Howie's House Blog
For New Jersey natives, Maggi and George, their life turned upside down 7 years ago when Maggi was diagnosed with Idiopathic Pulmonary Fibrosis after a respiratory flare-up she had while snorkeling in Aruba. They were told that the disease was progressive, had no known cure, and would cause permanent damage in her lungs as time went on.
This news was a huge blow to the couple, who had just a year and half before and many of their favorite activities like snorkeling, kayaking, traveling, golfing, and hiking now seemed impossible.
For the next 7 years, Maggi would have to carry oxygen everywhere she went, go to check ups every 6 months, attend pulmonary rehab sessions, and prioritize living a healthy lifestyle in the case she would need a transplant. Despite all the challenges, Maggi and George remained positive and didn’t let her disease define their life. “I bought a mobile oxygen tank and we used it go everywhere… We traveled all over Italy and France, and even went on a cruise to Alaska. I was going to keep living my life.” says Maggi.
Maggi also was dedicated to staying up to date on the science around her disease and would participate in studies to help further the development of a cure. Maggi, who is one of 14 siblings, also has an especially unique case, as the disease runs in her family. She has two siblings who have been diagnosed with the disease and two more who could have had it but died before they could be diagnosed.
“I wanted to be on the forefront of what science was doing because science was moving fast,” she says. “My journey was to have an outcome that would save my life, whether it be getting a transplant or finding a cure.”
Maggi and George stayed at the Gift of Life Howie’s House for the first time back in 2018 during a pre-transplant appointment. Maggi heard about us through her Pulmonary Fibrosis support group which she co-leads with another Gift of Life Howie’s House guest.
Little did they know the impact the House would make on their transplant journey.
Even though Maggi was optimistic in the development of a cure, her condition was getting worse the longer she waited. So, in the spring of 2020, right in the heat of the pandemic, both her and her doctors decided it was time to start the process of getting on the transplant waiting list.
Within two months and after several evaluations, she was added to the waiting list for a lung transplant. Two months later, Maggi got the call that her lungs were ready.
Maggi and George both knew they would have to stay in Philadelphia for an extended period of time post-transplant, and they found comfort in knowing they had a safe place to call home while she recovered.
Maggi’s surgery went off without a hitch and she was out of the hospital in just 12 days, which is much shorter than the usual post-transplant stay. While Maggi was still in the hospital, George stayed at the Gift of Life Howie’s House and was able to visit her while she regained her strength.
Maggi has now joined George at the House and will stay here while she continues the rest of her recovery. They have made themselves at home here, and appreciate all the amenities we offer, especially during the pandemic. “The House provides you with everything that somebody would need… and it’s immaculately clean, you just have such a sense of safety here because you know that things are being taken care of,” says Maggi.
Maggi says that one of her favorite parts is that, despite the visitor restrictions, the couple were still allowed to visit with Maggi’s daughter, son-in-law, and two of their grandkids outside on our patio. George and Maggi have three kids and four grandkids between the two of them and enjoy keeping in touch by weekly Facetime and Zoom calls.
George, as Maggi’s primary caregiver, enjoys cooking and can often be found preparing meals for the two of them in our kitchen. During the pandemic and while caring for Maggi, he has had to continue to run his mechanical contracting business and has been using our library as an office. “It’s beyond comfortable here. The fact that I can walk 12 steps to the library and do my work in the morning makes things easy,” says George.
George also has taken advantage of our Caregiver Lifeline Program by attending our support groups and referring to the resources available on our website. Overall, they both say that the best part about the Howie’s House is the people they have met here.
“There is a comradery here because you meet and make friends with other families while you’re eating dinner that are going through the same situations,” says Maggi. “There is such a diversity of people you meet here, you really get to hear all different types of stories” adds George.
Maggi, an avid kayaker, says she is the most excited to get back to kayaking post-transplant. The couple are both looking forward to golfing and traveling again, and have plans to travel to Spain, Ireland, Portugal and Scotland as soon as the pandemic is over. Most of all, the couple is looking forward to spending more time with family, getting home to their house in New Jersey and enjoying many more adventures together, which is all made possible by the generous donor who gave Maggi a new lease on life.
| About the Gift of Life Howie’s House Gift of Life Howie’s House serves as a “home away from home” for transplant patients and their families by providing temporary, affordable lodging, and supportive services to those who travel to Philadelphia, Pennsylvania for transplant-related care. Click here for information on ways to support the mission of Gift of Life Howie’s House. |
From a young age, Kirby was always active. Born in Memphis and raised in Mountain Lakes, New Jersey, she participated in many sports including dance, gymnastics, figure skating, track and field, diving, rowing and cheerleading. Kirby accomplished a dream of hers by qualifying for the 84’ Olympic trials for gymnastics, something she had been training for since the age of 10.
