One dresser drawer is filled with syringes, another with antibiotics.
Off to the side, a mini refrigerator is stocked with still more medicine. Amir estimates he takes 50 or more pills each day. In case he gets confused there are two lists taped to the mirror in his cluttered room. One tells him the medication he must take in the morning; the other lists his evening regimen.
Amir himself spends his time tethered to an oxygen tank. When his father or girlfriend wheels him outside for some fresh air, he must take a portable tank with him.
Not an easy way to live, the 27-year-old Israeli software programmer says, but when you are battling cystic fibrosis and you’re awaiting a match for a double lung-liver (possibly kidney) transplant at UPMC Presbyterian Hospital, you do what you must to survive.
“[I’m] trying to do my best,” the soft-spoken Amir said from his bed.
Which is what he’s been doing his entire life.
Amir and his twin brother Tal were diagnosed with cystic fibrosis shortly after their birth. From that day on, the boys were subjected to constant physical therapy, medication, tests, X-rays.
Still, their conditions worsened. Three years ago, Tal underwent a double lung transplant, but infection developed and he died a year later.
Cystic fibrosis is a disease passed down through families, and causes thick, sticky mucus to build up in the lungs, digestive tract and other areas of the body. It is one of the most common chronic lung diseases in children and young adults. A life-threatening disorder, it is also prevalent among Ashkenazi Jews.
In Amir’s case, diabetes and being born with one kidney have complicated his condition.
According to Eli Ashkenazi, the twins’ father, Amir’s doctors said that his transplant couldn’t be done in Israel, and recommended he go abroad — to Pittsburgh — to have the procedure done. His father, girlfriend Or Laor Stern, and her son, and a physician all accompanied Amir on the 13-hour flight from Tel Aviv to Newark and from there to Pittsburgh March 15, where he was immediately admitted for a battery of tests for some 10 days.
Since then, the group has been waiting at Family House, one block from the hospital, for an organ match.
Actually, Stern said she might be a match as a partial liver donor. It’s something she is more than willing to to do for her boyfriend.
“I don’t even have a second thought about it,” she said. “If I can help him live, I’ll do it.”
Insurance is covering the cost of the operation plus Amir’s travel expenses to and from Pittsburgh. The rest, however, must come out of the family’s pockets, and Eli Ashkenazi, an agronomist, is on an unpaid leave from his job to take care of his son. His company though is holding his position.
The family did interviews on Israeli television seeking help. They reached out to Pittsburghers before coming here, including Tzipy Gur, who sent out an email to the Jewish community.
Aviva Fort, who manages a local classifieds group on Yahoo, has busily spread the word about the family’s needs.
“A number of individuals have responded in what ways they can,” Fort said in an emailed response to the Chronicle. “The problem is that the need here is so tremendous. So much help is needed.”
For instance, the family needs a handicapped accessible apartment, packaged food for Amir (cooked meals for the others), rides to and from their residence to the hospital or wherever else they must go (Amir can’t take public transportation).
Considering the wait for a donor and the recovery time for the operation, Eli said the family could be in Pittsburgh for months — close to a year even.
The worst of it may be the Ashkenazis can’t go to a Passover seder this week due to Amir’s condition.
Next year’s Passover, he hopes, will be a happier occasion.
“Hopefully, next year we will do it in Israel with everybody,” he said. “It will be OK.”
Want to help?
Visit www.life4amir.co.il/english for details on how to make tax deductible contributions to help the Ashkenazi family.
(Lee Chottiner can be reached at firstname.lastname@example.org.)