Re-Emerging

[estherchaya]

After my last post, I disappeared again.  This was not by design.  On May 29th, I was supposed to see my gastroenterologist in the afternoon.  Before leaving for my appointment, my home health nurse came to change the dressing on my central line (a Hickman catheter).  When he was here, he was concerned, because it looked like my line was getting

Comments

[eyelid]

do they know why you lost your memory?

[estherchaya]

It's likely a combination of things - I was on large amounts of painkillers and phenergan (an anti-emetic) that kept me pretty delirious, but also I was fighting a very bad infection with the pneumonia. I was on IV antibiotics for the pneumonia, but when your body is fighting a nasty infection, you can be quite delirious, as I was, especially since my body is already in a weakened state of chronic malnutrition. Apparently there were times when I sounded lucid (but more chatty than usual) and times when what I was saying made no sense whatsoever. Either way, I have no memory of it

[estherchaya]

I should add that Seth noted that hypnotherapy might help recover the memories that I've lost, but I might find that those memories are universally unpleasant, so it might be something I don't want to do...

[magid]

I remain appalled by what you've had to deal with on the health front, and in awe that you cope as well as you do.

I hope the therapist is a good fit for you, and that the gastroenterologist has something useful to suggest. (eta: and that you successfully get the diagnosed-while-delirious stuff taken off your record.)

[estherchaya]

My biggest concern now is that the gastroenterologist will no longer take me seriously, because apparently they are reading a lot into what I said and did in my delirium. Apparently, I was messing with my feeding tube pump, saying I was throwing up when I wasn't (they concluded I was having nightmares of vomiting and thought it was real), and other things. Unless I can convince her that the real me has no connection to that delirious me that she saw, I'm pretty much done at Hopkins. But no other hospital will touch me either - because they'll all refer back to Hopkins' records in order to treat me. There are only two motility specialists in the state of Maryland - and they're both at Hopkins. Argh.

[estherchaya]

Thanks re: your eta. My primary care provider (a CRNP) suggested that I may want to get a psychiatrist to reevaluate me now that I'm not sick (or as sick as I was in the hospital) to support my request for a HIPAA amendment to my hospital record. She's probably not wrong that this would help.

[magid]

I hope this helps; it would be insult to injury to have time you were delirious and unlike your regular self held against you in finding treatment after so long wrestling with the gastroparesis.

[kalki]

Oh hon. That is so scary and crazy. Huge hugs.

[estherchaya]

Thanks. It's petrifying, really.

[mrn613]

Glad you are out of the joint. Is there anything i can do to help?

[estherchaya]

Thanks. Nothing you can do other than keep us in your tefilos.

[proudestmom]

oy! refuah shelaima! I am sorry you went through all this!

I am not understanding why it's a problem if you were having nightmares that you were throwing up. Nightmares come from real experiences....

[sethcohen]

The problem is that after these nightmares, she would tell the docs that she was throwing up all night, and they would give her more meds, that would cause her to be more distant from reality, and then she wouldn't be able to have a coherent conversation at all.

After they cut her meds and gave her a babysitter, the docs would come in for morning rounds and they would ask her, "How are you feeling?" and she would say "I was throwing up all night long. I feel horrible." and they would turn to the sitter, who would report that she was asleep all night. Restless sleep, but sleep nonetheless...and no vomiting. No vomiting overnight means that the meds are working well enough and don't need to be increased, despite her state of mind.

Feeling horrible? Sure. But horrible in a way that medications will improve? No.

[estherchaya]

What Seth said. They were trying to sort out reality from fiction . If what I had been reporting had been true, it would have been deeply disturbing because it would have indicated total gut failure and an immediate need for TPN. Unfortunately, with my propensity for line infections, TPN is a huge risk. It is unlikely that I would survive another septic episode with TPN in place, so TPN is not a goal. Having nightmares about vomiting makes sense because it explains all the pieces of the puzzle - I wasn't lying to get more drugs... I genuinely thought I was that sick, but I didn't clinically need more medication, which was good because the medication had compromised my lucidity.

[proudestmom]

I really hope everything works out for you!