Home Cook Heroes
Balancing caregiving for a transplant patient and being a mom can feel like an overwhelming task. Jessica shares her experiences of caring for her son facing the unimaginable challenge of heart failure and the urgent need for a heart transplant.
Jessica, Mother of CJ
Q: How have you managed emotionally since CJ has been sick for so many years?
A:It’s hard because I’ve seen him go through this for years, and I can’t fix it. Especially because he wants to be normal and do normal things, and he can’t. It’s mentally and emotionally draining after all these years. I try not to stretch myself too thin, which is important for any mom. When he is hospitalized, I try to take a walk when he is doing well. I have also met other moms with kids in similar situations, which has been helpful. I have people checking in on me every day by phone and text. As a family we try to focus on the positives and enjoy the times we do have because things could be so much worse. I want to preserve the time we have with CJ and focus on the good things as long as I can.
Q: CJ has had a heart condition since birth; he’s now 11 years old, with an LVAD and has been waiting for a heart transplant for almost three years. You also have four other daughters (13, 12, 9, and 6 years old). How do you balance being a mom to your son and three daughters with everything going on?
A: It’s very hard. Our church family helps us with so many things. There were times where he was hospitalized for really long periods. Between 2022 and 2023 he was hospitalized for just about an entire a year, and we had family to support our other daughters. My husband and I try to work as a team to be there for the kids, though it’s hard when we can’t be there together when CJ is at the hospital and the girls are at home. We try to find the little things and moments, like all of us FaceTiming every morning and every night and visiting on weekends.
Q: How has it been for you knowing another mom and family will be grieving a loss when CJ receives his heart transplant?
A: I would never want another child to get ill or be hurt, especially since having my own children and a child who has an illness. When CJ was getting listed for a heart, a nurse encouraged us to think of it differently, that we’re not praying for another child to die for CJ to live, we’re praying for that child’s loved one to have the strength to say yes to donation by blessing CJ with the gift of life in their time of their tragedy. I still struggle thinking about it, especially during the times when CJ has gotten “calls,” but we still pray for those families regardless of whether they would go on to become a donor for CJ.
You can provide hope to the thousands of people like CJ who are waiting for a transplant. Learn more and sign up at www.donors1.org/register
Caregiver Lifeline Spotlight
Transplant patients can live for many decades after transplantation, and with that remarkable success and progress comes a need for personalized and multidisciplinary medicine that includes specialized dermatology care.
Organ transplant recipients have an increased risk of skin cancer because immunosuppressive medications that prevent transplanted organs from being rejected by the body also lower the body’s natural defenses against skin cancer. The most common type of skin cancer in transplant patients is squamous cell carcinoma. The good news is that if detected early, with good care these cancers can be managed and very often cured.
Transplant Dermatologists have a simple goal – no one should die of skin cancer after a second chance at life through organ donation.
How high is the risk of skin cancer in transplant patients?
One in five people without a transplant will develop skin cancer by the age of 70. That story is dramatically different for transplant patients. Transplant patients are 65 times more likely to get squamous cell carcinoma than people without a transplant. They are 10 times more likely to get basal cell carcinoma, the least serious type of skin cancer. And transplant patients are 3 to 4 times more likely to develop melanoma, a potentially more serious type of skin cancer.
Skin cancers in transplant patients can grow quickly and have an increased risk of spreading. That’s why having a good relationship with a dermatologist who specializes in transplant dermatology can be game changing. Prompt and expert dermatologic care, which often includes a specialized type of surgery called Mohs surgery for certain skin cancers, is crucial for transplant patients.
What can transplant patients do about the increased risk of skin cancer?
The most important thing to do to lower the chance of skin cancer is sun protection – sunscreen, sun protective clothing, hats and sunglasses. Go ahead and make that hat fashion statement. As with many cancers, early detection of skin cancer is an important factor for preventing serious complications and death. Fortunately, most skin cancers can be easily treated in outpatient settings. The most common way to treat skin cancers in sensitive areas like the face is with Mohs Surgery. Mohs offers the highest cure rate and is the most precise way to treat skin cancer with the best cosmetic outcomes after surgery.
