Rosen’s organs barely functioning as she searches for replacement
By James Russell
Special to the TJP
If anyone has a spare kidney, Paula Rosen wants it.
The Fort Worth resident is one of 600,000 Americans living with polycystic kidney disease, or PKD, a genetic disorder that over time shuts down the kidneys as a result of cysts overtaking them.
Her kidneys are currently functioning at 13 percent. But just one kidney will do, preferably from a live donor.
Rosen was 19 when she learned she had the disease. She inherited it from her father, the late Buddy Rosen, who prolonged his life by 17 years through dialysis. For six hours a day and three times a week, a 500-pound mechanical kidney removed waste from the body, kept his blood pressure stable and pumped vital nutrients like potassium into his body.
“The other two days he had to take it apart and clean it. It was hard on the family,” Rosen said of her father, who died in 1984.
She does not remember much of what her father went through to maintain quality of life because she was young. But she knows dialysis is not an option.
“Dialysis is hard on you. With me being self-employed and single it would be difficult to do dialysis. I don’t have a company behind me to cover the lost time and wages,” she said.
Thankfully the process is not the only option anymore. She qualifies for a live donor match. Live donors, who remain anonymous, are required to go through a rigorous application process, which many people do not pass. If they do, they then have to undergo a rigorous testing process to see if they could even match someone in need of a transplant. Matches have to meet a variety of criteria, including blood type, good health and no history of debilitating disease.
Oftentimes the best donors are family members. But Rosen’s family members do not qualify, as she ticked off the other living relatives who also have PKD, including her aunt and cousins. Her sister has it but was lucky to receive a transplant from her fiancé, who was a perfect match.
Even becoming a recipient is tough. Rosen underwent her own rigorous process. But after what felt like years, she got on a live donor list at Fort Worth’s Baylor Scott and White hospital.
It’s disappointing when she learns another donor is not a match.
“The only way I can look at it is God’s plan. He has another plan for me,” she said.
God speaks in different ways, however.
In the March 2013 edition of Moment magazine, rabbis from a variety of Jewish traditions concluded organ donation, while once forbidden out of concern for violating the sanctity of the dead, is now seen as an imperative. (In fact, the majority of religious groups believe people have a moral imperative to donate organs.)
“You are asking for someone to save your life. From a Jewish perspective, your best mitzvah is saving a life. Even if you are posting it,” on social media as he did, “you are enabling someone to do the greatest thing you could do, a mitzvah,” said Rabbi Bill Gershon, former senior rabbi of Congregation Shearith Israel in Dallas.
He received his kidney from a live donor April 8, 2014.
Shai Robkin of Atlanta agreed. He donated his kidney last year to Glorious, a 70-year-old African-American mother of three in Carrollton, Georgia. His son Rabbi Yogi Robkin of Plano wrote about the process for the TJP last year.
The elder Robkin has become an advocate for kidney donations in particular after his experience.
Most people are not aware they are able to donate a kidney. But as someone grows older, the likelihood a possible donor is accepted dwindles, especially after someone reaches an age between 65 and 70, Robkin suggested.
“It would be a shame, I think, to go to your grave with two kidneys. The value of a kidney from a living donor means more medically than one from a dead donor. Recipients live much longer,” Robkin said.
He went through an intensive decision-making process with his wife, Judy.
Potential donors need to know about the emotional, physical and time commitment for donating. Potential donors should make sure they have a social support network, and the ability to take off is crucial.
“Be prepared to take time off. I would not have done it without Netflix and a good social support system,” Robkin said.
“The process is physical and psychological. I may have donated the kidney but we still did it together,” Robkin added. There was one drawback, however.
“I had to end my professional football and boxing careers,” Robkin joked.
To learn more about the Living Donor Evaluation Process, visit the National Kidney Foundation at Kidney.org/livingdonation.