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Karen's Musings
Random Rambling
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 infected.  He felt that I needed to go straight to the emergency room.  Knowing how darned difficult it is to get an appointment with my doctor, I went to her first (she and the hospital are about the same distance).  When I checked in with the receptionist, I was quite early and I asked them to check with the doctor to see if she would prefer I proceed to the ER or wait for my appointment.  Dr. S came out to see me and took one look at the site, which by then was red all the way up to my shoulder, and sent me to the ER.  Argh.

Meanwhile, my husband was in California (the other side of the country) and was expected to be there for at least a month or more.

I knew a line infection probably meant 3-5 days in the hospital, so I arranged for extra babysitting and for my mother to spend the night with the kids.  I arranged for people to take the kids for the weekend in case I was still in the hospital then.  And I settled in for several hours in the ER waiting room.  Once I got called back to see a doctor, she confirmed what I already knew: that I needed to be admitted for treatment, and that I could expect to wait 6 to 8 hours for a bed for admission.  Fortunately, Hopkins has a beautiful new ER, so at least it was comfortable-ish.

The next day was a flurry of tests and cultures, etc.  And shocking, but well-timed, news.  My husband's project in California had been overstaffed, so he was sent home after less than a week there, instead of the promised 6 week project.  Well, at least that meant I didn't need to worry about where to put the kids for the weekend. What we didn't realize at the time was how crucial it would turn out that he ended up being home.  Because my expected 3-5 day hospitalization turned out to be a 16 day saga in which I was barely lucid and have very little memory of even today.  Thank heavens he was able to be there for most of the time I was inpatient.

Shortly after I was admitted, it appears that I aspirated something (we're not sure what), and I got pneumonia (right after having gotten the pneumonia vaccine, ironically).  I have no memory of this.  I do remember going to interventional radiology to get a port put in (lower risk of infection with a port than a PICC or Hickman catheter) and being told I had a fever so I couldn't get it that day.  I imagine that was the start of the diagnosis of pneumonia, but from there, my memory is very spotty.  Apparently after I got sick, I became quite delusional, had a psych consult called in, and ended up with a 24/7 babysitter.

Since getting discharged, I have spoken to numerous people who have told me that they talked to me at multiple points during my 16 day hospital stay - I have absolutely NO memory of these phone calls.  Even a call with my grandmother.  I went on a walk of the hospital nearly every day with my husband and I only remember a couple of those walks.  Apparently, we bought a father's day card for my father, which I only vaguely recall.  Also, apparently I'm a smart-ass.  When I finally got cleared to get a port (I don't remember getting it - I just now have this weird thing implanted under my skin now, which I find really disconcerting!), apparently I said to the resident, "Don't take this the wrong way or anything, but what year are you?" "Fifth year," he said.  "Okay then, you're good," I replied. I can totally see THINKING that, but I can't believe I actually said it.

I also received a blood transfusion (2 units of blood) because my hemoglobin level went down to 6.6.  Bad news bears.  Apparently I said to the nurse, "When my daughter was in the NICU and had a blood transfusion, they made me sign a consent form that said she had a 1 in 16,000 chance of getting Hepatitis B and a 1 in 60,000 chance of getting HIV [it might be the other way around], why aren't you having ME sign a consent?"  My husband doesn't remember me getting a satisfying answer to that question.  It must be covered under my general consent for treatment, which I signed upon admission. Frankly, I don't even remember signing the general consent for treatment, so I'm not even sure that's valid since I may not have been lucid at the time that I signed it!

Because of things that were said and done during my delirium, a condition of my discharge was that I see a therapist weekly for cognitive behavioral therapy to help me "cope better" with my illness.  Well, to hell with them.  I already had a perfectly good therapist, and I'd like to see any of the doctors cope as well as I do with not eating solid food for three years.  But whatever.  I will comply with weekly CBT, but not because I'm not coping well, but because I'm literally traumatized by the fact that I lost over a week of my life in my memory.  I keep learning things about my time in the hospital that I have ZERO memory of and it is beyond disturbing.  Not because the things that happened were disturbing in and of themselves, but because I have NO recollection of them whatsoever.  Two rabbis have told me that they spoke to me several times and have reassured me, without prompting, that I said nothing inappropriate.  (It worries me a little that they felt the need to tell me that I said nothing inappropriate when I didn't ask that question...)

Suffice it to say, it's taking a little while to readjust to life on the outside.  I'm seeing a new therapist on Wednesday who was recommended by our developmental pediatrician - I trust him implicitly and he promised me that she wouldn't be offended if I called her a shrinky-dink, which is crucial to our getting along.  I still am recovering from the pneumonia (I'm told by multiple health care providers that it will take at least a month to fully clear - ugh!).  I have a new feeding tube pump which gives 50% formula and 50% water flushes each hour in hopes of keeping me better hydrated without having to resort to IV fluids via my port (to keep my infection risk lower).  And I see my gastroenterologist again on the 28th, so maybe she'll have more answers for me.

Hah.  Hah!

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26 comments or Leave a comment
eyelid From: eyelid Date: June 18th, 2012 10:52 pm (UTC) (Link)
do they know why you lost your memory?
estherchaya From: estherchaya Date: June 18th, 2012 11:01 pm (UTC) (Link)
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.

I have a few spotty memories of the psych consult (the guy was an ass - he outright accused me of causing my line infections myself, but beyond that I remember very little from the consult, but he came up with some crazy wackadoodle diagnoses which I now need to fight to have removed from my record - which I'm allowed to do under HIPAA, but they have the right to deny should they decide the record is complete and accurate - SIGH).

