Wednesday, October 23, 2013

"The Flagyl Diet"

(Post title suggested by RVMC nurse Jessie, who assisted with my third ERCP on Friday the 18th.  This was subsequent to Dr Jacobson commenting that he noticed my weight loss just before I went under.  Hospital gowns hide little.)

Yes, it's wonderful!  Eat anything you want, and still lose weight! Caveat: there is almost nothing that you will want to eat.  Your stomach will revolt when you even think about certain items.  Like, in my case, eggs.  To really start your days out right, have your husband offer you a fried egg each and every morning.  He has since learned.

I find it difficult to issue updates unless I can find some humor in the circumstances.  And believe me when I tell you that there have been a couple of weeks when I did not find anything remotely amusing in any of it. When I was receiving hospital discharge information, Dr Haley gave me permission to have a "pity party when you need to."  I am trying not to spend too much energy in doing so.

One of the nurses told me that Milton Berle intended to have engraved on his tombstone "I told you I was sick!"  I don't know if that's true, but it's funny.

Quoting from my last post on Saturday the 5th:
I have been battling fever.  Not emergency-room high, and more ibuprofen has been bringing it down. I have been chalking it up to body trauma and inflammation but after several days (well ok, a week) I was starting to be maybe just a little concerned and we checked with the doctor again.  I had blood drawn yesterday afternoon, checking for white blood cell count and to see if the ibuprofen is killing off my remaining innards yet.  Reports haven't hit MyChart yet (one part of the modern medial system that gets a "thumbs up").  My guess is that there may be a surface infection at the tube site, or at least it feels like there may be.
The scan was done Monday on schedule.  I felt pretty good that morning and went to work after.  But as the day progressed my energy flagged.  I spent the last hour until Tom picked me up staring blankly at a pile of paper on my desk, trying to talk myself out of violent shaking.

Tuesday morning I felt fine again and decided to drive to work on my own.  If I was driving and there was a repeat of the end-of-day blahs I could just go on home without having to wait for Tom.  So much for planning ahead.  At 9:30 Tom called me to "come on home because you're going to the hospital and you should prepare to stay."

I think that I've freaked out a number of local doctors now.  It appears that it is not expected that an otherwise healthy 60-year-old (admittedly with some indigestion issues) goes in for routine surgery and ends up bedridden with multiple complications.

The CT scan from the day before told the tale: the seroma between the diaphragm and liver had blown up and was now a raging infection of unknown pathogen.  Coupled with that, the scan also showed a "suspicious area/abscess" within the liver itself.

Another CT scan (I'm starting to glow in the dark).   Another tube inserted into the abscess.  More pain-killers.  My own private hospital room, where I lived from Tuesday afternoon until Saturday.   I don't remember much of that time; I mostly slept and attempted to breathe.  I had a trio of IV drugs: flagyl, cipro, and the particularly nasty vancomycin.  I was also on IV morphine as I was not allowed anything by mouth for the first day until another test scheduled for Wednesday.  Looking back, I now realize how sick I must have been as I didn't even care that I was in the hospital rather than home.  When lucid, I visited with the night nurses.  Talked "jeeps" with Albert, books with Pat.

A few procedures back, the radiologist Dr Bose had mentioned a test that could quite possibly show a cut accessory bile duct, which is what Leo suggested a few weeks before (thank you so much for your "armchair quarterbacking"!).  Dye could be injected through the biliary drain and with luck would be sucked up into the open duct.  He said at the time that many doctors didn't think much of the idea and true enough: when we mentioned it to Dr Kuo the preceding Wednesday, she dismissed the idea.  Her entire advice was "wait and see what happens."   As luck would have it, she was on vacation the next week and it was new-to-Southern-Oregon Dr Mason who saw the scan and told me to get my butt into the hospital.  Dr Mason scheduled the test which was then performed by Dr Bose on Wednesday morning, and guess what?   Schwoop went the dye right up into that duct.  And from the looks of it is a fairly large duct, not a small "duct of Luschka".

Dr Mason has remained on my case and I feel comfortable with him.   He takes the time to help with our internet-based anatomy lessons.  When there is something he doesn't know he freely admits it, a trait I admire. He consults with experts in other fields (such as the infectious disease specialists) when needed. He also absolutely and emphatically said that I could go back to work under no circumstances.   What's not to like?  Dr Haley, the third surgeon in the unit and the one who read the original CT scan from my birthday, also pulls no punches when discussing the issues at hand.

