Howie’s House
By Talia Giordano, LCSW
Family Services and Caregiver Lifeline Program Manager
After working with transplant caregivers and families for over 13 years, one theme continues to emerge: transplant caregivers consistently reveal feelings of guilt. Caregivers can often experience guilt from maintaining ones own physical and emotional health, communicating openly with loved ones, and allowing oneself to experience happiness and joy. Such feelings of guilt can weigh heavily, inhibit positive coping mechanisms, and strain relationships.
As one transplant caregiver explained, “I occasionally feel guilt or resentment, not against anyone in particular but against the circumstances. I mourn the loss of what we had planned for the rest of our lives together and the fact that it has been replaced by our new normal. Still, I am grateful that we have the time that we have been given.”
Another caregiver stated, “The pressures of being a caregiver are often overwhelming. Caring for a loved one brings me mental and physical stress and worry of losing them. I have constant thoughts whether I am doing the right things for them. This significantly impacts doing essential things for myself and brings on additional concerns that someday I too will be in the same situation as the person I care for.”
Another type of guilt transplant caregivers may experience is centered around feeling that they should have done things differently.
A third caregiver recalls, “I went through a night of guilt last night, feeling upset and questioning why I didn’t do more. I imagine that if I had made different choices at the beginning, the outcome might have been different.”
Feelings of guilt cannot simply be “turned off” when one is told, “You shouldn’t feel that way.” Emotions such as guilt, sadness, or happiness can be supported and managed through positive coping tools. Instead of discouraging feelings of guilt in caregivers, these feelings should be normalized and validated, helping caregivers feel valued and maintain a sense of self-worth.
Self-care is imperative to managing stress and the burdens associated with caring for a loved one. Schedule self-care into your daily routine, like an appointment to help you feel more accountable. Self-care does not need to be an activity that lasts for hours; it could be a 15-minute walk outside, a 15-minute chair meditation, or a creative art or craft activity. Focus on activities that help you feel replenished – even if it is just for a few minutes.
Receiving support from others in similar situations can also be beneficial for caregivers. By participating in support groups with those who have similar experiences you can feel validated and appreciated for the feelings you are experiencing. You may also learn new tips and tools for navigating the caregiving and transplant process. The Caregiver Lifeline Program offers a virtual transplant caregiver support group twice a month that caregivers can join from anywhere in the world!
Finally, sometimes feelings of guilt, depression, and anxiety may be too overwhelming and cause a negative impact on daily functioning. If this is the case, speaking to a mental health professional is recommended. A mental health professional can work with transplant caregivers in developing and maintaining positive coping tools and long-term emotional wellness.
One transplant caregiver suggests, “…my advice to anyone in the process of receiving a donation [transplant] is make sure the patient and caregiver have counseling/psychiatric support before and after.”
To talk with a social worker about resources and support around caregiver guilt, emotional wellness, or support groups, please reach out to Talia Giordano, LCSW at caregiverlifeline@giftoflifefamilyhouse.org.
The Caregiver Lifeline Program is supported in part by TD Charitable Foundation. We are thankful for their partnership and generosity.
Anthony Rojas was born a healthy child in Long Island, New York. Around the age of 3 he unfortunately developed Bronchiolitis obliterans, a severe lung disease, after contracting two different viruses.
As his symptoms worsened he was transferred to a nursing facility in New York. His doctors suggested he see a pulmonologist at The Children’s Hospital of Philadelphia (CHOP) and his family began traveling to Philadelphia for his primary care.
As his symptoms worsened he was transferred to a nursing facility in New York. His doctors suggested he see a pulmonologist at The Children’s Hospital of Philadelphia (CHOP) and his family began traveling to Philadelphia for his primary care.
He was listed for a lung transplant at 4½ years old but was removed from the list after a year when his health stabilized. Despite this, he continued to get sick often and required constant hospital stays, once even traveling by helicopter to Philadelphia for emergency care.
“We basically lived in the hospitals,” his mom, Lucy, said.
Anthony remained at the nursing facility until he was 8 years old. In July of 2022 he was relisted for a transplant after his lung function declined. After two years of waiting, Anthony received his life-saving lung transplant in June of this year.
EASING THEIR STRESS
Anthony’s mom Lucy learned about Gift of Life Howie’s House when he was first listed for a lung transplant. When Lucy arrived, she was alone and unsure of what to expect.
“You walk in not knowing anyone or what to expect. On top of that you’re thinking about the transplant, recovery and appointments…
… but as soon as you arrive, everyone greets you, welcomes you and makes you feel comfortable,” Lucy explains.
Before discovering the House, the family would leave New York early in the morning to make Anthony’s appointments in Philadelphia and drive back the same day. If Anthony had to stay overnight, they would need to find a hotel, which would add to their emotional and financial stress.
Because of the House, Lucy and her family had an affordable, comfortable place to call home surrounded by people who understood their journey. “It was a huge relief… seeing others with a common problem and who have been through something similar makes you feel safer and more protected,” Lucy says.
A SECOND CHANCE AT LIFE
After spending more than half of his life in the hospital, 10-year-old Anthony finally returned home this past August. Although he remained positive throughout his journey, Anthony is excited to enjoy normal kid activities without the burden of his oxygen.
