donate life
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.
At Gift of Life Howie’s House, guests are provided with a private bedroom and bathroom that comes equipped with many of the necessities that families rely on when away from home. Many of those guests, however, experience limited mobility due to significant physical challenges that come with transplant and request rooms that are more accessible
Approximately 25% of guests make these requests. Unfortunately, many have to wait for a more accessible room to become available.
“You never know when you go somewhere if it’s going to be accessible, so knowing that we had this room where he could maneuver was a relief. It allowed him to have his privacy and independence, and I could have a little bit of free time as well. Even if it’s ten minutes where I could read a book while he showers, it makes a difference,”
– Donna Nelson, Past House Guest
Out of 32 guest rooms, only 5 have bathrooms that are equipped with walk-in showers. For some guests, navigating over the wall of a tub can be incredibly challenging or even impossible. Many patients require the use of a shower chair, which is also difficult to maneuver in an already tight space with a wet surface, like the bathtub.
Replacing a bathtub with a walk-in shower makes getting in and out much easier on both the patient and the caregiver. Guests with limited mobility do not have to worry about navigating over the wall of the tub, and those who require the use of a wheelchair have easier access inside of the bathroom and can transfer to a shower chair more smoothly.
Learn more about our campaign in our Spring 2023 Newsletter.
Spring Campaign 2023
Support the construction of four new, more accessible showers at the House.
For New Jersey natives, Maggi and George, their life turned upside down 7 years ago when Maggi was diagnosed with Idiopathic Pulmonary Fibrosis after a respiratory flare-up she had while snorkeling in Aruba. They were told that the disease was progressive, had no known cure, and would cause permanent damage in her lungs as time went on.
This news was a huge blow to the couple, who had just a year and half before and many of their favorite activities like snorkeling, kayaking, traveling, golfing, and hiking now seemed impossible.
For the next 7 years, Maggi would have to carry oxygen everywhere she went, go to check ups every 6 months, attend pulmonary rehab sessions, and prioritize living a healthy lifestyle in the case she would need a transplant. Despite all the challenges, Maggi and George remained positive and didn’t let her disease define their life. “I bought a mobile oxygen tank and we used it go everywhere… We traveled all over Italy and France, and even went on a cruise to Alaska. I was going to keep living my life.” says Maggi.
Maggi also was dedicated to staying up to date on the science around her disease and would participate in studies to help further the development of a cure. Maggi, who is one of 14 siblings, also has an especially unique case, as the disease runs in her family. She has two siblings who have been diagnosed with the disease and two more who could have had it but died before they could be diagnosed.
“I wanted to be on the forefront of what science was doing because science was moving fast,” she says. “My journey was to have an outcome that would save my life, whether it be getting a transplant or finding a cure.”
Maggi and George stayed at the Gift of Life Howie’s House for the first time back in 2018 during a pre-transplant appointment. Maggi heard about us through her Pulmonary Fibrosis support group which she co-leads with another Gift of Life Howie’s House guest.
Little did they know the impact the House would make on their transplant journey.
Even though Maggi was optimistic in the development of a cure, her condition was getting worse the longer she waited. So, in the spring of 2020, right in the heat of the pandemic, both her and her doctors decided it was time to start the process of getting on the transplant waiting list.
Within two months and after several evaluations, she was added to the waiting list for a lung transplant. Two months later, Maggi got the call that her lungs were ready.
Maggi and George both knew they would have to stay in Philadelphia for an extended period of time post-transplant, and they found comfort in knowing they had a safe place to call home while she recovered.
Maggi’s surgery went off without a hitch and she was out of the hospital in just 12 days, which is much shorter than the usual post-transplant stay. While Maggi was still in the hospital, George stayed at the Gift of Life Howie’s House and was able to visit her while she regained her strength.
Maggi has now joined George at the House and will stay here while she continues the rest of her recovery. They have made themselves at home here, and appreciate all the amenities we offer, especially during the pandemic. “The House provides you with everything that somebody would need… and it’s immaculately clean, you just have such a sense of safety here because you know that things are being taken care of,” says Maggi.
Maggi says that one of her favorite parts is that, despite the visitor restrictions, the couple were still allowed to visit with Maggi’s daughter, son-in-law, and two of their grandkids outside on our patio. George and Maggi have three kids and four grandkids between the two of them and enjoy keeping in touch by weekly Facetime and Zoom calls.
George, as Maggi’s primary caregiver, enjoys cooking and can often be found preparing meals for the two of them in our kitchen. During the pandemic and while caring for Maggi, he has had to continue to run his mechanical contracting business and has been using our library as an office. “It’s beyond comfortable here. The fact that I can walk 12 steps to the library and do my work in the morning makes things easy,” says George.
George also has taken advantage of our Caregiver Lifeline Program by attending our support groups and referring to the resources available on our website. Overall, they both say that the best part about the Howie’s House is the people they have met here.
“There is a comradery here because you meet and make friends with other families while you’re eating dinner that are going through the same situations,” says Maggi. “There is such a diversity of people you meet here, you really get to hear all different types of stories” adds George.
