Howie's House Blog
Future Business Leaders of America to Create Awareness and Support Transplant Families
Students of the Souderton Area High School Future Business Leaders of America (FBLA) recently hosted a bingo fundraiser to raise funds for Gift of Life Howie’s House as well as raise awareness for organ and tissue donation as part of their community service project.
The fundraiser involved several FBLA students including Jayme Barnett, whose father received a life-saving liver transplant in September 2016.
“The mission of Gift of Life is important to me, especially now since my father received a transplant that saved his life. My focus for this project was to be able to educate others on organ and tissue donor awareness and help the mission that has saved so many lives… I also wanted to support those who are going through the transplant process at the Howie’s House.”
On March 29, 2017, members of the FBLA proudly presented the $3,000 proceeds, which will benefit the Howie’s House’s Adopt-A-Family Program.
In addition, the FBLA group has established an Adopt-A-Blanket campaign where donations are collected to support materials to make blankets. With these supplies, students make warm, colorful fleece blankets for transplant patients and their families staying at the Howie’s House. To date, the group has distributed over 100 blankets to transplant families.
This project also served as their platform at the FBLA state leadership conference in Hershey, Pennsylvania in April, where the group placed 5th in the state for their community service project presentation.
Valerie Guerin has been thinking and praying about hearts for a very long time. When she was 20 weeks pregnant, Valerie and her husband, Mark, learned that their baby girl, Cora, was missing her entire left ventricle. The condition is known as Hypoplastic Left Heart Syndrome (HLHS).
From the moment she was born, Cora underwent multiple surgeries to enable her heart to pump enough oxygen-rich blood through her body to sustain her. Though she had a rough start in life, she thrived. She loved to run and go horseback riding, learned to play the piano, and was a wonderful big sister to her bother, Stephen, and sister, Amelie.
When Cora turned 10, it became harder for her to breathe and she was listed for a heart transplant. In spite of this, Cora continued to participate in an after-school club, Character Strides, which incorporates character building and life skills into a running program.
It was difficult for Cora to understand how she could compete in the club’s 3-mile race and still need a heart transplant. That summer Cora was in and out of the hospital and doctors were contemplating putting her on a ventricular assist device (VAD) to buy her time until a new heart became available. During that hospitalization, Cora received a heart transplant and miraculous second chance at life thanks to a charitable act by a donor family. Now 11, Cora received the gift of life nearly a year after she last ran. She’s looking forward to running again soon.
Valerie and her family live in Connecticut where she is a stay-at-home mom. She made the decision to stop working in order to devote herself to managing Cora’s care. Now the mother of three, she describes motherhood as, “The best job I’ve ever known, with three wonderful little employers and a great colleague.”
Though Cora’s heart transplant was successful, the process wasn’t easy. She endured setbacks that kept her in the hospital for over two months. Thankfully Cora’s siblings, and other family members, were able to stay close by at the Howie’s House.
“When Cora was well enough that Mark or I could leave her bedside, we got to spend time at the Howie’s House with Steve and Amee, which meant a lot to us,” says Valerie.
On January 11th, Cora was discharged to the Howie’s House. “I loved the proximity to the hospital of the Howie’s House and the fact that we could focus on Cora’s recovery there,” explains Valerie. “It was wonderful that I didn’t have to bring her to crowded public places. We appreciated the volunteers who came in to cook and those who allowed Cora to cook with them.”
Cora says she also enjoyed visits with the therapy dogs who regularly visit the Howie’s House while her own dog, Waggles, who she rescued, waited patiently for her to return home. She and Valerie also enjoyed getting haircuts from the stylist who visited the Howie’s House.
Adds Valerie, “The Howie’s House is a safe, comfortable place to recuperate and a really great transition to home. We went from the structure of hospitalization to the freedom to relax — when not running to appointments.”
Four weeks after Cora came to stay at the Howie’s House, she and her family got the good news that she could go home.
Mother and daughter have shared lots of hugs throughout the transplant journey. “I admire the way she’s always taking care of me,” says Cora.
Valerie’s wish for Mother’s Day: “That we can stay together as a family and not have to be separated again.”
