Behcet's Disease and Recordkeeping
By: Mary Burke – Behcet’s Disease Patient
Vice President - American Behcet’s Disease Association (ABDA)
Co-Owner/Co-Moderator - Behcet's Support Group - Yahoo.Com
(Private-Members Only-Support Group - NOT affiliated with the ABDA)
Patient recordkeeping is extremely important when managing Behcet’s Disease, or any chronic, rare, invisible illness, etc. Medical symptoms vary from patient to patient, as do the medications used to treat them. Symptoms and medications can and do change rapidly and often.
I cannot stress enough how important it is for patients to maintain records of everything pertaining to BD and/or other chronic illnesses. As time goes by, we forget specific dates and/or symptoms, medications, etc., so it's extremely important to update logs and records constantly. I was diagnosed 30+ years ago, and without my medical records and logs, I wouldn’t be able to provide accurate information to my healthcare providers today.
Following is a list of the types of logs I maintain using an Excel spreadsheet, or a Word Table:
1 - Symptom Log - Mine has date, a list of how BD affects me each day and any questions I have for my doctors. Then, when it's time to see my doctor, I just copy the pertinent information for that appt., and make a copy for both my doctor and me. When doing this, I leave enough room between questions for my notes.
2 - Daily Medication Log - My log
shows all of the Medications I take on a daily basis...mine shows Drug Name,
Number of MG's, Daily Quantity, Date Started, Physician's Name and Reason For
Taking It. My Log is 6 pages long, because it has all this info on it.
3 - "Discontinued" Medication Log - My
log shows all of the Medications I've taken that were stopped. Again, mine
shows Medication, Number of MG's, Quantity, Start Date, Stop Date, Physician,
and Reason for taking it along with Reason it was stopped. My Log is 30 pages long,
at this time. (If a medication is ever prescribed
again, I can simply copy and paste it back into my Daily Medication Log, and
"Take As Needed" Medication
Log - My Log shows all of the Medications I take, whenever I feel I need
them. My log shows the same information contained on my Daily Medication Log.
5 - Allergy/Side Effects Log - My Log shows Medication and Reactions I've had to it. (I copy some of the information from my "Discontinued" Medication Log.)
6 - Primary and Multi-System (Secondary) Diagnosis Log - My log contains both Primary and Secondary/Multi-System diagnoses, along with the ICD-9 Code (Diagnosis Code) used by physicians that is associated with it . (Behcet's Syndrome (Disease), is 136.1, and listed as Behcet’s Syndrome.)
ICD-9 Diagnosis Codes can be found on the following websites:
7 - Surgery Log - My log contains the date, type of surgery and hospital/clinic where they were performed.
8 - Immunization and Test Date Logs: My logs contain the dates of all my shots and annual tests, as well as due dates for those that need repeating, and a brief description of the results. I then record the due dates on my calendar. I have to many doctors, and don’t trust them to keep the information accurate. NOTE: It’s difficult to get medical information changed, once it’s recorded, therefore, persistence is key, when it needs to be done.
9 -Take Pictures of any visible symptom,
i.e., ulcers, lesions, purpula, etc. - I attach pictures to my Symptom log.
This is important, because many times are healed by the time you see the
10 - Where should I keep copies of my logs??? I have printed copies of ALL my logs in my car and in the box where my medications are kept. In case of emergency, I've informed my neighbors and family where they are. It's important that health care professionals have all this information. I give copies of all my logs to my doctors at each visit.
11 - Maintain copies of all your office
visit & test medical records. Some Clinics/Doctors charge for this
service, and some don't. I have all of my medical records dating back to 1975.
Yes, it's a lot to keep track of, but it's the only way we can ensure our
medical records are accurate...Your patient information belongs to the patient,
and as such, it’s a patient’s right to ask for copies of their
medical records. It’s also important for
patients to review the content of their medical records, and to request
changes be made, if necessary.
I hope the above information helps, and gives you examples of what and how to maintain your medical information.
If anyone has questions, please contact me at firstname.lastname@example.org