By Danny Schrafel
Some days just get burned into a parent’s memory. April 24, 2015 was one of them for Greenlawn’s Michele and Doug Martines.
Earlier that day, her 21-year-old son, Christian Siems, spoke at a press conference, hosted by Legislator Steve Stern (D-Dix Hills), advocating for organ donation. He knows the need first-hand - he needed a heart transplant.
Six months earlier, on Oct. 25, 2014, he’d been airlifted to Westchester Medical Center, where an emergency procedure was performed on Nov. 6 to equip him with a Left Ventricular Assist Device (LVAD) – an artificial heart.
The procedure came six weeks after he was added to the list of New Yorkers in need of a heart transplant.
On April 24, he was in urgent need of a new heart.
“He lived on battery power for exactly six months to the day,” Michele said.
Then, 12 hours after last Friday’s press conference, Michele received “the call.” There was a heart, and it was healthy.
The family quickly packed their bags, Christian’s LVAD and his battery chargers, loaded up their car and rushed to Westchester. After a 14-hour procedure and despite some complications, Christian is recovering well. A respirator was removed Wednesday.
“In our joy there is sadness for another family,” Michele said. “We are blessed with his selfless act of kindness by being a donor. No words can express our gratitude.”
The journey to a transplant began June 28, 2012, a few weeks after Christian had tried to give blood at Harborfields High School. They turned him down after discovering “something wrong” with his heart rate, Michele said.
When they visited a neighborhood cardiologist June 28, they found that something was very wrong. He was rushed to St. Francis Hospital, where an emergency angiogram was performed.
At St. Francis, the family was told “he’s not going to live through the night.” After an internal cardiac defibrillator was placed in Christian, the family rushed north to Westchester Medical Center, where Christian was put in the care of Dr. Alan Gass, the medical director of the heart transplant and mechanical support program.
They didn’t know it then, but Christian was suffering dilated cardiomyopathy, in which the heart becomes weakened and enlarged and cannot pump blood effectively. Michele said she had always been especially vigilant about heart health with her son because her ex-husband had suffered the same condition and underwent a successful transplant in 2001.
Now, it was her son.
NY Worst In Nation At Meeting Organ Demand
The Martines family’s happy outcome this week is hardly a given – especially in New York.
Only 24 percent of New Yorkers are organ donors; the nationwide average is around 40 percent, Gass said. New York, in fact, is the worst in the nation – a place where the most patients are waiting for the fewest organs.
“That’s a very unfortunate disconnect,” Gass said.
The result is grim. Gass said 25 to 30 percent of those waiting for organs die before an organ is found. Nationwide, about 5,000 are on the waiting list for hearts; only about 2,000 procedures are done per year.
Assemblyman Chad Lupinacci (R-Huntington Station) said he is preparing legislation to increase organ donation outreach to high schools, and allow students ages 16 and 17, with parental permission, to become organ donors. Already, $250,000 in this year’s budget is earmarked to promote organ donation.
Lupinacci succeeded the late Jim Conte, who represented the 10th assembly district for 24 years and was a leading advocate in New York of organ donation. A two-time kidney transplant recipient, Conte’s efforts resulted in the creation of a statewide Gift of Life trust fund and a statewide organ donor registry. Conte died Oct. 16, 2012 after a battle with cancer.
“This is in his honor of all of his accomplishments,” Lupinacci said.
Christian was supposed to speak at Lupinacci’s press conference. Instead, his mother’s boss, Councilwoman Tracey Edwards, will pinch hit for him while he’s on the mend.
Road Ahead For Heart Recipients Filled With Potential
Dr. Gass said the prognosis is good for Christian.
Most heart transplant patients are out of the hospital within two weeks, and the median survival rate is about 12 years. About half live at least 10 years; 30 to 40 percent live 20 years or more.
Those statistics come with a hopeful caveat. Today, the procedures are more sophisticated, and with better LVADs in use, patients don’t get as sick as they used to before a transplant is done, he said.
“I don’t see any reason Christian can’t go 20, 30 years with this heart,” Gass said.
Eighty-five percent of patients are able to return to work, the doctor said. Some have run marathons; another has climbed the Matterhorn after a transplant. Gass recently went skiing with two of his heart transplant patients.
“Transplantation is real. It works. The limiting factor is, basically, supply of organs,” he said.
Christian’s recovery will be filmed for a documentary, “Waiting to Live,” with hopes of promoting organ donation. Filmmaker Edmund Kuuya hopes to complete work on the project by September.
Already, Christian’s improvement is evident. Christian wrote on Sunday that, after the operation, he felt the best he had in five years.
While he wrote that message, he was still intubated and the chest wound from his heart transplant had just been stitched up.
“That’s pretty remarkable,” Gass said.
Visit www.donatelifeny.org for more information on donating.
SIGN UP TODAY TO GIVE LIFE
There are numerous ways you can sign up to give the gift of life by being an organ donor. Options include:
- Visit www.donatelifeny.org
- Sign up with the DMV when you get or renew your license: http://dmv.ny.gov/more-info/register-become-organ-eye-or-tissue-donor
- Or, indicate your desire to be an organ donor in your health care proxy: https://www.health.ny.gov/forms/doh-1430.pdf