Good transplant dermatology care also offers treatments and medications to help lower the chance of developing skin cancer in the first place.
How often should you see a board-certified transplant dermatologist after an organ transplant?
What time and experience have proven is that routine dermatology care is an essential part of organ transplant care. Every transplant patient should be seen by a board-certified dermatologist around the time of transplantation, not because skin cancer is looming, but to start learning about skin cancer and what to look for.
After that, the frequency of dermatology visits will be based on each person’s unique situation. For some, visits are needed every few months. Fortunately most transplant patients do very well with visits to the dermatologist every 6 to 12 months.
If you are a transplant patient, talk to your transplant coordinators and physicians about finding a dermatologist who has an interest in transplant dermatology. You can also look for a transplant dermatologist through the International Immunosuppression & Transplant Skin Cancer Collaborative’s “Find a Transplant Dermatologist” tool.
Learn More About Transplant Dermatology
To learn more please watch Dr. Mark’s webinar presented through the Caregiver Lifeline Program
PICTURED L-R: Rick Hasz, President & CEO, Gift of Life Donor Program, Troy Ovechka, Jennifer Ovechka, Faith Osborne, LSW, Abby Wells, Talia Giordano, LCSW
For those undergoing the transplant journey, having a place to feel safe and supported during a medical emergency makes a world of difference. While many would agree that there’s no place like your own home, Gift of Life Howie’s House has been providing a home away from home for transplant families for over a decade.
This summer, the House celebrated 12 years of serving the organ transplant community. Since opening in 2011, the backbone of the House has been the generous contributors and dedicated volunteers that continue to support the mission.
Annual Breakfast Honors Generous Community
“It has been an honor to watch the House grow and change due to the support of this amazing community. The House completes the circle of care that begins when someone gives the gift of life. I couldn’t be more grateful to this community for helping fulfill that mission.”
Rick Hasz, President and CEO
To recognize their support, a special breakfast was held for the contributors and volunteers that help make the House’s mission a reality. The annual President’s Breakfast took place on May 12th, and was truly a fantastic morning where lots of laughs, memories, and milestones were shared. The event’s theme was “There’s No Place Like Home”, in honor of the home away from home that the community helps to sustain.
PICTURED TOP L-R: Jan L. Weinstock, Esq., Jennifer Platzkere Snyder, Esq.; Andrew Bowen, Burton John Mattice; Janice Schwartz Donahue, Karen Barnett, Barbara Katz-Chobert;Lesa Kramer, Catheanne Long
Rick Hasz, President & CEO, along with Jan L. Weinstock, Chief Administrative Officer & General Counsel, shared a few words about how integral the generosity of the community is to sustaining the House’s mission. They also shared some exciting House happenings and important milestones reached.
Past guest and lung transplant recipient, Jennifer Ovechka, shared the story of her journey while staying at the House, and the amazing things she has been able to accomplish after receiving her life-saving lung transplant.
“Since leaving Gift of Life Howie’s House, I was able to run a 5-mile race, work full-time as a medical assistant, buy a home, and above all marry Troy, my sweet big guy who never left my side. The House was crucial during my recovery. Every meal at the end of the day was appreciated, and every tidy bed to rest my head was valued.”
Jennifer Ovechka
Lung Transplant RecipientIn its 12-year history, the House has provided thousands of families with the care and services that they desperately rely on while on the transplant journey. Since opening, it has provided over $12,530,000 in subsidized care, over 316,000 meals, and over 88,457 lodging nights of care. Families have never been asked to pay more than $40 a night, and no family has ever been turned away due to inability to pay.
PICTURED L-R: Cynthia London, Dearrdra Hollingsworth, Johann Schneider, Beverly Schneider, Vivian Gano, Tom Gano
Volunteers Provide Valuable Support
Many volunteers help strengthen the mission. Rosie Lemansky, a donor family member and long-time volunteer, has been serving at the House since its inception.
