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.