Stories Test 1
Thank you to everyone who came to our first Gift of Life Young Friends Kick-Off event!
We had an incredibly successful event and loved the chance to get to know our future Young Friends members and discuss the group goals, future events, and more! We’d also like to thank our friends at Urban Village Brewing Company for hosting part of this special event!
If you weren’t able to make the kick-off but are interested in joining, don’t worry! Sign up here to learn more and receive communications about future events and updates!
Andria received a life-saving liver transplant at just 11 years old and now is turning her “personal experience into a professional passion” as a lung transplant social worker at the Hospital of the University of Pennsylvania. For National Social Work Month, we interviewed Andria to learn more about her role and experience as a transplant social worker, as well has how people like her support transplant patients and families at the House. Read below to learn more about Andria!
Question 1: What are the key ways you support transplant patients and their families throughout the transplant process?
Andria: We see the patients through their entire journey. We evaluate our patients pre-transplant, we meet with their families and support people and ensure they have adequate support from a post-transplant perspective. We talk through what post-transplant would look like, the different things that they’re going to need, and if they live further away, then what their relocation plan would be. Post-transplant, our role is to provide emotional support at the bedside to the patients and their family at least once a week and just be a familiar face. We also assist them with practical needs such as lodging, transportation, financial resources, and also help them to navigate the medical system and transplant process. Lastly, I just help connect patients with support groups, community resources, local therapists and other supportive resources.
Question 2: You had a liver transplant as a child—how did that experience shape your decision to become a transplant social worker?
Andria: Going through a liver transplant as a child deeply impacted me and shaped my career path. It gave me firsthand insight into the emotional, physical, and logistical challenges transplant patients and their families face. The support of my family, medical team, and others helped me then and continues to now and their compassion left a lasting impression, inspiring me to provide the same support to others. I always knew I wanted a healthcare career as a way to give back, and discovering social work was the perfect avenue to allow me to do this. It allows me to walk alongside the patients or families, helping them navigate the complex and very overwhelming journey of transplantation. Being able to turn my personal experience into a professional passion has been incredibly rewarding.
Question 3: What are some common challenges transplant patients and families face, and how can a transplant social worker help navigate them?
Andria: The transplant journey is a big emotional strain so we try to provide emotional support and connect patients with others facing the same challenges. Transplant can be difficult to watch loved ones experience, so we also help to manage the caregiver stress and offer support and resources to the families as well. We try and be the advocate for families, connecting them with different supportive resources at the hospital and guiding them through challenges. Financial strain is common challenge, so we assist them with applying for financial aid and grants. We also help patients understand the complex transplant process and follow-up care and ensure that they have the adequate support to continue their journey post-transplant.
Question 4: Can you explain how you have worked with the House in the past and why maintaining that relationship between our organizations is so important?
We work with the House a lot. We have a lot of patients that stay there that might need a little extra emotional assistance, so we coordinate with Talia and Mia when they meet with patients and caregivers as they go through the process. We also hear so much about the dinners at the House, we know that having a warm meal each night has such a big impact on our patients. The financial assistance the House gives to some of our patients as well has been a huge support, so we just appreciate everything. We work with a lot of different organizations, and working together with places like the House just helps us to give patients the most successful outcomes we can.
Question 5: What do you enjoy most about your role as a social worker?
I enjoy being able to provide the support to patients and families and to hear about their journey. They often come to us incredibly sick and being able to see them get transplanted and be successful is very rewarding. I also love being able to work in a field that I’m passionate about, and that’s so close to home and has been a part of my life since forever.
Question 6: How did you get involved in social work?
I learned about the social work career through a presentation at school for career day. I specifically learned more about hospital social work partially through the House actually. My family would sometimes come to cook brunch at the House, and I learned through meeting Talia that there were avenues of social work outside of the regular types you would think of, and from there I was able to dive into it.
Question 7: What do you like to outside of work?
My family has a house in Ocean City, NJ and we spend a lot of time there. I’m very involved in my church, they supported us in many ways throughout my transplant journey and I stay very involved there. I like reading, spending time with family and friends, and I love Broadway musicals and watching the Phillies play!
Balancing caregiving for a transplant patient and being a mom can feel like an overwhelming task. Amber shares her experiences of caring for her son facing the unimaginable challenge of heart failure and the urgent need for a heart transplant.
