WAUKESHA, Wis — A Waukesha woman was forced to move to California in an effort to save her own life.
Stacie Becker was diagnosed with Hypertrophic Cardiomyopathy at 14 years old. It's what killed her father when he was 42.
She's a few months shy of her 43rd birthday and in heart failure herself.
"I wasn't supposed to make it to 30," Becker said. "I was past 30 so it was game on kind of."
Through her college years, she went through medical procedures patients 50 years her senior have to do.
Numerous open heart surgeries. Dozens of hours under the knife. She has not one, but two pacemakers. All of this made her life sustainable.
"I finished college," Becker said. "I was able to go back to work. I got married. My husband and I got hooked in with a great dog rescue and rescued over 70 dogs and fostered them in our homes. That was an amazing accomplishment."
But in the last few years, things went south.
"I just knew I didn't feel good," Becker said. "Something wasn't right."
She went to her normal doctors and they told her everything was fine and she'd bounce back. Becker persisted and got other medical opinions.
"Maybe I'm getting out of shape and need to push more," Becker said. "I handed all of my paperwork and said, 'if you say I'm fine, I'm going to keep pushing through and live my life.' But if something is wrong, I want to know. He discovered I was in heart failure and the previous team had missed it."
Only a new heart would save her. She went on a transplant list in Wisconsin but day after day, there were no matches. Becker is an extremely rare case. She has O positive blood which means several other blood types can accept hers but she needs O positive or negative in return. She also has more antibodies than the average person because of all of the surgeries she's endured over the years. So her donor needs to be of similar size, same blood and high antibodies. Her heart "needle" isn't in a haystack but the whole field. Waiting in Wisconsin wasn't working.
"In May of this past year, I got really sick," Becker said. "My team had kind of started talking to me in January about Wisconsin not being the correct program for me. I had been listed at that point for a little over two years and there hadn't been a single offer for a heart coming through."
She and her team started doing some research to see what they needed to do to help her survive. They approached her about moving west.
"I balked at the idea at first," Becker said of moving to California. "I mean, my whole world is in Wisconsin. But my family was like, you have to. I got the mantra that it's more important that I live than where I live. I want to be here next year at this time."
Using various criteria, the Scientific Registry of Transplant Recipients (SRTR) measures the best hospitals for specific organ transplants (all of which is accessible online). According to SRTR, Becker's hospital at UC-San Diego, is tenth transplant rate; an excellent placement but technically not the very best according to their metrics. However, it was the best fit for Becker.
"The sheer volume of people makes for a bigger donor pool," Becker said. "For whatever reason, here in California, There's more people that have the higher antibodies like I do. It's a better fit for me and also, they have some treatments and medications they can use out here that the hospitals in Wisconsin haven't quite started experimenting or using yet. It opens me up to be a candidate for those which can open up my donor pool."
"Every patient is unique," Jon Snyder, Director of SRTR said. "Certain areas of the country could have ready access to certain types of donor organs. It might be that the surgeons and team in California might be more adept at dealing with Stacie's particular condition. Many factors can play into this but certainly, patients have a choice to go to whatever transplant hospital would best suit their needs, wherever that is in the country."
Snyder says there are so many factors to take into account, there is no one hospital that is best for all heart transplant patients. He urges patients in need to use the data on their website to help research what hospital could be best. Becker going to San Diego doesn't mean everyone who needs a heart transplant should move to California, or that Wisconsin is the worst place to be if someone needs a new heart.
"Absolutely not," Snyder said. "Patients and families should do their best to do their research and talk to their care providers and physician team."
Becker's hospital ranks among the best in the country for heart transplants. Snyder says, according to their metrics, UC-San Diego has an impressive wait time of roughly six and a half months for heart transplant patients.
"That would say that patients listed at their program for a heart transplant, at six and a half months, 50 percent have received their organ by that time," Snyder said. "They're transplanting at a rate 56 percent higher than other programs that would have similar patients on their list. One thing UCSD has going for it, they are transplanting at a higher rate and one of the highest rates in the country nationally. Not only are they transplanting them faster, but having good success rate, post transplant. That points to a good outcome for patients at that program. These numbers are available on our reports as well."
It's already paying dividends for Becker. She hasn't gotten a new heart yet, but since moving in early August, she's already getting bites.
"In less than 48 hours of being listed here, I got a call that there was a potential match for me," Becker said. "It didn't end up being a good fit but it gave me hope after almost two and a half years of nothing in Wisconsin, to getting a call within 48 hours. It was pretty crazy."
All of this has been tough financially for Becker and her family. She can't work because of her condition and her husband has depleted his paid time off from hospital visits earlier in the year. But they don't have a choice if they want her to survive. Friends and family are doing their best to raise money to help Becker.
Saturday, they're holding a fundraiser at Elmbrook Veterinary Clinic in Brookfield between 1:00 p.m. and 6:00 p.m. They've also created a GoFundMe to help with expenses.
Snyder also encourages everyone to become an organ donor. Now, it's even easier. Snyder says you can do so online at https://registerme.org/.
"Over 100,000 people in the country are waiting for that life saving gift," Snyder said. "A lot of professionals around the country are working hard every day to save these people's lives. I would encourage you to not only sign up, but express your wishes to family and loved ones, in case that dark day comes. Perhaps, we can save a few lives in the midst of that experience."