Friday, February 22, 2013

back on the list

James is back on the transplant list. We are very excited to share this news with all of you. Our positive news does come with a precaution. There are high risks associated with re-transplant, and it is essential to maintain that precious risks versus benefits balance. James is no longer on hold for transplant, but the decision with be re-evaluated on a day to day basis, because of the additional risks of being in the ICU (i.e. further deterioration). We are excited to have a goal to works towards. There is motivation to keep fighting, but I am still feeling wary (and weary). There are no guarantees. We are still waiting for an appropriate and suitable donor match. It could take weeks (or precious months that James does not have to wait). Of course, there is always hope, and for now, a reason to celebrate (and not to mention, James' birthday tomorrow)!

In terms of health status, James is having low grade fevers again. His carbon dioxide levels are dangerously high. It is very scary, to say the least. He is often in and out of drowsiness and sates of confusion. There is minimal quality of life in the ICU. We talk a lot about the need to focus on gratitude, and to find hope in small improvements, and positive aspects of a miserable situation. We love being together, and the dream of a future together is our source of light and strength.

James can also be alert and engaged. He still has that incredible determination to build strength and endurance. He understands the importance of optimal health for transplant. He exercises with light weights, and will make an attempt at a seated pedal bicycle in the late afternoon. He has been able to go for a few steps here and there. We both beam with pride. James fights to the level of heroic measures. I am in awe.


  1. What wonderful news! Just in time for James' birthday. Happy Birthday, James.

  2. We are thinking of you James and sending lots of love. Jonathan and Evelyn

  3. The darkest hours are always before the dawn. James has had his darkest hour and tomorrow is his birthday and a new dawn.Happy birthday James I hope all your wishes come true very,very soon.Adena you are such an amazing and inspirational young lady ,true love for sure. Stay strong xoxoDonna

  4. I am in awe, too, of both of you. Holding you in my heart on the west coast,