Mother’s Day, May 14th, is just around the corner. To show your love this Mother’s Day, please consider making a gift to the Howie’s House. In return, we will mail our beautiful commemorative Mother’s Day card on your behalf to your special mother, spouse, sister, aunt, or friend. Learn more here: http://
By Talia Giordano, MSW, LSW Gift of Life Howie’s House Social Worker
Transplant caregivers are not only caregivers – they may also be a mom, dad, daughter, son, sibling, spouse, significant other, friend, peer, boss, coworker, etc. We all wear many hats in our lives – some of those roles may be long-lasting and some may come and go depending on our stage of life. Excelling at these many roles can be very gratifying and even enhance performance in those roles. However, multiple roles can also mean difficulty managing time, potentially disappointing someone or yourself, creating stress, and even feeling burnt-out. It is important to identify ways to manage each of our roles to avoid becoming overlystressed or burnt-out.
PRIORITIZE: Begin by writing down your different roles and important values and responsibilities within those roles. Think about which are most important and current. It’s helpful to be specific here. For instance, instead of writing family, write the specific roles within your family. Family may be very important to you, but your responsibilities related to each role may vary – example mom, son, or spouse. As you think meaningfully about your roles, you begin to identify the values you place within those roles, which can help to better prioritize and manage them
Example:
1. Spouse – spending [quality] time with my spouse, being an attentive and supportive spouse, feeling loved and providing love.
2. Caregiver – providing support and care to my spouse’s transplant needs such as transportation to appointments and medication help, encouraging them by being positive and bringing hope to my spouse.
3. Work/employee – accomplishing something important, feeling financially stable, helping people.
4. Parent – spending quality time with my adult child, providing support, feeling connected.
5. Friend – laughing with friends, having someone to listen, enjoying hobbies with someone.
PLAN: Plan ways to fit important tasks and responsibilities into your schedule and write them into your calendar. If being a spouse and spending time with your spouse is important to you, then plan on ways to spend time together doing meaningful things. At this time you can also begin to think about whether you want to integrate certain roles, or keep them separate from one another. Integrating or separating is completely up to you and what you feel works best. For example – does spending time with your spouse by going to a clinic appointment also count as “spouse time?”
REFLECT: Sometimes we spend time on tasks or responsibilities that are not meaningful to us. It is important to reflect on how you feel about the different roles you play and how you are managing them. After some reflection, you may realize some tasks should be prioritized higher than others. Some tasks may be integrated with others, while some may not. For instance, if you feel your role as a spouse is weakening because your role as a caregiver is strengthening, then you can begin to identify ways to try and separate the two – example: spending meaningful time with your spouse separate from your transplant-related care time together – going to a movie vs. visiting the doctor. Reflecting on this can help you understand where changes might be best made to better manage the many roles you have as well as reduce stress and improve your overall quality of life.
Looking for additional support or information? Please reach out to our social worker, Talia Giordano, at caregiverlifeline@giftoflifefamilyhouse.org or 267-546-9817.
The sweet smell of freshly baked goods straight out of the oven is something that makes a house feel like home. Whether it’s a crisp and delicious apple pie or warm chocolate chip cookies – most of us can remember a time when our mothers, grandmothers or someone we love made our favorite treat at home. One Home Cook Hero volunteer baking group makes sure that the Howie’s House is filled with these delectable indulgences for families to enjoy at their “home away from home.”
The “Four Ladies and Friends” started baking for the guests at the Howie’s House over a year and a half ago. Sandy Kelly, a retired nurse of 30 years and founder of the group, heard about the Howie’s House after attending a conference at Gift of Life Donor Program. She and three of her friends wanted to honor their friend’s son, who tragically passed away and selflessly donated his organs to save others. What was once four ladies has now grown into a group of people who are eager to help. “We started out as the Four Ladies. Now we call ourselves the Four Ladies and Friends because we have all kinds of people who want to contribute,” explains Sandy, “we were connected because of my girlfriend’s son. It really hit home to help here.”
Sandy and her husband have stayed at similar hospitality houses like the Howie’s House when her husband needed to receive care.
“To me, it’s really important. You know a lot of people who are really sick, and they need a place like the Howie’s House.”
