We have been to hell and back is my saying these days.
We have had so many ups and downs in the last two years it is truly a wonder that we are still here and somewhat sane.. I think anyway.
After being told no transplant then yes transplant, then no again then treatment for the past year to get back into criteria we were told no again. We ended up going to see an Oncologist. he said maybe a clinical trial if the Billirubin gets down to 3 or below!! Billirubin is 4. as of last week. then today while at the Onc. appt again he said that the Billirubin needed to be 2 or below!!! Of course I questioned that and he claims that because of the ascites it would need to be that low. He then suggests Hospice!! I was so shocked and disappointed I couldn't even talk because of the tears.
We get home a few hours later and I get a call from the visiting nurse telling me that the Dr. contacted her company and ordered Hospice!! We had told him that we wanted to talk to the visiting nurse about hospice and then decide when the right time would be. After talking to the nurse we get a call from Hospice! So they are coming tomorrow just for an informational visit right now.
Anyone have any info on this subject and what I might need to be asking? I am trying to keep it together but it is getting harder by the minute..