Nevadans needing organ transplants face long waits, limited in-state resources and no guarantees

Stephanie Folkema had just started high school when she was diagnosed with Type 1 diabetes, a chronic illness with severe complications, including organ failure and death.

The Henderson resident has lived with the disease for 30 years, and now she’s in need of a pancreas transplant. The disease causes the pancreas to stop producing insulin, the hormone used to control the body’s blood glucose levels.

Folkema, 43, has had issues resulting from the diabetes since her early 20s, and a transplant would be her only saving grace, she said. A new pancreas would not only eliminate her need to give herself insulin shots, it would prevent any other diabetes-related complications from worsening.

But getting approved for a transplant is easier said than done, Folkema can, unfortunately, attest. She’s been working for more than a year to get selected.

“It’s been quite a process. I’ve had every (medical) test you can imagine under the sun,” Folkema said. “So it’s just been a lot of that testing and waiting, unfortunately, at this point, which I think will, you know, continue to be the case for me up until I get my call.”

Folkema last summer started the process of applying for the transplant waitlist at University Medical Center. After months of blood panels and ultrasounds among other tests, she was finally was approved to be placed on UMC’s organ transplant waitlist.

Folkema is also going through the application process at the Loma Linda University Health’s Transplant Institute in California in hopes it will increase her chances of getting a pancreas.

All it takes is the one call for her life to be changed, but for many people on the transplant waiting list, each day is a gamble, she said.

Steven Peralta, president of the Nevada Donor Network Foundation, said that 20 people on average in the United States die each day waiting for an organ transplant.

In Nevada, around 650 people are in need of organ transplants, and those are just the people who have been identified, he said. Peralta suspects that number should be between three to four times the higher based on the state’s population.

Folkema says she’s hopeful to get her call within a few months. “I’ve said before, 2023 is hopefully my year,” Folkema said. “But I’m just doing my best to just remain hopeful and just stay positive and know that there’s hopefully light at the end of the tunnel.”

Limited resources available in Nevada

The U.S. Health Resources and Services Administration says about 104,234 Americans are in need of an organ transplant. That number continues to grow, with another person expected to be added to the transplant waiting list nationally every 10 minutes.

Transplants.org reports that 34,766 people in the U.S. received an organ transplant in 2021, the last year it provided data. The wait time is anyone’s guess, Peralta said.

Folkema said that UMC told her the wait for a pancreas might take years. At Loma Linda, which has about 70 people on the waitlist for a pancreas, Folkema said, it may only be a few months before she gets a new organ.

UMC is the lone hospital in Nevada with the facilities to perform a transplant procedure, said Dr. Sunil Patel, the director of UMC’s Center for Transplantation.

The only transplants UMC performs involve kidneys and pancreases.

Kidneys are the most sought-after organ, with over 80,000 people on the list for one as of January, according to the U.S. Health Resources and Services Administration. It said that 25,499 kidney transplants were performed last year, the highest number of transplants done in 2022.

Livers are the second most in-demand transplant procedure in 2022, with 9,528 operations having been performed.

UMC has one of the best kidney transplant programs in the country, according to the Scientific Registry of Transplant Recipients. They not only excel at getting deceased donor transplants, but have success in ensuring the recipient’s new organ survives, the ranking shows.

To even be placed on the organ transplant list, Patel said referrals from doctors can take more than 100 days to complete with all of the testing. Add another 200 days at least for evaluations, and a patient might get placed on the waiting list until 300 days after they began the process.

But for people like Samantha Mazza, who received a new liver and heart in California, the only option is to join the waiting list in other states and uproot their lives for a procedure.

“If a Nevadan is needing a heart transplant, a pancreas transplant, a lung transplant, that cannot be done here, in Nevada,” Peralta said. “They’re actually having to go to either UCLA, USC (or) Loma Linda — those three transplant centers (in California) or they’re going down to Phoenix or Utah. We’ve got to make a change.”

‘Don’t get my hopes up’

Mazza, 22, was born with Hypoplastic Right Heart Syndrome, a rare congenital heart condition where the right side of her heart is underdeveloped at birth.

She has bounced around pediatric hospitals in the U.S. for most of her life, and was living at Stanford University’s Lucile Packard Children’s Hospital in Palo Alto, Calif., from July 2022 through this month.

Previous procedures for her heart condition damaged her liver, causing shock that made her condition even more life-threatening, said her father, Maurice Mazza.

Maurice Mazza also said his daughter had been on Milrinone, a “last-ditch” medication used to strengthen the heart, since arriving at Stanford University’s hospital last year. That helped her jump to the top of the transplant waiting list, her father said.