As Home Cook Hero volunteers, the Four Ladies and Friends bake a variety of sweets that are irresistible. You name it – the group can bake it. Guests enjoy their pies, cupcakes, brownies, scones and a variety of different cookies. During the holidays, families also help themselves to themed baked goods, such as Halloween cupcakes, Valentine’s Day cookies, St. Patty’s Day donuts and much more! “My step-daughter helps us schedule a time to visit and also bakes. Some of my grandchildren get involved too. We like to volunteer together – it’s really become a family thing,” said Sandy.
When asked of her fondest memories as a volunteer, Sandy said, “The most memorable moment for me was when an elderly woman and her husband, who were staying at the Howie’s House for many months, turned to me and said ‘I’m so impressed with it here – the doctors come in and cooked for us! My husband’s doctor who did his transplant came and cooked!’ You can tell people are so thankful for the Howie’s House.” The woman was referring to her husband’s transplant team who also signed up to be Home Cook Hero volunteers.
One of the many reasons the Home Cook Heroes program is so important to guests is because they can connect with others on a more personal level. Part of what makes Gift of Life Howie’s House a “home away from home” are volunteers like the Four Ladies and Friends who generously dedicate their time, talents and resources to serving families. Whether it’s baked goods or a home cooked meal, Home Cook Heroes volunteers ensure transplant patients and their families have a little taste of home while they stay at the Howie’s House. If you’re interested in becoming a Home Cook Hero, please click here.
Merida Bourjolly and her 16-year-old daughter, Yani Barrow, are two peas in a pod. They both laugh easily and are often told they look and sound alike. They have been through many difficult moments during the past three years as Merida underwent kidney dialysis and then transplant. And yet they remain upbeat and inspire those around them.
Though Merida was born with two healthy kidneys, at three weeks old she developed a kidney infection and her left kidney had to be removed. Three years ago, during a routine doctor visit, she was told that her right kidney was failing. Not long after, she was listed for a kidney transplant. Merida received the gift of life in early December.
Merida’s laugh and smile helped Yani throughout their ordeal. “She has positive energy around her,” says Yani. “I want to be around people like my mom. I try to take her positivity with me to school.”
Merida credits the Howie’s House with helping her maintain her optimistic outlook.
“I felt no negativity there, nothing but encouragement to feel better and to get well. There’s so much love that you experience from the staff, from volunteers who come to cook for us, and those who shuttle us to the hospital.”
Merida continues, “You can’t help but feel happy during your stay. I was never scared or felt like I was far from home — particularly due to the staff. They went out of their way to make us comfortable,” adds Merida. “They were an important part of my care, recovery and well being.”
Yani is studying ballet and modern dance at the prestigious Frank Sinatra School of the Arts High School in New York City. Merida is a cosmetologist and has her own salon where she encourages her clients to pursue a healthy lifestyle. She continued to work three days a week while undergoing dialysis. Merida and Yani would leave their home in Queens at 5:30 in the morning so that Yani could catch a bus and two trains to school and Merida could make it to dialysis early and be home to help Yani with her homework. During Yani’s school breaks, she went with Merida to dialysis so she could see firsthand what her mother was going through.
Merida coped with cold extremities, pain, and cramping brought on by many hours of dialysis, which she needed to stay alive while she waited for a kidney to become available. Regardless of her discomfort, she went to all of Yani’s dance recitals and school meetings.
Yani explains, “God blessed my mother to have this positivity. When I had a show or a meeting, and her muscles were cramping and her body was hurting because of dialysis, instead of her saying ‘No, I don’t feel good,’ she’d always say, ‘I’ll be there.’” In 2015, during her sophomore year, Yani asked Merida if she could be in a pageant. She thought it would help build her confidence. Merida agreed. Yani competed first at the state level in the Miss New York Junior Teen pageant, where she was among the top 10 finalists, first runner-up for talent, and second runner-up for modeling. Her success qualified her to go to the National American Miss pageant in California, where she also did well. These were remarkable achievements, especially since she was new to such competitions. Merida arranged to get dialysis while she was in California, so she could be there to coach Yani and do her hair and makeup.
“I couldn’t have done it without her. She’s a really strong woman. I can’t believe how strong she is.” says Yani.
