2/13/11
Everything is calculated around day 0 = Tuesday February 15th. Teri was admitted on day -7 = Tuesday February 8th for blood work and cultures, to begin conditioning myeloablative therapy (to destroy her own marrow, including leukemic cells, and stem cells). In our garden parlance, both the flowers (good cells) and the weeds (leukemic cells) are wiped out in preparation for receiving new seeds (stem cells) from Ben that will produce temporary blossoms (white cells to fight infection), then another set of new seeds from a reasonably matched umbilical cord that will produce the permanent perennial red, white, and platelet flowers.
But oh, the disappointment, frustration and anger we experienced trying to get admitted. An extreme insurance and hospital hard-line saga. A roller coaster with unbelievable drops.
We were told that because the combined haploidentical(Ben)/umbilical cord transplant was denied twice by Principal Insurance, we would have to be admitted as self-pay. Then came the real surprise. At 1 pm Monday, merely 20 hours before the scheduled admission, we were told by the transplant liaison that although we would be entitled to a deep discount as a MCW employee, the hospital required that we bring 102K to the admission. We argued that this amount and timetable was unreasonable, but they would not budge. Furthermore, they had instructed the clerks not to permit us to be admitted if we did not bring the money. Imagine being treated like … the message.
We met that evening with the Dean and Director of Human Resources. The Dean said we would have to go through the insurance review process but promised to help in some way, even considering faculty fund raisers (for something insurance should cover?).
We scrambled … financial counselor, banker, loan officer, father … and fell short. The very last thing that Teri needed to worry about before the big event. Disillusioned, sleepless, frustrated. Can you believe it?
The next morning, the hard line in the sand had softened, and they would accept partial payment, and the rest by Friday.
Teri was admitted to the bone marrow transplant unit Room 5. It is adjacent to where Teri used to be. Her room faces B’s office. He has to squint really hard to read the window messages to him. She began receiving chemotherapy and anti-rejection drugs on Tuesday. She will get total body irradiation on day -1 Monday 14th. This is part of the protocol to kill as much cancer cells in her body.
On Friday evening, three days after admission, after the transplant specialists have again hammered away at the Principal’s medical directors, we received belated word that they have approved part of the transplant … in compartmentalized thinking, they will pay for the umbilical cord portion but not the haploidentical portion including Ben’s pheresis removal, the storage, and infusion. This is a combined transplant, but they want to split hairs so-to-speak or transplants here … At least our out of pocket costs will not be full value.
Still, they have not approved her autologous (self) stem cell boost that saved her life in November.
It’s a mad, mad, mad, mad health insurance world.
Ben is here giving himself GCSF to stimulate his bone marrow. His bones ache. Today, he got his stem cells removed over five hours, though unfortunately, his lines kept clotting off and needed restarting. The freeze the cells overnight and infuse them into Teri tomorrow day 0 Tuesday. They want to infuse 3 million stem cells into Teri followed by the umbilical cord blood. Then we will wait 2-3 weeks for Ben’s stem cells to produce white cells to help Teri fight infections and then several more weeks for the cord stem cells to completely repopulate Teri’s marrow and grow all of the necessary white, red and platelet (clotting) cells. If all goes well with no fevers/infections Teri may go home in by mid March.
Teri: Possibly the most interesting thing to come out of this haplo-identical and umbilical cord transplant is for Teri to grow 3 inches and look upon the world with brand new baby eyes.
If you have any questions about this complex transplant, ask. I think it’s fascinating, innovative and a Leap of Faith. I believe in miracles. I need all of my family and friends to join hands with me in your mind and imagine me cancer free when you get this message.
With all my love and gratitude. Teri
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