Upon arriving home Anthony jumped into playing soccer and other games with his younger brother, Dylan. He also enjoys playing the piano which helped him through the most difficult times in the hospital. Lucy says that watching his growth and strength throughout his journey has been inspiring.
“If he is strong it means I have to be stronger,” she emphasizes. Lucy is also looking forward to the holidays. This will be the first time in years her family can celebrate without worrying about Anthony’s oxygen needs. Most importantly she expresses her gratitude to the House and its staff for helping her family throughout their journey.
This year numerous families will stay at the House over the holidays, and we need your help to ensure they are provided with affordable lodging, meals and important services during the transplant journey.
“I am thankful that I was introduced to the House. It’s a wonderful, peaceful and welcoming environment,
and has been a great help,”
Every gift regardless of its size will mean the world to these families. Knowing they have a community of support behind them will bring much-needed hope during their darkest times. Your gift today will help keep the fees low by bridging the gap between the modest nightly fee of $40 and the actual cost of providing services, which now exceeds $200.
For families like Anthony’s, the House is an essential part of their path back home. Help continue to support their journey and many others by making a gift today.
If you can offer a special gift of $250 or more, you’ll also become a cherished member of the Family Circle.
Interested in supporting our Adopt-A-Family Program?
Philadelphia’s seven transplant centers draw patients from across the country. Along with them come families uprooted from their homes. There’s a special place where many stay called Howie’s House.
Gina Adams and her daughter Kemiyah of Harrisburg, Pa., were recent guests. They told us how their transplant journey started in Harrisburg.
“I was in my room, Kemiyah recalls.
She was listening to music the day before Thanksgiving, when out of the blue…
“I remember kind of like falling, like off of the bed,” she says.
“She was lying on the floor, crying,” Gina says.
“The words that’s coming out of her mouth just doesn’t make sense,” she explains.
Gina didn’t know till the next day at a hospital that her 15-year-old daughter was having a stroke.
“There was a blood clot on her brain,” she says of her surprise looking at her daughter’s CT scan.
A clot brought on by heart failure.
Within hours, Gina, Kemiyah, and brother Kane left Harrisburg for Children’s Hospital, where doctors said Kemiyah needed a new heart. For Gina, 100 miles from home, Howie’s House became an oasis. It’s the brainchild, and named after, former Gift of Life CEO Howard Nathan, inspired by out-of-town families he and his mother met when his sister got a liver transplant.
“That struck me at that moment, that part of the transplant process is that families have to be cared for,” says the Howie’s House founder.
“In general, hospitals don’t have hospitality for family members,” he adds.
Since opening in 2011, Howie’s House has provided 100,000 nights for families awaiting transplants or follow-up visits.
“We’re thankful for them because we’re able to have something to eat every day and somewhere to sleep,” Gina says.
Dinners are made by the Home Cook Heroes.
“Every night at 6 o’clock, there is a home-cooked meal by volunteers in our great kitchen,” Nathan says.
Transplant families meet, share stories, and support each other there. There’s also an exercise room, a game room, and organized activities. Now back in Harrisburg with a new heart, Kemiyah made a happy return to high school. “Without that gift she wouldn’t be able to attend school,” Gina says gratefully. Howie’s House is full almost every night, so someday it may have to be expanded. But right now, the Gift of Life is focused on new organ donors.
If you haven’t signed up as a donor, it only takes a few minutes.
Last weekend, our friends over at @beeablessingnj hosted their annual Friends for Life fundraiser at the Collingswood Grand Ballroom and it was a huge hit! The theme was Lights Camera Action and attendees came dressed for the occasion in various movie and TV costumes. This special event raised funds for Gift of Life Howie’s House and the Bee a Blessing Scholarship fund.
The Clendining family continues Bee a Blessing, Inc. in memory of their two siblings, Jan and Michael, who were both transplant recipients, and in honor of their mother, Rose, who is a living donor. We are grateful to the family and their entire community for their continuous support of our mission!
Check out these photos on our instagram from the event and let us know which costume is your favorite!
https://www.instagram.com/p/DAE0gBPNNQY/
We’d like to give a special shout out to our friends at Organ Recovery Systems, who not only cooked a meal for our families tonight but also recently supported our Home Cook Heroes Program with a generous pledge of $100,000! Organ Recovery Systems has been a partner in caring for transplant families at the House since 2011, and we could not be more grateful for their support of our mission.
“Supporting Gift of Life Howie’s House is a true privilege – their unwavering dedication to caring for transplant patients and their families is nothing short of inspiring, and Organ Recovery Systems is honored to play a small part in their incredible mission. Our team especially loves participating in the Home Cook Heroes Program, where we can offer comfort through meals and contribute to the sense of community and care that Howie’s House provides”, says Kayla Andalina, ORS team member.
Thank you to Organ Recovery Systems for more than 13 years of steadfast support for transplant families at the House!
The staff at the MTF Edison, NJ location organized a collection of wish list items that were most needed at the House. President and CEO, Rick Hasz, drove the shuttle with members of the Development team, Abby Wells and Sara Cohen, to stuff the shuttle and bring it back to the House!
MTF Biologics is a valued partner of Gift of Life and also supports the House through the Kidney Open, the Donor Dash, and by regularly volunteering as 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
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
News & Events
Stay Connected
Sign up to receive email updates featuring transplant stories of hope and ways you can get involved with the Howie's House.
"*" indicates required fields
