Kirsten Is Sick – Wednesday, August 29, 2012

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Jill and Kurt Stahl visited and brought us an assortment of treats from Standard Baking, where Kurt works. Shortly after they arrived a resident arrived to give us an update. The octreotide scan, he informed us, is negative, revealing no ectopic ACTH secreting tumors. This means Kirsten will have a bilateral adrenalectomy, possibly late tomorrow. Hopefully they’ll also do a biopsy of one of the liver lesions. Although the lesions are ruled out as the source of the ACTH, they may still be cancerous.

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Dr. Irwin Brodsky, an endocrinologist, stopped by to talk to us. Kirsten’s cortisol levels are so low they’re nearly undetectable, which is good (the extreme high levels of cortisol in her system caused all of Kirsten’s maladies). The Metyrapone is working to shut off cortisol production from the adrenal glands. They are adding controlled levels of cortisol back to her system with Dexamethasone. He will increase her dosage of Dexamethasone for surgery, as higher levels are required for stressful situations.

They are still giving Kirsten dextrose through the IV. Dr. Brodsky is going to stop that because blood sugars have gotten high. He was giving her the dextrose to add calories, but figures since her sugar is high that she can get her calories through her food, which she is tolerating well.

He is concerned about Kirsten’s osteoporosis, but said that bones are so slow to heal that we can address that at a later date by adding bisphosphonates to her regimen. High cortisol is what caused the loss of bone density, so correcting that is the best thing we can do to make her bones stronger.

Kate Byrne is visiting now. She’s been such an angel. She cut Kirsten’s broccoli and is making her laugh. Soni and the girls arrived, too, but are sitting out in the waiting area.

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The physical therapist, Liz, and I helped Kirsten sit on the edge of the bed. After the initial wooziness wore off, Kirsten wanted to do more, so she stood and we walked out the door and down the hallway. When we returned to the room Kirsten sat in a chair for a bit before getting back into a clean bed. Woo hoo!!

The care today has been much better. No idea why. ;)

A neurologist stopped by this morning to talk about Kirsten’s seizures. I recommended we wean Kirsten off the Levetiracetam so that we can see what happens while in this controlled environment and not at home. She had another episode of slow speech, searching for words, and cognitive impairment after the walk, to they’re going to continue the dose for now.

Kirsten’s friend Jen Low from upstairs stopped by for a visit. She’s SO sweet. She brought Kirsten a nice little statuette and card from her friends in R9 and CICU. Kirsten smiled when she read all the kind words her friends had written to her, wishing her well and telling her that she is missed at work.

A statuette from Kirsten’s R9 and CICU coworker friends

Finally, after several requests, I got a doctor besides a medical student to come talk to us. Dr. Jennifer DuPrey, who was attending last week when Kirsten was in the SCU, visited us to talk about next steps. She was very nice. I expressed to her my concern that Kirsten may not have a seizure risk–that she may not have ever suffered a seizure–and that we might be looking down a wrong path. A slow titration off the Levetiracetam makes sense to me, but Dr. DuPrey thinks it’s best for now to maintain what we’re doing, as health is improving and surgery will be soon. I concur. Kirsten’s episodes of delirium don’t have an obvious trigger. Dr. DuPrey posited that they might be the result of extreme high levels of cortisol, or that her brain is normalizing itself after a long period of being bathed in it.

Dr. DuPrey said she was surprised Kirsten made it through the night last week in the SCU. I’ve heard that from several doctors and nurses who were there. It’s very sobering.

Dr. DuPrey is going to find out if the octreotide scan has been read. It has not yet been transcribed. The scintigraphic image will determine the type of Kirsten’s next surgery: a bilateral adrenalectomy or a simple resection of an ACTH secreting tumor. It has been frustrating sitting around not knowing.

Kirsten was just given her daily Metyrapone pill. It’s the one that has been specially requested from the pharmaceutical manufacturer and not generally available. Check out the packaging date.

