Faces of the Howie’s House
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. |
When deciding to accept the Development internship at Gift of Life Howie’s House, I can’t deny the fact that I had slight hesitation. I had worked so hard to maintain some form of normalcy upon my mom receiving her heart transplant from Temple University Hospital in 2014. Growing up, it had always just been my mom and me. When we found out she would need a heart transplant, we both were not only in shock, but incredibly scared.
At the time, I was just shy of 18 years old entering my senior year of high school. I thought my biggest challenge that year was going to be applying to colleges; however, that didn’t come close to what I would be up against. I couldn’t help but feel completely devastated. All I could think about was my old routine. What my mom and I had done practically my entire life. We would get up in the morning together and I would dress for school and she for work. I would rush out of the door to catch the bus while she ran after me to ensure I had some form of breakfast. We would separate for the day until around 6:30pm when she would come pick me up from track practice and we’d go home for dinner.
This routine was so important to me because it set the tone for the rest of my day. My mom always sent me off with nothing but smiles and positive energy. It didn’t matter if we had an argument the night before or if I was just grumpy that morning from studying late at night. She always made sure I felt her love before I headed out the door.
This was a routine I would never experience again.
For the first three months of senior year, I spent my time going to school and then rushing to the hospital to visit my mom, which became her new home. I would sit and do my homework and apply to colleges. My mom was very adamant about making sure I was still getting my work done and taking the necessary steps to further my education. While college began to feel less and less important, I somehow managed to get through several applications with the assistance of my mom.
Finally the time came! After three long months, which felt more like three years, my mom received her precious gift of life on November 1st 2014, exactly one month after my 18th birthday. It was the best present I could have ever received!
Now transitioning to life after graduating from Temple University, I knew working at the Gift of Life Howie’s House was the right decision. I was determined to not allow my previous hesitation to stand in the way of an amazing opportunity, so despite my own fears of revisiting my past trauma, I accepted the offer!
When my first day approached, I didn’t exactly know what to expect, but I felt ready. I entered the gates of the Howie’s House and walked through the doors approaching the Front Desk. Everyone was so incredibly welcoming and friendly; I truly did feel a sense of home immediately.
It almost felt therapeutic for me to be in a space that nurtured and cared for people that were going through exactly what I went through. It was a powerful experience for me to engage with families on a professional and personal level at the House. I didn’t expect to feel such a rush of amazing emotions. I am so grateful for the Howie’s House and the experience I gained both professionally and personally. My last day will be such a bittersweet moment because I have curated such great connections with guests and the staff that I hope last beyond this opportunity.
While her granddaughter was on life support awaiting a heart transplant, Lauren Anello was living in the hospital out of her suitcase. “It’s so hard to sleep in an ICU when there is no bed to sleep on,” she says. “I slept in a reclining chair.”
Lauren’s granddaughter was born with a condition called hypertrophic cardiomyopathy, where heart muscle develops abnormally thick, making it harder to pump blood throughout her body. Thanks to an incredibly selfless donor, she received her precious gift of life in 2011.
Lauren and her granddaughter were able to stay at the Gift of Life Howie’s House after the transplant surgery, and they come back at least once a year for follow-up appointments. “There were so many times I’d come back from the hospital unable to see straight,” Lauren explains. “To have a place to lay your head at night with a clean shower is absolutely amazing.”
If the Anello family didn’t have the Gift of Life Howie’s House, they’d have to drive two and a half hours each way from their home in rural, northern New Jersey. “I was terrified of having to find a place to live in Philadelphia. It isn’t something we can afford. But at the House, the staff made it not scary. They welcomed us with open arms.”
During her stay at the House, Lauren also made a very close knit group of friends going through the transplant journey—and they still keep in touch years later.
“I don’t know any other organization like the Gift of Life Howie’s House. All of my basic necessities are met here. It is a welcoming, safe, and secure place to go. I can talk to a social worker, get a ride to the hospital, and relax in the garden outside. My stay at the House gets better each time.”