Merida stayed at the Howie’s House for two months while she was recovering from transplant surgery, with family members coming in from as far as Haiti to be at her side. She credits the healing environment there for her peace of mind. “It allowed me to not have to think of the things that I would have to think of if I was home. It allowed me the comfort of being able to go to the hospital using the shuttle services. The shuttle drivers wanted to know how I was feeling. The social worker wanted to know how I was feeling. The staff really looks out for you and your needs.”
“Staying at the Howie’s House also allowed me to grow spiritually. I experienced a lot of things that I wouldn’t have gotten the chance to otherwise, like hearing the stories of the people who volunteer there and why they come there to give back.” “I’ve made so many friends at the Howie’s House, people I would not have otherwise been able to get to know or to hear their stories. That was huge for me. Finding out about their transplants and how it affected them and their families. It really was a growing experience for me to be there.”
The affordability of the Howie’s House also provided peace of mind for Merida, a single mother. “It was very important to me, knowing that I’m self-employed and was going to have to stop working during my recovery process. Not having to stay in a hotel was really major for me. Then to find out how affordable the Howie’s House made it for us was really a blessing to our family.”
Have you ever wondered how the people and charities you care about will fair when you are no longer here to help them? A good way to make certain that your values live on is by writing down what’s important to you. Another is by making provisions in your estate plan to ensure your charitable support continues. By including the Howie’s House in your will/bequest you can help to ensure that the Howie’s House is able to maintain their affordable fees and broad array of services for all who need support— now and in the future. It is an easy and simple way that you can support the future of the Howie’s House, and continue care for transplant patients and families. Bequests can be a percentage of the remainder of your estate or a specific dollar amount. If you already have prepared a will, you can simply add a codicil amending it to include the Howie’s House.
IS YOUR WILL DUE FOR AN UPDATE? Here are a few reasons that individuals or couples may need to update their will:
- A change in marital status
- The birth or adoption of a child or grandchild
- The death of an individual included in your will
- Retirement or relocation to another state
- A change in assets
- The start of a new business
- New tax laws
ALREADY INCLUDED THE FAMILY HOUSE IN YOUR WILL? Let us know so we can celebrate with you now! Enjoy recognition today as a Legacy Society member. Donors who notify us that they have made arrangements for planned gifts will be recognized as members of our prestigious Legacy Society. Visit www.GiftofLifeFamilyHouse.org for more information.
TO DISCUSS MAKING A PLANNED GIFT TO GIFT OF LIFE FAMILY HOUSE OR IF YOU HAVE ALREADY NAMED US IN YOUR WILL, please contact Sara Cohen, Development Manager at 267-546-9812 or email scohen@giftoflifefamilyhouse.org.
Please consult your attorney, tax advisor or financial advisor before making a bequest or updating your estate plan.
Support the Adopt-A-Family Program. Consider making a tax-deductible gift to the Adopt-A-Family Program – each $40 contribution helps support one night of lodging for a family staying at the Howie’s House who cannot afford the nightly fee. You can contribute to sponsor one night, two nights, a weekend or more. Gifts of any level are meaningful.
Host an Event! From golf outings to intimate dinners in your home, there are countless ways you, your family, and friends can fundraise for the Howie’s House. Fundraising events are also a great way to reconnect with family and friends and remember or celebrate a loved one while supporting our important mission.
Become a Home Cook Hero! Groups of up to 10 people can provide, prepare (on or off-site) and serve a meal to guests staying at the Howie’s House. Enjoy cooking in our fully equipped kitchen as well as seeing the impact of your service on our families first-hand.
Host a Wish List Drive! Keeping the Howie’s House stocked with basic home necessities – such as food, toiletries, and pantry items – requires a lot of donated items. This is an excellent activity to involve your family, company, religious group, or friends. You can also collect grocery store gift cards to keep our refrigerators stocked with the things we run out of most – milk, eggs, and butter! The Howie’s House is also in need of gas cards to keep our free shuttle service operational – transporting patients and families to and from local hospitals each day.
Join the Legacy Society for Planned Giving. By making a “planned gift” – a gift through your estate – you can ensure the future success of Gift of Life Howie’s House and have the satisfaction of knowing that your values will live on through the loving care we provide.
