While waiting to see if/when a new transplant date would be scheduled, I figured it was a good time to talk about money. It shouldn’t be a deciding factor in becoming a living donor. But money does factor into actually following through with being a living donor. I’ll share with you how the National Living Donor Assistance Program and other donations are helping us with over $8,000 of non-medical costs.

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.

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 to us.

When the insurance company books travel, it is a bit of a hassle. They’ve waited until the last minute to book my flight. This means my flight is more expensive but then so is my husband’s flight, which we have to pay for ourselves. This also means instead of getting a direct flight, we’re doing a layover in Vegas.

If I would’ve waited for the insurance company 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.

Plus, they won’t help with anything after the transplant.

Non-Medical Expenses:

To clarify, since I live in Oregon and the transplant is in San Francisco, we decided that I would stay with relatives in Modesto for the month after I was discharged. That way, we could drive back to UCSF for my first few check-up appointments. We figured that would save us money in the long run.

The table below shows our basic expense categories. Most are related to travel. Everything below the row in bold, purple text is estimated future expenses.

Living Liver Donor Expenses

Edit Table

*Indicates waiting for reimbursement.

We are waiting for about $1,740 worth of expenses to be reimbursed, or at least partially reimbursed. 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. [So if you’re a potential donor, get your recipient to ask their insurance provider for what they’ll cover up front.]

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 my husband as my care provider.
• Transportation between the airport and UCSF.

This assistance fund caps out at $6,000. 

How does it work? They issued me a credit card. When I need something (e.g. to book a flight), I tell them. Then they put money on that credit card. They have estimates for certain expenses (e.g. flights should cost around $150 one-way), so I’ve used their estimates for future expenses in the chart above. 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?

Notice the “Misc” expense of a compression shirt in the table above? 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 adoptive family’s mileage from Redding/Modesto to San Francisco.
• Kiddo comforts (e.g. used crib for when I stay at my aunt’s house in Modesto).
• 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 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 a 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. Going back and forth from Modesto to San Francisco for appointments and tests and just years of being hospitalized off and on.

After the transplant, my cousin will be in the hospital longer than I will. So his mom will need to stay in a nearby hotel for a longer period of time. 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.