And the issues are:

1) Infection.  The abscess between the liver and diaphragm was cultured and it is staph.  Thankfully it is MSSA rather than MRSA.  I think that it is quite possible that I had the staph infection from the very start of this entire fiasco in June when I think back to how I have felt.

2) More infection.  The area in the liver has not been biopsied, but is presumed to be an anaerobic bacteria.  Dr Mason feels that it was quite possibly introduced with the stent placement during either the first or second ERCP.  He and Dr Jacobson "had a lengthy discussion" about the stent and it was removed on Friday.  Any foreign body can be a conduit for infection.  I don't know if it's entirely coincidental but I started feeling better soon after the removal.

I had a PICC line inserted in my inside upper arm while I was still in the hospital.  I am ever so grateful for modern technology and for a husband who is up to shouldering the nursing tasks involved.  Not long ago, I would have been sent to a "skilled nursing facility" upon being released from the hospital.  Instead, I am hooked up to CADD Prizm VIP pump which administers 100 cc of flagyl in an hour-long process every 8 hours.  At first, it was programmed for 9 a.m., 5 p.m., and 1 a.m.  It made me "sick as a dog" though I'm not so sure I've ever had a dog that sick.  Dr Mason suggested that we have the times reprogrammed to 7 a.m., 3 p.m., and 11 p.m. which has worked much better.  I have been able to eat some dinner since the change.  I also have another syringe pump which administers a 50 cc syringe of rocephin once per day.  Tom carefully administers this each morning, flushing the line after.  Both drugs are delivered to our house weekly by courier service then stored in our refrigerator.  Each Tuesday a nurse from Providence Home Infusion comes out and checks the equipment, does a blood draw for lab work, and changes the dressing on my Picc line.

My schedule is to complete three weeks of this regimen and then to have another contrast study to see where we are (scheduled for Tuesday the 29th). At that point I will have either another three weeks of IV or be switched to three weeks of oral antibiotics.  I feel so much better this week that my fingers are crossed for the later.  Meantime, we will have a referral set up for:

3) I will need to see a liver specialist in Portland, probably at OHSU.  Learning some of this has been fascinating, as long as I can stay mentally detached.

As I understand it embryos follow a basic genetic blueprint but sometimes there are change orders.  Surgeons are often surprised when they "open a person up" because not everyone is built with things in the same place.  The construction of the liver and bile ducts is one of those areas where there is a large difference between individuals.  Dr Mason explains that in a medical textbook they will first show the most common layout, then show various alternates.   He says that I'm somewhere down there on the bottom of Page 3.   Different sections of the liver can develop independently, with portions that are not cross-connected.  They are surmising from the pattern and amount of bile collected in the drain that I am one of those cases where a lobe developed with an extra duct to the gallbladder and with no other bile outlet for that section.

My gallbladder was reportedly such a wizened little mass of scar tissue that had to be peeled away from everything else that there was no way that a surgeon could have seen the extra duct.  There is no test done initially looking for extra ducts: weigh the extremely rare occurrence against the possible trauma involved to the liver in the act of testing.  In the case of independent lobes, it would be a hit-and-miss proposition to find the correct dye injection site at best.

There is still a chance that it is not an independent lobe, in which case the leak could still heal on its own.  Every time the drain drops to almost no collection in a 24-hour period, we have been hopeful.   But the next thing we have learned about the liver is that there is quite a variance in the amount of bile produced each day depending on food consumption.  Last night we had nice little grilled rib-eye steaks for dinner.  Nope, it certainly has not yet healed itself yet.  I am most likely looking at more surgery in my future.  Dr Haley said that probably the duct is too short to be connected to the small intestine or to the common duct.  If there is no other outlet for the bile, that portion of the liver may actually need to be removed.  The good news is that the liver is one of the organs that regenerates itself.  The bad news is . . . . gee, I wonder exactly how long it will be before I can enjoy a glass of wine again?

I'm trying to remain complacent about the things that are out of my control.  In compliance with Dr Mason's edict I have managed to avoid going to the day job to work.  Of course, that would be awkward at best with all of my accouterments.   "No work" has of course not been "doable".   But this time rather than actually doing most of the work, I've been writing  instructions and training Tom on the particulars and modifications I've made to shove things where they need to go.  There are some peculiar reports and procedures, especially with an off-the-wall commission system.  So not only is Tom my nurse, but he's my stand-in trainer (and admittedly ever so much better at training than I am).