Be a Corporate Partner. Through volunteerism, sponsorship, grants and program support, hundreds of corporations have partnered with Gift of Life Howie’s House to support transplant patients and their families. In return, corporations receive unique recognition, brand visibility through our various communications tools and social media platforms as well opportunities for employee team building events and ways to engage and reconnect with clients. If your business or corporation is interested in supporting programs or other initiatives at Gift of Life Howie’s House, we would be happy to help create a mutually beneficial partnership.
The Gift of Life Howie’s House rounds out a ‘circle of care’ for transplant patients and families
Our ‘home away from home’ has helped thousands find peace of mind and hope.
‘Where does a polar bear keep his money?” teases 5-year-old Amelia Torgersen to our reception desk staff who have been eagerly awaiting her arrival. “In the snow bank,” she answers and giggles.
Every time Amelia comes running into the Gift of Life Howie’s House with her parents, Bonnie and Brian, she immediately looks for the smiling faces she has come to know and trust. She brings her latest stuffed “friend” and asks that it be given a yellow wristband ID, just like hers.
It’s hard to believe that bouncy, fun-loving Amelia had a liver transplant just nine months ago, or that she is now undergoing chemotherapy for PTLD (Post-Transplant Lymphoproliferative Disorder), a complication that can occur after transplant. Amelia has struggled since birth with Alagille syndrome, a rare genetic disorder characterized by abnormalities to the bile ducts that harm the liver and can affect other parts of the body. The genetic defect that causes Alagille can be inherited, or occur randomly.
Amelia had heart and kidney surgeries, even before her liver started to fail. At that point, the Torgersens relocated from their home in Nashville, Tenn. through Brian’s employer — first to Florida and then to Pittsburgh. They wanted to be as close as possible to The Children’s Hospital of Philadelphia and its renowned Alagille Syndrome Clinical Care Program, and for her transplant surgery.
Not one to complain, Amelia now bravely faces too many ‘ouchies’ during chemotherapy, but looks forward to staying at the Gift of Life Howie’s House where our staff make her feel special.
Five years of caring
On July 11th, Gift of Life Howie’s House celebrated its fifth year of serving transplant patients and their families receiving care at one of the eight transplant centers in Greater Philadelphia. In this short time, we have served more than 1,300 transplant families, many of whom have stayed with us several times over the course of their loved one’s care. In total, we’ve provided over 33,000 room nights of comfort.
“At first, we didn’t know if it was going to work,” says founder and CEO, Howard Nathan, reflecting back on the leap of faith that brought together benefactors, board members, health care providers, government agencies, and other supporters to help build a “house” for patients and families going through the transplant process.
Today, the success of the Gift of Life Howie’s House is evident. “I ask almost every day about occupancy. It makes me proud when 28 out of our 30 rooms are filled. It reminds me that we did the right thing, that the need that’s desperately there is being met.
“I think what sets us apart is our staff members who are there, available, and who care 24/7,” notes Howard. “I think that families understand that and are touched by it.”
The Torgersens agree. When Amelia came to stay at the House after her liver transplant in December, she was drawn to the kid-size Adirondack chairs on our patio. But because it was cold and snowy, she couldn’t sit outside. When they came to stay in the spring, Amelia’s first thought was to run outside to sit in ‘her’ chair, but the chairs weren’t there, explains Brian. “So we go inside to Diana Elbanna (resident manager) and Amelia says, ‘Miss Diana, where are the little tiny girl chairs?’ And Diana says, ‘They’re not out there?’ So there was this brief commotion over the chairs. The next week, guess what, the little tiny girl chairs were there.”
Adds Bonnie, “Even on the days that are difficult for Amelia, she talks about sitting in ‘her’ chair. And so the patio is somewhere we can go with her at the end of the day where she has a little time to sit in her chair and just relax and refuel for the next day.”
Whether it’s having access to a fully stocked pantry and tasty leftovers if they miss the evening meal, or toiletries they forgot to pack, the Gift of Life Howie’s House is a safe and comforting haven for them. “We don’t lack for anything there,” says Bonnie.
Rounding out a ‘circle of care’
A ‘circle of care’ for transplant patients and families begins when a person with end-stage organ failure is listed for transplant. The list is national and Gift of Life Donor Program works with its partners around the country to find willing donor families and viable organs.