In November, she finally received a double transplant for a heart and liver after four false alarms for matching organs since the start of her stay in California.

“I told my doctor, I was like, I do not want to know if I get another hit unless it’s the right one; don’t get my hopes up,” Samantha Mazza said.

Now, Samantha Mazza is looking forward to seeing a concert for the first time in years, hanging out with her best friends and finally applying to culinary school next year.

The price of that life is high, though.

Hospital bills for 22-year-old heart transplant survivor Samantha Mazza sit on a table at her home in Henderson Friday, May 12, 2023.

Although the patient’s insurance can bring down the cost of transplant surgeries, Peralta said the price tag on a procedure can be upwards of $1 million dollars depending on the transplant.

Transplants.org says the estimated billed charges for a heart transplant is $1.38 million. Someone with insurance and a 20% co-pay would be on the hook for $276,000.

And as the Mazzas learned, that’s just the beginning.

There’s also the cost of relocating closer to the transplant center, which means racking up thousands more dollars in rent, moving fees, food and transportation expenses that averaged $5,000 a month, Maurice Mazza said. Michele Mazza, Samantha’s mother, lived in California to be with her daughter.

“Can you imagine?” Michele Mazza said while gesturing to a stack of around 250 mailed envelopes, many of them bills from her daughter’s procedure, on their coffee table. “How are we gonna pay for all of this? I mean, it’s crazy.”

Donations from friends and members of the community lifted some of that financial weight and Heartfelt Help Foundation, a nonprofit that offers financial support to heart transplant patients in Northern California, was able to get the Mazzas cheaper hotel room rates.

But the expenses aren’t ending.

Transplant patients also need to regularly take anti-rejection medication, which helps reduce the chance of a patient’s body registering the new organ as a foreign object and attacking it. Post-transplant medications, including the anti-rejections, can also be costly even with insurance.

The Mazzas said they will pay around $400 a month out-of-pocket for Samantha’s medications in the next year, but that is expected to decrease as her cocktail of post-transplant medication gradually gets reduced to only anti-rejections. Even those cost $70 for three bottles of medication, which last only 30 days, Michele Mazza said.

They will have to go back to Lucile Packard Children’s Hospital once a month for checkups for at least the next year, too, so plane tickets and hotel rooms will add more to their growing list of costs.

Supply dwarfs demand

In Nevada, 1.5 million people are registered as organ donors, which means they can give up an organ while still alive or have their organs donated when they die, Peralta said.

But Patel from UMC said many of the organs collected in Nevada also get transported out of state. Only 3% of the state’s kidneys go to Nevada residents while the remainder are sent to neighboring states with larger waitlists — like California, Patel said.

“The demand is far exceeding the supply; we just don’t have enough organ donors, so we need to continue to spread the word for those to become a registered (organ) donor,” Peralta said.

Nevada residents can register to be an organ donor at the DMV when applying for a driver’s license or ID card, renewing their current license or ID card and changing their address. Donors can choose to have their status listed — in the form of a small red heart — on their identification.

Patel said many of the organ donors tend to die of illness, which means their organs could come with damage. The more the organ is damaged, the higher risk of a transplant patient returning years down the road having to get that organ replaced again, he said.

“If you try to push the pool too hard and utilize everything, ultimately, the people who get these organs, their survival, and the graft survival will decrease,” Patel said. “We as a transplant center have to balance the quality of the organ that we put in (and) we have to select the patients to make sure they’re going to survive a long time.”

UMC and the Nevada Donor Network want more Nevadans to get their life-saving transplants in-state, Peralta said. The network is trying to help fund two new organ transplant programs: a kidney center in Reno and liver department at UMC.

Peralta said it costs a minimum of $35 million to start a new kidney transplant program, which includes building costs, staffing and a federal requirement that asks transplant centers to pay for the first 10 liver and kidney operations.

Some money has been raised by the Nevada Donor Network to meet that $35 million goal for Reno, but Peralta said there were no concrete plans moving forward.

UMC has begun planning how it will establish a liver transplant center, Patel said. It first will have to start with a clinic to survey the amount of need in the community, then Patel believes it can grow from there into a full operation.

Much like with the kidney center in Reno, Patel said it will still be years before UMC can complete its first liver transplant.

“It’s like you plant a seed, and you don’t get food on day two,” Patel said about UMC’s plans to build a new liver transplant center. “You have to kind of build the ecosystem in the transplant center to support that because it’s a major operation.”