Do you know why I could report my lab scores in my last post? Simple: I tell my doctors I want a print out of my bloodwork results. For years I never considered doing this, but at some point I got fed up with throwing out my arm for yet another needle, getting the bill for the copay –and having nothing concrete to show for it.
Moreover, I felt that going from doctor to doctor there was a risk of no continuity, no history, no comparisons, no full use being made of the data available. And there were some oddities I felt needed investigating and explaining.
I’ve had conscientious doctors and I have had blunderers. And I’ve finally recognized the obvious (well, when it comes to adults, anyway):
No matter how good your doctor is, no one, and I mean no one, cares about your health as much as you do.
So get your results and hold onto them. It would be nice to have a Permanent Record, like the legendary thing that people my age always heard about in school (better not do x,y, and z: it will go on your Permanent Record), with all your health info, all that data collected at great expense, readily available, but there is no such thing. The best you can do is get hold of the few scraps the medical system is willing to give you — or to let you purchase.
You may not understand all of it (I sure don’t), but you can learn a lot on the net. The big thing though is to note any Hs [Highs] or Ls [Lows] or highlighted or checked lines, look at the normal range, and if your numbers are way off, ask your doctor, what do these scores mean? If she says it is something to watch, then you watch it too.
This is what can happen if you don’t:
During my PBC diagnosis odyssey (see last post), I remembered some weirdness that went on when I was hospitalized with pneumonia five years previously in spring 2001. Gall bladder tests were ordered — for pneumonia? I never got an explanation and was too sick at the time to pursue it with either the family doctor who admitted me or the pulmonologist who took over. I had follow-up visits with both after my release, and neither discussed the tests. So I mentally filed it under weirdness. My family doctor quit practicing within the next year or two.
In 2006 I decided it was time for a closer look. I went to the patient records archives at the hospital I’d been in, and I paid for records of my visit.
This is what I learned: Way back in April 2001, when I had pneumonia, my alkaline phosphatase (ALP) reading was 445 (norm 39-118). Remember, elevated ALP is one of the, if not the, biggest red flags for PBC. What the doctors I saw in the hospital did was order an ultrasound and CT scan to check out the biliary tract and a HIDA (Hepatobiliary Imino-Diacetic Acid) scan to evaluate the gallbladder. The doctor’s notes for my last day in the hospital allude to waiting on HIDA results and considering an outpatient bone scan, but I never heard anything about these results or further studies.
These wouldn’t have diagnosed the PBC, but that’s not the point: when tests don’t show what the doctor is looking for, then those results should prompt further investigations. Good doctors don’t just shrug their shoulders and forget the problem that caused them to order tests in the first place.
Moreover, I was never told my alkaline phosphatase levels were out of whack.
Five years would pass before I first heard or saw the words alkaline phosphatase.
What does this mean:
It means I could have been diagnosed with PBC — I could have started treatment –– in spring 2001 rather than winter 2007.
I like to think if I had left the hospital with copies of my labs, rather than returning there 5 years later to get them, I would have asked the right questions: What is this Alk Phos total? Why is it so abnormal?, and that I would have pestered someone until I got some answers.
By the way, the charges for the diagnostic tests no one followed up on: Nuclear Med Diagnostic: $891.25. Ultrasound: $189.25. Nuclear Med: $120.75, CT scan: $1,169.75 = $2371.00. Complete waste.