Well, Julian is now officially on the list for a kidney. There was some miscommunication on the hospital end, meaning that I was told by the Transplant Coordinator that works with me that Julian WAS on the list in March, when he WASN'T. She thought he was, but apparently he had not been given approval from the financial department yet, because the financial department didn't know he wanted to be ON the list. Also they were trying to figure out the insurance situation, and we have come to the conclusion that Julian's insurance will NOT cover most of the expenses for the Donor's surgery, whether that donor be a live donor or a cadaveric kidney.
I am getting a packet of information from COTA this week, which is the Children's Organ Transplant Association. They help families coordinate with their communities to help raise money that can be used for transplant-related expenses. It is a non-profit, so any monies donated are tax-deductable. I will hopefully be getting something concrete in place in the next couple weeks so we can start fund-raising for Julian.
If it is a live-donor situation, our costs, no including the testing costs to see if the donor is a viable match, can be from 40-50K (or more if there are any complications). If it is a cadaveric kidney, the operation to remove the kidney and transport it and test it against Julian's tissue/blood type will cost 20-30K. And those are just the initial costs. If the kidney is rejected and further costs are associated with removing the kidney, Julian only has a 1 Million Dollar lifetime transplant maximum on medical expenses that ARE covered by his insurance....so we will need all the help and prayers we can get.
I am not complaining about our health care system, it is the best in the world. And we will work hard to get Julian the best care in the world. I can't even imagine what we would have to go through if we lived in England or Canada. I shudder at the thought.
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