The Feisty Fontan

Since I’ve been approved for transplant, I’ve started to receive a lot of questions about the process. As always, the goal of my blog has to been to use my story to create awareness about the struggles of living with a chronic illness and to help future generations of adult CHD patients know about some of the challenges they could face as they age.

I hope to write several blog posts that address some of the questions I’ve been asked over the last few weeks. The first one I want to address is “Why do you need to fundraise? Doesn’t insurance cover everything?” Unfortunately, unless they are a millionaire, fundraising is a requirement for almost all transplant candidates. There are so many expenses surrounding receiving a transplant that insurance doesn’t cover; expenses that an average person wouldn’t even think about. And there are lifelong expenses that a transplant patient will carry for the rest of their life.

Part of the transplant process is meeting with a social worker and a financial coordinator to discuss how you’re going to pay for all these expenses. These people are then involved in the committee that decides if you get approved for organ listing or not. Below is a link to a great article that explains why transplant centers do a “wallet biopsy” as part of the approval process:

No Cash, No Heart. Transplant Centers Require Proof Of Payment

And here is an informative video that offers insight as to why organ transplants are so costly in the United States:

Lastly, I want to give some insight from a newly-approved for-transplant-candidate’s perspective.

Almost everyone has heard horror stories about the cost of anti rejection medications. There are several fun facts that I have learned about my transplant medication regimen. Insurance doesn’t always cover them or if they do, they have high co-pays. As of right now, one of my potential medications is estimated to be $500 a month. I have heard of transplant recipients that pay $5,000 a month for their anti-rejection meds, so I’ll take the $500 co-pay. However, your meds can change. If the organs are experiencing signs of rejection, your doctors may increase your dosage or change the meds that you’re on. A higher dose usually comes with a higher cost and the new medications may not be covered by insurance. There are meds that you will take everyday for the rest of your life, twice a day, at the same time each day. There is no skipping a dose or taking it later. You can’t wait two days until payday to get your meds refilled. Doing so can start the rejection process. If the rejection gets bad enough the organ starts to die, and if that happens the transplant recipient has about a 20% chance of survival. Notice I keep saying “meds,” as in more than one. Most transplant recipients take more meds after their transplant than before. I currently take about 15-20 pills a day and I will take more than that afterwards.

Who’s had a minor surgical procedure and months later got a bill for the anesthesiologist for a crazy high amount because the anesthesiologist is out of network? I used to have employees come to me with this issue all the time when I worked in HR. Out of network providers can bill you the entire amount, no insurance discount, nothing; their full 100% fee. Transplants involve so many medical professionals. Just during the evaluation process, I met with nutritionists, specialized pharmacists, infectious disease specialists, and a psychiatrist. Every test I had needed insurance approval and it wasn’t always easy to get. The chances that somewhere in this exceptionally long process of evaluation, surgery, and recovery, that something won’t be covered by insurance is high. In the video, it talked about the air transport needed to fly the organ to the recipient. I’ve already had one life threatening emergency air ambulance ride that my insurance denied and was out of network of my insurance. That was a very high five digit figure I owed. Maybe you’ll need more cardiac rehab sessions that your insurance will cover. Right now Vanderbilt is fighting with my insurance about my double organ transplant being two surgeries, not one. Two huge teams of highly skilled and highly paid surgeons, double the medical supplies, longer OR time….it all adds up.

Let’s talk about Medicare for a minute, since it is something that a lot of transplant patients are on because they can’t work. When I got approved for disability, I also got approved for Medicare. I thought it would be my saving grace and I would never need to worry about insurance coverage ever again. Hmm, yea, I was naïve. Medicare Part B is what pays for hospital expenses and it covers 80% and you pay 20%. Sounds like normal health insurance, right? Except there is not an out of pocket max on that 20%. An average heart transplant costs $1.4 million dollars. Do you want to pay for 20% of a $1.4 million dollar procedure? Ok, so I investigated getting a Medicare Advantage plan or a Medigap plan. Medicare Advantage plans are based on the state you live in and therefore no plans were contracted with my transplant center and Medigap plans, if you are under 65, are pricey, pricey, pricey. So, I stayed on my husband’s health insurance. The one with the $5000 deductible and the $10,000 out of pocket max. That generous heart of his is employed by a nonprofit hospice provider; its fulfilling work with sucky insurance.