As a member of the Welcome Home Club, you can help people like Lauren and her granddaughter who are undergoing the often stressful transplant journey. A small commitment from you, whether its $10, $21, or $100 a month, will go a long way to provide meals, use of a full-service kitchen, transportation, and a place to sleep for transplant families traveling a long way to receive life-saving care.
Most importantly, when you join the Welcome Home Club, you’ll give a family one less thing to worry about, allowing them to focus on what’s most important—caring for themselves and their loved ones.
If you visited the Gift of Life Howie’s House this summer, you may have met our former Guest Services Intern, Mya, smiling behind the front desk.
Mya came to Gift of Life Howie’s House looking to support an organization that has done so much for families like hers. Mya received her own precious gift of life—a new liver—and wanted to give back to others on the transplant journey. “I found this position online and immediately knew it was for me,” she says, smiling. “It’s amazing to see the work that’s done here. I would absolutely work here for 40 years if I could!”
Shortly after Mya was born, she was diagnosed with biliary atresia, a disease in which a liver duct is either broken or missing. Her doctors were able to perform a hepatoportoenterostomy, a procedure where doctors sewed a piece of her large intestine to her liver to help it drain. However, this was only a temporary treatment, and Mya and her family knew down the road that she would still need a transplant to live a healthy life.
“Throughout my whole childhood, I was very different,” Mya explains. “If you looked at me, you could tell something was wrong.” Growing up, Mya suffered from severe splenomegaly, which is an engorgement of the spleen as a result of liver fibrosis. “I looked like I was about six months pregnant. Whenever I played outside or was in gym class, I had to wear a large plastic guard around my abdomen to protect my spleen from rupturing. That was hard, especially as a child, because it makes you very different from your classmates; it makes you the ‘sick kid,’” she says.
When Mya was 11 years old, she caught a stomach bug—something not uncommon—but this time, she didn’t bounce back as she normally did. She was hospitalized, had to use Skype to attend class, and was unable to see her friends. She also lost a significant amount of weight and was given an NG feeding tube that she kept for over a year.
Mya, her family, and her doctors knew her liver was deteriorating. She was placed on the transplant list at CHOP and waited 18 months until she received her precious gift of life from a selfless donor.
“It was a terrifying process,” Mya reflects. “I remember looking at myself and thinking that I looked like a skeleton, but I found peace in knowing that there was always an end road. My mom always told me, ‘Thank goodness it’s just liver disease. We know how to fix this, and it will all be okay.’”
Mya got the call on April 9, 2013, which she now calls “the best day of the year.”
“All I wanted in my life was to not be different. I wanted to experience life without limitation and sickness…transplant gave me that and much more,” she says.
Mya’s transplant remains an important part of her identity today at 19 years old. “I’m never going to stop being open about my transplant,” she says. “And I won’t ever stop caring about this. I’ll never stop reminding myself how much I have to be grateful for, and I’m never going to feel like I can do enough for the people who saved me. It’s so important to keep in touch with that gratitude and never stop using it to fuel my life. That’s why I’m here [at the Gift of Life Howie’s House].”
After working here at the House, Mya has changed her major to Health Behavior and Promotion and hopes to work with transplant patients in the future.
“Growing up, no one I knew had a connection to transplant. I was the only one, and I felt so alone,” she mentions. “Coming here, I don’t feel alone. You don’t feel like you’re the only one who is going or has gone through this kind of pain. I never had resources like this—it’s a really special thing about the House. It’s a whole big family here, full of love, support, and friendship. It’s heartwarming to see how much the guests love this place, and even more heartwarming to have played a role in it.”
Mya also wants to write children’s books about getting a liver transplant or what it’s like having a feeding tube, and has thought about starting a blog about nutrition for those using a feeding tube.
“I am definitely going to make sure this experience remains part of my life and my daily awareness,” she adds. “I’ve looked forward to coming to work every day, and to be included in this environment and in [the Howie’s House’s] mission. Getting to know everybody has been so special, and I am so grateful for this incredible opportunity and place that I will never forget.”
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