Sunday, April 14, 2013

ECMO clot

We made it through the rest of Saturday without further issues. The bleeding at James' suture site has subsided, but not without a cost. We have been very fortunate that James' ECMO circuit has been clear from clots. This is rare for a patient on ECMO for this length of time. A clot has now formed as a result of those few hours without Heparin (blood thinner) to allow the sutures to heal. The clot will require close monitoring for growth and movement, but it should not impact the flow or function of the circuit. James is now back on Heparin with the hope is that the clot will slowly dissolve with time.

Clots are very common at this stage, but it is difficult not to feel concern. Reassurance doesn't soothe the intensity of our emotions. We make an attempt to let go of worries that are beyond our control, but fear is a constant shadow. It is hard to accept this level of helplessness.

James has been relatively stable. This seems to increase the magnitude for concern, or at least, our perception of the magnitude for concern, with each change in health status. I am able to recognIze on a rational level that circuit clots are not a major issue, but it is hard to reconcile that with the level of fear that I experience at an emotional level. Everything feels unpredictable, and to some extent, there are no certainties. We witness the realities of the ICU on a daily basis. It forces us to be painfully honest about our time together. It makes it harder to smile and laugh, but also makes smiling and laughter that much more important. It is a strange, almost paradoxical, experience. Our lives are on hold indefinitely, but everything can change in an instant.

I cannot end this blog post without a remembrance and acknowledgement of another death in the transplant community. My heart aches for this warm and loving family. We have witnessed too many deaths on the transplant list. This gentle and sweet man had become too ill for transplant. The wait was too long. He did not make it. No one should die waiting for transplant. Please, check your donor status, and talk to your family and friends.


  1. It is so sad that people have to wait so long for transplant.The love you two have for each other has got you this far and will continue to grow .My thoughts and prayers are with you every day as are alot of other people .We are all pulling for James to get his miracle of life. xoxoDonna

  2. Love you guys and miss you so much. Always thinking of you. Can't wait to hear "we've got lungs" from you.