Ok class, today's lesson will be on medical records. The photo above is my working file that I always carry with me. It's hard to tell, but the accordion folder is 5 inches thick. I measured.
Being ill is a full-time job. It's not all about lying in bed eating bon-bons (though I must admit it's mostly about lying in bed eating morphine...) But in order to be successful, you must be well organized. Whoever knows me knows this is not a strength of mine, or even a word in my vocabulary. But these days, it can become a matter of life and death. Doctors won't even think about scheduling appointments until they have all of your records, but in this day of specialists, that can mean collecting records from 4, 5, or even 10 different doctors. (Right now I'm being seen by my PCP, her NP, 3 GIs, 2 surgeons, a PA, a Med student, my endocrinologist, a pain specialist and a dietician; plus a neurologist, dermatologist and gyn that aren't necessarily related to my pancreatitis...oh, and a partridge in a pear tree!) It is the patient's responsibility to make sure that all these doctors have all the data they need and are talking to each other, which never happens. All of this is left to a critically ill patient who often lacks the physical and mental faculties, with no good way to collect and share any of it. It truly is amazing in this age of technology that there is no good system in place. We can gather intelligence from hostile countries and shoot down missiles in outer space, but my doctor can't tell you what my lipase was when I was in the hospital 2 weeks ago.
Thanks to a little coaching from my fabulous caretaker Lewy, I have a system set up that works pretty well. But, it's a constant job of maintaining it all, even when you don't think it's "pancreas" related. So, what do I do? First, I had to get copies of all of my records from every doctor and hospital I've been to. Here's one hint if you're applying for disability - request a copy of your file from them. When you first apply, you give the disability company (in my case, Metlife) an authorization to release medical records, so they will contact all of your doctors and hospitals whose name you gave. If you're not going through all that, you will need to get your records from each place individually. They will most likely charge you - probably 50 cents a page, but it's one investment that is well worth the cost. It can save you weeks of time if you're trying to get in with a new doctor. Once I had all that, I sorted my records into 8 categories: Diagnostic Tests (like reports from CT scans and MRIs), Blood Tests, Surgical Notes, Inpatient Hospital Notes, Mayo Clinic Notes (most won't need this category, but I separated them out because they were chock full of incorrect or missing data that I don't want confusing my other doctors), Office Visit Notes, Correspondence, and Other. Some people may choose to just keep everything in chronological order, or by entity (like hospital or doctor). This is what works for me - the 8 different folders, with the documents arranged chronologically within each one. I also scanned every page and keep a pdf copy of everything. I also recommend making a couple of CDs/DVDs to carry with you that you can just hand to your doctor. This, of course, all sounds totally backwards. The doctor/hospital opens your electronic file and prints it out for you. The new doctor doesn't have the same software, so has you FAX them a copy of your records. They then scan those paper copies into their systems. Then they re-print and fax everything to any other doctors who want your information. The amount of paper is just incredible. I bet there are a dozen fewer rainforests in this world just from my medical records! But don't forget the non-paper records too. These can be anything from xray films to MRI images. I have found that it is much easier to just request these at the same time you have the procedure. Sometimes they can hand it to you right away, other times they have to mail it. And I always request 2 copies so I have a spare one to hand over to a doctor at any time. I keep spreadsheets listing the time I take each of my meds (good for knowing when you can take the next dose of pain meds), what I eat, my pain and nausea levels, and also my blood sugar. I'm hoping this will help me figure out what all of my triggers are. So far, the only thing I know is that food is bad - it is my enemy! And recently I've started logging any activity I've had that day. If I do venture out (which is almost exclusively for Dr appts these days), I am typically down for the next 2-3 days. I can make small trips like to the bank or the drugstore as long as I do it before 10 am. After that, I get extreme pain that's hard to get back under control. I also have a small notebook that I keep next to my bed where I can write down questions whenever they strike. My memory capacity is about 2 minutes, so there's no way I'll remember any of it once I actually get to a doctor's office. I also log any phone calls listing the date, time, person I spoke with, and a summary of the conversation. This has been most useful to me when appealing my denied disability claim. Another thing I do is type up a summary sheet, like a cover letter on a resume. It lists all my contact info, a bulletized list of each major procedure/test that includes the date, the doctor and the location, and a list of my current medications and allergies. New doctors love it when I hand this to them. It saves a lot of time and they can ask direct questions about something rather than going through your entire history every time. For people with a chronic illness like myself, telling the whole story can take up a significant portion of your appointment time. Another tip for seeing a new doc is to try to schedule the last appointment of the day. This way, the doctor is able to spend more time with you without worrying about keeping the next patient waiting. The good ones have spent up to 3-4 hours with me. My only other tip is to make good friends with the front office staff. They are the gatekeepers of the coveted appointment book and they can also put your message at the top of the pile if they want to. I've found chocolate works well. ;-) Seriously, bring in a small box of chocolate and a thank you note every once in a while, and they will bend over backwards to help you. And you need all the help you can get!
So...there's my system. What have others done that they find helpful? I would love to hear your comments! I know it's a huge time investment up front, but the maintenance isn't too bad. It only takes me a few extra seconds each time I log food/pain/meds during the day. To me, it's worth it. As I said, being chronically ill is a full-time job and I think doctors take me a little more seriously when I come in well prepared. But, of course, I can't do it all alone. I get incredible support from my friends and family. My kids are very helpful and seem much more willing to do chores nowadays. They also keep their petty bickering to a minimum, or at least in another room. That's certainly one benefit to being ill! Friends and family help out by driving kids to activities, making meals for the family, and bringing me gossip mags and chocolate. :-) And Lewy...he just does it all...cooking, laundry, running the dad taxi, and taking care of me, all while juggling the massive amount of work required to "make sure the flame shoots out the right end". So, thank you my dear, for everything that you do. Words cannot express my gratitude and love for you. Marilyn - you done good! :-)
Well, this post has grown gi-normous, so I'll publish it and update my status in a new entry. TTFN!
