home with an update

James was discharged from the hospital on Monday evening. He was absolutely ready to be back in his own bed and the little space we have made into our home. We were very concerned about his blood oxygen saturation levels, but James' lung function appears to be recovering from the aspiration episode. We thought that James had become oxygen-dependent, but his blood oxygen levels have been slowly increasing to within a healthier range, and above the level that would indicate the need for supplementary oxygen support. James' shortness of breath continues to be severe in terms of the need for longer recovery periods and an ever-growing definition of exertion. These experiences are compounded by the fear and anxiety that are associated with the sensations of breathlessness. We are hopeful for that his shortness of breath and breathing difficulties will also continue to improve from the aspiration alongside his healing lungs. 

James' determination to work through the discomfort and pain of dyspnea continues to be remarkable. He is increasing in both strength and endurance at the Transplant Gym. He is now able to engage in cardiovascular activities for ten minutes without the need for a break and can complete twenty minutes on both the treadmill and stationary bicycle. He has also been able to increase his arm weights by a couple of pounds. These are more than noteworthy improvements. A few weeks ago, James was limited to only two to three minutes of cardiovascular activities between breaks and twenty minutes on either of the machines (rather than twenty minutes on both). James had even been exercising with the absence of weights for a few weeks. These improvements have been irrespective of James' frequent hospitalizations and recent aspiration episode. 

As for myself, I am coping within the realm of expectations for the given circumstances. There is a lot of grief and sadness to process. I give myself permission to experience the full extent of these emotions, but I also make a conscious effort to focus on positive experiences and moments of gratitude. My love for James does not ever seem to wane, but rather, I feel an ever-growing depth and intensity of love for him. James is a source of continuous strength and hope for the future. I would love to emulate his constant state of optimism. That is not to suggest that James does not also have moments of grief and sadness, but James always seems to have a positive resolve. He knows the importance of attitude for survival. There is not another option for James. James will have another double-lung transplant. Our dreams will become possible again. That is the only focus for the moment, and for the future. We will get through this. We have no choice.

and a second entry from the wife

Jamie and I are both recovering from the complete lack of sleep of the last few days. We are relieved the be past the point of severe pain and nausea, but James will not be able to be discharged from the hospital without an assessment of his supplemental oxygen requirements. His lung function appears to have deteriorated to the point of impacting his blood saturation levels. We were prepared for this next stage in the progression of the disease, but that doesn't necessarily ease the emotional and mental transition. James has been on supplemental oxygen throughout this hospital admission for low levels of blood oxygen saturation (and decreases with exertion and during sleep). James appears to have become oxygen-dependent again. We feel a sadness, to some extent, but not beyond expectation given the circumstances. We don't imagine that this change will have a significant impact on James' quality of life on a daily basis. Some of our best collections of memories are from James' pre-transplant oxygen-dependent days. That's all for now. I am conserving my energies for the next few days. We promise to continue to update. As always, James and I are sending love, love, and more love.