Kirsten Is Recovering – Friday, September 7, 2012

Kirsten on her last morning at Maine Medical Center
When I visited Kirsten in the morning before work, she looked good. She had a plethora of complaints about her care, but was in good spirits. I expressed some of my concerns with one of her day-shift CNAs, Denis. He said I should contact the nurse manager, Ellie Spear. I had been wondering with whom I should address my concerns. I suppose I should have looked harder, as her name and telephone number were posted clearly on the wall in Kirsten’s room.

Before I left a surgical resident came to remove Kirsten’s abdominal sutures. That was my cue to leave.

I didn’t stay long before I had to go to work. I tried very hard to focus on learning my new job, but I was very worried about the abysmal care and treatment on R4. Then, at 1038 I got a voicemail from Heather, a case manager at Maine Medical Center who is following Kirsten. Dr. Marc Jacquet, the attending hospitalist, thought it was time for Kirsten to leave the hospital. I had obvious concerns: her blood pressure in the morning was high and her hemoglobin low. That doesn’t seem medically stable, which was the requirement for discharge. Then I got a text from Kirsten stating that she was being moved. She seemed pleased. I immediately packed my things and left work. I called Heather on the way to the hospital, who said Dr. Jacquet would meet me in the room when I arrived.

While I was waiting for Dr. Jacquet I tried to stay busy doing all of the other things that need doing: pay for Jenna’s violin, pay the storage unit fees, get the girls set up for hot lunches, figure out why my E-Z Pass has been suspended, etc. I have been suppressing a torrent of emotion and was feeling very much overwhelmed emotionally and physically. Living itself was beginning to seem like too much of a burden. I broke down sobbing with pencil in one hand and phone in the other, while staring out the window of Kirsten’s hospital room. Kirsten, apparently not as asleep as she had seemed, rolled herself in bed (an amazing feat, considering) and began crying, too. We embraced for an extended period, which lifted me and reinforced my resolve to keep keeping on.

I sat and talked with Dr. Jacquet in Kirsten’s room for a long time. I repeated my concerns about the seizure diagnoses and the way it was written as fact in the chart, even though all the evidence is circumstantial. I agree that she should stay on Levetiracetam for now, as a precautionary measure. The EEG did not show abnormal brain activity, as I (apparently alone) had predicted.

Kirsten’s low hemoglobin (~10 g/dL) is not a major concern right now. They’re below normal, but the trend is positive, which is most important. Bones take time to produce blood cells, and the doctors have been ordering a lot of labs. That has slowed to allow her body to catch up.

While I was chatting with Dr. Jacquet, Dr. MacGillivray stopped by. He said that he had initially thought the tissue biopsied from the liver was not neuroendocrine, but now they suspect that is it. The initial exam was of the frozen sample. They are now staining both the permanent liver tissue and the old pituitary sample. That process takes time, which is why the final results are not yet back from the pathology lab. It’s too early to say definitively, but Kirsten’s liver tumors are likely metastatic cancer. Ectopic endocrine tumor cells originate at the gland that normally produces the hormone, and we know there is an ACTH source somewhere. The octreotide scan was negative, but it’s a test with very low resolution, and the radiopharmaceutical tracers used might not have been correct for the specific receptors on the tumor cells. It’s bad news, obviously. It’s the dreaded c-word. However, the tumors are small and usually slow-growing, which means patients can live for years with them untreated. Prognosis after treatment of ectopic ACTH producing endocrine tumors with chemotherapy (Kirsten is not currently healthy enough for chemotherapy) is extremely bleak.

