Medical Record Keeping Is A Necessary Evil
It’s important from the outset of your diagnosis to keep track of all dates of doctor’s visits, scans, lab work results, etc. This information will become critical as your treatment plan develops. This is especially true if you are forced or choose to develop your own plan. Having been down this path with my husband’s diagnosis in 2013, you will soon see that it’s an unfortunate reality that there seems to be no clear path to follow to treat carcinoid cancer / NETS. We’ve had to go from treatment center to treatment center in search of answers and hope. Having all of your medical records in order has made it so much easier to move quickly and shift gears as new treatment options emerge. Here are some tips that may make it easier for you:
Create a chronological list of all scans, labs, procedures and drug treatments that you have undergone. If you are several years into this, start from today and slowly work your way back to your initial diagnosis, as you recall the details of your illness. Make sure to keep it current as you progress through your treatment. This will save you a lot of brain cramping (Ha!) as you try to remember dates, doctors & other pertinent facts if you decide to shift your treatment to another facility.
Make a separate list of all of the doctors and facilities that have treated you. This should include each doctor’s name, facility name, address, phone number and fax number.
Make a separate list of all medications that you are currently taking. Write the name, dosage and # of times daily that you take it. Make sure to keep it current going forward.
Label every page. Make sure to put your name on top of each page of the records listed in #1, 2, and 3. I use Word and Excel to maintain my husband’s record. Use the header and footer features to repeat your name on each page and also insert page numbers. The page numbers are especially helpful if you are making photocopies and the machine jams……or you fax documentation to a doctor and they are missing a page.
Get multiple copies. Make sure that every time you get a scan (octreotide, CT, PET, MRI or other), you get 3 separate copies of the images on CD along with 3 copies the paper report that details the reviewing doctor’s findings of the scan. These images are, from my knowledge, in a DICOM format….meaning that you cannot just put them into your CD player on your PC and view them…..you need a DICOM reader/viewer to do that. I believe there are free DICOM readers available on the web…just be careful…..you don’t want to get a virus on your PC….make sure it’s from a trusted source. Info Tidbit: DICOM — Digital Imaging and Communications in Medicine — is the international standard for medical images and related information (ISO 12052). It defines the formats for medical images that can be exchanged with the data and quality necessary for clinical use. DICOM is implemented in almost every radiology, cardiology imaging, and radiotherapy device (X-ray, CT, MRI, ultrasound, etc.), and increasingly in devices in other medical domains such as ophthalmology and dentistry.} One other point…..I’m not sure, but you may be able to simply copy your scan from one disk to another the same way you would with burning a CD……more to come on that.
Copy Copy Copy Keep 3 sets of all of the records listed above in items #1 through #5. One set should be your originals, the other 2 sets are for mailing out to treatment centers, etc. Obviously, don’t ever give up your original set……this will be the master list that you’ll make photocopies from.
Keep all of your medical receipts together by year. All co-pays, out-of-pocket expenses, prescription co-pays, etc. This will make it easier to see if you can deduct these expenses at tax time. The general IRS rule is that you may deduct any medical or dental expenses that are more than 10% of your AGI (Adjustable Gross Income) from Form 1040 Line 37 (for 2014). Of course, please consult with your tax preparer or CPA for the exact details on this deduction.
Well that’s it. It can become a part-time job trying to get all of this info together in a hurry……but if you get organized now, slowly, it may make things a lot less stressful down the road.
Hope this helps,
Lisa – Use our images on your blog for free – Click Here