Saturday, September 21, 2013

Winning the complications lottery

Since a couple of people have expressed concern, I'm going to post more detail about my week. last few months.   Just skip over it if you have a weak stomach or it's TMI.

I am reminded of the period 13 years ago when I learned more about medical issues in dogs than I really wanted to know: like how to express a bladder.  Now I am learning about more human medical procedures than I care to know.

On April 17th, just after returning from nationals, I had a routine appointment with my primary care provider and annual blood test, where it was noted that I had high liver enzymes.  I poo-pooed the initial results, so we scheduled a second test a month later.  On May 17th the values were even higher (after a month of depriving myself of wine BTW).  Thinking back to the all of recent times I had been sick and comparing symptoms on google, I was pretty sure that it was my gallbladder.  An ultrasound on 06/03 confirmed my self-diagnosis.  It showed a "shrunken" gallbladder with one large stone, too big to go through the bile duct.

On June 13th I went in for what was supposed to be a one-hour laproscopic cholectcystectomy (i.e. gallbladder removed through navel).  Done on Thursday, I expected to be back at work on Monday morning.  Due to (ahem) having let things go so long, there was a lot of scar tissue and the surgeon had to convert to a 3-hour open procedure.   The remnants of the gallbladder were adhered to my stomach and small intestine.  Surgery started at 8 a.m.   The first thing I saw in recovery was a big round black-and-white clock on the wall.  The time read 12:26.  I thought to myself "This is not going to be good . . ."  I was "off work" for three weeks, though I worked full-time from home two of the three weeks.  That was when the idea first came to me that I probably might want to gracefully retreat and retire sooner rather than later. Working 50 hours from my couch during the 32-hour week that included July 4th was demoralizing.

I expected to feel better at four weeks and was disappointed.  Reading more on-line, recovery times were quoted as 6 to 8 weeks, so I didn't worry. Much. At nine weeks I was still having pain, but we made the previously delayed trip to California.  I thought I hid my pain rather well, though Tom disagrees.  I made a followup appointment with my primary care provider the day we returned, but it took a week to get in.  In retrospect (there has been a lot of that) I should have just contacted the surgeon's office.   But I was able to get in the next day to see Dr Kuo so it didn't waste that much time.  By then it was a day short of 11 weeks post-surgery; I was coughing, in pain, and found it hard to breathe on the right side. Dr Kuo ordered a CT scan of chest and of abdomen.

The insurance company denied the procedure for the chest CT, which Dr Kuo had added because of the coughing.  There was an automatic appeal, and it was denied again.   Due to the way it was submitted, they "could not" allow the abdominal scan alone.  Two weeks plus two days later, a request was submitted for approval of just the abdominal scan.  This is where I think something went wrong and/or someone dropped the ball.  It could be partially my own fault in that I am horrible with coming up with pain numbers.  I told Dr Kuo that it was a three; maybe I should have inflated it.   Honestly, I am pretty stoic when it comes to pain: see the part where I let the gallbladder go since 2009 when I first had two attacks.   During the waiting period, I was able to again self-diagnose and found that the coughing was an intolerance to acetaminophen, which I had switched to when ibuprofen was irritating my stomach. Coincidentally acetaminophen is also in Norco, which I was taking for pain the first three weeks post-surgery.

(For an interesting side-story, see http://www.nytimes.com/2011/12/20/health/evidence-mounts-linking-acetaminophen-and-asthma.html .)

I finally had the CT scan of my abdomen on Wednesday September 11th.  What a strange birthday present.  The results were to be reported to Dr Kuo that same afternoon.  Unbeknownst to us it turned out that Dr Kuo was off that week, which is why she didn't see the results and call.   When Tom finally called the office on Friday afternoon, the assistant Nikki looked at the results then said something like "Ack!" and grabbed the other surgeon in the office just as she was leaving for the day.   Dr Haley immediately put me on Dr Kuo's schedule to see at 9:15 Monday morning, with a pre-op blood panel to be drawn before that, i.e. first thing in the morning.  The blood panel was marked "stat" so that Dr Kuo would have it in time for the appointment.

Everybody believes me now that I couldn't breathe and was in pain.  We saw the pictures as well and they showed two huge pools of fluid, one pressing on my diaphragm and another in the space where my gallbladder used to be.  From Monday morning on, things have been moving in a whirlwind.

