Good News!

It is so nice to be taken seriously.  This new gastroenterologist looked at my CT images and said, “We need to get this done soon.”  He rearranged his schedule to fit me in.

Next week I should be able to eat without pain.  I’ll be able to visit people over the Thanksgiving weekend without fear of landing in the hospital again.  My kids will be able to concentrate on their schoolwork instead of worrying about me.

Instead of just dictating when I had to show up, the nurse asked about my schedule and gave me options.  I told them to do it as soon as possible, and I’d make it work.  It turns out I have some juggling to do because my pre-op appointment with anesthesia conflicts with my children’s violin recital, and the actual procedure conflicts with another doctor’s appointment that I’ve had scheduled for a month.  BUT it will be done!  I’ll juggle the other things as best I can, and I’m happy to do it.

The nurse said they would have done it this past week, except they couldn’t schedule an operating room at the hospital without a guarantee that the machine would be here.  Apparently the EHL/ERCP combination is a special procedure that requires borrowing a machine.

It’s funny how different medical practices can take such different approaches to their potential patients.

Practice #1

Practice #2

 Phone call to schedule appt  3 weeks after receipt of referral  1 day after receipt of referral
 First appointment  5 weeks after receipt of referral  2 days after receipt of referral
 Procedure appointment  8 weeks after receipt of referral  2 weeks after receipt of referral
 Asked about my schedule  No  Yes

The second place will perform the procedure two days before the first place will even get me in for an initial appointment.  Is it solely a matter of how they do business, or is there a difference in how the referrals were written?

I owe my family physician huge thanks for getting me the new referral.  I wish there were something I could do to convey my gratitude to him.

________
Edit to change ESWL to EHL

The Conveyor Belt of Medicine

Sometimes it feels as if, as a patient, I have very little say in my medical care.  In the rest of my life, I carefully research options before making an informed choice.  Not with doctors.  The world of medicine is like being thrown on a conveyor belt where you roll blindly along from one station to the next.  The workers on the assembly line know what they’re doing, and have a general sense of where the conveyor belt is going, but the patient traveling on the conveyor belt doesn’t get to know.

Enter the hospital, and there are protocols in place guiding everything that’s done.  The patient doesn’t get to interview nurses, CNA’s, and hospitalists to create a team of people to provide their care.  No.  The patient is trapped in a room, at the mercy of the hospital administrator whose policies control the conveyor belt and dictate who the assembly line workers are and which procedures are done.

Get a referral to a surgeon, and it’s like being tossed onto a different conveyor belt:  pre-op “meet the surgeon” appointment, then do the admission paperwork and show up for the various assembly line workers to contribute their little piece of work to the end product, followed by recovery and post-op appointment.  One identical patient after the next rolls off the assembly line, with no allowance made for the uniqueness of individuals.

If you’re referred to a different specialist, it’s like being moved to a different conveyor belt.  All doctors have their own procedures, their own secret way of doing things to which the patient is not privy.  The patient can check for board certification, but aside from that has no way of evaluating the specialist’s credentials or suitability for this specific situation.  Patients are just supposed to sit on the conveyor belt of medical care and do what they’re told.

In all of this, it would be helpful if medical personnel thought a bit more about the patient’s needs.  A little theory from the world of eduction is pertinent.  People have different ways of processing information.  Some people are very focussed on the immediate, and take a “just tell me what I need to know right this minute” approach to life.  Others need to know more and want to see the big picture.

I am one of those big picture people.  If I have to be tossed onto a conveyor belt, a map of the thing would be appreciated.  In fact, I don’t just want a map; I want to know how the whole thing works, and want to be sure that the entire conveyor belt is operating as smoothly as possible.  I don’t like being stuck, waiting for repairs when the conveyor belt breaks down.

In fact, I want to compare a couple different conveyor belts and choose the one that seems to work the most efficiently while providing the best end product.  I want to pick the workers on the assembly line.  By no means do I want to tell the assembly line workers how to do their jobs – I just want the ones who are doing their jobs.

Ideally, instead of being stuck with whatever conveyor belt I happen to be tossed on, and whatever assembly line workers happen to be scheduled, I want off the conveyor belt.  I want individualized care, and I want a say in how it’s delivered.

Edit to add clarification:

I’m not saying that I always want to be in charge of making the decisions about appropriate treatment.  That’s the doctor’s job.  I want things explained to me so that I understand what’s going on and why the recommended treatment is most appropriate.  I don’t want to be stuck forever with whoever happened to be on call.  I want the option of hiring the doctor who is the best fit for my symptoms/diagnosis/personality.

More specifically, I’m not in charge of saying how to get rid of the stones that remain in what’s left of my biliary system.  I wanted to try a non-surgical option. It made things worse.  From what I’m told, the only thing to do is break the stones into small pieces, then remove them.  If that’s what’s needed then I’m okay with that.  I am NOT okay with being told that there’s only one person in the state who can do it, and that I have no choice in the matter.  I am NOT okay with being ignored when I ask GI if there’s anyone else who can do it sooner.  I am NOT okay with the people at Virginia Mason taking their own sweet time; it’s been three weeks since they got my referral and they still won’t make an appointment for me.  I did hear that they will call and tell me when to come in – as if it’s a court appearance to which I’m being summoned instead of an appointment time that we mutually agree upon.  Given how I feel, it would not be at all surprising if I have another bout of pancreatitis before they get around to me.  I’m still working on seeing someone else to get this done sooner.

