Organ Donation
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
Joe Eitl is a Montgomery County native born with congenital heart disease. He and his family were told that he would not live past 3 years old, and that transplant would never be an option. Joe defied the odds and lived a normal, active life until he was 38 years old and his health started to decline. He was listed for a heart and liver transplant, and in November of 2020, Joe received his miraculous gifts of life. Joe lives with Down Syndrome, and due to the nature of his transplant he had many complications following his procedure. He was in and out of the hospital for over a year post-transplant, and his parents, Peg and Craig, relied on Gift of Life Howie’s House for a safe place to stay where they could be close to Joe.
“Our days start at around 7:30 or 8’clock in the morning and don’t end until 7:30 or 8’clock at night, and that’s on a good day… we were dreading the idea that we would be a two hour commute every day both ways.” – Peg Eitl, Joe’s mom and caregiver.
While staying at the House, Peg and Craig received access to home cooked meals, one-on-one counseling, and a private room and bathroom to decompress in at the end of the day. The services that the House provides allowed Joe’s family to feel taken care of so they can focus on what’s most important, taking care of their loved one.
Joe is now 3 years post-transplant and is back at home doing the things he loves which includes spending time with friends and family and rooting on his beloved Philadelphia sports teams.
“To say that the House was a saving a grace is an understatement,” says Peg.
Tom Fennell and his wife, Alice, traveled almost 1,000 miles from Iowa to Philadelphia hoping Tom would receive a life-saving heart transplant. Far from home, they found comfort and support at Gift of Life Howie’s House, which recently celebrated its 12th anniversary.
“Howie’s House gave us a safe place to stay, dinners, and camaraderie. It was the complete package,” said Tom. “We were able to connect with other transplant families and it helped us on our journey.”
Tom’s journey was unusual. Many transplant centers declined to accept him as a patient because of his age. Temple Health in Philadelphia welcomed Tom and, at 74, he became one of their oldest heart recipients.
Tom and Alice stayed at Howie’s House many months post transplant but were finally able to return home recently. They rang the Chimes of Hope at the House to celebrate (click here for video).
Thanks to a generous donor hero and caring support at Howie’s House, Tom and Alice can get back to doing the things they love. They have already planned a family vacation at their lake house and hope to travel to Mexico next year.
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.
Sunny skies and great friends coming together to support transplant families made this year’s Kidney Open Golf Outing a huge success! Thanks to our generous supporters, we were able to raise over $116,000 for Gift of Life Howie’s House!
The funds raised at this year’s Golf Outing will help us subsidize the cost of staying at the Howie’s House to keep our room fees low, and cover the costs of families who cannot afford to pay the nightly fee, making sure we never have to turn away a family due to inability to pay.
This year’s outing looked a little different than years prior, as we implemented many health and safety guidelines throughout the day and adapted the event to limit large social gatherings. Despite the obstacles, we were still able to raise much-needed funds for the Howie’s House so we can continue to support our mission of providing a “home away from home” for families undergoing the transplant journey.
As our guest speaker and past Howie’s House guest, Denise Hobbie, said during the event, “On a very tough and arduous journey, the Gift of Life Howie’s House was truly a welcome respite to me and my family.”
Whether you joined us out on the course, sponsored part of the outing, or volunteered to support our staff, we thank you for helping us provide for families like Denise’s.
We hope that you will join us next year for our 17th Annual Kidney Golf Outing!
We’d like to give a special thank you to all of our sponsors of this event! Thanks to your support, our mission to support transplant families remains strong.
2020 Kidney Open Sponsors
Golf Carts
Main Line Health
Shot Gun Start and Dinner
Bridge to Life, Ltd
Double Eagle
CareDX
Cornerstone Asset Management
CSL Behring
MTF Biologics
Nora – Nationwide Organ Recovery Transport Alliance
Quick Courier Service
VRL Eurofins
Eagle
Independence Blue Cross
Lions Eye Bank of the Delaware Valley
Mohan USA
Organ Recovery Systems, INC.
Quick Specialized Healthcare Logistics
Sinnott Executive Consulting
Birdie Sponsors
Highmark Blue Cross Shield Delaware
Howard M. Nathan
Apparel
Community Tissues Service
Lunch
Meridian Bank
Registration
Baker Tilly Virchow Krause, LLP
Course Refreshment Stations
Lincoln Financial Group
Warner Benefits / HRAdministrators
Coffee Station
Lincoln Financial Group
Practice Range
Einstein Healthcare Network
Signage Sponsor
Garrison
Putting Contest
Gillespie Electric, Inc.