I owe Tom a long RV and jeep trip when I get well.   Ok, I owe him getting well.  I can't say at this point that I feel like a new chapter is beginning in my life, but I certainly do feel like we are closing the book on the chapter that encompassed the last two decades.

You know that time when I said that when I retire I want to sleep for the first six months?   I could happily get started on that now.

Saturday, October 5, 2013

I'm still here!

It was suggested that it might be a good idea to post before more people phone to make sure I haven't died.
Tom says that "It's like a merry-go-round", which is true.  You go up and you go down, and it seems that you are going in circles but at the same time always traveling forward.

Re-enjoyed Carousel not long ago.  It's such a favorite of mine.  
At least for the music, if not the story-line.

When we last left this intrepid explorer of the Medical System, it was a a few days after having an ERCP with a stent placed, and a day after having the top tube for the seroma relocated slightly.   That tube drained a little more then slowed down again a day later.  On the other hand, the bile drain was still filling (100 cc's) every 12 hours.   No difference at all from pre-stent, which was discouraging.

It's almost difficult to put some of it in order a week or so later.   I stayed on oxycodone as the pain from the top drain was excruciating.  Dr Bose explained that he had gone through rib cartilage in order to place it.   He is quite young and much better looking in person than he is in his professional picture.  Why are so many doctors younger than my children?

Oxy and pain notwithstanding, I managed to drag my sorry butt to work every day.  On Monday the 23rd my newest try-at-an-eventual-replacement started, and I do believe that this one might stick.  It's so nice to have someone I don't have to explain every entry to.  I don't have to explain each step of opening a spreadsheet, inserting a line, and recalculating the totals.   On the last hiring round I actually used that as a test.  When every applicant I tested failed, I gave up.   Elizabeth is a quick learner, quiet worker, and has a sunny personality that gets along with everyone.  She is also a Philippinna, and I hope for one of her native dishes at our holiday potluck in December.  And best of all, she has complimented my software several times (how to make friends).  There is still a long learning-period that is specific to the industry and the particular business, but my original deadline of next December should be easily accomplished.

Back to medical procedures.  A week later still no decrease in bile flow, so Dr Kuo scheduled a second ERCP with Dr Jacobson (at least he's not younger than my children).  No hours were available at Providence where my other procedures have been, but he agreed to squeeze me in at Rogue Valley Medical Center Thursday morning at 7:30 before his office hours.  We had to check in (a good half-hour drive away) at 6:30 a.m.

We hadn't been to RVMC in several years, and my has it been remodeled and . . . is "upscaled" a word?  It should be.   The lobby is carpet and glass and polished steel and most resembles a high-class hotel.  There is valet parking.  Of course the valet parking is not available until later in the morning.   As we search for a parking place, we find that all of the parking near the lobby is marked "Valet Parking".   So rule-followers that we are, we parked out in the hinter-lands and the poor sore person had to walk in.   And back out.   And, if you can believe it, I got to work at just after 8:30 a.m.   Maybe I was a little drunk but I was there!

At 12:00 we arrived at Providence for another sinogram for the seroma.  Whoever scheduled that lost our vote of "employee of the day" as we were instructed to be there at noon.  Tom even called Dr Kuo's office to double-check the time.   So we got to watch people go in and come out, and go in, an come out. People-watching.  I was amused by the older couple (relative to us) where the wife said "I sure like that propofol" with a smile.  I agree: it's my favorite too.

We've passed this wall several times a week for the last month.

The seroma had shrunk more, but still not enough that Dr Bose felt secure in removing the drain.  He himself scheduled another appointment for Monday, his only day at Providence this week.  He wanted to be the one who re-checked as he had seen it from the start.  

It was suggested that we start flushing the tube three times per day (we managed two) and were provided with a few prepackaged syringes (screw on to tube) of sterile saline.  The tube was becoming clogged with dried gunk.   On Friday, Tom spent most of the day finding an additional supply of syringes.  He visited Black Oak Pharmacy, and was told that they were only sold by prescription.  Now I ask you: who on earth would order these to squirt cold salt water into themselves if they didn't have to?  It's not like it gives you a high.   It doesn't even have a needle so that it can be re-purposed, just the threads.  Back to Providence where he was able to get a script in the radiology department.  Once they could find prescription forms, that is.  Then he picked me up at work because I needed to go visit for some mommy-sympathy.  We went back to Black Oak first and dropped off the required form and then went to visit Mom in the half-hour quoted as the wait time.

