My Health Care Obsession

My interest in making sure we Americans solve the health care problem in the US isn't altruistic, its personal.

I was one of those "lucky" Americans.  I had employer sponsored health insurance.  I live in one of the health epicenters of the nation, the Raleigh Durham area, having access to some of the best doctors in the world.  I was well educated, generally ate well and yes, I could have exercised more, but had a very busy lifestyle.

Then I got sick.  Its been a real eye-opener into a system that while loaded with kind caring, well intentioned and educated people, is broken, broken, broken.

My first issue was diagnostic.  No one could figure out what was wrong with me.  I am hardly unique.  I watched missed and untimely diagnoses almost kill my brother (liver cancer) and mother(NMS, a non-infectious cousin of tuberculosis).  So three out of five of immediate family have fallen into the diagnostic abyss.

Here were my symptoms.  Overwhelming fatigue from a person that routinely led an up and at 'em lifestyle.  Back pain.  Shooting neck pain.  Numbness in limbs periodically, sometimes lasting for days.  Slow-rolling migraine headaches that would get triggered by something as trivial as an employee wearing aftershave, and take three days to peak with a blinding flash of pain that would make me so dizzy I had to lie down on the spot.  This would be followed by 24 hours of adrenalin style heart pumping.  Muscle aches everywhere--I felt like I had a fever.  Inability to sleep.  Weight loss followed by unexplained weight gain.  Stroke-like symptoms where I couldn't remember simple words, and what was in my head would come out differently when I spoke.

I went to my primary care physician, a lovely lady who tried very hard to figure out what was wrong with me.  She took my symptoms very seriously, as she knew I wasn't a complainer.  She did the basic tests, and other than slightly low white blood cell counts, they were normal.  So off I went to a series of specialists.  I saw an allergist, a gastroenterologist, an orthopedic doctor, a cardiologist, a neurologist, a neurosurgeon (I did have a herniated cervical disc, but my neurosurgeon was sure  that while painful,  the disc wasn't causing the overall issues) an opthomologist, and a rheumatologist.  Eight doctors in all, two whom are personal friends.  Wrote my medical information every time, by hand, on a sheet of paper attached to a clipboard.  Wrote down my medications, probably inconsistently.  New tests every time.  Litttle or no communications amongst the doctors, other than two who were my personal friends. Every form would ask who my primary care physician was.  She received reports from two of the seven. When the tests showed nothing, that was it.  "What should I do?"  I would beg tearfully.  No next steps, no suggestions, usually a prescription to try a different pain medication or anti-inflammatory.  I did get a prescription for physical therapy from the neurosurgeon, and that did prove to be important and helpful.  No accountability.

I don't mean to sound so dispassionate.  In addition to being exhausted, and in pain, wondering if I was losing my mind as well.  For the first time in my very successful work career, I couldn't keep up the pace of constant travel, long hours and global management, which was almost as scary as whatever was wrong with me.  My family life went down the tube, as I would lay on the couch after dinner, which I couldn't eat, and stare into space.   "Mom, what's wrong with you?  You are no fun anymore," complained my eleven year old.  She was right.

My primary care physician tried her best, she did.  Since every time I came back from a specialist empty handed, I would start over on the appointment trail.  She gave me medications to treat the symptoms, such as pain and sleep loss, which turned out to  by sanity savers.    As a new patient, it would take six to twelve weeks to get an appointment with the specialists.   Where possible, she would call the doctor's office and try and get me moved up. Nonetheless, it was a year by the time all the doctors had seen me.  I should add, as it is relevant to what's wrong in health in America, my primary care physician was ultimately asked to leave her practice by the new big company provider that now managed their practice.  After twenty five years in medicine, she wasn't seeing enough patients, and god-forbid, spending too much time with them!

I breathed a huge sigh or relief when the MS tests came up negative, because that had been my greatest private fear.  But now I was also ready to give up, though barely functioning, I resigned myself to living half-a-life.  Doctor number eight, the rheumatologist was different.  She didn't do any blood or urine tests, but she did give me a physical exam, and then asked, "So you mean, what's wrong with you other than your Fibromyalgia?"  Excuse me, could you back up a minute?  "You know you have Fibromylagia, don't you?"  Well, no, I didn't.  She packed me off with a pamphlet of some support groups, renewed my prescriptions (it turns our my primary care physician, in treating my symptoms, had prescribed the standard medications for fibromyalgia, seratonin inhibitors and anti-inflammatories).  In another blog, I'll let you know just how useless that was, but later.

You can't sum up a year of your life, your fears, aches and pains in a few paragraphs, but through it all, I was convinced, there has to be a better way.  Why can't these doctors read each others notes and see each others tests?  Why don't they actually do like we do in business, and schedule a conference call, or at least start a mail chain?  I didn't know it at the time, but in the midst of my frustration, Axial Project was born.