“The reality is that the number of people who can donate is very small. Only about 1 to 2 percent of all of the people who pass away can be considered as potential organ donors,” explains Howard, who has been with Gift of Life Donor Program since 1978 and is its President and CEO. “In our region, out of about 40,000 people who die each year in the 129 hospitals we serve, there are only approximately 800 who could be potential organ donors. That’s why there’s a shortage. It’s not because people are unwilling. It’s because the number who are medically suitable is very small.
“This year we’ll have over 500 organ donors and more than 1,300 people receiving transplants in our region. That doesn’t sound like a big number, but it’s the largest anywhere in the United States, probably the world, for any one region.”
Gift of Life Donor Program is responsible for working with the transplant teams to preserve the organs and safely transport them to waiting surgeons, patients, and families. The Gift of Life Howie’s House takes care of families while their loved ones are waiting to be transplanted, during recovery, and throughout post-transplant care. While other transplant houses typically serve one transplant center, the Howie’s House serves all eight centers in its vicinity. “That’s pretty unique, and I’m very proud of that,” says Howard.
In addition to affordable lodging, home-cooked meals, and transportation, the Gift of Life Howie’s House also provides education, counseling, and emotional support through its Caregiver Lifeline Program. The first of its kind, this program provides a supportive network and educational services specifically tailored to the needs of organ transplant patients, family members and caregivers — those staying at the House as well as those living in the broader community.
For the Torgersens, the House is a “tool in a toolbox” to make life easier. “When you’re at that point of fear and anxiety — things that come with the unknown — there’s somebody that’s got your back. It doesn’t make anybody’s individual situation better, their difficulties are going to be just as challenging, but to know somebody’s got your back is meaningful.” explains Brian.
Making every day count
When traveling down the long and winding road of caring for a chronically ill loved one, it is easy to lose focus on the everyday things that give life meaning.
“We had to work very hard to give Amelia what we feel is the best quality of life: That is, to step away from the clinical side of things and remember that she’s a little girl — and take her to the beach, take her to Disney, take her to the park. Sometimes with the medical side of things, you almost want to put life on hold — until transplant, or until she’s done with chemo, or things like that,” explains Bonnie.
For Amelia’s fifth birthday, at her request, the family went camping. When the weather turned warm, they packed Amelia’s medical gear, along with their camping gear, and headed out to Allegheny National Forest. “Amelia is definitely an outdoor girl,” laughs Bonnie. “We gave her a choice of going out on a boat or hiking. She picked hiking. She had a little walking stick. She kept saying, ‘I’m the leader, follow the leader.’ She loves to explore. She enjoyed studying the rocks, the different leaves, and trees. That’s her happy place.”
Adds Brian: “She doesn’t understand life. As far as she knows, it’s kind of rough, because it’s always been rough. But she’s a fun, loving spirit that when you’re around her you just smile. And you don’t do it because she said something funny; you do it because she’s this sweet, beautiful thing.”
Although they have health insurance, the Torgersens have faced substantial out-of-pocket costs, since Amelia’s birth, for medications, medical supplies, formula for her tube feedings, and travel to and from Philadelphia. “By the time you put all of the pieces together, it’s a costly process,” says Brian.
Securing the Howie’s House’s future
“Each year, we have to raise about $1.7 to $1.8 million dollars just to keep the doors open,” notes Howard. Driving the need for funds is the Gift of Life Howie’s House’s commitment to maintaining a low nightly rate of $40 even though the actual cost for providing all of the included services is $165 per room per night. Each room accommodates up to four people. Families who can’t afford the nightly fee are given subsidies. “We don’t turn anyone away because of their inability to pay,” adds Howard.
The House depends on charitable contributions, large and small, to make this possible. “Last year we had over 2,300 individuals or organizations give us charitable contributions. I wish I could name them all. We’ve even had grade school kids hold fundraisers and collect money at school. Businesses will do dress-down days and collect $5 from everybody wearing blue jeans. Those combined gifts of $200, $300, they help.”
The Gift of Life Howie’s House works, adds Howard, because of neighbors helping neighbors, whether through charitable contributions or by volunteering.
“Every time I walk through the door at the House, it really makes me proud of our team, of the families who are courageous in going through transplantation, and our volunteers. When I meet our Home Cook Heroes — many of whom are transplant families — and our other volunteers, I am truly grateful. We simply couldn’t do it without them.”