I was immediately scheduled for a procedure to drain the liquid.  Immediately as in that same day, waiting in the lobby of Dr Kuo's office while they added me to the schedule for Dr Boles, the radiologist-surgeon. That was an entertaining procedure as I was awake, though assisted through it with morphine administered by a new friend named Phil.  You ride in-an-out of a CT scanner, it seemed like a dozen times but was probably not quite that many.

It turned out that the top puddle was "old blood" and the lower was bile.  A lot of bile. I now have drain tubes with "two little friends" who are JP drains.
http://en.wikipedia.org/wiki/Jackson-Pratt_drain
Dr Boles also gifted me with a prescription for oxycodone which is working ever-so-much better than Norco.  I took Tuesday off work, just to enjoy it (BTW tubes in you HURT!)

In an immediate followup Dr Kuo called on Tuesday with my next scheduled procedure: an ERCP on Wednesday.
http://en.wikipedia.org/wiki/Endoscopic_retrograde_cholangiopancreatography
Which turned out not to be so bad as they give you propofol.  Which you need as you DO NOT want to be awake for it.  A stent was placed to connect the stump of the bile duct presumed to be leaking to the main duct.   We allow a month to heal, then I have another ERCP scheduled on October 16th to remove the stent.  The gastroenterologist who performed the surgery was Dr Jacobson, previously met during a colonoscopy last year.  I guess he's seen most of me now.

I might have been a touch dramatic that day when I figured out that the drains weren't getting removed and that I was going to have to GO TO WORK with a fanny pack (on my front) full of plastic bulbs with bodily fluids dripping in.  I might have said that I was the "grossest person alive".  I might have gone into the office and cried in front of my boss.  I hoped that I could at least get the top tube removed as it did not seem to be putting out anything and because it hurt like heck.  In fact I might have gone into Dr Kuo's office demanding that it be removed.

(Tom and I both went to the day job and worked Thursday.  Nobody made fun of me and I lived.)

The third medical procedure of the week was scheduled for yesterday (Friday): a sinogram
http://www.merriam-webster.com/medical/sinogram
to make sure that cavity was clear so that the tube could be removed.  Unfortunately, it wasn't so it couldn't be.  Instead the tube needed to be repositioned so that it could suck up more grossness.  We were sent to the lobby to wait (did I mention how much I love my tablet?)

Next lesson: when you receive an e-mail that a new message has arrived in your "Mychart" which then tells you that your appointment has been cancelled, go up to the registration desk and ask about it.  Don't wait from 12:30 until 3:00 when Dr Boles finally comes to the lobby looking for you.

So the last medical procedure for the week was late yesterday afternoon in the cath lab, where the top tube was moved under the guidance of the real-time flouroscope.   I may have had my share of radiation for a while?

What's next?  Appointment with Dr Kuo on the second where she will check progress and maybe pull the tubes (Dr Boles said that it's ok for her to do so if they have stopped).  My concerns at the moment are that 1) the top tube already isn't putting out much again so might need more repositioning, and 2) the bile drain still seems to be collecting just as much as before the ERCP.  It holds 100 cc's and is almost full between 7:15 a.m. and 3:00 p.m. today.   Does that meant that there is another leak that the stent did not solve?   Or does it need to heal before the leak stops?  Or is there just that much still in me?

Obviously, more to come.



3 comments:

Carolyn's Mom said...

Having just talked to you...I just shake my head! This has been a nightmare for all concerned! I guess the primary lesson to be learned is "listen to your body" and don't let the day job run (or ruin) your life!

Moe Rubenzahl, http://feedme.typepad.com said...

I think that month of no wine at the start of your story was the source of all the problems.

Anyway -- if laughter is the best medicine then you should be just fine!

Unknown said...

Wow, Carolyn! What a mess - I mean the craziness in dealing with doctors - insurance - and so forth. I had my gall bladder out in 2003, but I was pretty much aware of the problem - mostly because I would get low-grade fevers for a couple of years which would put me out of a work a day or so. After the operation, which was not the laproscopic cholectcystectomy - but which was relatively uninvasive with three small holes in my abdomen - the healing process was short and I never had any further issues with digestion. But your situation was just crazy. I think everyone who deals with medical issues needs an advocate or coach to guide them through the negotiation processes. I also have a similar problem with the pain gauge - I'm usually ignoring a possible "3" to me which for other people may be an "8." I hope you are healing and "drained" (in a good way). Our best wishes - Linda and Sharilyn (still corgi-less, but hopefully we will be able to move soon and can find a new friend.).