“In my 12 years of volunteering, I have talked to so many of the people and they are incredibly grateful for this place. When I work here on Wednesdays, I see people that have come together that live in different parts of the country, but they’re bonded by their situation and they can relate to each other and I think that is such an important part of it. It makes me feel good to know that I am a part of this whole process.”
Rosie Lemansky
Donor Family MemberAlthough the journey home after transplant is much more than three clicks of ruby red slippers, the dedication of volunteers like Rosie, along with many generous friends have helped make the House a home away from home for thousands of transplant families.
GIFT OF LIFE EXTENDS ITS GRATITUDE TO THE COMMUNITY
FOR HELPING TO PROVIDE 12 YEARS OF HOME AT THE HOUSE.
Support Gift of Life Howie’s House
Explore ways to support Gift of Life Howie’s House and our mission to provide a “home away from home” for transplant patients and their families by providing temporary, affordable lodging, and supportive services to those who travel to Philadelphia, Pennsylvania for transplant-related care.
Since we opened our doors, Organ Recovery Systems (ORS) has been a proud supporter of the Howie’s House and has helped us care for transplant families in many ways!
“Supporting the transplant community is something I personally take to heart, and Gift of Life Howie’s House goes above and beyond by offering a comfortable and intimate residence for transplant patients and their families,” says Matthew Copithorne, Vice President, Sales and Marketing at ORS.
In 2011, ORS made a generous financial commitment to our mission by underwriting our kitchen – a capital campaign gift that helped us welcome transplant families home. Since then, many of their staff members have volunteered in our Home Cook Heroes Program to prepare home-cooked meals for our guests. ORS also generously supports our annual Kidney Open Golf Outing, which raises funds for our Adopt-A-Family Program.
More recently, they found another way to help by sending a generous donation of hand sanitizer!
“Partnering with Gift of Life Howie’s House has been so rewarding to us, and years later our team still counts down the days until we can visit with and cook for recipients and their families,” says Kayla Andalina, Marketing Manager.
ORS was founded on a passion to help improve patient outcomes in transplantation and honor the gift of life. Their support of the Howie’s House helps provide transplant patients and their family members with a place to call home while far from their own. We are so thankful for their partnership and look forward to serving transplant families with them in the future!
The Independent Order of Odd Fellows New Jersey (IOOFNJ) has been a longtime supporter of the Howie’s House mission.
Former grandmaster, late heart transplant recipient and wonderful friend Harold Delhagen connected our two missions many years ago, and since, IOOFNJ has made a real difference in the lives of transplant families.
They supported our initial capital campaign to help build the Howie’s House and open our doors by underwriting one of our guest rooms. They’ve helped transplant families who couldn’t afford our nightly fee with a contribution to our Adopt-A-Family program. Additionally, IOOFNJ has volunteered on many occasions in our kitchen to provide warm, home-cooked meals to our guests in the evenings as part of our Home Cook Heroes program.
Most recently, they generously committed to a multi-year sponsorship of our shuttle program to help bring transplant patients and their family members back and forth from Philadelphia hospitals and the Howie’s House.
This contribution to our mission helps provide a much-needed service to our guests so they don’t have to navigate an unfamiliar city alone or pay expensive parking fees while caring for a loved one undergoing the transplant process.
In 2019 alone, their support helped us travel over 16,000 miles to provide more than 1,100 trips to and from Philadelphia hospitals and the Howie’s House!
IOOFNJ is an organization based on the foundations of Friendship, Love and Truth, and seeks to make our world a better one to live in through charitable work on various projects in their community.
We are so grateful for their support and look forward to serving transplant families with them in the future!
Theresa had considered herself knowledgeable about organ and tissue donation after seeing how it worked as a respiratory therapist, but when her co-worker’s granddaughter passed away and became an organ donor, she was inspired to learn more about the process.
