Lung Transplant
Before arriving at the House, Jim Healy’s journey was filled with many challenges.
Jim’s negative reaction to medication following a knee replacement in 2019 led to him developing pulmonary fibrosis. His worsening condition brought him to Philadelphia to be evaluated for a lung transplant. During that process, the tests revealed he had colorectal cancer, requiring treatment and a period of remission. Jim received treatment for his cancer and was listed for a lung transplant in 2024, 5 years after his initial diagnosis.
In August of last year, Jim received the call he waited so long for. Unfortunately, his surgery came with severe complications, leaving him hospitalized for nearly 80 days, 65 of which he spent completely immobile.
In October, Jim and Solange left the hospital and came to stay at the House.
“It was wonderful… the House was the perfect transition from the hospital. There were so many people who had lung transplants that I could trade stories with and learn from,” he shares.
“The fact that my wife didn’t have to worry about planning meals and running to the supermarket every day was incredibly helpful for her spirits and her time, and therefore my recovery,” explains Jim. He continues, “She was so busy managing everything. It was so nice to come back from the hospital and be able to relax and then go down for dinner.”
Having access to the kitchen and meals prepared by volunteers made a huge difference during their stay.
Jim has traveled and lived all over the world – with home bases in Brazil, Mexico, the US – and says that post-transplant he is looking forward to slowing down and spending time with his wife, three children, and five grandchildren.
When Jim Hughes was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in 2023, it came as a shock to him and his family. He was immediately placed on oxygen and told he would need a lung transplant to survive.
Jim and his wife, Louanne, traveled to Philadelphia after local transplant centers in the Boston area turned him down due to his complex medical condition. He was listed for a lung transplant in November of last year and has been staying at the House ever since.
The couple says the House instantly felt like home. “It’s like moving back to the neighborhood you grew up in – the people here are so warm and friendly. It’s really a huge benefit for the psyche and for your own rehabilitation,” Jim explains.
Due to Jim’s condition and a recent diabetes diagnosis, the kitchen at the House has been crucial for Louanne to prepare healthy meals tailored to his needs.
“I can create a diet for him in the kitchen that meets his needs, and that’s truly priceless,” says Louanne.
A talented cook, Louanne depends on the kitchen, cubbies, and her personal fridge space to prepare nearly every meal for both of them.
As Jim’s mobility is limited, the convenience of the kitchen has made all the difference on his journey.
“I can’t get around, and I can’t go to a restaurant. If we were in a hotel room without access to the facilities here, our lifestyle would be completely different,” Jim explains.
An updated kitchen will make it easier for Louanne and Jim to navigate the space, allowing them to spend less time cooking and more time focusing on what matters most: Jim’s care.
“[The kitchen] makes it so I don’t even have to worry about that component, it gives me more time to do other things that I have to do as a caregiver,” Louanne says.
Jim and Louanne also value the knowledge and services they’ve received at the House, which have been vital as they navigate this challenging journey. The couple, who recently celebrated their 41st anniversary, remain hopeful and eager to return home to spend time with their three children and five grandchildren
Those who have followed us for a long time might remember Matthew Brown, better known as “Mattman”, who came to stay at the House over 10 years ago when he received his life-saving heart transplant at just 5 years old.
Matt quickly became a House favorite, running around with his Batman cape and larger than life superhero personality. Since his transplant, Matt and his mom Kelly have continued to return to the House for follow-up appointments. Kelly has also stayed connected to mission, most recently through her talent as an artist by participating in our Strokes of Kindness Art Contest!
Matt, who is now 15, and Kelly recently came back to the House for a follow-up, and we had the chance to snap a picture with them and Kelly’s beautiful submission to last year’s art contest.
If you’re interested in joining Kelly and participating in this year’s Strokes of Kindness Art Contest, click here to learn more about how you can participate: https://ow.ly/6qRM50UPSGY
From all of us at the House, THANK YOU!
Thanks to your generosity, we surpassed our goal of $40,000 this Giving Tuesday by $24,000! With the support of our generous matching gift partner, that brings the total Giving Tuesday revenue to a record-breaking $104,000 raised for transplant patients and their families!
This incredible achievement would not have been possible without the dedication and support of our community. Thank you to everyone who made a gift and hosted a fundraiser. Your contributions mean the world to the families who will stay with during the holidays, and throughout the year.
A special thank you to our matching gift partner, the Foxwynd Foundation, funded by their donor advised fund, for helping us double the impact for transplant families!
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?
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
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.
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