I Don’t Understand

Dear Dr:

This problem with my GI tract has been going on for two months, and the more I learn, the more frustrated I get with how you have handled my case.

Why did your partner do an EGD instead of an ERCP?  From comments I’ve heard, I’m not the only one asking that question.  I really don’t understand.  The scope was already in place – he could have kept going until he found the problem.  That would have eliminated the need for the subsequent MRCP and the second CT.

Once you decided that I needed a lithotripsy, I don’t understand why you would only refer me to big-city when there’s somebody right there in mid-sized-city who does the procedure.  Referring to a competitor when you can’t provide the needed procedure looks like you want what’s best for the patient.  Conversely, making the patient wait months for treatment because you won’t refer to a competitor looks like you don’t really care if patients are suffering.

I don’t understand why you only told the big-city GI department about CT#1 and not CT#2.  Shouldn’t they know about both of them?  I don’t understand why the referral you wrote flagged me as routine so that they thought they could contact me in their own sweet time instead of treating me promptly.

When you wrote that referral, I’d already been suffering four weeks.  I don’t understand why, when it took three more weeks for big-city to call and set up an appointment even further in the future, and I begged your office to expedite the process or find me a different doctor who could do it sooner, you waited another week to respond.  I don’t understand why your response was to send my paperwork to big-city’s medical school, where it could gather dust for a few more weeks before they called me to set up a routine appointment.

You seem to view the fact that my entire abdomen aches and I can’t eat as routine, not serious, and not worthy of your attention.  Why is that?

Maybe you’re not familiar with any of the doctors in the competing healthcare system, but there is a doctor in mid-sized city who does lithotripsies.  He looked at my CT images and said that I needed to be seen promptly.  He even re-arranged his schedule to fit me in and get the procedure done as soon as possible.  He performed the ERCP/EHL last week.  My pancreatic duct was 80% blocked.  Eighty percent!  Maybe you think that’s routine, but I certainly don’t.

When I saw you in the middle of September, I had no idea this problem would drag on so long that it could affect my family’s plans for Thanksgiving.  What’s so incredibly frustrating is that it didn’t have to be this way.  You could have – should have – handled this very differently.

If you had referred me to your competitor, the procedure would have been done promptly, I’d have returned to you for follow-up, and all this would be in the past.  Instead this is ongoing and I’m not particularly inclined to return to you for follow-up.  Since you wouldn’t act in my best interests in this situation, why would I trust you in the future?

When I go to my family physician for help, I know he’ll listen to me and do what’s needed to get me well. When I go to my rheumatologist, I know she’ll listen to me and do whatever it takes to get me the treatment I need.   When I go to you… well, it’s so sad that the same thing can’t be said for you.

NOT

Continued from Chronic & HYSBYW

Chronic pancreatitis.  Serious.  Poor prognosis.  For three distressing weeks I dealt with that diagnosis as I waited and waited for yet another doctor’s office to schedule an appointment.

Aggravated at waiting forever to hear back from the physician to whom I’d been referred, I wrangled a different referral elsewhere.  In an effort to be thorough, I picked up disks with all my imaging studies to take to the new doctor.

Before delivering those disks, I popped them into my computer.  Not only do the disks contain images, they also contain the radiologist’s reports.  At the very top of one is a note that a correction to the report was discussed with the doctor’s PA.  The correction?  One word was omitted from the original report.  It should have read that there is NOT necrosis…

Capital letters.  NOT necrosis.  Not chronic.

This correction was dated two weeks before the doctor delivered the bad news.  He somehow didn’t see the corrected report and didn’t see the PA’s notes in my file.  He was too busy typing on his computer to look at me.  Apparently he was also too busy to look at all the reports, since the report on the second CT was even clearer.

And I’m wondering. When would I have learned this if I hadn’t looked at those computer disks and opened the radiologist’s reports?  What was that doctor thinking?  I am so angry that I spent three weeks stressed about this because he didn’t read the reports and so gave me the wrong diagnosis.  I understand that mistakes happen sometimes, but this guy just glanced at the initial report and never bothered to read it, never bothered to read the corrected report, and never bothered to so much as glance at scan number two.

While I am dismayed that the wrong diagnosis was delivered, I am relieved to know that I’m not dealing with another chronic condition.  Acute is such a nice word.

I saw a second gastroenterologist in a different hospital system.  No accusations of being a lush there.  Quite the opposite.  They read the radiology reports and told me that my case is very normal:  70% of cases of pancreatitis are women with gallstones.  That’s not the only contrast in the care they provided.  The first GI didn’t even read the reports; this second guy looked at the CT images and tracked down a radiologist for help interpreting them.

The second doctor, who I saw initially the day after I phoned for an appointment last week, is working on fitting me in to get the procedures done next week.  Next week!  Not next month or the month after.  Next week.  As a bonus, I don’t have to drive clear to Seattle.

NOT chronic.

Chronic

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…