After learning about the Howie’s House through a Gift of Life presentation, she and her family held a fundraiser to support our mission to care for transplant families. They also signed up to participate in our Home Cook Heroes program under the team name “Team Shea” as a tribute to her co-worker’s granddaughter.
“We had such a great time cooking meals for these families…and we’ve been volunteering ever since!” Theresa says.
Since her team’s initial visit in 2017, they’ve been back several times and have earned an All-Stars a plate on our wall.
Joining Theresa in our kitchen are her children and her grandkids. They prepare comforting meals like shepherd’s pie and meatballs and ziti. Sometimes they serve fun, interactive meals like “Walk-Around Tacos” where guests can create their own taco salads in a Frito’s bag.
Along with dinner, Team Shea brings games and gives guests a chance to win items like puzzle books, decks of cards, paperback books, or candy.
“We figured some of these items could make their time waiting a little easier,” Theresa adds. “No matter how bad a day they may have had, the Howie’s House guests are so nice and appreciative. It’s amazing.”
Team Shea also provides dessert!
“One time, a guest asked me if he could bring some extra cookies to his wife in the hospital to cheer her up,” Theresa says. “It amazed me that something Team Shea did—something so little—would make his wife’s time in the hospital a little bit better.”
Volunteers like Team Shea are such a vital part of our mission. Their hard work and dedication in our kitchen help us welcome transplant families home and lessen their burden of worrying about what to eat or where to get it after a long day.
Theresa hopes other people will become inspired to learn about the Howie’s House and its Home Cook Heroes program.
“People should go to the Howie’s House to see what it’s like and donate their time,” she says. “The staff tries so hard to make the guests feel as comfortable as possible. It’s even better than I imagined it to be.”
Gift of Life Donor Program and MTF Biologics have partnered together for more than 20 years to bring the gift of life-changing tissues to patients throughout the U.S. and beyond. Now, MTF Biologics is spending time in the Howie’s House kitchen preparing meals for transplant families as part of our Home Cook Heroes program.
“The Howie’s House is one of the best ideas Howard Nathan has ever had,” says Martha Anderson, Executive Vice President of Donor Services at MTF Biologics. She has served on the Gift of Life Donor Program governing board for many years and supported the Howie’s House from its conception. MTF Biologics has underwritten the Howie’s House’s 4th Floor Lounge, and supported its annual Kidney Open Golf Outing and Donor Dash.
Martha recently brought her executive team to visit the Howie’s House and they decided they wanted to get more involved. “It’s also an amazing place for our staff to give back, learn about donation, and continue supporting Gift of Life,” Martha explains. “We also really want to get a plate on the wall!”
The plates on the wall in our kitchen celebrate our Home Cook Heroes All-Stars, groups who volunteer at least 12 times a year (typically about once a month) to help take care of our families.
“The Howie’s House is an amazing home away from home for transplant patients and families. The staff is committed to doing everything they can to take care of them,” Martha says. “Everyone from MTF Biologics who comes down to cook loves it, feels humbled, and appreciates the opportunity to give back.”
Not only does MTF Biologics come in to cook, but sometimes, they provide entertainment as well! MTF Biologic’s resident band, The Bone Tones, led by President and CEO Joe Yaccarino, came to perform during dinner one night and was invited back to play at the Howie’s House’s annual President’s Reception.
“They were really happy to come to the Howie’s House and play,” Martha says.
MTF Biologics is well on their way to joining our Home Cook Heroes All-Stars with a plate of their own on the wall. They’ve already come in 10 times this year and have prepared Mexican and Italian dinners as well as baked goods and brunch. We are so thankful for their commitment to our mission and look forward to see what they whip up next!
On Friday, May 17, 2019 our colleagues from Thomas Jefferson University Hospital joined us at the Howie’s House for a special luncheon to celebrate an amazing milestone in our partnership—a $250,000 pledge from their hospital to support the Howie’s House mission. As part of this pledge, Jefferson Hospital underwrote our “Family Community Center” on the lower level of the Howie’s House, which includes our laundry and fitness facilities, salon, Volunteer Center, and Activity Center.
