heart transplant
Balancing caregiving for a transplant patient and being a mom can feel like an overwhelming task. Jessica shares her experiences of caring for her son facing the unimaginable challenge of heart failure and the urgent need for a heart transplant.
Jessica, Mother of CJ
Q: How have you managed emotionally since CJ has been sick for so many years?
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: CJ has had a heart condition since birth; he’s now 11 years old, with an LVAD and has been waiting for a heart transplant for almost three years. You also have four other daughters (13, 12, 9, and 6 years old). How do you balance being a mom to your son and three daughters with everything going on?
A: It’s very hard. Our church family helps us with so many things. There were times where he was hospitalized for really long periods. Between 2022 and 2023 he was hospitalized for just about an entire a year, and we had family to support our other daughters. My husband and I try to work as a team to be there for the kids, though it’s hard when we can’t be there together when CJ is at the hospital and the girls are at home. We try to find the little things and moments, like all of us FaceTiming every morning and every night and visiting on weekends.
Q: How has it been for you knowing another mom and family will be grieving a loss when CJ receives his heart transplant?
A: I would never want another child to get ill or be hurt, especially since having my own children and a child who has an illness. When CJ was getting listed for a heart, a nurse encouraged us to think of it differently, that we’re not praying for another child to die for CJ to live, we’re praying for that child’s loved one to have the strength to say yes to donation by blessing CJ with the gift of life in their time of their tragedy. I still struggle thinking about it, especially during the times when CJ has gotten “calls,” but we still pray for those families regardless of whether they would go on to become a donor for CJ.
You can provide hope to the thousands of people like CJ who are waiting for a transplant. Learn more and sign up at www.donors1.org/register
Joe Eitl is a Montgomery County native born with congenital heart disease. He and his family were told that he would not live past 3 years old, and that transplant would never be an option. Joe defied the odds and lived a normal, active life until he was 38 years old and his health started to decline. He was listed for a heart and liver transplant, and in November of 2020, Joe received his miraculous gifts of life. Joe lives with Down Syndrome, and due to the nature of his transplant he had many complications following his procedure. He was in and out of the hospital for over a year post-transplant, and his parents, Peg and Craig, relied on Gift of Life Howie’s House for a safe place to stay where they could be close to Joe.
“Our days start at around 7:30 or 8’clock in the morning and don’t end until 7:30 or 8’clock at night, and that’s on a good day… we were dreading the idea that we would be a two hour commute every day both ways.” – Peg Eitl, Joe’s mom and caregiver.
While staying at the House, Peg and Craig received access to home cooked meals, one-on-one counseling, and a private room and bathroom to decompress in at the end of the day. The services that the House provides allowed Joe’s family to feel taken care of so they can focus on what’s most important, taking care of their loved one.
Joe is now 3 years post-transplant and is back at home doing the things he loves which includes spending time with friends and family and rooting on his beloved Philadelphia sports teams.
“To say that the House was a saving a grace is an understatement,” says Peg.
When deciding to accept the Development internship at Gift of Life Howie’s House, I can’t deny the fact that I had slight hesitation. I had worked so hard to maintain some form of normalcy upon my mom receiving her heart transplant from Temple University Hospital in 2014. Growing up, it had always just been my mom and me. When we found out she would need a heart transplant, we both were not only in shock, but incredibly scared.
At the time, I was just shy of 18 years old entering my senior year of high school. I thought my biggest challenge that year was going to be applying to colleges; however, that didn’t come close to what I would be up against. I couldn’t help but feel completely devastated. All I could think about was my old routine. What my mom and I had done practically my entire life. We would get up in the morning together and I would dress for school and she for work. I would rush out of the door to catch the bus while she ran after me to ensure I had some form of breakfast. We would separate for the day until around 6:30pm when she would come pick me up from track practice and we’d go home for dinner.
This routine was so important to me because it set the tone for the rest of my day. My mom always sent me off with nothing but smiles and positive energy. It didn’t matter if we had an argument the night before or if I was just grumpy that morning from studying late at night. She always made sure I felt her love before I headed out the door.
This was a routine I would never experience again.
For the first three months of senior year, I spent my time going to school and then rushing to the hospital to visit my mom, which became her new home. I would sit and do my homework and apply to colleges. My mom was very adamant about making sure I was still getting my work done and taking the necessary steps to further my education. While college began to feel less and less important, I somehow managed to get through several applications with the assistance of my mom.
Finally the time came! After three long months, which felt more like three years, my mom received her precious gift of life on November 1st 2014, exactly one month after my 18th birthday. It was the best present I could have ever received!
Now transitioning to life after graduating from Temple University, I knew working at the Gift of Life Howie’s House was the right decision. I was determined to not allow my previous hesitation to stand in the way of an amazing opportunity, so despite my own fears of revisiting my past trauma, I accepted the offer!
