Thursday, May 30, 2013

post-transplant day one and two

I have been short of words for weeks. There has been an intense desperation with the weight of a looming depression. We were holding onto a shadow of hope. It seems impossible to articulate these overwhelming emotions. James is completely exceeding all expectation for re-transplant, and long-term ECMO patients. James has a chance. We have a chance. We will experience joy and happiness again. 

James came out of the OR at around 10:30am, and I was able to first look upon him at 2:30pm.  We were told that the surgery was within the realm of expectations for a re-transplant. James had a lot of bleeding during the surgery. There was a lot of scar tissue from the first double lung transplant, and James was on Heparin (an anti-coagulant) to maintain the flow of the ECMO circuit. He required twelve units of blood, and has had several more transfusions to maintain his hemoglobin levels. 

We were told that James would most likely remain on ECMO for twenty-four to forty-eight hours to allow his lungs to rest. The sedation was also expected to last for at least several days. James had made it through the hardest part of his quest for lungs. We would have a long road to recovery ahead. 

James' strength, determination, and drive have never been more evident. James was awake within hours, and mouthing "I love you" and "What happened?" This was not the only incredible feat and indication of progress. The ECMO circuit was removed at 7:00pm! There have been a constant of team members in and out of the room to send James best wishes, and affirm that James is doing even better than expectations. 

This morning, James was already looking better (and a lot less swollen). He has been removed from pressure control on the ventilator, and is on pressure support. He is being supported with 40% to 50% oxygen. (We had been on 60% to 100% for the last three months, in addition to 100% oxygenation from the ECMO circuit). He is very responsive to my voice and external stimulation, and of course, full of wide-eyed smiles. My world stops to experience James' gaze.

James was taken off sedation early in the morning, but within the hour, James was thrashing around and screaming in excruciating pain. The sedation was started again, but James has developed a high tolerance in the last few months. He wakes every few hours in a lot of pain. The team is working on getting him a PCA for personal pain management control.

I am feeling a range of emotions. It all seems very surreal. I am filled with an incredible hope for our future. I have not felt this level of joy in a long time. We feel very embraced by our families, friends, and communities. We are surrounded by love, light, and support. I read every comment, and I truly appreciate all the blessings.


  1. This makes me so happy there are tears in my eyes. Love you both!

  2. I'm sad to hear that he is in pain, but if this means we (most importantly YOU) get more time with him, then I say that's pain well worth it, despite its intensity, as long as he keeps choosing to continue. After going this far, I don't see him stopping now. Keep on keeping on, James and Adena! Here's to going for a walk without the circus of machines and nurses making a parade out of it! :))) Big hugs. This is huge progress. This is something new. May he continue to fight for it all. I'm so thankful he has the chance. There's hope of recovery now, and you didn't have that until this gift came. Love and light to you both and your families. To life!!

  3. You don't know me - I saw your story on Gulf Islands Driftwood yesterday and was very touched by your profound love. I am so happy for you both and hope that everything continues to go as well as possible.

  4. So grateful for surgery, the progress and the updates! My sister texted me during a training ride, and I was grinning and laughing like a mad man all the way home! I think nearby pedestrians must have thought I was totally bonkers...

    Now, despite the inevitable challenges to come in the next few days/weeks, you can much more easily and realistically envision long happy walks (and maybe bike rides too) that should help propel you guys through the rehab process.

    My best to the both of you!


  5. I am so glad to see that James and your miracle has happened! What a saga you have both been through. I am so happy for you both; I hope you are soon able to live out many of the great life experiences that you have been waiting to participate in together. My prayers are with you both on your journey ahead. May God bless and keep you comforted and strengthened. Ross.

  6. What a miracle,What a blessing. James is a true inspiration.His fight for life is something else.He will for sure have some rough days ahead but he is on the right road.So many people have been pulling for him,and prayers have been answered. Love to both of you xoxo Donna

  7. You keep me grounded by your love and compassion. Let there be a party soon where I can join the dance with you both. Peace, and more peace for you both.

  8. I have been following your story for months and can't believe you have finally been blessed with a transplant. You are both in my prayers ! Stay strong.