Wednesday, July 3, 2013


It has been difficult to write. I suppose there has been an element of discouragement. There is a sadness that weighs heavily on my shoulders. I want to be able to seek catharsis through writing, but I am reluctant to write without being able to focus on the positive.

The return of James' nausea and vomiting has been very difficult. Everything was put on hold again. James started to move backwards in several regards. He is back on an IV infusion of pain medication. He has not able to get out of bed throughout the episode to participate in physiotherapy. There has also been discussion about TPN following five days without nutrition. This should not detract from his astounding progress, but the nausea and vomiting easily lend themselves to a feeling of endlessness. We desperately want to continue to move forward. We desperately want to be home together.

Yesterday, James and I had hoped to be able to celebrate our first anniversary, but James was still miserable with nausea. There were a lot of difficult and conflicting emotions. We look back on the last year together with gratitude for one another and complete amazement at James' drive to survive. We share a lot of wonderful memories, but also a lot of pain and hurt. There is a lot of trauma in the transplant process. We have lived with ever-constant fears. We continue to live with a shadow of uncertainties. It makes our time all that more precious. It is an important perspective. We cannot take a moment together for granted. Everything can change in an instant, and it does.

Today, James' nausea was seemingly on the path towards resolve, but it was a frightening afternoon. James had a dystonic reaction to a last resort anti-emetic treatment. He has had dystonic episodes in the past to several different anti-emetics, but it was thought that James would be safe with very small doses. It was a mistake. It will never happen again. James' entire body started to shake with incredible muscle spasms and rigid jerks. He arched his back in bed, and started to distort into uncomfortable and repetitive positions. His jaw trembled and threatened dislocation. He had no control over these movements. He pleaded for help over and over again. He squeezed my hand with horrible strength. It took nearly an hour and several doses of Benzatropine and Benadryl to settle.

James also had a tracheotomy change in the late afternoon. This has become a rather routine procedure, but is fraught with its own discomforts and anxieties. James requires high doses of sedation that tend interfere with breathing, and lead to mechanical ventilation again. Nevertheless, James' new tracheotomy should allow for speech. He will also be able to have a swallow assessment. He might be able to eat and drink for the first time in several months. That will be a great reward for all of James' exceptional hard work.

We are completely exhausted (to say the least). Exhaustion takes precedence over writing, and I am going to attempt sleep again. My migraines have returned with full force. I have not had relief for nearly ten days. Sleep is not a guarantee, but it does provide some temporary respite.


  1. Dear James and Adena,
    I Am so very sorry for this difficult journey you are on. I check in every few days and tonight I am heartbroken for you two with this recent set back. I pray you will both get some rest and more healing for James. You are an adorable couple and I pray you can get off all those machines and get back outside soon! Go home, go home the two of you. Adena, you are a gifted communicator. Is anyone there to help you during the long, long hospitol stay? I wish I could somehow help.

  2. Hi ,
    I am a former sufferer of dystonia and want to offer you my support if you are still struggling with this awful disorder or another movement type of neurological disorder.

    I have put many years of my life into helping dystonia sufferers find relief, and through my efforts was able to get a medical study done at Johns Hopkins Medical Center with the program that helped me.

    It is my pleasure and privilege to work full time in helping dystonia sufferers find relief and get educated
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    Thank you.
    Steve Zarren

  3. I think you are so so inspiring. Thank you for sharing your story. Stay strong. Strangers are rooting for you!!