To make a charitable gift to the Gift of Life Howie’s House, or to volunteer, please use the enclosed envelope or visit us online at www.GiftofLifeFamilyHouse.org.
Stay tuned over the next few months as Gift of Life Howie’s House unveils a special way that you, your family and friends can celebrate 5 years of the House!
“We are indescribably grateful for the Howie’s House and how positively it has affected the outcome of our situation. Without the Howie’s House, it would have been very difficult for Ash to be with me every single day, both financially and logistically. Without her unyielding emotional support and care, I wouldn’t be as well off as I am today. Guaranteed. And without the support and the positive environment of the Howie’s House, Ash wouldn’t have been as available and emotionally present for me. The Howie’s House truly is a ‘home away from home’!” – Bobby Adams
On March 20, 2015, Bobby and Ashley Adams of Bordentown, NJ were newly married and Bobby had just received his precious gift of life, a double lung transplant. Yet there were many events that led to these miraculous events.
Bobby Adams grew up with the privilege of enjoying a healthy, care-free lifestyle. He had always enjoyed doing things outdoors, such as camping, hiking, snowboarding, and mountain biking. In January of 2015, that came to an abrupt and unexpected halt. Bobby started feeling very sick and, with symptoms only worsening, Ashley took him to the local emergency room. Neither of them had any idea that Bobby would be hospitalized for the next three and a half months – the majority of which were in critical condition.
When Bobby was first admitted to the hospital, he was quickly intubated and placed on a ventilator for life support. His lungs were failing, fast. The cause of his lung failure was unexpected.
After being diagnosed with Acute Interstitial Pneumonia and ARDS, Bobby was placed on ECMO, an additional type of life support, which oxygenates the blood. He was then placed into a drug-induced coma while doctors worked around the clock to try to save his life. While in this coma, doctors broke the news to Ashley that Bobby’s only chance at survival would be to receive a double lung transplant.
Ashley felt like she was living a nightmare. Nothing felt real. Within a few days of being informed about the need for Bobby to receive a transplant, a social worker at the hospital told her about Gift of Life Howie’s House. She didn’t know much about the Howie’s House at the time, but she knew she was grateful to not have to pay thousands of dollars for a hotel room in the city with her mom, or sleep on a friend’s couch anymore. The Howie’s House was a very affordable alternative. What she quickly learned, however, is that besides not having to worry about the expense of lodging, the Howie’s House also provided her with hot meals, cooked by people who really wanted to help, rides to and from the hospital, and the opportunity to meet some amazing people who understood the frightening reality of what Ashley was dealing with; including House guests, volunteers, and staff.
The 2015 Gift of Life Howie’s House President’s Reception took place the same day that Bobby was listed for a lung transplant. At that time, Ashley and her mom were in attendance at the reception as Howie’s House guests. For this year’s President’s Reception – honoring the Founders’ Circle and 2015 Family Circle members – Ashley and Bobby were invited back to the house – not only to share their incredible story with event attendees, but also to celebrate their one year wedding anniversary and Bobby’s first ‘Transplant-a-versary’. They were honored to be there with some of the most generous supporters of the Howie’s House and to share the miraculous conclusion of their incredible transplant journey.
Just two days after being listed for a transplant, Ashley and Bobby decided to get married right then and there, bedside in the hospital ICU. Moments before their wedding ceremony, doctors came in to the room to give them the incredible news: they had a prospective donor for Bobby! After everything that had happened in the months leading up to this point, for two such miraculous things to happen in one day seemed to Ashley a sign that everything would be okay after all.
Ashley and Bobby couldn’t have been happier on that particular day in March of 2015. Within a few days, Bobby had a new bride, new lungs, a new life. Bobby is now back to work, grateful for a little more normalcy and enjoying many of the things he still loves to do. All the while, the newlyweds are incredibly grateful for Bobby’s donor and his family for making the selfless decision to choose organ donation, which allowed for Bobby’s life-saving transplant. And the couple is also indescribably grateful for the Howie’s House and how it positively affected the outcome of their situation – and which is only made possible by all of its wonderful supporters, especially its generous Founders’ and Family Circle members.
