Sunday, June 2, 2013
These words are difficult to write. I want to communicate a message of hope, but I don't want to create a false pretense. That is, I want to be able to share an honest perspective, but I also strive to maintain a positive resolve. There is and will always be a precious balance. There are a lot of details to share, but I will mostly focus on the larger elements.
James' edema is a significant concern. This accumulation of fluid has a negative impact on his respiratory system (in addition to the function and regulation of his other major body systems). James' fluid balance continues to increase. There are challenges to the process of duiresis for a number of different reasons. James' creatine levels have been steadily increasing to the extent of renal dysfunction, or in the least, it is an indication of the potential for renal dysfunction and failure. This creates a barrier to intervention for duiresis.
Similarly, James' has been demonstrating signs of liver toxicity and liver dysfunction. He has had on-going and serious episodes of myoclonic muscle spasms, along with frightening episodes of delirium and hallucinations. It would be painful to even make an attempt at describing these episodes. There are no words to describe the distress. There have been several changes to James' medication in hopes of a positive improvement in all regards.
Finally, James' lungs present with the appearance of Primary Graft Dysfunction. According to my understanding, Primary Graft Dysfunction is a form of injury to the lungs (rather than a form rejection). This can be the result of the length of transition period during the operation, in addition to other recipient and donor factors. Of course, James is a rare case. It is difficult to make comparisons for a re-transplant patient on ECMO pre-transplant.
We have hope that James will continue to move forward. We expect these challenges along with the need realistic expectations, but I am also not ready to let go of fears for the future. James has incredible amount of fight and determination. His motivation and drive to survive will be his strength in the coming weeks.
Thank you (again and again).