About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Thursday, March 28, 2013

The Scoop on Finding a Great Doctor

"The good physician treats the disease; the great physician treats the patient who has the disease."
                                                                                                 -Sir William Osler

I often get inquires from various sources asking how one goes about finding a great doctor.  Let me assure you that soon I'll find myself in that same position as well and I absolutely dread it.  After all, I'm in a pretty good situation, doctor-wise, for the most part.  (It took me long enough!)  When we moved to our "little town" - with it's freakish excellent medical care and a long story as to how THAT came about: for humanitarian reasons I'll spare you.  My doctors were, on the whole, about ten years older than myself.  Now it's time for that crop of doctors to retire and it scares me for many reasons.  Recalling how I went about building my arsenal before, and in thinking about what will soon be, I've come up with some tips as to how to go about trying to find those "treasures" out there.  I hope the following tips will be of help.  Here we go: Drum roll please!

  • Probably familiar to all is the referral from a TRUSTED family doctor who knows you as a person, not just as a number or a disease and knows the "inside story" as to who's "good" and who's not so good.  This came in handy (understatement!) when our daughter became so deathly ill.  We trusted her local GI man but he said he wanted her to be at the other, farther away  "major medical center" when her colon blew (not IF, but WHEN).  I was shocked because we had already discussed that as a vague possibility and that she might need to be sent off to a city an hour away from us and one always hears about it on the news.  But he was adamant about her being a MMC 3 hours away, because, he emphasized - looking me straight in the eye with no joking about - that he wanted her to be known to whichever surgeon would be doing the inevitable surgery when the "unthinkable" happened.   He wanted her to be known as so-and-so, who loves music, teaches children with severe autism, loves to travel and so forth.  He most certainly didn't want her to be patient number #24601.  (Did I accidentally assign my daughter Jean Val Jean's number?  I think so!)  And how right he was.  Her to-be surgeon saw her at least once a day with his "fellow" seeing her, separately, once a day as well.  She was well known when she was rushed to emergency surgery when that sucker blew and we were all so thankful to her GI who had such wisdom and courage to demand she go to the "best place" in the US.  Furthermore, when *I* started to "negotiate" for bits and pieces of her colon, my daughter calmly said, "nah, take it out!"  She had THAT much confidence in her surgeon. (I'm sparing you the screaming in pain that went on with that "nah, get it out" bit.)
  • "Nothing succeeds like success."  Word of mouth from family and friends can be extremely valuable.  You are looking for a doctor who will treat all of you, not just an organ or a hormone level.  If someone you know and trust has had great results consider going to that doctor for a work-up and treatment.  (See the Osler quote above.)
  • Do your homework.  You want a doctor who is extremely competent and with excellent credentials.  Make sure that the doctor is board-certified in his particular specialty and if possible, credentialed in pain management by the American Academy of Pain Management or certified in Pain Medicine by the American Academy of Pain Medicine.  That's a good start.
  • Make sure you investigate your prospective doctor's office policies ahead of time if at all possible.  Get a feel for how long the initial visit will take, how much actual face time you will have with the doctor, whether a nurse practitioner or a physician's assistant will be involved in your care (instead???), how much the visits will cost, and whether or not the doctor accepts your insurance coverage.  I've found that there's nothing worse than going to a specialist and finding out that there has been a bait and swich. You want to see the doctor you plan on seeing, not someone who was simply trained by that particular doctor.  Worse, you want to see the doctor you plan on seeing and not be shoved off to a physician's assistant.  I don't have a problem with PA's and so forth if 
  • it is a minor matter and not for my CFIDS/fibro/endocrinological/neurological, etc, care 
  • I see the doctor whom I've dished out a lot of money to see and traveled a long way to help me.  Some of you would die of horror if you know which doctor did this to me. 
  • You want to make sure that an initial visit will be long enough to deal with your problem in great depth.  I see my GP for almost an hour each time, which is why he always sees me at the end of the day, knowing how complex my case is.  (OK, he also like to rattle my chain, but that's a small price to pay, especially since I like to rattle his chain as well!)  My endocrinologist's office assistant is upset with me, I think, because the endo spent at least a hour or so with me this last time; remember: he needed to deal with my usual HGH problem, the new hypothyroidism problem and the reality of having had gall bladder surgery and what THAT was doing to my hormones.  Furthermore, since things weren't going well with the thyroid and I am/was convinced that we are on a "Hunt For Red October"*, we needed to make a plan as to how we would proceed.  *I* was ready to scream "uncle" in order to get out of there, but there was a lot that had to be gone over.  And finally, my rheumy takes between two and four hours for an initial visit, but then he sees what I call the "train wrecks."  I hope this gives you a good guide for what is reasonable and unreasonable.  Hint: 20 minutes is absolutely unreasonable for a big problem. In fact, if all you get is 20 minutes with the doctor, you are being cheated - get out of there fast and find someone else, pronto!