Endotext.com, Chapter 7. Cushing’s Syndrome
Dr Damian G. Morris MBBS BSc PhD FRCP, Consultant Endocrinologist, The Ipswich Hospital, Suffolk IP4 5PN, UK
Professor Ashley Grossman BA BSc MD FRCP FMedSci, Professor of Endocrinology, Nuffield Dept. of Medicine, OCDEM, Churchill Hospital, University of Oxford, Oxford OX3 7LJ, UK

The endocrine resident, Dr. Jon Buchanan, talked to me at length about what to expect in the days, weeks, months, and years ahead. Kirsten is no longer diabetic and has not required any insulin. The prognosis for laparoscopic bilateral adrenalectomy patients is poor because synthetic replacement hormones are not as good as those we evolved naturally. Kirsten is quickly coming off her stress doses of hydrocortizone and should be at her maintenance dose of 20 mg/day tomorrow. At the same time they will start her on fludrocortizone. When she gets sick she will need to double her hydrocortisone dose. When she gets very sick she will require an injection and visit to Emergency Department.

Kirsten is no longer a diabetic! That has to be a world record for short duration of the disease. She was diagnosed with Type I diabetes about six weeks ago, and now requires no insulin.

While I was talking to Dr. Jacquet and Dr. Buchanan, a liaison for the New England Rehabilitation Hospital stopped by to answer my questions. I was concerned mostly with continuity of care, especially regarding endocrinology.

While I was at work this morning I called Eleanor Spear, the Nurse Manager. I left her a voicemail requesting her email address and that of Peggy Gillooly, the Nursing Director. Shortly after the doctors had left the room, Ellie stepped in and requested I accompany her to her office to discuss my quality of care issues. With Kirsten’s notes in hand, I outlined some of the more egregious issues with Kirsten’s nursing care, with special emphasis on patient safety issues, which have been significant. I summarized our experience. As we discussed the issues, I began to cry. They were very compassionate and seemed to be genuinely concerned and horrified by what was happening on the floor for which they were responsible. They asked if it would be okay to talk to Kirsten when she is more well.

As I was sitting in the room waiting for the ambulance crew, Kirsten’s room telephone rang. It was someone from Dr. Rockwell’s, Kirsten’s endocrinologist, office. She was calling to remind me that Kirsten has an appointment next week. I asked her if Dr. Rockwell was going to visit the hospital. After she said no, I asked if Kirsten would be transported to her office via ambulance. The woman was confused and clearly did not understand the situation. She said she’d have to get more information and call me back. Good plan. :)

Not long after my meeting with the heads of nursing, the paramedics arrived to transport Kirsten to the New England Rehabilitation Hospital (NERH). After a few minutes, she was gone. I packed up her belongings, and departed myself.

Kirsten is moving to NERH

The New England Rehabilitation Hospital seems nice. Kirsten has a window seat on the second floor. I spoke at length to the attending physician, Dr. Lisa Charbonneau. I corrected for her the description in the synopsis that states Kirsten suffered a seizure and fell out of bed, a claim that can not be verified and is based entirely on circumstantial evidence. We discussed Kirsten’s care plan at the hospital. A nutritionist helped Kirsten order her next three meals. Her nurse, who looks EXACTLY like Zach Galifianakis, seemed very nice, but talks about the Boston Red Sox more than Kirsten cares. That’s a problem we can deal with. Kirsten will have physical and occupational therapy daily, as well as adequate nutrition. We’re all pretty stoked to be to this point in the recovery. Kirsten can have a shower!

I left NERH to pick up a hot meal from our dear friend Rebecca. She gave me a huge hug, which I always love. I’m so thankful to our friends who have been so sweet and generous and kind. From there I dropped off a library book at the Portland Public Library for Hayley and headed home.

After the word about possible cancer and knowing the prognosis of that, and hearing about living without adrenals (I have read extensively, but some of it is so academic it doesn’t always sink in that it’s now Kirsten’s reality), and worrying about Kirsten’s care, dealing with my new job and the girls’ new school year, I was beyond my maximum threshold of preserving an aura of strength and resolve. When Skye and Hayley asked me about Kirsten, I broke down for the third time of the day. Skye rushed to console me, as did Soni. After a short time they got in the car to go to Jill and Kurt Stahl’s loft for dinner. I went into the bathroom and broke down into the most uncontrolled sobbing of my entire life. It was as if the pent up emotion of the last months and weeks was being released with each salt water tear. It felt pretty good, although I’m sure it looked absolutely pathetic. I didn’t really care.

