Living Liver Donor – Financial Considerations

Money. It shouldn’t be a deciding factor in becoming a living donor. But it does factor into actually following through with being a living donor. I’ll share with you how a donor assistance program and other donations are helping us with over $8,000 of non-medical costs.

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What does Insurance Cover?

My cousin’s insurance (not mine) covers all my medical bills related to the transplant. That includes:

• Initial blood test at a local lab.
• Donor evaluation tests.
• Medications.
• The transplant surgery itself, naturally.
• 1 day in ICU and up to 7 days of hospitalization.
• 5 follow-up visits and tests.

They’re helping with some of my travel costs also. This was a surprise. We didn’t learn about this until 2 weeks before our first transplant date. We’re thankful, and yet this has made the whole process so complicated. Plus, they won’t help with anything after the transplant.

BE PREPARED. While the insurance company will reimburse at least a part of my prior travel costs, it will be months before that happens. Also, they will not reimburse me directly. The money will be sent to my cousin and it will be up to him to disburse the funds. Plus, when they book travel, it is a bit of a hassle. They’ve waited until the last minute to book my flight (costing us more for my husband’s flight) and requiring a layover in Vegas. If I would’ve waited for them to book my flight for the 2nd transplant trip, they would’ve had us leave a day earlier than planned and put us up in a hotel nowhere near the hospital. Again, the financial help is appreciated but…it comes with a side of stress and an extra large headache.

Non-Medical Expenses:

This table (swipe down to scroll through the list) shows our basic expense categories. Most are related to travel. Yellow highlighted rows are estimated future expenses.

*Indicates waiting for reimbursement.
We are waiting for about $1,740 worth of expenses to be reimbursed, or at least partially reimbursed. We’ll find out. This includes the $300 fee to bank my own blood, which UCSF will reimburse. Most of it, though, are expenses that my cousin’s insurance would’ve paid for had we known that in time.

What does Donor Assistance Cover?

I’ve mentioned before that there is a National Living Donor Assistance Center (NLDAC). As you can see in the table above, they’ve helped with things like:

• Travel, accommodations and meals for J as my care provider.
• Transportation between the airport and UCSF.

This assistance fund caps out at $6,000. They put money on a credit card when I need it. They have estimates for certain expenses (e.g. flights should cost around $150 one-way), so I’ve used their estimates for future expenses. I expect we’ll have used up these funds by the time I have to fly back to UCSF for my 2 month check up appointment.

What do we pay for ourselves?

Noticed the “Misc” expense of a compression shirt? My surgeon recommended I get two to help with recovery. That is a good example of something I bought myself.

There are other things not listed in the table above:

• A robe for the hospital (on the recommended packing list.
• Journal and disposable camera for chronicling the transplant.
• Commemorative gifts for my cousin.
• My family’s mileage from Redding/Modesto to San Francisco.
• Kiddo comforts (used crib at my aunt’s house, travel foods, etc).
• Special treats in San Francisco we bought with our own money.
• Meals my husband or mom paid for themselves while at UCSF.
• Whatever it costs to get me back home at the end of October.

Then there are other financial considerations that you don’t pay for in the traditional sense. Like my husband and mom who have both taken time off work.

What about the donations?

We have such amazing friends and faith communities. Our church gave us $1,000 which will go a long way and we’ve raised about $240 with the T-shirt fundraiser. Then there is the GoFundMe created by my cousin’s immediate family.

My cousin’s family has many more expenses.

His insurance company DOES NOT help him or his family with non-medical expenses and there is no organ recipient assistance program. All of the hotel, meal, mileage, parking, and other fees come right out of their pockets.

And they’ve been doing this for a long time, folks. Back and forth to UCSF for appointments and tests. Years of being hospitalized off and on.

After the transplant, my cousin will be in the hospital longer than I will. He’ll also have a lot more trips back to UCSF to make sure his body is accepting the liver properly. We are so excited that he’ll be getting a new liver this Friday but there is still a long and costly road of recovery ahead.

If you have any questions or are considering becoming a donor yourself, feel free to contact me. Thanks for reading!