But mostly, I don't remember much of anything. I came to around Sunday, the 10th and I'm pretty sure I lost all of the first week of June and possibly some of the week prior. I was discharged on the 13th (would have been the 12th, but my feeding tube got clogged and they had to give me a new one).

I lost 15 pounds in the hospital. Normally this would be a good thing - but that's not the way to lose weight. I was actually getting MUCH more nutrition in the hospital than I was getting at home, so it's a bit weird that I lost that much weight. It's a testament to how sick I was, really.

Edited at 2012-06-18 11:02 pm (UTC)
estherchaya From: estherchaya Date: June 18th, 2012 11:06 pm (UTC) (Link)
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 From: magid Date: June 18th, 2012 11:02 pm (UTC) (Link)
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.)

Edited at 2012-06-18 11:04 pm (UTC)
estherchaya From: estherchaya Date: June 18th, 2012 11:05 pm (UTC) (Link)
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 From: estherchaya Date: June 18th, 2012 11:11 pm (UTC) (Link)
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 From: magid Date: June 18th, 2012 11:13 pm (UTC) (Link)
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.
estherchaya From: estherchaya Date: June 18th, 2012 11:21 pm (UTC) (Link)
Well, at the very least, it would leave me with a feeling of vindication. Right now I feel a bit like I'm losing my mind. It's not a pleasant feeling. Having another reputable psychiatrist tell me I'm not crazy would probably ease my mind a little!
kalki From: kalki Date: June 19th, 2012 12:51 am (UTC) (Link)
Oh hon. That is so scary and crazy. Huge hugs.
estherchaya From: estherchaya Date: June 19th, 2012 01:21 pm (UTC) (Link)
Thanks. It's petrifying, really.
mrn613 From: mrn613 Date: June 19th, 2012 04:02 am (UTC) (Link)
Glad you are out of the joint. Is there anything i can do to help?
estherchaya From: estherchaya Date: June 19th, 2012 01:22 pm (UTC) (Link)
Thanks. Nothing you can do other than keep us in your tefilos.
From: proudestmom Date: June 19th, 2012 05:54 am (UTC) (Link)
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 From: sethcohen Date: June 19th, 2012 11:43 am (UTC) (Link)
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.

Edited at 2012-06-19 11:44 am (UTC)
estherchaya From: estherchaya Date: June 19th, 2012 01:20 pm (UTC) (Link)
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.
From: proudestmom Date: June 19th, 2012 01:44 pm (UTC) (Link)
I really hope everything works out for you!
mscongeniality From: mscongeniality Date: June 19th, 2012 02:17 pm (UTC) (Link)
I'm sorry I didn't reply to you on Facebook. I tried multiple times through the day, but it never allowed the post to go through.

The bulk of my original comment was this:

Ugh. Yeah, that's above and beyond lost memory. Actually, it's beyond the pale. Can you specifically request a copy of the psychiatrist's report for your regular therapist? Or can you get an outpatient psych second opinion from one of their doctors while not delirious to counter? I mean, you've got enough obstacles in treating this, throwing in another block to give the insurance company ammunition is very much the opposite of helpful.

I'm sorry you're having to deal with that.

So...much the same as what other people are saying and asking.
indigodove From: indigodove Date: June 19th, 2012 06:27 pm (UTC) (Link)
*hugs* All I can say is that I care, you & your family are in my prayers, and I am deeply sorry you've been through so much. And I hope you are successful in removing wrong diagnoses from your record! What insult to injury!
arosoff From: arosoff Date: June 20th, 2012 12:53 am (UTC) (Link)
I really can't believe all you've been through. I'm spitting mad about them thinking that delirium is some kind of secret truth state or whatever it was. I've watched you go through a lot of things over the years, many of them medical, and you've always been very grounded and realistic, never hysterical.

As for the rabbis, it's probably something they've been asked before. When I had general anesthesia, they gave me something to relax me before wheeling me into the OR. I remember feeling very drunk, and the same way again when coming out of it--I do remember yelling at the PACU nurses. The first thing I did was apologize in case I'd said anything inappropriate.
hannahsarah From: hannahsarah Date: December 12th, 2012 03:56 pm (UTC) (Link)
THIS, all of it.

You are one of the most rational people I know! I can't believe they did a psych eval on someone who was OBVIOUSLY DRUGGED UP and feverish. Anybody would be acting strange in that situation.

The hospital is crazy, not you!
skatured From: skatured Date: June 20th, 2012 02:58 pm (UTC) (Link)
What an awful experience. I hope you find answers and feel better soon.
cleobatya From: cleobatya Date: June 21st, 2012 08:07 pm (UTC) (Link)
you are one of the most sane people I know...I dont know how you are getting through all of this but I really hope that it gets better soon.
lynsaurus From: lynsaurus Date: June 21st, 2012 09:04 pm (UTC) (Link)
Hugs. Best wishes for better days ahead.
mamma_bird From: mamma_bird Date: July 23rd, 2012 06:08 pm (UTC) (Link)

Refuah Shelaimah

You may not remember me, but I was on your list years ago. I remember back before J was a part of your life. I do hope you feel better soon.

From: happy2behere Date: July 27th, 2012 04:51 am (UTC) (Link)
Maybe if you do do something to regain your memory or even some parts than you can get it off your record. It's crazy that you're going thru all this!
hannahsarah From: hannahsarah Date: December 12th, 2012 03:59 pm (UTC) (Link)
When I had my hysterectomy, I apparently made a pass at one of the night nurses. I guess that makes me a closet lesbian. Who knew?
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