Are Your Providers in the Loop?
Ever played the game "gossip?" Some people call it "telephone." The first person in a line makes a statement or phrase and passes it onto the next person, and all subsequently pass on what they've heard. Rarely, if ever, does the final person have the exact version of the statement as the first person presented. It's a game that gets more complicated while becoming more fun with the more details you add to it. One example is: "my cat brought a lizard into the house." The final person states, "my cat ate a lizard and a mouse."
Great game...until it became my reality with my medical healthcare team! When I fired three cardiologists, my primary care doctor took their files, tweaked meds, prescribed what I needed but advised me to keep looking for a good cardio. Poor gal, she also took care of ordering PT when I fired the orthopedists, one after the other. Then, there's the rheumatologist. Well, after almost four years, it was time to ditch her as she did nothing for me. Her feeble attempts at methotrexate dosing, which made me violently ill, preceded by plaquenil, which I was allergic to (and she knew that), were coupled with her stubborn refusals to allow me to try any biologics. She was following insurance "protocol."
I'd had enough of of her protocol. I called my insurance company and found that their protocol did NOT consist of withholding biologics from me. She had blamed insurance for several years! Wasted years when I could have been warding off the high sedimentation and CRP's from inflammation that were destroying my coronary blood vessels. Once I had four stents inserted into coronaries and discovered my leg arteries also needed stenting. I decided drastic action was necessary.
Most of the problems I was having with my health care providers involved them not adequately communicating with each other. It seemed they cherry-picked labs and notes that I tried shoving under their noses. I recall one day when my cardio told me if my rheumy didn't start "aggressively treating my RA" then he was going to have a talk with her. Ironically, her office was one floor directly above his in a medical office building. I got her attention when I repeated his threat to her. Rather than making a decisive move to treat my RA, she went downstairs and read him the riot act! The cardio wasn't treating me because he was waiting on her to do something about my RA and she wasn't treating me because of my meds I was prescribed by my primary, who had withdrawn from treating me at all until I found a good rheumatologist! HELPPP! My head was spinning, I felt hopeless, hurt from head to toe, was facing more vascular surgery and desperate. I had two shoulders waiting to be replaced, a wrist that needed to be rebuilt from failed surgery and this comedy of errors with doctors was keeping me from making any progress!
This is what I did: I decided to keep my angelic PCP and start all over with a fresh approach. I went to Mayo, found a rheumatologist and cardiologist. I met with them, explained what I just told you, then showed them as many records as I could get my hands upon. The rheumatologist started a biologic, my SED rate/CRP went down 50 points (!) and my new cardio and he had access to one another's records, including notes, medications and recommentations. They met, discussed my case and were able to coordinate my care. Together. On the same page. For my benefit.
Tips from my experience
I realize that it's not possible for everyone to have access to Mayo but here are several things you can do that may assist you and your providers:
1.) It may be a bit tedious at first but get records of your appointment notes. They're not available the day of. Find out when you can pick them up or have them faxed. (Sign your release forms.) Share those records with your other treating physicians. The labs, ESPECIALLY THE LABS, are important. You'll find that you avoid overlapping labs that duplicate one another if you have evidence in your hands of your labs. In lieu of sharing the labs, have your laboratory copy who(m)ever you'd like! They do that! Give them the names of the drs you'd like to get copies of those labs. They will fax them. They're your labs so do it! Then everyone is in the loop.
2.) Many doctors do not even peek at your chart before your appointments. Make sure they do! Ask a question or two about your last visit. They will have to look down at your chart. When recommendations are made, ask them to please copy each of your physicians on those recommendations. If my rheumatologist had something besides my version of my coronary artery catheterizations and stenting, perhaps she'd have taken her job a little more seriously! If my orthopedists paid attention to my labs that showed my off-the-chart sedimentation rates from RA, they would have taken my joint replacements more seriously. They can't pay attention if they don't have that information!
3.) Keep each doctor reminded of your RA status. Doctors need to be reminded of your underlying disease. Many times.
4.) A gentle reminder to have the doctor you're visiting look through notes/labs from other doctors while you're there is very important. Probably the most important thing you can do.
I look back and realize that it wasn't a rheumatologist who first suspected RA. Even after previous primary care physicians had ignored positive RA's, calling them "false positives," (that's another story), the orthopedist who did my arthroscopies on my knees because of severe pain was the Man. He was the one who saw evidence of something far more sinister than osteoarthritis. He referred me to the rheumatologist, who then basically allowed four years to slip through our fingers. The total lack of communication between ortho, rheumy, primary care and cardio were just about the literal death of me. I cannot emphasize enough how important it is that these providers communicate with one another and unfortunately, YOU are the coordinator of that project. Make it happen!
How often you do experience an unexpected boost of energy?