However, Kirby began experiencing health complications which forced her to spend less time participating in the activities she loved. She even had to stop working. Kirby eventually found out she would need a life-saving kidney-liver transplant to survive.
Kirby and her husband Scott packed up and traveled from their home in New Jersey to Philadelphia to receive treatment at Einstein Hospital. She was admitted on June 3rd, her birthday, and was quickly put on the transplant list. She and Scott were hopeful that there she would receive her life-saving gift and the help they were both searching for.
While Kirby was hospitalized, Scott stayed at the Gift of Life Howie’s House, which was recommended to him by his transplant social worker. Kirby soon received her precious gift of life. After a successful surgery, Kirby remained at the hospital for one month after her procedure and then joined Scott at the House for a total of six weeks.
“The staff members at the Gift of Life Howie’s House were always, happy, smiling and cheerful,” Kirby says. “When I arrived tried and weak in me wheelchair, they already knew my name and had everything I needed ready. It was peaceful, no beeping sounds from monitors and no unscheduled nurse visits at all hours of the day. I felt like I could exhale. I felt like I was home.”
Scott and Kirby loved the comfort of the House and the tremendous support they received. Scott would often attend the support groups hosted by the Gift of Life Howie’s House’s social workers. “If Scott was in a hotel, he would have spiraled,” Kirby explains. “We were so grateful for the love and support from the House and other transplant families.”
Additionally, Scott and Kirby loved the convenience of home-cooked meals prepared every night by Gift of Life Howie’s House volunteers and engaging with other families that were also going through the transplant process.
Kirby loved that conversation at the House was so open. “There was never a need to feel embarrassed because everyone staying at the House had experienced something similar,” she shares.
At the House, Kirby was able to work on her physical therapy exercise in the fitness center. She was also encouraged to continue her occupational therapy on her journey back to normalcy. When it came time for Scott and Kirby to pack up their bags and head home, there was a moment of sadness; it was hard to leave.
“Everything happened so quickly,” Kirby says. “The Gift of Lift Howie’s House has been there for us on our journey, during and afterwards,” Scott explains.
Kirby and Scott still to this day share bonds with many of the families they met at the House. They look forward to returning to see familiar faces when visiting for follow up transplant appointments and feeling the sense of community the Gift of Life Howie’s House provides. We look forward to seeing Scott and Kirby for their next visit here with us!
Ashley and Bobby were busy planning their wedding when Bobby became ill and required a double lung transplant. Quickly their lives were turned upside down. Ashley became a caregiver at just 27 and has learned how to manage the new life transplant brings.
How did your transplant caregiving journey begin?
I became a caregiver to my husband who unexpectedly fell ill and received the amazing gift of life—a double lung transplant. His five year transplant anniversary will be on 3/20/20, which is also our wedding anniversary. We were married in the hospital just before his surgery.
What has been challenging for you?
Learning to best manage a life that others are not accustomed to has been the most challenging. While spending time with family and friends is so important to us, we have to be careful around those who are ill because the effects could be devastating to Bobby. Despite the challenges of this new life, it’s ALL worth it because someone made a selfless decision to save someone else’s life through organ donation. My husband is here because of that decision.
What would you say to a caregiver new to the transplant journey?
Work hard for your loved one and advocate for them when they can’t. And don’t forget to advocate for yourself, because you are just as important! Not all of your loved ones will understand what you’re going through, and that’s okay! Make sure you use your resources to find the support you need, including online or in-person support groups, a therapist, or spending more time with those you feel most supported by. And don’t forget to keep up on your own personal hobbies. They can do wonders for your spirit and perseverance!
The Caregiver Lifeline Program is supported in part by TD Charitable Foundation and Bridge to Life. We are thankful for their partnership and generosity.
The Independent Order of Odd Fellows New Jersey (IOOFNJ) has been a longtime supporter of the Howie’s House mission.
Former grandmaster, late heart transplant recipient and wonderful friend Harold Delhagen connected our two missions many years ago, and since, IOOFNJ has made a real difference in the lives of transplant families.
