9-23-2021 Fighting off an infection--and a doctor's indifference

(Tricia)

I have taken a bit of time off from writing updates here, partially to take a breather and partially because Linda’s status has been so puzzling. At her best point, a couple of weeks ago, she seemed to be able to hold onto more information in her working memory—especially details such as her birthdate, where she was, and why she was there. She also had gotten strong enough to require minimal assistance to stand up and walk to the bathroom and back.

Then, the GI issues hit hard and her tests came back positive for a C.diff infection, requiring the facility to prescribe a 14-day course of vancomycin. After that point, we saw her regress significantly both mentally and physically. She no longer had the strength to help lift herself up, and her thinking became “jumbled” (her word) once again. She also went back to refusing physical therapy again—although in this case, the effects of the infection gave her a better excuse.

And while she had not misnamed Ed for more than week, during the height of her infection, he was everything from “Roger” to “Marshall" to “Joe.”  In those moments, she simply could not believe that his name was Ed. Two nights ago, she asked, “Why is his name Ed?” When we told her it was because it was what his parents wanted to name him, she followed up with the question, “Well, why would they want to do that? He doesn’t look like an Ed!” We had no answer to that! The thought process of a brain-injured patient is scary, but also a little fascinating.

Largely, however, our visits with Linda over the last seven to ten days have been relatively uneventful. She has been exhausted and confused, so she often has slept for a good deal of the time Ed and I were there. When she was awake, she no longer had access to the details I mentioned above. One night, when I asked her when her birthday was, she stared up to the ceiling for a moment, before finally saying, “I can’t believe I don't know how old I am.”

The last two nights, though, she has obviously felt better. Ed is Ed again, and although she has not been able to remember her birth year, she seems to remember the month and day. Our conversations with her have also been more navigable. Although she does not remember most things, she is back to two constants: Wanting to adopt two puppies and wanting a new car. :-)

These improvements seem to coincide with the C.diff treatment, so we're hoping that once she completely fights off the infection and finishes the course of vancomycin, she will able to at least regain the ground she has lost and even continue to improve her strength, memory, and language skills.

A side note: In addition to the vancomycin, the doctor also has prescribed probiotics, as Marilyn previously noted. I cannot sufficiently express how angry I am at the fact that we implored the doctor and nurse practitioner to add probiotics to her regimen early on, when the GI issues first started getting ugly, only to be told flat-out “No.” Probiotics, the doctor said, were a “waste of money.” It didn’t matter that Linda already had had two full rounds of antibiotics, which would seemingly make probiotics warranted. Only now that Linda has to deal with all of the symptoms that come with a C.diff infection and must take yet another round of antibiotics, all of a sudden probiotics are just the thing. Could probiotics from the start have helped Linda stave off the C.diff? Impossible to know. Would they have hurt? No. Could they possibly have helped? Absolutely.

I also have had an email to the nurse practitioner with what I thought were reasonable questions, and a subsequent follow-up phone message a few days later, both go unanswered. This, along with our past interactions with her and the doctor, suggest that neither one of them want anything to do with us (nor we with them, frankly). I’m now hoping that my own endocrinologist might take Linda on as a patient. My endo’s office has told us that they would let us know of the first available opening. I very much want Linda to have a doctor who is responsive and who listens. Simply trying to navigate around seemingly needless obstacles in the medical system has been so frustrating. And exhausting.

It’s also uncertain whether or not we can convince the doctor to continue the probiotics once the C.diff treatment ends. But, frankly, I don’t care that the doctor says that “no studies have proven their effectiveness,” as that is just plain wrong. While it’s true that studies haven’t shown their effectiveness for healthy people, studies do show they could help patients with GI issues. In any case, we are well aware that we don’t have a lot of control over this entire situation, but this seems like such a silly thing to have to fight over with a doctor. But if Linda’s continuing with the probiotics has to be my hill to die on, so be it. Geez.