Anybody who didn’t already know the meaning of the word chronic quickly learns when diagnosed with RA. If you’re sick, acute is better than chronic. Acute means you’ll probably recover; chronic means, “welcome to your new world.”
Chronic: marked by long duration, by frequent recurrence over a long time, and often by slowly progressing seriousness
Acute: having a sudden onset, sharp rise, and short course
RA isn’t the only chronic disease.
After I was discharged from my recent hospital stay, I read the radiologist’s report on my CT, then used Up-To-Date and Mayo Clinic to learn what some of the terms in that report meant. Frankly, I was confused. From what I’d read, it sounded like the findings suggested one diagnosis, but the radiologist’s final conclusions named a different diagnosis.
At my follow-up appointment, I didn’t challenge anyone. I didn’t take in reams of printouts off the internet. I simply asked, “The CT report says there’s necrosis. From what I’ve read that sounds like chronic pancreatitis instead of acute. Obviously there’s something I’m missing. Could you explain the difference between the two conditions?”
His off-the-cuff answer was that there’s probably a typo in the CT report. Then, to answer my question specifically, the doctor looked closer at the report. Instead of answering the question I voiced, he ordered a second opinion. The following week I had an additional CT to see why I was still having symptoms (pretty soon I won’t need a flashlight at night; I’ll just glow in the dark). At my follow-up appointment after the second CT, I was told that it looks like this is chronic pancreatitis.
My insurance company’s description of chronic pancreatitis includes this gem:
Not what I wanted to hear. How soon? What can I do to increase my odds? Is there any information on this?
The number one cause of chronic pancreatitis is alcohol. I don’t drink. How could I end up with this diagnosis? Is it the gallstones? Nobody ever told me – ever – that there could be complications this serious from gallstones. All I heard was that the stones would probably come back. If it became a problem, I should have my gallbladder removed.
The reputable medical websites tell of many complications I’d never heard of, but none of the words convey the gravity of the situation to someone who doesn’t know the possible results of these terms:
NIH - “The chance of symptoms or complications from gallstones is low…” …inflammation of the gallbladder, infection of the common bile duct, stones in the bile duct, and pancreatitis
Mayo Clinic – inflammation of the gallbladder, blockage of the common bile duct, blockage of the pancreatic duct, gallbladder cancer
FamilyDoctor.org – “Without surgery, the gallbladder can get infected. It might even burst open,
causing further problems.”
Johns Hopkins – inflammation of the gallbladder, stones in the common bile duct, inflammation of bile ducts, pancreatitis, cholecystenteric fistulae, Mirizzi’s syndrome, and porcelain gallbladder
These sites should be clearer: “Gallstones can cause inflammation of both the gallbladder and the pancreas even when no symptoms appear to be present. Over a long period of time, this can permanently damage these organs and could lead to death.”
Part of me wants to be mad at my doctor. He never told me it could be this serious! I really thought it was okay to wait, as long as the gallstones weren’t causing additional gallbladder attacks. If I’m honest, though, I don’t know what I would have done if he had told me. I was pretty firm in my resolve to avoid surgery unless absolutely necessary.
Chronic. Serious. Poor prognosis. Not what I wanted to hear.
To be continued…