They supported our initial capital campaign to help build the Howie’s House and open our doors by underwriting one of our guest rooms. They’ve helped transplant families who couldn’t afford our nightly fee with a contribution to our Adopt-A-Family program. Additionally, IOOFNJ has volunteered on many occasions in our kitchen to provide warm, home-cooked meals to our guests in the evenings as part of our Home Cook Heroes program.
Most recently, they generously committed to a multi-year sponsorship of our shuttle program to help bring transplant patients and their family members back and forth from Philadelphia hospitals and the Howie’s House.
This contribution to our mission helps provide a much-needed service to our guests so they don’t have to navigate an unfamiliar city alone or pay expensive parking fees while caring for a loved one undergoing the transplant process.
In 2019 alone, their support helped us travel over 16,000 miles to provide more than 1,100 trips to and from Philadelphia hospitals and the Howie’s House!
IOOFNJ is an organization based on the foundations of Friendship, Love and Truth, and seeks to make our world a better one to live in through charitable work on various projects in their community.
We are so grateful for their support and look forward to serving transplant families with them in the future!
Theresa had considered herself knowledgeable about organ and tissue donation after seeing how it worked as a respiratory therapist, but when her co-worker’s granddaughter passed away and became an organ donor, she was inspired to learn more about the process.
After learning about the Howie’s House through a Gift of Life presentation, she and her family held a fundraiser to support our mission to care for transplant families. They also signed up to participate in our Home Cook Heroes program under the team name “Team Shea” as a tribute to her co-worker’s granddaughter.
“We had such a great time cooking meals for these families…and we’ve been volunteering ever since!” Theresa says.
Since her team’s initial visit in 2017, they’ve been back several times and have earned an All-Stars a plate on our wall.
Joining Theresa in our kitchen are her children and her grandkids. They prepare comforting meals like shepherd’s pie and meatballs and ziti. Sometimes they serve fun, interactive meals like “Walk-Around Tacos” where guests can create their own taco salads in a Frito’s bag.
Along with dinner, Team Shea brings games and gives guests a chance to win items like puzzle books, decks of cards, paperback books, or candy.
“We figured some of these items could make their time waiting a little easier,” Theresa adds. “No matter how bad a day they may have had, the Howie’s House guests are so nice and appreciative. It’s amazing.”
Team Shea also provides dessert!
“One time, a guest asked me if he could bring some extra cookies to his wife in the hospital to cheer her up,” Theresa says. “It amazed me that something Team Shea did—something so little—would make his wife’s time in the hospital a little bit better.”
Volunteers like Team Shea are such a vital part of our mission. Their hard work and dedication in our kitchen help us welcome transplant families home and lessen their burden of worrying about what to eat or where to get it after a long day.
Theresa hopes other people will become inspired to learn about the Howie’s House and its Home Cook Heroes program.
“People should go to the Howie’s House to see what it’s like and donate their time,” she says. “The staff tries so hard to make the guests feel as comfortable as possible. It’s even better than I imagined it to be.”
When Ashley saw a Facebook post about an ill member of her church family in need of a life-saving liver transplant, she couldn’t just scroll past it. “I felt this tug on my heart,” she says. “I felt like this was absolutely something I was supposed to do.”
Ashley was going to see if she could donate a portion of her liver. After testing, she was approved and thankful for the opportunity to save another’s life as a living-donor.
Ashley traveled 800 miles from where she was living in Atlanta, GA to Philadelphia, PA for the surgery. “I did a lot of research about the area and what places were available for living-donors to stay after surgery,” she says. “That’s how I found out about the Gift of Life Howie’s House.”
She checked in to the House the night before her surgery and returned when she was discharged from the hospital to recover.
While Ashley was in Philadelphia, she had many people supporting her who were also able to stay at the Gift of Life Howie’s House.
“Another woman from my church, Sheila, became my support person,” Ashley says. “While I was in the hospital, the House was an invaluable resource for her. When she was not with me, she was able to come back to shower, rest, and eat. She took advantage of the shuttle during this time and this was a huge blessing to her as she was not quite comfortable taking a taxi by herself.”
“I loved how friendly the staff was, how neat and clean the home was, and that they offered home-cooked meals in the evenings,” Sheila says. “I also loved being able to talk to other families about their loved ones.”
Sheila flew back home when Ashley was discharged. Ashley was able to have others visit the House to support her.
“The Gift of Life Howie’s House made the recovery easier. I was able to make friends with others on a transplant journey and this made me feel less alone and truly understood,” Ashley adds. “What they are doing to help transplant families is beautiful and more helpful than they may ever know.”
Ashley successfully became a living-donor and formed a close relationship with her recipient, Denice.
