Day 117
Sometimes I wonder. Eight days ago, Tuesday of last week, John told Emory that he wanted to transfer to Seattle. On Friday, the transplant coordinator had him sign the transfer papers, the same day that his doctor urged him to get started on treatment in Seattle no later than this week.
I confirmed with our insurance about the transfer that day and contacted Seattle first thing Monday. His new transplant coordinator was out for the day, but I did get a call from someone else, though she could say nothing more than I should expect a wait of two to three months, but I should get a call back the next day.
When Seattle didn't call Tuesday I called, couldn't get past voice mail and then emailed two doctors and the one nurse we had talked to. Wednesday afternoon, one of the doctors suggested I talk to yet another person. She wasn't the right person, but she did connect me to the new transplant coordinator.
She really did try to be helpful, and told me a few things, but left me with no assurances other than that she would be getting back with me soon. She did go over John's file with me and I wish I had a word for what I learned.
It turns out, first of all that his coordinator at Emory did not fax his donor transfer until Tuesday, four days after he signed it. As of this afternoon, it still had not been processed at the NBMC. This meant that Seattle still could not start on his case and it also left the transfer at the insurance company open. Five days - the same period it took me to get a doctor at Emory to talk to me when John first was sick.
To add insult to what I hope won't prove to be injury, Emory's person, and I don't intend to give a name, didn't include the detailed HLA information on John's possible donors in what was sent this week, so Seattle still has no real sense of whether John has a possible donor.
Even though this is a person's life at risk, that much might be forgivable. What is worse is that the same person lied to us three weeks ago when we called while sitting with the doctor in Seattle. We asked why the person hadn't sent the donor information and were assured us that it was being faxed that very moment. It was never sent.
John has been rightfully anxious about following the doctor's advice and getting started on treatment. It was hard to explain that some of those he has trusted with his life could delay this way and then lie about it. It makes you wonder.
I confirmed with our insurance about the transfer that day and contacted Seattle first thing Monday. His new transplant coordinator was out for the day, but I did get a call from someone else, though she could say nothing more than I should expect a wait of two to three months, but I should get a call back the next day.
When Seattle didn't call Tuesday I called, couldn't get past voice mail and then emailed two doctors and the one nurse we had talked to. Wednesday afternoon, one of the doctors suggested I talk to yet another person. She wasn't the right person, but she did connect me to the new transplant coordinator.
She really did try to be helpful, and told me a few things, but left me with no assurances other than that she would be getting back with me soon. She did go over John's file with me and I wish I had a word for what I learned.
It turns out, first of all that his coordinator at Emory did not fax his donor transfer until Tuesday, four days after he signed it. As of this afternoon, it still had not been processed at the NBMC. This meant that Seattle still could not start on his case and it also left the transfer at the insurance company open. Five days - the same period it took me to get a doctor at Emory to talk to me when John first was sick.
To add insult to what I hope won't prove to be injury, Emory's person, and I don't intend to give a name, didn't include the detailed HLA information on John's possible donors in what was sent this week, so Seattle still has no real sense of whether John has a possible donor.
Even though this is a person's life at risk, that much might be forgivable. What is worse is that the same person lied to us three weeks ago when we called while sitting with the doctor in Seattle. We asked why the person hadn't sent the donor information and were assured us that it was being faxed that very moment. It was never sent.
John has been rightfully anxious about following the doctor's advice and getting started on treatment. It was hard to explain that some of those he has trusted with his life could delay this way and then lie about it. It makes you wonder.
