Perhaps you've seen our $75,000 fundraising goal and wondered one of the following things:
1) Good gracious, that's high! How will they ever reach that goal?
2) Is that the cost to buy a liver???
3) Why isn't this covered by insurance?
So let's quell our curiosities today, shall we?
1) COTA helped us determine our fundraising goal. They have 20+ years of experience in helping families with transplant-related expenses. (We have 0 years experience, so we appreciated their expertise!) And YES, this is a lot of money to raise! We're only going to reach it with the provision of the Lord through the help of people like you--one dollar at a time!
2) You can NOT buy a liver. Believe me, if you could stroll through the aisles of Target, place a liver in your big red cart, and receive 5% off with your RedCard while checking out, we would have it made. ;) But you can't do that, and that's not what the goal covers. The $75,000 fundraising goal was compiled by looking at the breakdown of current transplant-related (pre-transplant) and post-transplant for up to five years and then making an estimation of the sum of those costs.
3) We actually have great insurance, provided through Nick's employer, and they WILL cover the cost of the transplant. However, there are a few caveats: we must have the transplant performed at one of the medical centers on their compiled list (there are no qualifying pediatric liver transplant programs in Memphis on their list...as a result, we have chosen a program in Chicago). There is obviously a cost to stay insured, and there is also an amount that we are required to pay annually out of pocket. If we are in good standing with payment on our premiums and we have reached our out of pocket max (currently $5,000 for our family), then our insurance will pay 100% of our medical bills...until the next calendar year, when the deductible/out of pocket max starts over.
I feel the need to share with you that our "yes" to Brooklyn was a blend of responsible, practical conversations and decisions of faith. We didn't hastily make the decision to adopt a critically ill child without weighing the costs and responsibilities. And yet, the cost of caring for a child waiting for, receiving, and recovering from a transplant is enormous for any family. Most families don't volunteer for this. And although we did, we recognized that we would need to lean on the support of our friends and family like every other family does.
So what does the $75,000 cover? The short answer is: COTA provides support for transplant-related expenses that our insurance does not cover.
To give you a clearer picture, this includes the cost of:
- Routine visits to Chicago for pre-transplant check-ups: We are required to see Brooklyn's GI doctors every 3-4 months until transplant. These expenses include airfare, transportation within the city, lodging, food, etc for our family as well as the medical bills/copays incurred during these visits.
- Transplant-related emergencies : This fall, Brooklyn had an unexpected infection that landed her in the hospital here in Memphis for a week. It was a stressful time (and during Rhet's first week of Kindergarten!), and one of the biggest stressors for me was: are we incurring a ginormous hospital bill that we won't be able to afford? In addition to scary complications that could arise due to her liver failure, Brooklyn's immune system is also just very fragile, and she always runs the risk of getting an illness that she can't shake off without a hospital stay.
- Time of transplant: When Brooklyn receives her transplant, she will be in the hospital for an estimated minimum of 2 weeks and most likely longer. Nick will take time off from work, we will have a caretaker staying with Rhet, and Nick and I will basically live in Chicago until we get the green light to return home. (In addition to inpatient time in the hospital, the GI team will require that we stay in Chicago for a minimum of one month post-transplant in order to observe Brooklyn's recovery.) After we return home, we will take Brooklyn back to Chicago every week for a month, every other week for a few months, and then every month for the remainder of one year post-transplant in order for the GI team to monitor her transplant recovery. During this extended time and each of these subsequent trips, there will be transportation and living expenses incurred.
- Co-pays and supplements: Currently, Brooklyn is on two prescribed medications and two prescribed vitamin supplements. We are responsible for the co-pays for the medications, and because insurance won't cover supplements, we incur 100% of the retail costs for the supplements. (Would y'all ever believe those two water-soluble vitamins cost $150 if they're picked up from the pharmacy?!) In addition, Brooklyn has been on a supplemental formula ever since we have brought her home...her infant formula used to cost $40 per can every 3 days or so and her new pediatric formula costs about $130 per week. After transplant, Brooklyn will start on about 10 medications and over the course of the next few years, they'll wean her down to 1-3 meds, which she will take for the remainder of her life.
This gives you a little window into the daily costs of Liver Transplant World. We are incredibly thankful for COTA and the huge weight they're able to lift off our shoulders. No lie, I cried when I had my first phone call with them--they seemed too good to be true. And we are so thankful for YOU, friends, for walking alongside us on this journey. The amazing thing about COTA is that they will support Brooklyn for the duration of her LIFETIME. Thank you COTA, and thank you friends, for joining us in saying yes to Brooklyn!