Amber, Mother of Gavin
Q: On February 28, (Amber’s birthday) Gavin, at just 18 years old, underwent open heart surgery during which he received an LVAD after unexpectedly being diagnosed with heart failure, despite having no prior medical issues. Gavin was living a normal life as a teenager, preparing to graduate high school and attend Penn State University. How do you manage the balance between letting him experience a “normal” teenage life while also being cautious as a pre-transplant patient?
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: As Gavin prepares to graduate from high school soon and plans for college, how do you anticipate aspects of being his caregiver to change?
A: Gavin is very self-sufficient and intelligent and has taken it upon himself to learn every aspect of his care. His Dad works on campus at Penn State where Gavin will be attending, and is trained in LVAD care, so we do have that “comfort cushion” that some other parents might not have. When Gavin goes off to college in the fall, I have the same worries that every parent does, compounded with the stress of a future transplant. Gavin is a great scholar, so he has learned all about his condition. However, when you first hear the words “your child needs a heart transplant,” it feels like you’ve just dropped several floors in an elevator. While we understand that the world of transplants has come a long way over the past several decades, and the odds stand in his favor, it’s still very scary. As his parents, we stand on our Faith, but we’re still human and have the fear of the worst-case scenarios and the “what ifs.” On the other hand, Gavin has complete confidence in his medical team and science, and sees a transplant as something that will fix him so he can go on to lead a full, long life.
You can provide hope to the thousands of people like Gavin who are waiting for a transplant. Learn more and sign up at www.donors1.org/register
Over 17 years ago, Sean Rhoads made the generous decision to become a living liver donor to his close friend who was suffering from Cystic Fibrosis, thus saving her life. However, rare complications from his surgery left him in desperate need of a transplant himself. Just two weeks later, Sean received a life-saving transplant thanks to an organ donor hero.
Gift of Life Howie’s House was not in existence when Sean received his transplant, so his parents stayed at a nearby hotel for nearly 3 months during his hospitalization. He knows they would have benefited greatly from the services the House provides. Sean eventually recovered from his surgery and currently resides in Canada with his wife, Keri.
Wanting to help other families like his, Sean has been supporting the mission of the House annually since 2012. Recently, Sean and Keri decided to make a planned gift and joined the Gift of Life Howie’s House Legacy Society.
“It’s good to be able to donate every year, but when you’re gone, those donations stop. If you care enough about a cause to support it, I think it’s important to continue supporting even after you’re gone,” says Sean.
Please join Sean Rhoads as a member of the Legacy Society for Planned Giving. To learn more about making a planned gift to the House, please visit GiftofLifeHowiesHouse.org or call 267-546-9812.
A heartfelt thank you goes out to all the exceptionally talented artists who have shared their creations for this special fundraiser.
The voting period will close on April 30, 2024. Submission Theme Prompt: “Kindness through Giving”
Your generous contributions to this contest will play a vital role in ensuring the House can continue providing affordable lodging, meals, transportation, and supportive services to transplant patients and their families who travel to Philadelphia for crucial, life-saving medical care.
Untitled
by Patricia Pavlick
“What better way to give kindness than with a single flower? You do not need a whole bouquet to impress someone’s heart. One single flower can mean the world to someone having a bad day. Kindness is not expensive. It just needs to come from the heart.”
Postcard
by Jeff Feeny
“Receiving a “Postcard” from a loved one is always a pleasant surprise. The sender takes the time to find a special card and carefully hand writes their message in the available space. They talk about the wonderful places they are sending from and want to share their experiences with you. This written act of kindness instantly transports the recipient to a different place and time where they feel connected and loved. My mixed media painting titled “Postcard” symbolizes this lost art of giving and sharing. I took a photo of my artwork and subtly added the GLHH logo. Then I wrote a paragraph about why I chose this subject, albeit from the thoughts of a young person. The two pink heart gems were added last to represent the circuitous journey the postcard makes.”
Medium: Mixed media painting
Tree of Life Cares are Future
by Laverne Clark
“I’m LaVerne Clark, heart transplant recipient 12/03. I guess you can say I’m a big supporter in sharing my GOL story. I love going to the hospital and talking to the many doctors and nurses, about how important their jobs are. My goal is to make people think about life after death and how they can save lives by becoming a donor. I would just like to give hope to someone waiting for their gift of life, a second chance.”
Angels Wings Brings Many Blessings
by Laverne Clark
“When a person dies or gains their wings by becoming a organ donor. That one person can bless so many people, this is all apart of “Kindness through Giving”. What’s a better gift to give.”