Maggi, an avid kayaker, says she is the most excited to get back to kayaking post-transplant. The couple are both looking forward to golfing and traveling again, and have plans to travel to Spain, Ireland, Portugal and Scotland as soon as the pandemic is over. Most of all, the couple is looking forward to spending more time with family, getting home to their house in New Jersey and enjoying many more adventures together, which is all made possible by the generous donor who gave Maggi a new lease on life.
| About the Gift of Life Howie’s House Gift of Life Howie’s House serves as 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. Click here for information on ways to support the mission of Gift of Life Howie’s House. |
In August of 2014, Carol McCloud’s son, Ryan, became an organ donor. At 20 years old, Ryan saved four lives. Until her son’s passing, Carol and her family didn’t know much about donation, but she says it’s been a blessing to her and her family, helping them get through her son’s sudden passing.
The McCloud’s are residents of Fishtown, a neighborhood just north of Gift of Life Donor Program and the Howie’s House, so it was easy for Carol to begin volunteering with our organization. She began with the Donor Dash, and soon after, she visited the Gift of Life website to learn about other volunteer opportunities. Carol also noticed signs on the highway for the Howie’s House.
After some thought, she and her family decided that on the first anniversary of her son’s passing, they’d do a food drive for the Howie’s House. They’ve been doing one ever since.
The McCloud family fills up their entire minivan with food and other household supplies for guests here at the Howie’s House. Family, friends, and small businesses in the neighborhood like grocery stores and restaurants all contribute; relatives and friends also advertise at work. “A big chain of people have made this drive so successful,” Carol says.
The before and after care transplant patients and their families receive at the Howie’s House motivates Carol to keep giving. “Being able to help others the way people helped my son is important to me,” she says. “Volunteering and spending time at the Howie’s House allows me to see first-hand what they do for families and allows me to celebrate my son and spread his story.”
Carol and her family also volunteer as Home Cook Heroes on or around Ryan’s birthday.
Thank you, McCloud family, for selflessly supporting our mission and transplant families!
Gift of Life Howie’s House would like to welcome the newest member of the Gift of Life Howie’s House Advisory Board, Bill Soloway! Bill is a heart transplant recipient, receiving his precious gift of life in June of 2015 thanks to a selfless donor. He is well known for his community advocacy, his relationship building, and his endless energy. “You have one life to live and eight lives to give,” he says. “Become an organ donor. My life depended on it.”
In the mid-1990s, Bill was diagnosed with hypertrophic cardiomyopathy, an inherited condition where heart muscle cells become enlarged, altering the structure and function of the heart. Bill lost his 27-year old brother to the same condition.
Before his transplant journey, Bill loved cycling. During his post-transplant recovery, Bill was inspired by stories he heard about the Transplant Games, a multi-sport event for individuals who have undergone life-saving transplant surgeries. Just 10 weeks after his transplant, Bill got back on his bike. This year, Bill will compete in both the Transplant Games’ 5K and 20K bicycle races, as well as in badminton, volleyball, and pickleball.
Bill honors his donor and donor family through his work in the community including service as a Gift of Life Ambassador, HUP Heart Transplant Support Group member, Team Philadelphia member, TRIO Philadelphia Chapter Board member, UNOS Ambassador, Masonic Blood+Organ Donor Board member, and a Help Hope Live committee member. Bill is also an Eagle Scout.
When asked about the Howie’s House, Bill says: “Being a heart transplant recipient, I understand the many trials and tribulations that families go through in the transplant process. To have a place that is a safe port for transplant families to anchor in after a long day at the hospital means an awful lot, especially to those families that are not familiar with the Philadelphia area. I believe in everything the Gift of Life Howie’s House stands for and am honored to be a part of such an amazing organization.”
Jim and his wife, Kim, began their organ transplant journey in October 2014 due to complications with his liver function. He initially declined treatment because he wasn’t feeling sick and wanted to continue working towards his retirement. “There was no indication how bad it was,” Jim says. However, as time went on, Jim’s condition worsened, so much so that he was near death and his doctor recommended he turn to Hospice care. Neither Jim nor Kim accepted this diagnosis, so he began treatment. Towards the end his treatment regimen, his doctor informed him that he would need a liver transplant in order to sustain his life. The doctor referred him to a transplant hospital in Philadelphia where he would be tested and listed for a liver. For five months, Jim and his wife traveled back and forth from Virginia to Philadelphia for appointments.
During this time, the Princes’ planned a trip to visit Kim’s brother who was ill and receiving treatment in a hospital in Pittsburg. They planned to meet up with family friends Peggy and John during the trip, but when they arrived, they learned that John had suffered from a blood clot and was brought into surgery. Sadly, John did not survive and was pronounced brain dead later that afternoon. This was a terrible tragedy for their family, but John’s wife Peggy bravely decided to make the selfless decision to donate her husband’s organs—and she wanted Jim to receive John’s liver.
Shortly thereafter, Jim’s transplant team in Philadelphia flew to Pittsburg overnight to bring the liver back. After an incredibly unique chain of events and a brave family’s decision, Jim’s life-saving liver transplant surgery was successfully completed.
His story became a hospital favorite across different departments and floors. He stayed in the hospital for almost 12 days and then joined his wife Kim at the Howie’s House for the first month of his recovery. He attributes his strength during recovery to his faith and the Howie’s House’s warm, friendly environment. “Everybody’s so supportive [at the Howie’s House],” Jim says. “This is our house, and our family, too.”
“You never know the importance of how something we take for granted can change a life forever,” Kim reflects. “If you have a life, you can save a life. You never want to lose a loved one, and if there’s someone you can help, you should be willing to help someone else keep a loved one.”
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