Kurt made us spaghetti with fresh meatballs. He also heated a baguette, which he picked up from Standard Baking, where he works. It was amazing! It was great to talk to Jill while I ate, and Kurt later. They are amazing, and put a positive cap on one of the worst days of my life. I love them both, as I do so many of you who are reading these posts.

14 Comment

  1. Brent my heart breaks for you both as I read this entry. I hope that the care she gets at the Rehab center is better. Is there anything I can do to lift Kirsten’s spirits, such as sending flowers or some other treat ? Wishing I could hug you both right now and it would give you more strength. That being said the point where you both cried and embraced was very touching. You are each others rock, best friend, and partner and together you will take each day as it comes, just as you have up until now. Love being sent to you both.

    1. Thanks, Brig. Please don’t send flowers. They just die. We don’t need anything. She’ll read your comment, which will make her smile a lot more than wilty flowers. :)

  2. That was my thought on flowers too, but thought I’d ask. Just feel helpless and wish I could do Glad to know so many people are there surrounding you with love and care, and keeping you fed!

  3. Typing this through tears. How is wish I had a way to make it better. I love you both very much.

    1. Thank you, Brian. We love you, too.

  4. Christina Denny says: Reply

    You are both an inspiration. True love for each other is something that is beautiful and hard to find. Kirsten’s smile in spite of what she has gone thru is a testament that you can choose to look at things in a positive light. Seeing her smile brings a smile to my face. It is good to go thru the different emotions and process the many challenges your family is faced with. Thanks for being her advocate when she cannot. That is true love. I send my love to you and your family.

    Love,

    Your sister

    1. Thanks, Sis. Kirsten smiles no matter what. I love that about her.

  5. Reading all this just about ripped my heart out. You have all been so strong through all this, but its always a good catharsis to let all that dammed up emotional energy out. Glad you both were able to do that. You guys are amazing.

  6. I had to wait a while before commenting on your post because I couldn’t find the words. My heart just about broke for you while I was reading it and I had to fight back the tears. I thought that if I waited a while, and digested things, I would find the right words – say something that would somehow be able to reach you across this page and offer some comfort, express how truly sorry I am and how I wish I could do something to lessen the pain. But, hours later, I still can’t find the right words. The reality is that good people suffer all the time, illness is indifferent to that, and life is so damn unfair. The way you deal with challenges, though, speaks volumes. I am in awe of how you’ve been dealing with all of this – being there for Kirsten every step of the way, and having to start a new job and take care of the girls and everything else, all at once. 

    Kirsten, if you’re reading this, you’re in my thoughts all the time. 

    1. Thank you, Kerry. Life is unfair, and illness is like the cruelest honey badger: it just doesn’t give a shit. :)

  7. Brent and Kirsten,
    I can attest that it is at the times of our biggest trials in life that we find strength we didn’t know we had. (Would that be worthy of calling a miracle, Brent?? LOL) Both of you have shown enormous strength, with Kirsten’s smiles and Brent’s advocacy for her and your family, during a time when life appears to be knocking you down. I recently learned that tears are a gift. I have embraced them when I can, and Brent, I know, better than most, how a good cry can make you feel better. Love you guys and I am inspired by your love for one another. :)

    1. When I have a free minute I’m going to look into the evolution of crying. That shit really works! :) Thank you for your beautiful comment, Lisa. You know better than most how unfair life can be.

      And, no, tapping into unknown inner strength is not miraculous. :P

  8. Janice ORourke says: Reply

    My immense love to you. Immense.

    1. You’re the best, Janice. :)

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