Metyrapone

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Kirsten is watching a movie on Netflix on her MacBook Air. She’s doing very well. She’s hungry, as they still have not removed the NPO order. No word yet on whether or not she will have surgery today. The surgeon did visit, but didn’t bring any news. We still have no result on the octreotide scan from the last two days. The medical team was supposed to round, but we haven’t seen them.

The care today in R6 is much better. I think they realized I wasn’t going to go away or shut up.

Maggie visited last night, which Kirsten really enjoyed. Kirsten didn’t tell me what they did together, but she smiled a lot when she mentioned it.

Dr. Emily Demetriou stopped by for a social visit. She was the on-call endocrinologist last week when Kirsten was in the SCU. She is so sweet. I enjoyed talking to her, and picking her brain about endocrine stuff.

6 Comment

  1. Glad to hear that the care she is getting has improved. Hoping you get some answers from the testing soon. Happy to hear also that Kirsten has such a great friend in Maggie. With all the misery she has had to endure, it’s good to have the friends and family that can make her smile. Once again a wonderful example of a couple who is truly dedicated to each other. Thinking of all of you and extremely happy that Kirsten is smiling again.

  2. Kris Lethin says: Reply

    I never thought the line “she’s hungry” would make me feel so good but for some reason it just seems like such a healthy thing to be. Love you guys.

  3. Good job, y’all. Reading your updates daily. Greetings to Kirsten!

  4. Kris Lethin says: Reply

    I take it Metyrapone is not a close cousin to Mascarpone or Alcapone; but I digress. Love you guys.

  5. Hey Brent,

    Why do you think “that she may not have ever suffered a seizure?”

    Thanks for continuing to update everyone concerned. More so for your fearless advocacy for Kirsten. A few years ago I was in the hospital for over two weeks. Molly organized near round the clock advocates to be in the room with me as I was delirious and the care I was receiving was poor. I can’t imagine having made it through that time without her and other loved ones who stood by me and made sure I got the best care possible.

    I sent you a message on facebook too, so check that out when you have a chance.

    Talk soon,
    Adam

    1. She probably did have a seizure, but there’s no way to verify objectively with any kind of scan. She broke her vertebrae at 0200 and there were no witnesses. It’s possible she slipped and fell when she got up to go to the bathroom. We’ll never know. A CNA sat with her throughout the morning and reported that she witnessed a second seizure (small scream followed by shaking, which lasted 60-90 seconds).

      For the past couple months Kirsten has been complaining of cognitive impairment: loss of short-term memory and ability to find the words she needs to articulate her thoughts. Since she broke her neck she has frequent episodes where she just stares longly into space. She can answer questions like “Who is the President of the United States?” and “How many daughters do you have?,” but speaks very slowly and cannot express herself. Those episodes are lasting from about five to fifteen minutes, and nobody knows why. They’ve been calling them micro-seizures, so she remains on Levetiracetam and seizure precautions.

      One morning in the SCU, Kirsten became very confused and panicked. Her nurse thinks it was a mild seizure. They sent her immediately for an EKG, but found nothing.

      I spoke with several neurologists who have few answers, but want to do more investigations after Kirsten has been discharged and is more well physically. The attending physician, Dr. DuPrey, suggested the episodes might be a result of cortisol reduction, and that the previous impairments could be from the extreme high levels of cortisol in Kirsten’s brain.

      It remains a mystery. I’d rather Kirsten not be taking seizure drugs if seizure’s aren’t a risk. And I don’t want the medical team focused on seizures if the problem is something else. Everything must be on the table as we seek a diagnoses. It’s too early, and there are too many unknowns, to hone in on any one suspect. I may be just a web developer, but I was an avionics technician in my past life, and know how to troubleshoot complex problems. :)

      Thank you for your story about Molly’s advocacy. She is a gem I would like to get to know. Patient advocacy, unfortunately, is an important part of adequate medical care. It shouldn’t be this way, but that’s the reality. Ra ra ra USA!

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