Trying to Keep Our Heads Above Water

Apparently, it’s been quite a long time since we’ve posted. I’ve been posting some updates on my Facebook page, but this blog has been awfully quiet. So this will serve as a brief recap to last month or so, as well as a bit about where we are now.

Some things have changed rather significantly. Eva no longer has a gallbladder. Unfortunately, while that dealt with one type of pain, there was another pain we were hoping it would address that it didn’t. The surgery itself went well (on December 24th), though the healing was more painful than either Eva or I anticipated. It was a laparoscopic procedure and I think we both had the sense that it was therefore “no big deal.” It remained major surgery, minor only in comparison to having it done conventionally (or whatever you call non-laparoscopic surgery). Eva was fully debilitated for ten days.

At the end of the ten days, Eva got suddenly quite sick. On January 5, the nurse came in the morning (9:00 AM) to draw labs and take vitals. Her vitals were very slightly off for her (think 120 over 65 rather than 102 over 62). By 1:00 PM, Eva had spiked a fever (100.0, which is a lot for her), her blood pressure was way up, her she was shaking, sweating and shivering. By 4:00 PM, our primary care doctor wanted Eva to go to the hospital via ambulance. This led to 4 days in the hospital, treating for suspected sepsis and working to get Eva’s pain and diarrhea under control. On the 9th, she was finally ready to return home, albeit with some new bile salts, and a new suggestion for what was causing the pain that the removal of the gallbladder was supposed to cure but didn’t.

The pain which had been tentatively ascribed to the gallbladder is now being seen as muscular skeletal pain along the rib cage. This diagnosis was not due to the hospitalist, but due to a visit by a GI who came by. She saw where Eva was hurting, had her move a little, and said, “this isn’t GI pain.” This is opening up some new treatment options, like lidocaine patches.

The bile salts, whatever those are, seem to be dealing with the diarrhea and are also lessening the intestinal pain. While that is good, it isn’t enough of a lessening for Eva to be able to return to tube-feeds rather than IV feeding (though, as I type this, she is setting up to try a trickle feed to see how it goes, since the dietician asked her to give it a shot yesterday).

All of this pain, new (muscular-skeletal) and old (intestinal), has been taking a huge toll on Eva. For the last two months or so, she has been slipping into a depression. While the usual answer for that would be medication, Eva has medication-resistant depression. What works for her is transcranial magnetic stimulation (TMS). The downside to that is that it is an intensive process: 18 minutes a day, five days a week for five or six weeks, in person, at a doctors office. We were set to start this process on Monday of this week, but insurance hasn’t yet rendered a determination on coverage. So we are still waiting, with Eva feeling crushed in spirit and body at the moment.

Fundamentally, Eva (and I, to a lesser degree), are needing to redefine what normal looks like (again). The baseline expectation that we hold keeps resetting ever downwards. Quality of life slips lower each time something that seemed “temporary” begins to feel like it might be the new “normal”. While gastroparesis is not typically a degenerative disease, it is also, in some ways, not so much a diagnosis as a symptom. And we remain unclear what it might be a symptom of.

We are moving forward. Eva is looking into getting pain-blocks for the muscular-skeletal pain. Eva has an appointment with her Naturopath GI in Portland (telehealth) to look more closely at root causes. And we are waiting on the TMS. But all in all, things around here feel pretty bleak.