A New Definition of “High School Sweetheart”
“I look forward to that time when I can come back here for dinner and sit with my new friends that I have made. I don’t know how I would have made it through these past three months without this place…” – MaryAnn Finlay
Their love story started in high school art history class and continued 30 years later when MaryAnn discovered Joe needed a lung transplant to survive.
After dating on and off in high school, Joe Finlay was called away for his work in the United States Army. Life intervened and sent MaryAnn and Joe in different directions. Besides the occasional phone call, they lead very separate lives with their individual work and family.
Fast forward 30 years, MaryAnn, living in New Jersey, had a dream where she saw Joe with an oxygen hose in his nose. She decided to call Joe, who was living in Virginia at the time, only to find that Joe really was sick. He had been diagnosed with Pulmonary Fibrosis, an incurable disease.
“I told Mary that she was not going to have much of a future with me—the doctors told me I only had two years to live,” said Joe.
After talking daily, they decided together, “No more missed chances, and no more regrets. Life is too short. Nobody knows what is going to happen today or even tomorrow.”
They were married that same year. “We said no more wasting time. We are soul mates.”
After the couple married, Joe‘s condition worsened and in 2013 he was diagnosed with a bacterial pneumonia. He also had developed bladder cancer—meaning he had to wait an additional two years before being placed on the waiting list for a transplant. And as those two years progressed, the worse his condition became.
The couple eventually traveled to Philadelphia for preliminary transplant testing. They were thankful to be able to stay at Gift of Life Howie’s House during those long two weeks of testing –and MaryAnn especially appreciated that she could be by her husband’s side to care for all his needs. “He was very bad at that point where every five minutes I was running to him with an emergency breathing bag.” MaryAnn explains.
Acting as the permanent caregiver to her husband, MaryAnn says, “It is important to know that the pain and suffering that the caregiver goes through is just as bad as the pain and suffering that the patient goes through. Even though we are not going through the physical aspect, it’s the emotional aspect—that when I see this man who was so strong and could do everything, is now deteriorated to where he cannot even pull the covers over his shoulders. I would just cry myself to sleep.”
After Joe and MaryAnn returned home from Philadelphia for that initial testing, Joe’s conditioned declined drastically. MaryAnn rushed Joe to their local hospital and quickly learned that, other than hospice, there was nothing that they could do. So MaryAnn drove Joe back to the hospital in Philadelphia, where he was admitted immediately. He would not leave the hospital until he had his transplant.
Joe received his gift of life, a lung transplant, just two weeks later on March 4th 2016. MaryAnn was able to be by his side at the hospital every single day, thanks to her “home away from home” at the Howie’s House.
“It is a hard journey for all transplant patients—it’s painful and it’s hard. And if I can stress enough—they must have a support system. I was there [at the hospital] every single day. My focus was on Joe and getting him through this hard time,” explains MaryAnn.
Although Joe’s memory is a bit cloudy from his post-transplant complications, he remembers MaryAnn and her smiling face every day while he was in the hospital. Joe says “She came every day. I told her, keep bringing that beautiful smile and everything will be alright. And she did.” He remained at the hospital for two months following his transplant.
During those long months while Joe was hospitalized, MaryAnn found comfort at Gift of Life Howie’s House. “I don’t know how I would have made it through without that place. I would take the shuttle every morning, be there from 8 o’clock to 4 o’clock at night, come back and eat my dinner.”
MaryAnn recounts how when she first arrived she would sit alone in the dining room decompressing from a long day at the hospital. However, as the weeks turned to months, she started making friends with all her fellow guests. “We would all join together and tell each other stories of what was happening with our family members. Sometimes we would cry together. I met wonderful friends here! I started to look forward to that time when I could come here at dinner and sit with my new friends that I have made here. I wouldn’t want to stay anywhere else.”
In May of 2016, MaryAnn and Joe Finlay were finally able to return home to New Jersey. They say this experience has made them even stronger – as individuals, and as a couple.
Are you – or someone you know – in need of resources specific to caregivers of transplant patients, like MaryAnn? Visit our Caregiver Lifeline page for more information to help guide you and your loved ones through the transplant journey. Or check out our new Transplant Caregiver Support Group on Facebook by clicking here
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