Early Hudson
by Felicia Casey
“I offer them as reminders of our personal places of joy. Many find the ocean, travel and the earth’s majestic forests, to be gift churches for the soul. Each of us has a specific yearning to find and be comforted by that one place that makes us feel so good. It is kindness to help each other find these good places to rest.”
Medium: Mixed medium on paper
Earth to Sky
by Felicia Casey
“I offer them as reminders of our personal places of joy. Many find the ocean, travel and the earth’s majestic forests, to be gift churches for the soul. Each of us has a specific yearning to find and be comforted by that one place that makes us feel so good. It is kindness to help each other find these good places to rest.”
Medium: Mixed medium on paper
Ocean One
by Felicia Casey
“I offer them as reminders of our personal places of joy. Many find the ocean, travel and the earth’s majestic forests, to be gift churches for the soul. Each of us has a specific yearning to find and be comforted by that one place that makes us feel so good. It is kindness to help each other find these good places to rest.”
Medium: Mixed medium on paper
Living Through Giving
by Karen Carns
Kindness through Giving is shown in many ways, but my choice this time is to show the generous organ donations that people give from their hearts. The Gift of Life House represents the means by which organs are procured and given to those in need, a real gift of life.
Hands Across Time
by Patricia Busarello
“Kindness through giving someone a moment of our time can make all the difference in how their day unfolds. It may be a smile or the touch of a warm hand. This work is colored pencil with gold leaf. It is based on a photo of my mother with Emily, one of her many great-grandchildren.”
Hearts and Love
by Rejena Buckley
“My husband received a heart transplant from Jefferson Health in 2023, he spent most of the year in the hospital and then the rehab facility. Our family has stayed at Howie’s House, we engage in support groups and various other activities with GOL. We have seen firsthand how the impact of volunteer support and funding is key to the needed strength and support for both patients and their support families during these journeys. The hearts in this painting signify the gift of new life my husband received from the heart transplant but also the hearts of so many who touched him along the way. The white marks, swirls and dots signify the challenges – ups and downs, the curve balls, the blood, sweat, tears, surgeries, medications, support systems, and procedures we have faced yet overcome with the strength we have received from all the wonderful support, care, actions of the medical staff, support teams, friends, and family along the path. We are grateful for the kindness of others that allows us to all have a happy life. Noteworthy recollection while painting this piece were the kind words of thanks my husband shared with the transplant surgeon during the hospital recovery for his new heart; the surgeon’s humble response, “that’s my job, just do something good with it!”. This is our reminder of the love received with this new heart through the kindness of the people that surround us. A little love of what we do each day gives love to all in many ways.”
Medium: Acrylics on Canvas
Be the Change
by Rejena Buckley
“My husband received a heart transplant from Jefferson Health in 2023, he spent most of the year in the hospital and then the rehab facility. Our family has stayed at Howie’s House, we engage in support groups and various other activities with Gift of Life. The Gift of Life services are keys to maintaining strength, stability, balance and minimize financial strains associated. As my husband continues to recover, I painted this to remind him of the journey…one day at a time. Every positive thought and act of kindness given and appreciation for those received strengthen him on this journey of life. I also added flowers as I love gardening and cutting our fresh flowers for him, however after transplant he can no longer have fresh flowers, therefore this was my act of giving beautiful flowers for him to enjoy. It’s the little things that become big gifts!”
Medium: Acrylics on Canvas
Light of a New Day
by Rejena Buckley
“My husband received a heart transplant from Jefferson Health in 2023, he spent most of the year in the hospital and then the rehab facility. The cost associated with traveling to the city, the travel time, the need to have close resources, support facilities/people as well as food on the go can be incredibly draining financially as well as mentally and physically for patients and caregivers. Our family has stayed at Howie’s House, we engage in support groups and various other activities with GOL. We appreciate the services and are thankful for the love and support we have received from the community and want to give back. I painted this picture as I looked out of my husband’s rehab window at night overlooking the Philly city lights. It looked so bright and vibrant. I am grateful and appreciate every day looking out the window into the city lights thinking of the new life, new light, new day the gift of kindness from our donor family and transplant team have provided us.”
