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.