When my first day approached, I didn’t exactly know what to expect, but I felt ready. I entered the gates of the Howie’s House and walked through the doors approaching the Front Desk. Everyone was so incredibly welcoming and friendly; I truly did feel a sense of home immediately.
It almost felt therapeutic for me to be in a space that nurtured and cared for people that were going through exactly what I went through. It was a powerful experience for me to engage with families on a professional and personal level at the House. I didn’t expect to feel such a rush of amazing emotions. I am so grateful for the Howie’s House and the experience I gained both professionally and personally. My last day will be such a bittersweet moment because I have curated such great connections with guests and the staff that I hope last beyond this opportunity.
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!
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.”
Many of you may remember Matthew Brown, also known as “Mattman,” who stayed at the Howie’s House with his mother, Kelly, back in 2014. He received his precious gift of life—a life-saving heart transplant—at just five years old. Now Matthew is a bright, happy nine year old boy in the fourth grade, and we are so happy to let you know that he is doing very well!
Before Matthew Brown was five years old, he’d had four heart surgeries. He was born with a defect that was weakening his heart. The day after Christmas in 2013, he was medevacked from his local hospital to the Children’s Hospital of Philadelphia and listed for a transplant.
“I really had no idea how long we’d be away from home,” Kelly explains. Thankfully, Matthew received his transplant on June 25th, 2014 and was able to stay at Gift of Life Howie’s House with her as he recovered.
Kelly and Matthew stayed in Philadelphia for 8 months—from the day Matthew was flown to the Children’s Hospital of Philadelphia to the day his doctors told them it was OK to go home.
During his stay, Matthew was also featured in our 2014 holiday campaign, using his brave transplant journey to help support other families like his.
Four years later, Matthew and Kelly still return to the House every three months for his follow-up appointments.
Matthew says he loves coming back to the Howie’s House because it’s “nice and comfortable and the food is tasty!” Last time he and Kelly were here, they enjoyed a delicious “Philly-style” dinner—cheesesteaks and corn dogs—prepared by our volunteers.
He also loves running into Ms. Diana at the Front Desk. They always have a staring contest and a thumb war. He’s a lot bigger now than he was when he first stayed here, but Ms. Diana can still beat him from time to time.
Matthew is a happy, healthy 4th grader now. His favorite subjects are math and history, and he still hasn’t decided what he wants to be when he grows up. He loves playing video games on the tablet and on his computer, and spending time with his family.
Matthew and his family are just one example of the hundreds that come to the Howie’s House each year navigating the difficult transplant journey.
“The Howie’s House really supported us throughout our journey,” Kelly says. “It was nice to meet families going through similar challenges. It really made me feel so much better.”
It was because of our generous community that Matthew and his mom were able to stay together and had a safe place to return as they adjusted to Matthew’s second chance at life.
Each year, families like Matthew and Kelly’s come to the Howie’s House for support as they navigate the difficult transplant journey, and it is because of people like you that we are able to be their “home away from home.”
We are so proud to have helped a brave boy like Matthew and a strong mother like Kelly, and we look forward to serving other transplant families coming to Philadelphia with you by our sides.
Thank you!
While her granddaughter was on life support awaiting a heart transplant, Lauren Anello was living in the hospital out of her suitcase. “It’s so hard to sleep in an ICU when there is no bed to sleep on,” she says. “I slept in a reclining chair.”
Lauren’s granddaughter was born with a condition called hypertrophic cardiomyopathy, where heart muscle develops abnormally thick, making it harder to pump blood throughout her body. Thanks to an incredibly selfless donor, she received her precious gift of life in 2011.
Lauren and her granddaughter were able to stay at the Gift of Life Howie’s House after the transplant surgery, and they come back at least once a year for follow-up appointments. “There were so many times I’d come back from the hospital unable to see straight,” Lauren explains. “To have a place to lay your head at night with a clean shower is absolutely amazing.”
If the Anello family didn’t have the Gift of Life Howie’s House, they’d have to drive two and a half hours each way from their home in rural, northern New Jersey. “I was terrified of having to find a place to live in Philadelphia. It isn’t something we can afford. But at the House, the staff made it not scary. They welcomed us with open arms.”
During her stay at the House, Lauren also made a very close knit group of friends going through the transplant journey—and they still keep in touch years later.
“I don’t know any other organization like the Gift of Life Howie’s House. All of my basic necessities are met here. It is a welcoming, safe, and secure place to go. I can talk to a social worker, get a ride to the hospital, and relax in the garden outside. My stay at the House gets better each time.”
