This group appeared in my Facebook feed just when I realized I was going to need more support than I know how to ask for. My boyfriend went into the hospital to be evaluated for a liver transplant--testing to verify if he is strong enough for surgery before he gets added to the registry. It was supposed to be 2-3 days. We are now on Day 10 and, though he passed all of those tests with seeming flying colors, there is no plan to discharge in sight as his kidney function has deteriorated from trying to handle the fluid in his legs and abdomen, despite multiple taps during his stay.

I am 3 hours away, and am struggling with not knowing how to be useful. His original plan was to leave after testing and get all of his affairs (long-term disability, his rental property, wills, etc) in order. But this twist with the kidneys is making us fearful that he won't be discharged at all while he waits for a liver.

In a lovely (for us) coincidence, for several days, he was sharing a room with a post-transplant patient who lives in our area. He and his wife were able to share so much of their experience and practical advice with us that I thought, "Okay, I can prepare for that. Having bags to pack, and plans to make will take my mind off of the stress of the unknown and the surgery and recovery." But I wasn't prepared for the possibility that he is worse off than we thought, and that there may be no time to prepare ourselves, emotionally, financially, legally, practically, logistically.

I am afraid. And that fear adds to my feeling of uselessness. So I am off to pack a bag.