Every transplant candidate is required to live less than about 4 hours from their center or have air support arranged that can get them to the transplant center in less than 4 hours. In my case, my transplant center is almost 7 hours away and they won’t even list me until I’m physically there. It’s the only center in the country that would be willing to do a transplant on me. I have a friend who just had a heart transplant, and while her case was complex, she didn’t have congenital anatomical issues with her heart, meaning there were more transplant centers willing to transplant her. She still lived five hours away from her transplant center.  And top-notch world-class transplant centers aren’t located in small towns in with affordable living costs. No, they are in big cities with rents that average more than twice a reasonable mortgage payment. And you must stay local for anywhere from 6 weeks to 6 months post-transplant.

You are required to designate a primary caregiver who receives extensive training before you leave the hospital. You are required to have an adult with you 24/7 for at least three months post-transplant. How does the poor soul who signed up to be your full-time babysitter also work a full-time job? A full-time job that is located hours away? They don’t. Luckily, they have FMLA. Except FMLA is usually unpaid after their PTO runs out, like in my husband’s case. When his PTO runs out and he has no paycheck, we will be responsible for paying our health insurance premiums out of pocket. Plus, FMLA only protects an employees’ job for so many weeks. If an employee exhausts FMLA and can’t return to work, then they could lose their job. And losing their job means losing their insurance. That mean COBRA payments now need to be added into your budget; COBRA you want to pay because you’ve already met that high deductible and high out of pocket max. COBRA you want to pay so your transplant center isn’t seeking pre-authorization for services, in the middle of the transplant process, with a new insurance company.

Travel expenses don’t end after you get to go home. You must make frequent visits to your transplant center for bloodwork, biopsies, etc. You’re there at least once a month for the first year. And for the first year you have to be followed at the center that transplanted you. Afterwards, if there is someplace closer, you can see transplant doctors at other hospitals. However, this girl will be making drives to Vanderbilt for the rest of her life.

And of course, we all know that life doesn’t stand still no matter what we are dealing with .The mortgage still needs paid. The kids still need school supplies and money for field trips. The dog still needs heartworm meds. The car still needs an oil change and a tire rotation.

I promise I am not trying to stand on a soapbox and get all preachy. I am 100% aware that, especially during the pandemic, there are millions of Americans facing similar financial struggles. I hate that anyone has to fundraise to pay medical bills and ask other people for money to help them or a loved one stay alive. I hate that someone’s financial situation could be a matter of life or death. I hate that someone could receive the gift of life, survive one of the biggest surgeries someone could have, get a second chance at living a healthy life, and then years down the road something happens and now they can’t afford the anti-rejection meds they need to keep living.

Asking for money is hard for me. I don’t even like when my parents help me with medical bills (I’m grateful but it’s no fun being a grown adult who needs financial help from your parents). For some transplant centers, it’s a strong recommendation that you fundraise, for others it’s practically a requirement. When I knew I needed to fundraise, I wanted to do it in the most transparent, ethical and legit way I could. That’s why I chose to use HelpHopeLive to fundraise. They’re a non-profit so all donations are tax deductible and they manage the money to ensure that all money raised goes towards nothing but transplant related expenses. I wanted anyone who opened up their wallet to help me to be confident that their money was going only towards keeping me alive and not for getting myself a boob job.

When you go thru an evaluation for organ transplant, you have to convince a lot of people that you are committed to this process and to the lifetime care of your new organ(s). Willingness to hustle your friends and family for money is part of displaying that commitment.  Being a transplant recipient is signing up to be the caretaker of a piece of someone’s child, spouse, parent, or friend. That someone, and their family, must pay the ultimate price so that I can have a chance at getting my life and my health back. If selling some t-shirts and posting a fundraising link over and over and over to the point of annoyance is the part that I have to play in this process; well, that’s a pretty small price to pay.

P.S. Here are my fundraising links:

Bonfire Store-Shirts and Coffee Mugs

HelpHopeLive-General Transplant Fundraising