During the luncheon, special remarks were made by Richard Webster, President of Jefferson Hospital, Howard M. Nathan, Founder and President of Gift of Life Howie’s House, and Ed Carman, a liver and kidney recipient treated at Jefferson and former Howie’s House guest. Following the program was a ceremony to unveil the “Family Community Center” plaque in Jefferson’s name.
“Jefferson saved my life and I will always be thankful for that,” Ed said during the event. “While I was staying [at the hospital], my wife had a safe place here, and a caring place here. I didn’t have to worry about that for her. I knew she was OK.”
Jefferson was the first transplant center to financially support the Howie’s House. In their first pledge, they underwrote the Howie’s House’s dining area where families can meet and connect over their experiences while sharing a warm, home-cooked meal.
“I feel committed to the Howie’s House because I see the impact it has across the community,” said Mr. Webster. “We are so fortunate that it’s here for our patients.”
Mr. Webster, Ed, and his wife, Gail, were also presented with the Howie’s House challenge coin, which is a token of thanks given to members of our community who represent values we hold dear, including family, community, compassion, generosity, service, and commitment.
Through their compassion, commitment, generosity, and service to our mission, our colleagues at Jefferson Hospital have made incredible efforts to strengthen patients, families, and the transplant community. We are so thankful for their support!
After the event, Jefferson Hospital staff participated in a team-building baking competition in the Howie’s House kitchen as part of our Home Cook Heroes Program. We have had more Home Cook Hero volunteers from Jefferson Hospital than any other hospital in our region—just another way Jefferson demonstrates their loyalty and commitment to our mission.
We are so thankful for our partnership with them!
When Anthony Vetrano learned his father, Joe, would need a life-saving organ transplant, he and his mother, Teresa, became his caregivers. They both stayed at the Howie’s House for 11 days while Joe received his transplant in Philadelphia this past September.
“The Howie’s House allowed me and my mom to be close to the hospital and spend more time there with my father as he recovered from his transplant,” Anthony says. “We’d have to drive 100 miles back and forth from our homes in New Jersey if we didn’t have another place to stay.”
The Howie’s House supported Anthony and Teresa as caregivers while they supported Joe during his treatment and recovery. “As a caregiver, you focus on the patient and less on yourself,” Anthony says. “At the Howie’s House, there’s someone to focus on you.”
Something that really supported Anthony was our Home Cook Heroes program, which offers a warm, home-cooked meal to guests each night as they wind down from what can be long, stressful days. “A meal was really nice to come back to,” Anthony says. “It was also nice to eat and talk with other families who understand what you’re going through.”
While Anthony was staying in Philadelphia, he had the idea to host a Facebook fundraiser to support the Howie’s House. “My Facebook friends know about my father’s transplant and I thought I could use my experience to help other families like ours,” Anthony says.
Because his birthday was coming up, Anthony decided to “give it up” and ask for donations to the Howie’s House in lieu of gifts.
Anthony hosted a fundraiser for two weeks and with the help of the people he loves, exceeded his fundraising goal!
“Some of my Facebook friends asked me what the fundraiser was about which even helped me raise awareness about organ and tissue donation,” Anthony says. “Not many people know about donation and transplant until they need one.”
It’s caring people like Anthony that help us continue to be a “home away from home” for transplant families coming to Philadelphia. His generous decision to “give up his birthday” on Facebook and raise money for the Howie’s House helps support families like his own as they navigate the difficult transplant journey.
“I would definitely host a Facebook fundraiser again…it was so easy!” Anthony says.
“It’s hard to go through something like transplant and not be changed by it. I want to help out as much as I can.”
Thank you, Anthony, for spreading our mission and supporting the Howie’s House!
Are you interested in “giving up your birthday” or hosting a Facebook fundraiser to support the Howie’s House like Anthony did? Learn how to here: http://bit.ly/fb-fundraiser-info
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