Lung Transplant
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. |
Ashley and Bobby were busy planning their wedding when Bobby became ill and required a double lung transplant. Quickly their lives were turned upside down. Ashley became a caregiver at just 27 and has learned how to manage the new life transplant brings.
How did your transplant caregiving journey begin?
I became a caregiver to my husband who unexpectedly fell ill and received the amazing gift of life—a double lung transplant. His five year transplant anniversary will be on 3/20/20, which is also our wedding anniversary. We were married in the hospital just before his surgery.
What has been challenging for you?
Learning to best manage a life that others are not accustomed to has been the most challenging. While spending time with family and friends is so important to us, we have to be careful around those who are ill because the effects could be devastating to Bobby. Despite the challenges of this new life, it’s ALL worth it because someone made a selfless decision to save someone else’s life through organ donation. My husband is here because of that decision.
What would you say to a caregiver new to the transplant journey?
Work hard for your loved one and advocate for them when they can’t. And don’t forget to advocate for yourself, because you are just as important! Not all of your loved ones will understand what you’re going through, and that’s okay! Make sure you use your resources to find the support you need, including online or in-person support groups, a therapist, or spending more time with those you feel most supported by. And don’t forget to keep up on your own personal hobbies. They can do wonders for your spirit and perseverance!
The Caregiver Lifeline Program is supported in part by TD Charitable Foundation and Bridge to Life. We are thankful for their partnership and generosity.
When Donna Jones was diagnosed with three different, simultaneous lung infections, the mother of four found herself in need of her children’s care and a “home away from home.”
“I’ve always been a very active mom and grandmother,” Donna says. “But as I got sicker and sicker, I was really grateful to have them be there for me.”
As Donna’s condition worsened, her daughter Nicole and her siblings decided together it would be best for their mom to have someone stay with and care for her. Nicole offered to move in with her mom and help take care of her, her pets, and her house.
Donna suffered a collapsed lung in 2012 and was able to recover well. Although she was moving more slowly than she was used to, she was able to attend three of her children’s weddings and continue working from home as an IT consultant.
Tragedy struck again on New Year’s Eve in 2015 when Donna suffered another collapsed lung. This time, her doctors suggested she consider a lung transplant. She was listed in 2017. Donna would remain on oxygen and require around the clock care until an organ became available for her.
Thankfully, Nicole was able to be by her mom’s side.
Donna received “the call” that a donor organ had become available in December of 2018 and together, she and Nicole quickly left their home in Maryland to get to Philadelphia. As soon as they arrived at the hospital, Donna was immediately taken to surgery to receive her precious gift of life. Nicole reassured her siblings: “I got mom,” she said.
Two of Donna’s other three children were able to arrive in Philadelphia following the procedure.
After her transplant, Donna spent 21 days in the ICU and 18 days in inpatient therapy. Afterwards, she and Nicole came to stay at Gift of Life Howie’s House so she could remain close to her doctors.
“I would recommend this place to anyone—it’s a comforting and loving environment,” Nicole says. “You get to talk to people at all points in the transplant journey.”
Although Nicole was the only one of Donna’s children to stay with her at the Gift of Life Howie’s House, the others felt so comforted knowing that their mother had a safe place to stay.
“I sent them photos and took them on a video tour,” Nicole says. “Instantly, they all felt at ease knowing mom and I were okay.”
“You make a family here,” Donna adds. “We all exchange phone numbers. You learn from others. You encourage them. You can really feel the love.”
Although all of Donna’s children could not be at her side as Nicole was, they all supported their mother in different ways. While she was in the ICU after her transplant, they visited and brought her grandchildren down to keep her company.
To help her grandson understand what happened to his grandmother, one of Donna’s daughters wrote the children’s book “My Nonna’s Boo Boo” to teach him about her lung transplant.
Donna’s transplant journey brought her and her children closer together. “This was a very emotional journey,” Nicole says. “I don’t regret anything, especially if it means that I can have my mom around. I just want her to get back to the person she misses being.”
“I am so grateful to have Nicole in my life,” Donna says. “She does everything for me. I am so blessed.”
Here at the House, mothers and daughters like Donna and Nicole can stay together and take care of each other while they navigate the difficult transplant journey. Other family members can also find comfort in knowing their loved one has a safe place to stay during a stressful time. Donna was able to recover after receiving her precious gift of life from an incredibly selfless donor and Nicole was not only able to take care of her, but find the comfort and support she needed as her mom’s caregiver, too.