Medium: Acrylics on Canvas
Sunrise on the Beach
by Mindy Ritzman
“Thanks to a generous organ donor, I received a kidney transplant in September of 2019. A few years ago, I took up a hobby called diamond painting. Recently, I gifted my largest custom diamond painting to a very dear person, my transplant nurse. He captures beautiful pictures on his way to work in the morning, and what better way to display them than through a custom diamond painting. Taking nearly a year to complete, each diamond drill was meticulously placed on the canvas and mounted on a board. The nurse supported me through the highs and lows of my transplant journey and experienced a significant loss last year, the loss of his wife. When I learned about this, I realized that this diamond art piece held much more meaning than just being a gift. I don’t refer to this piece as a work of art because it’s truly a work of heart. What you put out into the world has its way of coming back to you!”
Remy
by Nicole McGonigal
“For the past year, I have been getting to know horses at a wonderful establishment. When I first arrived, I was nervous to be around such large creatures. But as I grew to know them more, my nervousness disappeared as I found these beautiful horses to be so gentle, kind, and giving. The horses were offering an opportunity for my child to learn, become brave, and be more comfortable in her skin. They were allowing me to learn more about animals and how to care for them. They are so very patient with us as we get to know them more. I appreciate the kindness they give us each time we visit.”
Medium: Graphite drawing
Kindness Giving Art Angel
by Suzanne Mancuso and Katelynn Mancuso
“This is a joyful art angel the background is created by Katelynn who makes autistic abstract art in acrylics. The foreground is an acrylic overlay created by Suzanne. She guards the world and her values are kindness giving and love.”
Warmth
by Carol Taylor-Kearney
“This painting is based on a real-life photograph taken at a local fair’s Pet Show. Among the participants was this foundling, a very young kitten, and her rescuer. You can sense the devotion between the two, an exchange of warmth and kindness in giving.”
Medium: Oil on canvas
Snuggle
by Carol Taylor-Kearney
“This painting is based on a real-life photograph of two sisters readying for a nap. As the older sister snuggles her baby sister, and the baby sister snuggles her doll, we sense the gift of kindness that personal contact, a touch, a hug, brings to others and ourselves.”
Medium: Oil on canvas
Untitled
by R.M. Thejan Kovider Rathnayake
“Being kind to the poor and helpless animals by giving foods to fulfill their hunger.”
The Path
by Liz Nathan
“This piece is titled ‘The Path’. It’s a special place I’ve been to numerous times. I always think of nature as a powerful healing force. I think the image especially represents a serene and supportive environment. When you allow yourself the gift of calm reflection you are engaged in self-care and being kind to yourself.”
From Loss, Comes Hope.
by Kelly Brown
“My name is Kelly Brown and my son Matthew received a heart transplant when he was five, almost ten years ago. He is thriving with his new heart. We live in Virginia and we travel to Philadelphia quarterly for follow-up appointments with his transplant team. We always look forward to staying at Howie’s House. For the past ten years, Howie’s House has been our home-away-from-home. The wonderful staff and fellow guests have made our transplant journey much less stressful. Thank you, Gift of Life!
My painting depicts the transition from the darkness and pain of the loss of life to the brightness and hope of a second chance at life for the recipients.”
Moon and Stars
by Estelle Carraz-Bernabei
“Love you to the moon and back. Kindness through Giving. LOVE The universal language . We all need more love ❤️ moon and stars represents that LOVE is far and wide as big as the Moon and as far as the stars.”
Medium: Painting acrylic and oil
Orchid Variation 2
by Sandra Benhaim
My watercolor and charcoal on paper painting, Orchid Variation 2, is my entry for submission to the “Kindness through Giving” art contest/fundraiser. I’m offering and giving this visual still life representation of a spray of small orchid flowers as a hopefully uplifting gesture of kindness. I learned of the contest/fundraiser through my friend Carol Taylor-Kearney, who had the connection with Gift of Life Howie’s House when she underwent a kidney transplant.
Medium: Watercolor and charcoal on archival paper
Teddy my Love
by Alainna Swift
“This painting displays my desire to create a fun, cutesy, and comforting image. My piece is a multicolored, adorable teddy bear with wings! I am fond of many creative styles, and as of lately I have been interested in adorable images and products such as stuffed animals, pastel colors, and bejeweled things. I typically do not always create these kinds of things, so I wanted to fully dive in and express myself with my current cute interests. It has been freeing and comforting making the piece, and seeing its final result makes me smile. To me, teddy bears represent a gift of love. They are fondly regarded as a token of love, for any person or age. To receive a teddy bear, is to receive love. And for my submission, I choose to give to you the kindness and comfort that a teddy brings. I am connected to Gift of Life Howie’s House through my mother who is a two-time kidney transplant survivor, and dear family friends, Bill & Mary Corazo.”