Back to Black Oak well over a half-hour later.  They hadn't taken any of my insurance information, etc, so had not yet even started to work on the order.  Of course it turned out that the insurance company "DENIED" so we had to pay the total price.  Wait for it.  Ninety-one ($91) dollars for 21 syringes each with 10 cc's of saline.   That's pretty darn expensive salt water and hence you see yet another side of our medical system.

I worked at the day job Saturday and Sunday to get the dreadfully-behind invoicing and some balancing caught up before month-end on Monday. Elizabeth and I got the September books closed and the financial reports printed on 10/1.  Are you impressed?  I am.

Monday I had to take off some time in the afternoon for my third sinogram.   And joyous, happy relief, the top tube was able to come out!   There was just a little pocket left.  Dr Bose said that in one out of 15 people it will reoccur even at that size but let's hope that I'll be one of the 14 for a change.  It turns out that I was completely correct about the pain and I haven't needed or taken an oxy since Monday.

Meanwhile back to the real problem: the leak.  After the second ERCP, Dr Jacobson reported that he still couldn't see a leak but placed a larger stent anyway.  The hope was that back-pressure would be relieved and whatever was damaged would heal.  Or alternately that it was still just draining out the original pocket of fluid.  At a cup of day for how many days?   Sorry, it doesn't seem so likely to me.  I may not be a skinny person, but I don't think that I'm large enough to hide a gallon milk jug in there.  (A hex on anyone who disagrees out-loud or in writing.)   I have lost 10 lbs from the original surgery without dieting, however.

Discouraging.  No decrease from the 100 cc's every 12 hours Friday, Saturday, Sunday.   Then Monday when I got up there was only 40 cc's.  Somewhat promising?  Several mornings since have been even less, I believe yesterday morning was only about 5 cc's though the evening draining has stayed around 40 cc's.  Positional perhaps, and the backlog is mostly done with only newly produced bile being sucked out?  Or is it just getting gunked up (we have started flushing that tube as well).   Looking at the drain right now, nine hours since last draining, it seems that the flow has increased today and it may be back to the full amount.  It certainly isn't from activity as I sat here in my recliner all day.  Ok, shake it off.   Just watch The Ducks beat Colorado and don't dwell on it.

I saw Dr Kuo on Wednesday.  I really do like her, even though she ruined my life.

Dr Kuo said that if she went in trying to find a leak, that #1) it would be another open procedure, not laproscopic, and #2) that there was about as much chance of finding it as of finding a needle in a haystack. Would I mind leaving the drain in for a while in hope that it would heal on its own?   Uh, I have a choice when it's put that way?

Steps forward, steps back, and the merry-go-round goes round.   Newest backward step:  I have been battling fever.  Not emergency-room high, and more ibuprofen has been bringing it down. I have been chalking it up to body trauma and inflammation but after several days (well ok, a week) I was starting to be maybe just a little concerned and we checked with the doctor again.  I had blood drawn yesterday afternoon, checking for white blood cell count and to see if the ibuprofen is killing off my remaining innards yet.  Reports haven't hit MyChart yet (one part of the modern medial system that gets a "thumbs up").  My guess is that there may be a surface infection at the tube site, or at least it feels like there may be.

I have another CT scan scheduled Monday morning at 9 a.m. to see what's going on with the fluid backlog.   When it seemed so low on Friday morning, I was hopeful that the tube would be removed.  But looking at it now, maybe not.  Unless there is an infection in which case maybe it can be removed until it heals?  I know nothing.

Tom never signed up as a caregiver and this is as draining on him, emotionally and physically, as it is on me.  I cannot fathom how anyone who lives alone could go through this, even without four dogs to feed and care for.   I haven't even driven since the tubes went in almost three weeks ago, which means he has a minimum of almost two hours of driving each day.   Every once in a while I have a moment where I can't picture being 100% again, and I get  . . . well, probably more upset/angry/sad than scared.  But I'm not giving up yet!

Gary and Louise are going to come play for a couple of days later this week.  I figure if I'm well enough to work every day, I'm well enough to take a day off and play and go winery-hopping, right?  I think both Tom and I need a time-out.