Closest to the Pin Contest
The Arthur Jackson Co.
Longest Drive Contest
Wye Realty Advisors
Straightest Drive Contest
Transplant Alliance Foundation
Hole-In-One Car Sponsor
Scott Honda of West Chester
Hole Sponsors
Affinity Wealth Management
Dr. Linda Barrasse
C Change Surgical
Gallagher Benefit Services
Kimmel, Carter, Roman, Peltz & O’Neill
Miller Pipeline
Premier Orthopedics
Tozour Energy
Venture Jets
Walker Lodge #306
Wohlsen Construction
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.”
When Ashley saw a Facebook post about an ill member of her church family in need of a life-saving liver transplant, she couldn’t just scroll past it. “I felt this tug on my heart,” she says. “I felt like this was absolutely something I was supposed to do.”
Ashley was going to see if she could donate a portion of her liver. After testing, she was approved and thankful for the opportunity to save another’s life as a living-donor.
Ashley traveled 800 miles from where she was living in Atlanta, GA to Philadelphia, PA for the surgery. “I did a lot of research about the area and what places were available for living-donors to stay after surgery,” she says. “That’s how I found out about the Gift of Life Howie’s House.”
She checked in to the House the night before her surgery and returned when she was discharged from the hospital to recover.
While Ashley was in Philadelphia, she had many people supporting her who were also able to stay at the Gift of Life Howie’s House.
“Another woman from my church, Sheila, became my support person,” Ashley says. “While I was in the hospital, the House was an invaluable resource for her. When she was not with me, she was able to come back to shower, rest, and eat. She took advantage of the shuttle during this time and this was a huge blessing to her as she was not quite comfortable taking a taxi by herself.”
“I loved how friendly the staff was, how neat and clean the home was, and that they offered home-cooked meals in the evenings,” Sheila says. “I also loved being able to talk to other families about their loved ones.”
Sheila flew back home when Ashley was discharged. Ashley was able to have others visit the House to support her.
“The Gift of Life Howie’s House made the recovery easier. I was able to make friends with others on a transplant journey and this made me feel less alone and truly understood,” Ashley adds. “What they are doing to help transplant families is beautiful and more helpful than they may ever know.”
Ashley successfully became a living-donor and formed a close relationship with her recipient, Denice.
“My recipient and her family consider me family, and she calls me her ‘liver sister.’ Several months after our surgeries, she got to be present when her great-grandson was born. I have so loved seeing how she is living out her second chance at life!”
“I feel very blessed to have a living-donor,” says Denice. “I never feel like I could do enough to show how much she has given back to me. I can go places on my own and not worry about forgetting where I am. Ashley is one of the easiest people to talk to and is always willing to help anyone she can.”
“Before my experience, I knew very little about organ donation or the importance of it,” Ashley says. “Going through this brought me together with others going through similar experiences and it really opened my eyes to how many people are out there waiting for a life-saving transplant. I did have some friends and family who weren’t as comfortable, but I just continued to talk with them about the importance of donating and what the process was going to look like for me. I would want people to know it’s really not as scary as it sounds! I’m three and a half years post-op and I live a normal, healthy life.”
On Thursday, October 3rd, NASCAR driver Joey Gase visited Gift of Life Howie’s House, inviting us to take part in his outreach to educate millions of NASCAR fans worldwide about the life-saving importance of organ and tissue donation.
As part of his Hand Prints of Hope event, 50 members of the transplant community covered the hood of Joey’s racecar with hand prints and special messages which he raced that weekend during the NASCAR Xfinity Series at Dover International Speedway in Dover, DE. NASCAR fans were drawn to the colorful hand prints, messages, and the Gift of Life Donor Program logo in the center.
“It turns a ton of heads at the race track. When people see the hand prints all over the car, they want to come up and ask us about it and we get to tell them,” Gase, 26, said during his speech at the event.
When Joey was 18 years old, his mother, Mary, passed away of a sudden brain aneurism and was an organ donor. She was able to save and transform the lives of 66 people.
“Ever since that day, I wanted to do whatever I could to help raise awareness for organ donation and honor all those affected by it,” he said. “It’s not easy for the recipients, those on the waitlist, or the donor families. There are over 110,000 people on the waitlist nationwide and I want to do whatever I can to get that down to zero.”
We thank Joey and his team at Joey Gase Racing for their advocacy and support, and our friends at Medline for sponsoring this event!
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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