“My recipient and her family consider me family, and she calls me her ‘liver sister.’ Several months after our surgeries, she got to be present when her great-grandson was born. I have so loved seeing how she is living out her second chance at life!”
“I feel very blessed to have a living-donor,” says Denice. “I never feel like I could do enough to show how much she has given back to me. I can go places on my own and not worry about forgetting where I am. Ashley is one of the easiest people to talk to and is always willing to help anyone she can.”
“Before my experience, I knew very little about organ donation or the importance of it,” Ashley says. “Going through this brought me together with others going through similar experiences and it really opened my eyes to how many people are out there waiting for a life-saving transplant. I did have some friends and family who weren’t as comfortable, but I just continued to talk with them about the importance of donating and what the process was going to look like for me. I would want people to know it’s really not as scary as it sounds! I’m three and a half years post-op and I live a normal, healthy life.”
On Thursday, October 3rd, NASCAR driver Joey Gase visited Gift of Life Howie’s House, inviting us to take part in his outreach to educate millions of NASCAR fans worldwide about the life-saving importance of organ and tissue donation.
As part of his Hand Prints of Hope event, 50 members of the transplant community covered the hood of Joey’s racecar with hand prints and special messages which he raced that weekend during the NASCAR Xfinity Series at Dover International Speedway in Dover, DE. NASCAR fans were drawn to the colorful hand prints, messages, and the Gift of Life Donor Program logo in the center.
“It turns a ton of heads at the race track. When people see the hand prints all over the car, they want to come up and ask us about it and we get to tell them,” Gase, 26, said during his speech at the event.
When Joey was 18 years old, his mother, Mary, passed away of a sudden brain aneurism and was an organ donor. She was able to save and transform the lives of 66 people.
“Ever since that day, I wanted to do whatever I could to help raise awareness for organ donation and honor all those affected by it,” he said. “It’s not easy for the recipients, those on the waitlist, or the donor families. There are over 110,000 people on the waitlist nationwide and I want to do whatever I can to get that down to zero.”
We thank Joey and his team at Joey Gase Racing for their advocacy and support, and our friends at Medline for sponsoring this event!
Gift of Life Donor Program and MTF Biologics have partnered together for more than 20 years to bring the gift of life-changing tissues to patients throughout the U.S. and beyond. Now, MTF Biologics is spending time in the Howie’s House kitchen preparing meals for transplant families as part of our Home Cook Heroes program.
“The Howie’s House is one of the best ideas Howard Nathan has ever had,” says Martha Anderson, Executive Vice President of Donor Services at MTF Biologics. She has served on the Gift of Life Donor Program governing board for many years and supported the Howie’s House from its conception. MTF Biologics has underwritten the Howie’s House’s 4th Floor Lounge, and supported its annual Kidney Open Golf Outing and Donor Dash.
Martha recently brought her executive team to visit the Howie’s House and they decided they wanted to get more involved. “It’s also an amazing place for our staff to give back, learn about donation, and continue supporting Gift of Life,” Martha explains. “We also really want to get a plate on the wall!”
The plates on the wall in our kitchen celebrate our Home Cook Heroes All-Stars, groups who volunteer at least 12 times a year (typically about once a month) to help take care of our families.
“The Howie’s House is an amazing home away from home for transplant patients and families. The staff is committed to doing everything they can to take care of them,” Martha says. “Everyone from MTF Biologics who comes down to cook loves it, feels humbled, and appreciates the opportunity to give back.”
Not only does MTF Biologics come in to cook, but sometimes, they provide entertainment as well! MTF Biologic’s resident band, The Bone Tones, led by President and CEO Joe Yaccarino, came to perform during dinner one night and was invited back to play at the Howie’s House’s annual President’s Reception.
“They were really happy to come to the Howie’s House and play,” Martha says.
MTF Biologics is well on their way to joining our Home Cook Heroes All-Stars with a plate of their own on the wall. They’ve already come in 10 times this year and have prepared Mexican and Italian dinners as well as baked goods and brunch. We are so thankful for their commitment to our mission and look forward to see what they whip up next!
When you meet Asher, the first thing you notice is his big smile and the cute laugh that leaves it. “He likes to smile at the girls,” his mom Kendra says. “He’s such a little flirt already.”
What you may notice next are the wires attached to his stroller and the beeping of a machine that sits at the bottom of it, or the mask that wraps around his face to help him breathe.
“Asher hasn’t followed the normal path of anything,” Kendra says.