***

This post was published in November as part of NHBPM’s – 30 health posts in 30 days

 

Figuring Out What To Do – Part 2

What’s that line about the best laid plans of mice and men?  Last July, I was thrilled to not have any more doctor’s appointments scheduled until November.  Medical professionals are nice enough; I just don’t want to need their services.  Instead I have had eight doctor appointments, five days in the hospital, an ultrasound, x-rays, two CTs, an MRCP, and, everyone was urging me to have surgery.

I had to figure out what to do.  The main problem, in my view, was that I had gone to the hospital for one problem, but everyone wanted to treat a different, unrelated problem.

Gallstones I was familiar with.  I made my no-surgery decision fifteen years ago and was not being given any reason to change that decision.  Back then, I had three gallbladder attacks before the doctors figured out the problem; they recommended that I go under the knife.  Instead, I started looking for more information.  What caused the problem?  Could it be prevented?  Were there less drastic treatment options?

I learned that certain foods can be triggers.  Avoid foods that cause a problem, and suddenly there is no problem.  At least one doctor agrees:

most people can pretty well poke along with an asymptomatic gallbladder.
Sporadic gallbladder attacks that respond to diet changes, and the presence of
gallstones identified by sonogram, are not in themselves an indication for
surgery. The pain can be brought under control with dietary modification, and
the presence of the stones by itself doesn’t mean you need to have them taken
out.

For many years that worked for me.  I identified a trigger:  chocolate.  Eating chocolate made me wish – no exaggeration – that I were dead.  The pain was dreadful.  It only took a few months for me to learn that if I avoided it, I’d  have no trouble with my gallbladder.

Then I discovered another, less dramatic, trigger:  Gatorade.  Now, I know that’s not on the usual list of foods that cause gallbladder attacks, but my gallbladder doesn’t read medical textbooks.  When the weather is hot, I like Gatorade, and I’ve figured out that I can tolerate the occasional bottle if I also make sure to do the home-remedy for gallstones.

All that was in the past.  Now, the gallstones that everyone was so concerned with were my fault for not being diligent.  In early September we’d had a stretch of hot weather during which I drank a lot of Gatorade.  Since I’d been very careful what I ate, I hadn’t had a gallbladder attack in years, thus foolishly didn’t bother to make sure that the Gatorade wasn’t causing problems with gallstones.  Oops.  Stupid, but I know how to deal with them.  My decision had been carefully thought out, and would not change unless new facts came into play.

The reason I was in the hospital, and the thing that needed to be treated/managed (in my opinion) was the new diagnosis of pancreatitis.  Since I got very little information from any of the hospital staff, I was glad to have my laptop and internet access to learn about this new diagnosis.

I learned that gallstones are one of the leading causes of acute pancreatitis.  Perhaps the no-surgery decision I made fifteen years ago needed to be revised.

That was not the case.  The GI people have pretty good credentials, and after extensive testing they were adamant that this was a very strange case in which the gallstones were not causing the pancreatitis.

Being pushed to have gallbladder surgery when that wasn’t the cause of my hospitalization was extremely frustrating.  My reasoning was that if the two problems were separate, they should be treated separately.  I could take care of the gallstones; they just needed to figure out what to do about the pancreatitis so we could prevent a recurrence.

Finally my gastroenterologist agreed to let me try home treatment for the gallstones.  After that, additional imaging tests could be done to obtain proof as to whether or not the stones were gone.  If they were gone, problem solved.  If they weren’t gone, then I’d have the surgery.  My rheumatologist concurred.

My family physician wasn’t as enthusiastic about the plan, but didn’t say why.  Part of me speculated… was that because he knew it would really work?  Was it because he figured it would be harder to talk me into the surgery once I felt better and went home?  Was it because he had an idea what would really happen and wanted to prevent it?  Who knows.  Despite his misgivings, he discharged me from the hospital.

One little footnote you don’t often see in those home-remedy write-ups is that you ought to find out about the size of the stones before trying to pass them.  I attempted to pass the gallstones as I’d done in the past.  This time, however, I knew something was wrong.

I had a bad feeling that the scan would show I hadn’t gotten rid of all the stones, so repeated the home-treatment before going in for my follow-up imaging.  I was right.  The scan still showed gallstones.  It also showed many in the ducts and a huge one stuck right where it would cause problems for the pancreas.

Surgery still didn’t seem like the best option.  Like clearing an accident that’s blocking the freeway, I figured that if the stuck stone could be dislodged, then the remaining stones could be passed.  Problem solved.  That, however, would require the remaining stones to be small enough, and there was no guarantee that another one wouldn’t get stuck.  Stuck stones are a problem.

All along, I’ve said that I wanted facts.  The situation needed to be different if I were to change my mind about surgery.  An additional fact in the radiologist’s report changed the situation.  It was time to see a surgeon.