Kirsten’s Medical Maladies: A Summary

In 2004 Kirsten was diagnosed with a benign pituitary tumor, which was removed surgically through her nose (transsphenoidally). What remained grew and was removed. It grew again and was removed via craniotomy surgery, followed by radiation therapy in 2010.

In the summer of 2012, while studying for her state nursing boards, Kirsten began to lose weight and complained of memory loss and cognitive difficulties. I assured her that it was all related to stress, and that if she simply ate nutritiously and studied hard, everything would be fine. What I did not know is that she had developed neuroendocrine tumors that were secreting adrenocorticotropic hormone (ACTH), which was signaling her adrenal glands to pump out extremely high quantities of cortisol.

Sometime in early July Kirsten slipped on a step stool and scraped her shin. Like a good nurse, she cleaned the wound, applied a bandage, and waited for it to heal. Despite the best care any wound has ever received, it wasn’t getting any better. After enough days had passed to cause concern, Kirsten called our primary care physician and made an appointment. The nurse practitioner, Kelly, attentively addressed a concern far more pressing than Kirsten’s shin. In her words, Kirsten looked awful. She was grossly thin and looked very sick. Tests were ordered and labs drawn.

Later that day Kirsten was diagnosed with type 1 diabetes. She immediately began frequent insulin injections. While she adjusted to counting carbohydrates and calculating insulin dosages, Kirsten took a leave of absence from work to figure it all out. It was an exhausting undertaking, and her health continued to deteriorate.

Shortly thereafter she was diagnosed by her endocrinologist, Dr. Rockwell, with possible Cushing’s syndrome, although she didn’t fit all the classic symptoms.

On August 17, Kirsten was talking on the phone to someone at Dr. Rockwell’s office when she became anxious and extremely confused. Then she missed her appointment with the dietician, which is very uncharacteristic. Dr. Rockwell’s office called for an ambulance, who (eventually) transported Kirsten to Maine Medical Center. Then they called me and left several urgent voicemails.

August 17 was my last day working as a web developer at Outside Television. My friend Jeff Olivier had taken me to lunch at Sebago Brewing to celebrate the occasion. When we returned to the office I checked my email and began reading transcripts of voicemails doctors had been leaving for me. I knew Kirsten was unhealthy, and getting worse. It wasn’t a total surprise she was back in the hospital. A month earlier she was taken to Maine Medical Center’s Emergency Department when her coworkers on the ninth floor recognized her confusion and became concerned. Then the diabetes diagnoses. Then the Cushing’s diagnoses. The sky seemed to be falling.

As was the case with Kirsten’s previous hospital visit, Kirsten’s potassium levels were at life-threateningly low levels. Blood sugar was off, as was heart rate and blood pressure. Kirsten weighed 82 pounds. This time, because of the history and obvious poor health, the medical team was more determined to find the cause of Kirsten’s health problems. A CT scan was ordered of her chest and head. Then an MRI. Her pituitary tumor hadn’t grown (in fact, it had been reduced, likely as a result of the radiation therapy), but two lesions were found on her liver.

During the early morning of August 21, Kirsten fell and fractured her C5 vertebrae. Her medical records report the cause of the fall as a seizure. However, the only objective evidence of that is the testimony of a single nurse/CNA who said they saw her upper extremities convulsing. Regardless of the cause of the fall, the resulting neck fracture damaged her C5 nerve, causing partial paralysis of her right upper arm. She was transferred to the Special Care Unit (SCU) and put in traction by Dr. Florman (the neurosurgeon who had performed Kirsten’s two most recent brain surgeries).

C5 is moved
The next day Kirsten underwent surgery to remove the crushed C5 vertebrae, replace it with a cadaver spacer, and fuse the C4 to C6 vertebra with a titanium plate. The surgery wasn’t as successful as we had hoped. Dr. Florman wasn’t able to align her neck, as she was too frail and her bones too soft. The risks were simply too great.

Post-surgery complications in the SCU required Kirsten to be intubated (placed on life supporting ventilation). She very nearly died that night, which was the most difficult experience of my life. I will never forget the conversations I had with Dr. Windy Wyatt about whether or not the medical team should continue to artificially sustain Kirsten’s life. I hope to never go through anything like that again.

When the ventilator was removed on August 24, Kirsten finally was allowed to eat. It had been four days, and by that time her weight was less than 80 pounds. She was frail. For reasons nobody understood, Kirsten was irregularly having brief episodes of delirium that lasted between five and fifteen minutes, several times a day. Now we know it was her body withdrawing from extremely high levels of cortisol, and a plethora of other endocrine issues. Dr. Rockwell described her as “metabolically deranged.”

The endocrinologist on duty was Emily Demetriou, who was fantastic. She ordered a special drug to suppress cortisol, named Metyrapone, that is not generally available. She also ordered an octreotide scan to locate possible ectopic sources of the ACTH production. Unfortunately, the radiopharmaceutical (“nuke”) required for the scan wasn’t available and had to be specially produced, which takes time.

Finally, on August 27, Kirsten finally had the first part of the octreotide scan. The following day she was transferred by ambulance to Scarborough for the second part of the scan. Both were negative, which doesn’t mean much, for several reasons, neither of which I will elucidate here.

On August 30, Kirsten had both of her adrenal glands removed by Dr. MacGillivray, at which time he also performed a laparoscopic biopsy of one of the two lesions on her liver.

Two days later, when I walked into Kirsten’s room in the morning, I found her bleeding from her abdominal incisions and being attended to by a surgeon and several nurses. They thought, because of her hemoglobin counts, that the bleeding was subcutaneous. However, later in the day she was rushed to interventional radiology to attempt embolization of several site of significant internal bleeding.

Because most of the doctors caring for Kirsten thought her episodes of delirium were absence seizure activity despite my arguments to the contrary, she was put on a continuous EEG, which lasted for forty-eight hours (and showed no abnormal activity, as I predicted).

On September 7, Kirsten was transferred by ambulance to the New England Rehabilitation Hospital. There, she worked very hard and received excellent care. She had several session of occupational, physical, and group therapy daily.

On my birthday, September 26, Kirsten finally returned home after nearly six weeks in the hospital. She continues to build her strength and expand her abilities.

Kirsten had a PET scan on October 9. The following day Dr. MacGillivray told us it revealed a lesion on her ilium. He referred us to an oncologist, who will be able to advise us on prognosis and treatment of her cancer.

3 Comment

  1. You guys have been thru so much. I am all teared up just reading this…

  2. This is the most fucked-up situation I have ever heard of. Have you guys considered the Mayo Clinic?
    This is just awful. Treat a symptom and wait for the next one to appear. Is there a “HOUSE” in real life? How about a clinic outside this country. I know of one in Switzerland. This is just wrong. And I’m just an outside observer.
    I’m so sorry, I have never known anyone to go through much. And you still manage to smile…..

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