This Mother’s Day, you can honor a special mother, sister, or woman in your life by making a gift to support the Gift of Life Howie’s House, a “home away from home” to many mothers and daughters like Donna and Nicole. Consider honoring someone all year along by making a monthly gift. Our Welcome Home Club for monthly giving helps make sure patients and their families have a safe, supportive space to return to at the end of each day—all year round.
Something very special happened in the Gift of Life Howie’s House kitchen this summer.
Two families not only came together to cook a warm, home-cooked meal for our guests, but to also celebrate the life of toddler Mason Hess, an organ donor who saved four lives.
The two families were Mason’s own, and the family of the little boy who received Mason’s lungs, Bryson Palmer.
Kellie and Adam Hess regularly volunteer at the Gift of Life Howie’s House as Home Cook Heroes as a way to keep Mason’s memory alive. When Bryson Palmer and his family flew from their home in Ohio to visit the Hess’ in New Jersey, everyone thought it would be a great idea to cook a meal together at the House. The only volunteer date available during their visit was Mason’s birthday.
“It was such a moving experience to cook with the family of one of Mason’s recipients and see how far both families have come,” Kellie says. “We are so happy that this wonderful little boy is healthy. We felt such a bond with him.”
When Bryson was five months old, he was diagnosed with neuroblastoma cancer and received 18 months of treatment, including chemotherapy, stem cell transplant, radiation, and immuno-therapy. Unfortunately, he suffered a rare side effect—progressive scarring of the lungs—and required a double lung transplant. Bryson and his family traveled over 500 miles from Ohio to St. Louis, Missouri where he waited for 12 weeks in the PICU before he received his precious gift of life from Mason.
It’s been six years since Bryson received his transplant and he has remained cancer free. He’s also the healthiest he’s ever been.
“It feels like Mason’s family and my family were meant to be in each other’s lives,” Katie, Bryson’s mother, says. “We at least hoped we’d be able to say thank you to the family who donated their loved one’s organs. We never expected to have such a close relationship, but now we’re all family.”
The Palmers’ stay as Home Cook Heroes was the first time they’d ever been to a Gift of Life Howie’s House-like facility. “During Bryson’s transplant journey, we traveled over 500 miles from home,” Katie says. “We were told we had to stay there but had nowhere to go. I slept in the hospital with Bryson and kept necessities in my car in the parking garage. My husband traveled back and forth from Ohio so he could continue working. We eventually did get an apartment, but there was no pantry, no meal offered every night, and we were completely on our own. It’s amazing that the House is a place to call home for so many people.” While cooking at the House, Bryson and his family were able to meet two other double lung recipients.
“It’s so nice to see this community,” Katie adds. “It would’ve been nice to have other families to talk to.”
We are so proud and humbled that our kitchen was a warm meeting place for such a meaningful moment between a donor and recipient family. These families are a true testament to how organ donation changes lives—and it was all possible because Adam and Kellie said yes to donation.
Through the generosity and support of our contributors, Gift of Life Howie’s House is able to provide a “home away from home” for transplant patients and their families.
Click here to donate today!
When Tim Adams was diagnosed with idiopathic pulmonary fibrosis, his pulmonologist told him he only had one year left to live.
However, three years and a new lung later, Tim is doing very well.
Tim came to seek life-saving transplant treatment at Temple University Hospital in Philadelphia. His wife, Donnamarie, stayed at the Gift of Life Howie’s House for two months during his treatment and visited him every day.
“Having my wife nearby was especially helpful to my recovery,” Tim says. “Having a place for your family to stay while having major, life-saving surgery is an incredible blessing.”
Tim and Donnamarie are from southern New Jersey. If it wasn’t for the House, they would’ve had to rent an apartment—a huge financial strain.
Tim was able to join Donnamarie at the House after he received his precious gift of life from a selfless donor. Having an affordable place to stay in Philadelphia was a huge help as he went back and forth from the hospital for rehab visits. He and Donnamarie still travel to Philadelphia for Tim’s follow-up appointments.
“The Gift of Life Howie’s House, the staff, and its offerings helped us so much,” Tim says. “We’ve met and befriended other lung transplant patients from around the country. We keep up with each other.”