Renaissance, Study #2
by Nancy St. John
“I began painting in 2020 while home waiting for a heart transplant. It was a fun creative distraction during the long days of COVID pre-transplant isolation. I have always had a great appreciation for beauty: in nature, in art, in my surroundings. Beauty brings me joy. It grounds me. When spending time in my garden became too much for me physically, my painting took on an even deeper meaning. It was a wonderful focus as I waited for the call for a new heart, a call that I wasn’t sure would ever come. In the Spring of 2022, still waiting for a heart, I stopped painting. I simply did not have the energy for it. This was especially difficult because the spring had been “me time,” time in the garden. Instead I was spending my days mostly on the couch, trying to focus on the beauty around me as I had no ability to create it on my own in the garden. And then, on July 6, 2023, 3 years after I began the journey, I received the call. A family had made the most unimaginable gift possible out of the most unimaginable tragedy. It was several months after transplant that I picked up a brush again. Like my walking, I started small. And like my walking, the momentum grew. This painting is titled Renaissance, Study #2. Renaissance as a recognition of rebirth, and #2 because of the new chance I was given to live as the result of receiving the most extraordinary gift of new life. Surreal, beauty and color are what I felt at the prospects of a second chance, and it is what poured out of me onto the canvas in Renaissance, Study #2. The colors and shapes represent my experience: the beauty of the gift I received, the incredible doctors and nurses who cared for me, the energy returning to my body and the joy returning to my soul. My work on canvas is similar to my beginning to live again. Learning as I go, appreciating every moment of joy and beauty that comes in both the challenges and the gifts that each day brings.”
Untitled
by Mia Corazo
“I believe that pets, especially dogs, show what kindness is all about. My dog gives unconditional love everyday. She doesn’t ask for promises or rewards. She knows when I’m feeling sad and comforts me without being told. She shows me kindness without hesitation. When she sits next to me and simply puts her head on my lap. I see love and kindness in her beautiful, caring eyes. It’s a feeling second to none. It’s a mixture of kindness and love. I’m very fortunate to have such a kind, caring friend.”
The Giving Angel
by Jamie Dacanay
“This original artwork done in acrylic and watercolor represents Kindness Through Giving by showing Isabella Maria who died at the young age of 18. Her parents chose to donate her organs, turning tragedy into a way to give back and save others. The butterfly represents new life. Her hands are extended outward as to give life to others. Her family and friends have often seen butterflies as a reminder and comfort, knowing that Isabella is all around us. She has angel wings. Family and friends will continue to walk each year in Isabella’s name for Gift of Life.”
Medium: Acrylic and watercolor
Circle of Life
by Maureen Bowie
“Life is represented as a circle because of its constant loop. Using abstraction as a form allows for the expression of a myriad of situations and energies. This painting “Circle of Life” represents family, friends, and the bonds we have tied with anyone who has entered one’s circle throughout life. The patterns and faded circles represent choices which have become the fabric of our lives. The rusted circle symbolizes the hardships and challenges one might endure yet remains, providing strength and unity through love, compassion and kindness.
My affiliation with Howie’s House started in 2011 shortly after the house was built. As a team my family started volunteering for the house’s Home Cook Heroes Program. It was through my nephew Kevin Spiers, an organ donor, that we made a connection with the house. Only 22 years of age when he passed, Kevin had a compassionate and abundantly giving and kind spirit. Each month our group (Team Spiers) plans and prepares a meal for family house guests. This enables us to celebrate Kevin’s Life and keep his spirit and memory alive. When we started doing this we had no idea of the grace it would provide us as well as the impact it would have on the community.”
A Ray of Hope
by Maureen Bowie
Hope is the thing with feathers
That perches in the soul,
And sings the tune without words,
And never stops at all…
“Kindness is akin to a beam of light, bringing hope and optimism in difficult times.
This 3 dimensional painting is made of wood. The bird is carved then decorated with wire and found objects to tell its own story.”
Acts of Kindness
by Maureen Bowie
“Fragile in nature, tender is the heart of the little bird that sings. Bringing joy, love and kindness to all who witness his presence. This 3 dimensional painting is made of wood. The bird is carved then decorated with wire and found objects to tell its own story.”
