Thanks so much again, this site is such a comfort to me. It's 400am, I am at the hospital and can't sleep. Mamy of the doctors/social workers are telling us Jim can be discharged, "rehab is possible", "go home" (very nicely) while the nurses won't even let him stand to move from the bed to the comode because his heart and respiratory functions are so weak. They are telling me to get home health but I don't know how I can manage when he can't even sit up in bed on his own (and he can't lie flat). As background we have family in Tucson but actually live in Australia. The Mayo team wanted us to go back to Aus but explicitly stated that a commerical flight would kill him and to medievac him (at a cost of 300,000 USD, a cost our insurance won't bear as it is humanitarian repatriation as opposed to a transfer stemming from a need for urgent medical care). i don't think i can ask our family (my family, his inlaws) to completely remodel their house (i.e. wheel chair lifts).
I don't know what to do. He is so sick. He doesn't understand (and neither do the family or myself...) whether he is dying or just had a horrible setback. All of his family from Australia is here now and everyone is looking to me for leadership. Of course I know that CC will eventually take him but I don't know if this is a few weeks or a few months or longer...He is usually astute to his body's messages but he is also uncertain.
I think our the only feasible option in the short term is to go to a care facility focused upon rehab as I don't think I can bring him to a palliative care institution when some doctors are still telling us rehab.
It feels like the storm I wrote about last week has passed. The doctors had told me that he had been going down quickly but now he is doing much better. His blood is normal, infection controlled (gone), his fevers are gone and is heartbeat is much reduced (almost normal). However, he is draining approx 600 from his chest cavity each day (has a lung catheter) and as i said above he is bedridden (and dear God in heaven he has bed sores which hurt me so much my stomach bleed).
I am genuinely happy that so many of you are doing so well and I hope it continues. Nonetheless, it breaks my heart that my husband whose CC was sufficiently "non-progressed" (not sure if that's a word) to be listed for transplant in March is now to sick for chemo.
My apologies for the long winded vent...my heart is breaking for this beautiful, decent man who is suffering so much.