November 16, 2014

Most of us have considered the question: Do I want to be an organ donor?

It usually occurs when we’re renewing our driver’s license. And then it’s only to happen when we die.

But life often has other plans, and the issue of the need for donor organ hits you in the face like a cold New England winter’s night. That’s what happened to us a year ago when we found out my wife’s sister needed a liver transplant. My sister-in-law was one of the lucky ones. First, she had my wife/her sister relentlessly research the best, quickest way forward. Then she had my wife/her sister step forward immediately and say “if I’m eligible, I will be the donor.” She never wavered.

The next five months were a blur, as they researched and considered transplant facilities from Texas to Boston to Florida to New York before settling on Baylor Hospital in Texas. But we were lucky in other ways. We had the financial resources to travel several times during the period, including several nights in various hotels. We also had the ability for my wife to take saved sick and vacation time in order to do what needed to be done. Finally, we were prepared to rent an apartment away from home in the event that an out-of-state transplant facility in another region provided the best option, as my sister-in-law would not be able to travel for months.

In the end, the stars aligned, and my sister and my wife are doing great 8 months after the procedure. But the experience taught us a lot. Not only should the question of “should I be an organ donor” be considered in the here and now, but that there is a pressing need to provide financial support to those not as fortunate. While insurance may cover a significant portion of the necessary procedures for the donor and organ recipient, there is a profound amount that is not covered – travel expenses related to researching treatment options; travel and hotel expenses for family members; child and pet care expenses; and perhaps most important – even when insurance does cover the expense, there is a need to pay expenses subject to reimbursement. Our experience had a happy ending. Our hope is for others to have the same.