When every breath counts

corey gradin

Corey Gradin will eventually need a double-lung transplant.

Corey Gradin needs new lungs. It’s not the usual thing to find on a 14-year-old’s wish list, but through the genetic luck of the draw, this is Corey’s lot.

I only became acquainted with Corey recently, through Facebook, then email. She is funny and opinionated and writes like someone wise beyond her years. She shares her sharp wit and astute observations readily on everything from religious practice to Lady GaGa’s music.

What she wants to make sure you understand is that while she may have cystic fibrosis, it is not the sum of who she is.

“Living with CF is different than living without it, but I AM NOT CYSTIC FIBROSIS,” Corey writes in an email. We decided that emailing would work better than a phone interview, because antibiotics she took for a lung infection have damaged her hearing.

“I am someone who has to deal with its effects, treating it like a powerful, unwelcome, pest, I mean, guest (kind of) to my body,” Corey continues. “I do treatments, take meds have to eat a lot of calories because CFers have very high metabolisms, but the only way that CF makes me different than anyone else is what I have to do on a regular basis that no one else ever thinks about.”

Corey, who lives in Durham, N.C., is most likely looking at a double lung transplant. About two years ago, Corey still had 90 percent lung capacity. But she became ill and after that particular round of infection, her lung capacity dropped quickly to 70 percent and then to 30 percent.

“We just met the transplant doctor on Friday,” says her mom Elise Goldwasser, when I spoke to her recently. I’ve known Elise and her husband, Harlan Gradin, since my husband, Avrom and I lived in Duraham in the early 1990s.There we attended the same hands-on synagogue, all of us pitching in to lead davening, read Torah or haftarah when needed. We shared Shabbat dinners and holidays along with a few other young, then-childless couples. Corey was born after we left North Carolina, only two months after my daughter, Lily.

For Corey’s family, the lung transplant discussions have become much less theoretical with her diminished lung capacity. According Corey’s website, http://cotaforcoreyg.com/, hosted by the Children’s Organ Transplant Association, she will need a new set of lungs within two years and the cost will be an astronomical $650,000, though insurance will cover much of it.

Corey may take dozens of meds now and spend hours each day on various inhalers and machines meant to shake loose the mucus that blooms inside the lungs with which she entered this world, but she will never not be taking dozens of medications. New lungs just mean different, anti-rejection ones.

But new lungs don’t come easily. They are a gift that can only be given with death. It is not an easy topic to address. And unfortunately, we Jews like to address it even less than others.

According to Robby Berman, the founder and director of the Halachic Organ Donor Society, only 10 percent of Israelis hold an organ donor card, compared with a 40 percent registration rate in other Western countries. It is the lowest rate among them. HODS assumes that the registration rates are low among Jews worldwide, according to Berman.

Berman, a former journalist, started HODS nine years ago when he was working on a story about organ transplant. Every year 100 Israelis and 7,000 Americans were dying from organ failure. In researching the story, he learned there were 114 brain-stem dead Israelis whose organs could have been transplanted, but whose families refused. Berman figured many deaths from organ failure were preventable.

The most common reason Jews give, even among secular ones, is that it’s against halacha, or Jewish law. Berman says it’s his job to educate them otherwise. The main halachic issue preventing donation is not because the body needs to be buried whole in Jewish law, as many people think. Rather, rabbinic authorities differ over the definition of death, as many organs are taken from a person who is brain-stem dead but whose heart is still beating with the help of a ventilator.

Berman’s solution for those with these concerns is to carry a halachic organ donor card, which allows the bearer to stipulate donation at brain-stem death or cardiac death.

The HODS website, www.hods.org, provides a compelling halachic voice, with many rabbinic authorities weighing in support of donation at brain-stem death, despite a still-beating heart. According to the site, Rabbi Moshe Feinstein, a leading scholar and rabbinic authority, accepted brain-stem death. His son-in-law Rabbi Dr. Moshe Tendler, of the Community Synagogue of Monsey, accepts organ donation under supervision of a rabbi. He is the senior rosh yeshiva at Yeshiva University and an authority on Jewish medical ethics.

“The number one reason people don’t donate is that they say it’s against halacha,” says Berman. “They get emotional and superstitious. They yearn for tradition and they don’t want to mess around with resurrection of the dead. When it comes to death, they become the most Orthodox person you ever met.”

I can’t say that I was much better. I could never quite get myself to sign my driver’s license and become an organ donor, even though I knew that if I did so, my organs could potentially give someone renewed life. So when I took my son for his driver’s license test last January, I registered as a donor. I decided it was time to stop worrying if all my parts were going to be with me in the world to come and think about what those parts could do for someone else in the here and now if I were to die.

Someone’s parts, their lungs, can help Corey Gradin. These lungs will be special, her size and blood type, and available because at the most difficult moment, when a parent had to accept that their child was really gone, they made the decision to save another life.

Corey’s Hebrew name is Mcor Eishel. Mcor means “the source” and eishel is a tamarisk tree. In the Torah, Avraham plants the tree near Be’er Sheva. It is an evergreen tree, hearty and able to find deep water tables in the desert so that it can survive. Corey is headstrong and intolerant of injustice, according to Elise. Very suited to her name, or it to her. Her first question to the transplant team was could she donate her organs to someone in case she died.

If you are willing to take an organ, you have to be willing to donate, it’s fundamentally ethical. And by signing the back of your driver’s license or getting a HODS card, you would be fulfilling the mitzvah of pekuach nefesh, saving a life.

I asked Corey what it would be like to have the transplant. “I’m excited to not have treatments, meds, to be able to do things I never could without one, and terrified,” she writes, noting that Duke University Medical Center, where she will have her operation, has an 85 percent success rate with such operations. She also says that she’ll be on medications forever, and that she’ll always worry about getting sick, since her immune system will be suppressed.

“Having a dysfunctional body never truly goes away,” she says. “Transplant is trading one disease for another.”

But a transplant is a gift that will keep her breathing.