Untitled
by Lauren Bosco
“While a simple painting of a boat on the river at first glance doesn’t seem to fit the Kindness through giving, for my daughter nothing else could represent the theme more. This was painted by my daughter in honor of her late grandfather, a Gift of Life Donor. His eyes were donated to a farmer not to far from us. Not only did he leave this world showing one of the biggest kindnesses you can give, an organ, he share his love of the woods. Of fishing. Hunting. Nature. And through that active of kindness and sharing my children cherish nature in the most amazing ways. Picking up litter, feeding animals, sharing stories, planting flowers, painting pictures of my dad’s most cherished hobbies. “
When David Pierson became a donor family member in 2004 after losing his wife, he witnessed firsthand the compassionate work that is synonymous with the Gift of Life mission.
It wasn’t until he began serving on the governing board that he truly understood the full scope of what Gift of Life Donor Program and its affiliates accomplish. This experience also gave David greater insight into the services and care Gift of Life Howie’s House provides to transplant families. “Having been deeply involved with the organization, I witnessed the tremendous good that the House does,” he says.
Even after his board service concluded, David chose to remain close to the Gift of Life mission. He decided to include the House in his estate plans to help ensure that families will continue to benefit from the House for years to come.
“The House truly provides families with an opportunity to be together during challenging times. I am happy and proud to keep that going.”
Please join David Pierson as a member of the Legacy Society for Planned Giving.
We also invite those who have already included the House in their will or otherwise made a planned gift to inform us so we can celebrate your commitment. The story behind your generosity may also inspire others to take action.
You should consult with your tax advisor to determine the degree to which your gift may result in tax advantages to you, your estate, and your beneficiaries. The official registration and financial information of Transplant House d/b/a Gift of Life Howie’s House may be obtained from PA Dept. of State by calling toll free 1.800.732.0999. Registration does not imply endorsement.
Caregiver Lifeline Spotlight
Mia Moore, MSW
Social Worker
Gift of Life Howie’s House
During their transplant journey, many patients and caregivers experience financial stress. Chronic illness and transplants often provide little time for patients and their families to plan.
Causes of Financial Stress
Stress can often be defined as a state of worry or mental tension resulting from a challenging situation. It can impact your emotional and physical well-being in many ways, such as irritability or fatigue, and can potentially lead to anxiety or depression. With financial stress there is an emphasis on being in a state of worry or having mental or emotional strain because of issues such as budgeting, debt, or upcoming large expenses.
Many situations may arise that can cause financial stress during the transplant journey including reduced work hours or income, unexpected healthcare costs, increased travel or living expenses, lack of savings or
unforeseen emergencies.
Symptoms of Financial Stress
Symptoms of financial stress may look very similar to some reactions to your everyday stress or worries. However, due to this stress being a result of financial issues your symptoms have a direct impact on your feelings surrounding your finances. Some common symptoms are :
- Feelings of guilt when needing to spend money
- Difficulty falling or staying asleep
- Lack of joy for things that you used to like doing
- Isolating yourself from others or avoiding phone calls
- Hopelessness regarding the future
- Feelings of shame
Ways to Manage Financial Stress
Consult with your hospital social worker to identify transplant-specific
financial resources
- Reach out to your bank or loan companies for resources for those
experiencing financial issues - Create a new monthly budget based on your income and new expenses
- Tend to your physical and emotional health like you would for
other stressors. Talk about it with close family or friends, reach out
to support groups and networks, talk to a counselor
Transplant Resources
Transplant costs vary and it is common for patients to use multiple resources to help pay for unexpected costs.
If you have issues obtaining your medications, concerns about medical costs or future coverage, or the cost of medical equipment, reach out to your transplant or dialysis social worker. There may be region-specific or organ-specific grants that you or your loved one may be eligible for.
Fundraising is also a great resource for supporting costs related to lodging, travel, and other medical expenses. The following organizations can aid with getting started:
- Help Hope Live: helphopelive.org or Phone: 800-642-8399
- Children’s Organ Transplantation Association: cota.org
or Phone: 800-366-2682 *Specifically for children and young adults
Stress is a normal part of life and finances are a common stressor for many transplant patients and caregivers. If you have trouble navigating some of the resources listed above, please email:
caregiverlifeline@giftoflifehowieshouse.org
1 BetterUp, Financial stress: What’s money got to do with sanity?, 2021: betterup.com/blog/financial-stress
2 Health Direct, Financial stress and your health, 2023: healthdirect.gov.au/financial-stress
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
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.
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