  • If you are complex and require a lot of time with the doctor, make sure that enough time is allotted for him to evaluate you thoroughly and for him to answer all the questions you have.  This is especially true when you consider that you don't want the doctor to allot x amount of hours, or x amount of minutes and then feel as if you're getting the bum's rush because he has a waiting room full of patients yet to be seen.  If  you are a complex case, you might let the receptionist know that you are going to need a lot of time.  If the answer to your question as to how much time does the doctor spend with you, total, is minimal, run - fast! - to another doctor. (This is experience talking here, not just run-of-the-mill hypothetical situations.)
  • Do NOT go to a doctor ONLY because he is in your insurance company's network or he is "preferred" by your third-party carrier.  All too often, this doctor will unintentionally short-change you because there are quotas which need to be met and all sorts of corners which need to be cut when you have a third party, all because the bottom line is at stake. Third-party payers come between you and your doctor. In my humble opinion, you get what you pay for, but there AREexceptions to the rule.  Our family has made sacrifices and continues to give up a LOT of things in order to pay my doctor and medicine bills.  Priorities need to be made.  Our family's priority is the best medical care we can find, especially for me, since I have a 38 year history and a LOT, LOT, LOT of baggage.
  • Make sure the tests your doctor orders or does not order, are based on your doctor's clinical judgement, NOT because he is being pressured by the insurers or the government when it comes to making these decisions.  In other words, will the doctor fight for you or kowtow to those higher up the ladder.  When I had my tonsils taken out, it should have been an in and out thing.  No biggie.  However, I couldn't swallow anything at all, be it from the infamous ice cream to my own saliva.  My ENT surgeon fought my insurance company tooth and nail for what turned into a 5-day ordeal.  But do you see how you need someone who WILL take on the system?
  • It's a great idea when the doctor wants your records sent to him in advance so he can review all before you are seen.  This doesn't insure that he WILL indeed read all beforehand.  I was furious when I realized that a certain so-called specialist read my very complex history (which took a huge effort on our part to collect and put together) as I waited for him in the waiting room. And he still managed to get facts wrong in his follow-up letter.  Scary!  But see if you can ask around and find out if the info sent beforehand is indeed read well ahead of time.
  • Be prepared to pay out-of-pocket for the care that you need, no matter how complicated your case is, or especially if your case is complicated.  Oftentimes, several patients who have the same diagnosis require vastly different treatments based on the unique characteristics of each patient.  Don't be bamboozled by rhetoric that suggests that a treatment will work for you despite evidence to the contrary.  (See link for the scientific method.)
  • This is not the time to be politically correct.  A good doctor does not mind a frank discussion concerning your medical problems and he is not offended if you tell him that a treatment approach is not working.  If the doctor you have chosen gets haughty and defensive after you communicate with him honestly (and respectfully) find another doctor.  (Then see steps the steps above!)
  • When you see your doctor for the first time, try to be on your best behavior. This might sound insulting, but you'd be surprised at how rude some patients are. Newsflash: Most doctors would be happy not to see another fibro and/or ME patient ever again.  Hear me: EVER!!!  Let's face it, just about every other type of patient is easier to treat than we are. 
  • Too many of us who have CFIDS/ME/CFS and fibo, have a chip on their shoulders for various reasons: divorces, bad doctors, loss of jobs, financial concerns, a huge amount of pain and so forth.  Don't take it out on the world and don't take it out on your doctor.  Now if your doctor messes up with social niceties, and does a rotten job to top it all off, THEN I can sort of understand a bit of "speaking up." But try to remember you'll catch more flies with honey than with vinegar (sorry about the cliche).
And finally: don't give up.  It is your life, fight for it.

As always, hoping everyone is feeling their best, only better.  Ciao and paka! 

(Note: the sweet dog pictured above was a "healing dog" part of the "major medical center's" program to visit those who'd had surgery. More on that later if you wish to hear about it. There IS a funny story involved.) 

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