sickle cell
It wasn't always easy to understand the importance of knowing the numbers and asking the right questions.
1. Helpful books
But I have read a lot of books about sickle cell disease and I would love to recommend Hope and Destiny: The Patient and Parent's Guide to Sickle Cell Disease and Sickle Cell Trait by Allan F. Platt, James Eckman, and Lewis L. Hsu. with you. The writers explain in a very clear and understandable way what sickle cell disease is, but also the most important information about lab results, treatment methods, etc.
2. Sample spreadsheet
Here is an example of the excel sheet. Remember, this is just an example of how you can keep a record of your child's numbers.
|Date||Visit Type||Normal Values||Lab Results||Hemoglobin (g/dL)||Reticulocyte Count (%)||Bilirubin (g/dL)||Ferritin|
|01/25/2019||Pain crisis, ER Visit||X||X||X||X||X||X|
|05/25/2020||Pain crisis, admitted to hospital||X||X||X||X||X||X|
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