Just six weeks after he was born, Asher was placed on the transplant list to wait for a new heart. After a prenatal ultrasound, he was diagnosed with dilated cardiomyopathy when his doctor noticed something unusual about his heart.
While Asher waited for his second chance at life, he went into end stage heart failure and his kidneys and liver began to shut down. His doctors emergently placed him on a Berlin heart to keep him alive until a new heart became available. Surprisingly, on what was only supposed to keep his heart beating until he could receive a transplant, Asher thrived.
“He began doing normal baby things,” Kendra says. “He jumped from 10 to 15 pounds and became so much more expressive. He would smile and laugh while he watched people in the hospital.”
The day finally came when Asher and Kendra received news that he would receive his new heart. Asher received his precious gift of life because of a brave family’s decision–a decision that saved his life.
Unfortunately, Asher suffered some complications from his surgery. Within 10 days of his transplant, he underwent another major surgery.
“Asher was intubated in the hospital for the first month after his transplant,” Kendra says. “He was full of fluid and non-expressive…just not himself. It was so hard to go through that and think that I may have to say goodbye to my child.”
Thankfully, Asher made it through his second surgery. When he was finally able to leave the hospital’s care, the Howie’s House became Asher’s first home.
“I love that the Gift of Life Howie’s House is so clean and that it’s safe for immunosuppressed patients like Asher,” Kendra says. “Dinner is always made every night, which is wonderful. The last thing I want to do is cook when I get back from the hospital. It’s also so family-oriented. It was so easy for me to be a mom spending time with my children.”
While Kendra takes care of Asher, her family, including her father and other two children, come down to spend time with them on the weekends.
“One day we sat down in the Activity Center and watched movies all day,” she says. “We also eat dinner together in the garden and go on walks. We even went to a festival at one of the parks nearby.”
At the Gift of Life Howie’s House, Kendra is also able to take care of herself. She takes bubble baths in her private bathroom, uses the gym, reads in the library, sits outside, and participates in the evening activities with her daughter.
She also spends time talking to other families about their transplant care. She even learned that some of them are on the same medication as Asher. “Learning from [the other transplant families] gives me hope,” she says. “I’m less stressed because there are so many people to talk to. I didn’t realize how nice that’d be.”
Asher has recovered so well that he and his family were recently able to go back to their own home, but plan to return to the Howie’s House for their follow-up appointments.
“I know Asher may need more care in the future,” Kendra says. “And I’m just thankful that the Howie’s House exists.”
On Friday, May 17, 2019 our colleagues from Thomas Jefferson University Hospital joined us at the Howie’s House for a special luncheon to celebrate an amazing milestone in our partnership—a $250,000 pledge from their hospital to support the Howie’s House mission. As part of this pledge, Jefferson Hospital underwrote our “Family Community Center” on the lower level of the Howie’s House, which includes our laundry and fitness facilities, salon, Volunteer Center, and Activity Center.
During the luncheon, special remarks were made by Richard Webster, President of Jefferson Hospital, Howard M. Nathan, Founder and President of Gift of Life Howie’s House, and Ed Carman, a liver and kidney recipient treated at Jefferson and former Howie’s House guest. Following the program was a ceremony to unveil the “Family Community Center” plaque in Jefferson’s name.
“Jefferson saved my life and I will always be thankful for that,” Ed said during the event. “While I was staying [at the hospital], my wife had a safe place here, and a caring place here. I didn’t have to worry about that for her. I knew she was OK.”
Jefferson was the first transplant center to financially support the Howie’s House. In their first pledge, they underwrote the Howie’s House’s dining area where families can meet and connect over their experiences while sharing a warm, home-cooked meal.
“I feel committed to the Howie’s House because I see the impact it has across the community,” said Mr. Webster. “We are so fortunate that it’s here for our patients.”
Mr. Webster, Ed, and his wife, Gail, were also presented with the Howie’s House challenge coin, which is a token of thanks given to members of our community who represent values we hold dear, including family, community, compassion, generosity, service, and commitment.
Through their compassion, commitment, generosity, and service to our mission, our colleagues at Jefferson Hospital have made incredible efforts to strengthen patients, families, and the transplant community. We are so thankful for their support!
After the event, Jefferson Hospital staff participated in a team-building baking competition in the Howie’s House kitchen as part of our Home Cook Heroes Program. We have had more Home Cook Hero volunteers from Jefferson Hospital than any other hospital in our region—just another way Jefferson demonstrates their loyalty and commitment to our mission.
We are so thankful for our partnership with them!
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