Howie's House Blog
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.
By Talia Giordano, LCSW
Family Services and Caregiver Lifeline Program Manager
Taking on the role of a caregiver does not erase your original role as a spouse, parent, child or friend. Maintaining balance is key to avoiding the loss of your own identity. Here are key strategies:
1. Set Boundaries:
Clearly define what you can and cannot do as a transplant caregiver. Communicate our limits and seek help with tasks that cause stress, such as managing complex medical needs or providing emotional support during recovery. Setting boundaries can help prevent resentment and burnout.
2. Create a Transplant Care Plan:
Use a journal to organize caregiving tasks and appointments related to the transplant. Record medication schedules, doctor visits, and transplant care needs, especially post-transplant. This will help you identify when assistance is needed, schedule personal time, and manage responsibilities more effectively.
3. Take Personal Time:
Prioritize activities that bring you joy to maintain your well-being. Regular self-care is crucial for sustaining the stamina and emotional resilience required for transplant caregiving.
4. Nurture Relationships:
Set aside time away from caregiving to strengthen your bond, such as a date night with your spouse, quality time with your child, or meaningful conversations with a parent. Engage in activities that reinforce your original connection and maintain a sense of closeness.
5. Ask for Help:
Don’t hesitate to seek support from family, friends, or professionals such as transplant social workers or counselors. Take advantage of respite care from loved ones or in-home nursing aides to ease the demands of transplant caregiving and ensure you receive the emotional support you need. By preserving the core of your relationship and establishing clear boundaries, transplant caregiving can become a fulfilling experience rather than an overwhelming one.
Challenges for Transplant Caregivers in Different Relationships
As a Spouse:
Caregiving for a transplant patient can blur roles and create stress. To maintain intimacy and partnership, schedule “couple time” and ensure caregiving doesn’t dominate your interactions. Seek professional support for emotional guidance when needed, particularly if medical tasks or recovery begin to strain the relationship.
As a Parent:
Balancing caregiving for a child undergoing a transplant can be overwhelming. Encourage children to participate in age-appropriate activities to maintain a sense of normalcy. Involve them in decisions about their care to empower and reassure them throughout the process.
As a Son/Daughter:
Caring for aging parents after a transplant can be emotionally taxing. Work together to meet their daily needs while preserving their independence. Utilize transplant resources for financial and emotional support, and collaborate with healthcare providers to manage post-transplant care effectively.
As a Friend:
Caregiving for a friend undergoing a transplant can be challenging without familial authority. Maintain boundaries and remember to nurture the friendship beyond caregiving duties. Offer both practical and
emotional support while respecting their autonomy.
To talk with a social worker about resources and support around maintaining healthy relationships as a transplant caregiver, please reach out to Talia Giordano, LCSW at caregiverlifeline@giftoflifehowieshouse.org
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
2024 was a year of milestones, memories, and historic impact for transplant families at Gift of Life Howie’s House.
Despite it being one of our busiest years on record, we never scaled back on our services, never raised our nightly fee, or turned away a family due to financial hardship – all thanks to the support of our community!
We are so grateful to continue our mission year after year, and look forward to the year ahead!
Thank you to the Alpha Kappa Alpha Sorority Inc.-Omega Mu Omega Chapter for volunteering at the House on Martin Luther King Day for the sorority’s “We Are One” AKA Day of Service.
The group stocked the pantry with snacks and household essentials, organized and stored volunteer center donations, disposed of expired items, and prepared check-in packets and volunteer information bags!
Volunteers included living kidney donor Sue Levy Giles and her daughter Alexandria, who received a kidney transplant through a paired donor exchange involving her mom. Sue shared that the group “thoroughly enjoyed the meaningful projects we were given and hope that our efforts will contribute, even in a small way, to supporting the invaluable work your organization does for organ transplant recipients and their families.”
Major Milestone Alert!
Today, John and his group are celebrating their 100th visit of coming to cook in our kitchen! This is an amazing accomplishment and a true testament to the generosity and dedication of John and his group in serving transplant families at the House.
John Schmid and his volunteer group, “Friends of Bear”, are familiar faces here at the House. John, affectionately nicknamed, “Bear”, has been coming to cook in our kitchen since 2018. He started involving his family and friends, and has since become a prolific Home Cook Hero All-Star.
Thank you to the entire Friends of Bear community for your unwavering support of our mission!
On the eve of Thanksgiving, the Neshaminy Ice Hockey community hosted its 7th Annual Gannon Cup in memory of Patrick Gannon and Phillip Oseredzuk.
This annual event honors two former ice hockey players who tragically passed away and went on to become organ donor heroes. This special fundraiser reached a new milestone, raising over $10,300 to support Gift of Life Howie’s House! This fundraiser continues to be a significant occasion within the Neshaminy ice hockey community, remembering Patrick and Phillip, and ensuring their legacy lives on for years to come.
With the funds raised, the event will once again sponsor a guest room at the House in memory of Patrick and Phillip. Thank you to this amazing community for its ongoing support of our mission.
Dear Friends,
I hope you are having a restful holiday filled with good food, shared memories, and quality time spent with loved ones.
I am grateful to be celebrating a new lease on life for both myself and my husband, Don, who received a life-saving lung transplant. Just two years ago, however, our future was much less certain. During the 2022 holiday season, I was staying at Gift of Life Howie’s House while Don remained in the hospital, undergoing his lung transplant and recovery.
Despite being alone for many weeks, I never felt lonely. Someone at the House always offered a smile, sat with me, or provided encouraging words.
I will never forget waking up on Christmas morning and finding a lovely Christmas gift bag outside my door. Knowing I wasn’t alone brought tears to my eyes. After being at the hospital all day, I was welcomed back to the House that evening with a delicious Christmas dinner, in their beautiful and festive dining room.
Two years ago, we received our Christmas miracle – a lung transplant for Don. Since then, we have enjoyed precious memories – celebrating our granddaughters’ birthdays, traveling, watching our daughter renew her wedding vows, and so much more.
None of this would have been possible without the generous gift of Don’s lung donor, the resources we received during our journey, and the many people like you who make this important mission possible.
If you haven’t done so already, please consider helping families like mine who will be away from home today. My husband and I will forever be grateful for the care we received at the Gift of Life Howie’s House, and with your gift, you can ensure other families will receive the same support.
Happy Holidays to you and yours.
Warm regards,
Linda Price
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?
As we wrap up #NationalCaregiversMonth, we’d like to continue the theme of giving thanks by sharing this heartwarming quote from Dana Nelson, a past guest and transplant recipient, about his wife and caregiver, Donna.
“Donna is very important to my transplant journey; she keeps me grounded and focused. She puts up with my mood swings, comforts me when I’m feeling down, she handles problems with insurance, and makes sure I keep my appointments straight. We have been married for almost 25 years, and we never thought our lives would change in an instant. She has been strong and courageous throughout this whole rollercoaster of a ride. I wouldn’t want anyone else by my side, she’s the best.”
Please shout-out a special caregiver below to show them how thankful you are!
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