On Being Brave

CSL Behring’s Ann-Marie Hulstine talks about her decision to donate a kidney to a near-stranger – and how to have courage in uncertainty.

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Ann-Marie Hulstine and Rosalie Hetrick
CSL Behring's Director of Global Clinical Operations Ann-Marie Hulstine, a living organ donor, with kidney recipient Rosalie Hetrick.

It’s a good time to hear stories about people digging deep and doing difficult things. Ann-Marie Hulstine has one of those stories.

She and her husband have two kids, she likes to run and she works as CSL Behring’s Director of Global Clinical Operations in King of Prussia, Pennsylvania.

Nothing too out of the ordinary, until you learn that two years ago, she donated a kidney to a near stranger who desperately needed a transplant. Rosalie Hetrick, her health slipping away due to polycystic kidney disease, posted in Facebook post looking for a donor.

“I had run out of options,” said Hetrick, a retired elementary music teacher.

She remembers that Hulstine replied almost instantly.

The two knew each other because they both volunteered at the same Ronald McDonald House summer camp for children who have cancer. What Hetrick didn’t know is that, as a college student, Hulstine had worked as a tech in a kidney dialysis center. It made an impression.

“I noted that it was a pretty hard way of life and I always thought, if I had the chance, I would offer to donate,” Hulstine said.

She didn’t tell her husband and got the required blood test to check for compatibility. Not only were they a match. Hulstine and Hetrick were essentially a perfect match.

“They said your blood doesn’t react at all with Rosalie’s. Admittedly, there was a moment of panic,” said Hulstine whose children were then 5 and 9. 

Director of Global Clinical Operations Ann-Marie Hulstine
                                                       CSL Behring’s Director of Global Clinical Operations Ann-Marie Hulstine

She told her husband and began more than a year’s worth of testing to get fully qualified to be Hetrick’s donor. It meant submitting to a battery of medical tests designed to ensure that Hulstine herself had no risk of kidney disease or other undiscovered medical problems. The doctors at the University of Pennsylvania found one: Hulstine had low levels of von Willebrand factor, a bleeding disorder that, coincidentally, could be treated by one of CSL Behring’s plasma-derived products.

It might have derailed her plans to be a donor, but Hulstine pressed on and received that CSL Behring product during the four- to five-hour procedure to remove her kidney. Her extended family wasn’t happy, she said. But in time, her own doubts and worries faded.

“Ultimately, I just said that’s not how I live my life. I don’t live my life in the what-ifs.”

Neither she nor Hetrick sugar-coats the pain and disruption being a living donor caused. Hulstine said she woke up in pain and stayed in the hospital for three days, while Philadelphia’s Super Bowl parade rolled through the city. It would be three weeks before she started feeling herself again.

Right after surgery, a healthy color returned to Hetrick’s complexion her distended abdomen returned to normal. Each of her diseased kidneys had been the size of footballs, she said. Hetrick faced an even longer road to recovery, taking multiple medications and following post-transplant instructions to the letter. She made a commitment to do everything exactly as instructed.

“I felt a huge responsibility to Ann-Marie and also to myself,” Hetrick said. “What an incredible gift.”

Two years later, she continues to do well.

“I feel great. My color is great,” Hetrick said.

Two years on, Hulstine is also healthy and her solo kidney if functioning well. She started running half-marathons after the procedure. She remains close with Hetrick and says her kids consider Hetrick’s grandchildren their cousins. Hulstine admits it’s a little awkward talking about her decision to be a living donor because it puts her in the spotlight.

But she’s a vocal advocate anyway because she wants more healthy people to consider making the gift of life. Hulstine is active in several living donor groups and is quick to note that the protocol requires the donor to have her own medical team, who is looking out only for the donor. The donor also can opt out at any time.

Opting in, though, can be hugely satisfying. Since the surgery, Hetrick has been able to travel and greet two new grandchildren.

“It’s been a real joy to watch her enjoy life. It’s nice to see the ripples,” Hulstine said.

One of those ripples applies to her work with CSL Behring. Hulstine likens the time-consuming, pre-donation testing to getting a taste of what patients go through when they participate in a clinical trial. Her personal experience has sharpened her ability to understand the patient experience.

“I always try to be cognizant of what are we putting the patients through,” Hulstine said, even if it’s something simple like considering how long it takes them to travel from home to the clinic.

Amid the coronavirus pandemic, both she and Hetrick are feeling for patients and donors who are on hold while hospitals turn all attention to battling COVID-19. As far as self-isolation, Hetrick is well familiar with the concept. She had to stay in and avoid infection following the transplant. Hetrick recommends finding a rhythm to life at home, which for her includes going for walks and “a little more prayer than usual.”

Hulstine, too, wants those involved in transplant programs – and everyone – to stay hopeful during this stressful time.

“This is finite. Remember that this is one of those blips on the radar. It is scary. But it’s a small period of time,” Hulstine said. “Look at all the other things you have gone through.”

And there’s one more ripple to report: Hulstine’s sister, Amy, has just qualified as a living donor and will also donate a kidney to a patient in need.