At the House, it’s easy for guests, whether they’re a patient or caregiver, to connect with each other. Sharing stories and words of wisdom with people on the same journey, and with those who’ve had similar experiences, can relieve their worries and stress.
Tim calls his post-op time at the Gift of Life Howie’s House his “reintegration to society.” He explains: “I was able to settle down from ‘pure’ hospital life and be around other people whom I once avoided to prevent getting sick because of my suppressed auto-immune system. At the House, other people understand post-op patients. You can come back into the world and still have your safe space.”
Now, one year post-transplant, Tim tells everyone he can about the Gift of Life Howie’s House and how it has helped him. He also joined the Board of Directors of the 2nd Wind Lung Transplant Association dedicated to supporting lung transplant patients.
“I tell everybody I know about the House. If I could, I’d run an ad in the NY Times. Everyone should know about Gift of Life Howie’s House.”
Corey Baker received his precious gift of life—a set of lungs—last September from as a charitable act from a kind, selfless donor. He and his parents, Jack and Sharon, traveled from upstate New York to Philadelphia when they found out his pulmonary hypertension treatment would require a transplant.
Jack and Sharon stayed at the Gift of Life Howie’s House while their son received treatment and during his recovery. While Corey was in the hospital, his parents would use our shuttle to travel back and forth from the hospital each day. “The reason we chose to stay at the Gift of Life Howie’s House was because of the shuttle service. Sharon doesn’t drive and I didn’t feel comfortable putting her in a taxi when I couldn’t travel with her,” Jack explains. “Because it was free, traveling was a lot easier for us.”
When Corey was in the hospital, his mother used it every day to visit him. “I usually took the 8:00 a.m. shuttle in the morning and took the last one back around 5:00 p.m.,” she says. After his transplant, Corey took the shuttle at least three times a week to travel back and forth from the House and his rehab appointments.
Corey, Jack, and Sharon all agree that talking to our volunteer shuttle drivers and other transplant families who they met on their rides brought them hope and comfort. “Many of the drivers and guests told us about their own transplant journeys. It was nice to hear about their experiences and what they learned,” Sharon says. Jack and Corey enjoyed how comfortable they felt learning about the unfamiliar city they were now living in. “We loved how all the drivers explained the city to you. We live four hours away, and we don’t know it well. Around the holidays, it was nice to look at the buildings lit up. We’re from the country—we never see sights like that,” Jack explains.
Once Corey was feeling better, he and Sharon would take walks to different places the shuttle drivers pointed out. “We’d remember places, and once he got well enough, Corey and I would walk to them,” Sharon says. “It was a great way to get out and enjoy the weather.”
Last year, our shuttle transported more than 4,600 guests between the Gift of Life Howie’s House and Philadelphia’s transplant hospitals. Unfortunately, there were many trips when guests were turned away because the shuttle was too full or could not accommodate their needs, such as space for oxygen tanks and wheelchairs. Sharon herself experienced some of these issues. “There were times I was turned away from the shuttle because it was full. It seemed really, really busy,” she says.
This spring, the Gift of Life Howie’s House hopes to raise $50,000 to purchase a new, 11-passenger shuttle to better accommodate our guests. Our new shuttle will have more seating for our guests, a larger cargo area, and it will be easier for patients and their families with equipment or physical disabilities to get on and off.
To accomplish this, we need your help.
Our shuttle service alleviated the financial stresses the transplant journey can bring for the Baker family. Without it, the Bakers say they would have had a difficult time getting to and from hospital visits and doctor’s appointments. “We would have to use Uber, which can cost anywhere between $10 and $20 depending on the time of day,” Jack says. “One time, we took an Uber in a snowstorm and it cost us $82.”
“I didn’t even have access to Uber when we first got to the House,” Sharon adds. “I still had a flip phone.”
The Bakers understand our need for a larger, more accessible vehicle.
“There’s always someone going in and out of the Gift of Life Howie’s House,” Sharon says. “A lot of times, some people were too late or too early for the shuttle. Sometimes, there weren’t enough drivers. We’d see Joe, the manager, filling in a lot.”
“Extra seating would help a lot of people,” Jack says. “The bigger shuttle will be able to fit 5 more people. That’s a big difference.”
A gift towards our campaign for a new shuttle will help families like the Bakers feel comfortable traveling in a new, unfamiliar city during the often stressful transplant journey and help guests like Corey continue to get the care they need.
Please consider making a donation below:
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