As a member of the Welcome Home Club, you can help people like Lauren and her granddaughter who are undergoing the often stressful transplant journey. A small commitment from you, whether its $10, $21, or $100 a month, will go a long way to provide meals, use of a full-service kitchen, transportation, and a place to sleep for transplant families traveling a long way to receive life-saving care.
Most importantly, when you join the Welcome Home Club, you’ll give a family one less thing to worry about, allowing them to focus on what’s most important—caring for themselves and their loved ones.
One June morning, Joseph Mansaray woke up and found it difficult to breathe. His father, Peter, took him to the hospital where a chest x-ray revealed he had an enlarged heart. His doctor explained to him that the small, local hospital would not be able to help and had Joseph and his father transferred in an ambulance to another where he was admitted and spent 12 days in the ICU.
After several more tests, doctors there also felt there was nothing they could do to help Joseph. He and his father were transferred again, this time by helicopter, to a world renowned hospital in Philadelphia. Here, doctors were able to diagnose Joseph with cardiomyopathy, a disease of the heart muscle which makes it difficult for the organ to pump blood, and told him that he may need a transplant. Joseph’s mother, Mary, was also recently diagnosed with cardiomyopathy and was just beginning her transplant journey.
Doctors gave Joseph a left ventricular assist device, or an L-VAD, to help pump blood throughout his body, hoping it would strengthen his heart enough to later be removed. After surgery, Joseph was discharged to the Howie’s House where he and his father stayed during his recovery. His mother remained at home with his other siblings. A few weeks later, after three months in three different hospitals, Joseph and his father were able to join them. Life, however, wasn’t the same—Joseph couldn’t go to school, run, or play soccer.
That fall, Joseph returned to Philadelphia for a follow-up appointment where doctors found the L-VAD had not worked like they had hoped. Joseph’s heart was not healing and the next course of treatment was a heart transplant. Around this time, Mary had received her precious gift of life, but unfortunately, suffered major complications. She passed away in November 2015.
“Watching my mom’s transplant and what happened to her after was so hard for me. I was so sad that my mom had passed and also so scared that this was going to happen to me,” Joseph says.
Thankfully, his dad was there to support him.
“[Joseph] never complained. And as a dad and a caregiver, watching my son go through what he went through and handle it with such grace. It helped me. It really helped me,” Peter says.
In February 2016, Joseph received “the call” and was gifted a new heart thanks to a charitable act by a selfless donor. His recovery went smoothly, and 10 days after his surgery, he was discharged to the Howie’s House with his father once more.
“The House made life easier for me and my family during this time and I am very grateful for that,” Joseph says.
After a few more weeks, Joseph was able to return home. He was able to play soccer during his senior year of high school. Now he also plays in college.
“I thank everyone at the Howie’s House for all the good work they do every day and all that they have done for my family,” Joseph says. “They helped us through some of the hardest times in our lives, giving us somewhere to sleep, connecting us to other transplant families and donor families, and helping us when life was falling apart.”
“When the helicopter landed at the hospital in Philadelphia, I was alone with my son,” Peter explains. “I was afraid, worried, confused…but by the time we left [the Howie’s House], I left with a whole family.”
Peter is just one of the many strong husbands and fathers who stay at the Howie’s House. This Father’s Day, you can give them one less thing to worry about so they can focus on supporting their families and each other through such difficult times. Please consider making a gift to help support the fathers and sons like Peter and Joseph undergoing the transplant journey, or in honor of an important male figure in your life.
Click here to give!
Gift of Life Howie’s House would like to welcome the newest member of the Gift of Life Howie’s House Advisory Board, Bill Soloway! Bill is a heart transplant recipient, receiving his precious gift of life in June of 2015 thanks to a selfless donor. He is well known for his community advocacy, his relationship building, and his endless energy. “You have one life to live and eight lives to give,” he says. “Become an organ donor. My life depended on it.”
In the mid-1990s, Bill was diagnosed with hypertrophic cardiomyopathy, an inherited condition where heart muscle cells become enlarged, altering the structure and function of the heart. Bill lost his 27-year old brother to the same condition.
Before his transplant journey, Bill loved cycling. During his post-transplant recovery, Bill was inspired by stories he heard about the Transplant Games, a multi-sport event for individuals who have undergone life-saving transplant surgeries. Just 10 weeks after his transplant, Bill got back on his bike. This year, Bill will compete in both the Transplant Games’ 5K and 20K bicycle races, as well as in badminton, volleyball, and pickleball.
Bill honors his donor and donor family through his work in the community including service as a Gift of Life Ambassador, HUP Heart Transplant Support Group member, Team Philadelphia member, TRIO Philadelphia Chapter Board member, UNOS Ambassador, Masonic Blood+Organ Donor Board member, and a Help Hope Live committee member. Bill is also an Eagle Scout.
When asked about the Howie’s House, Bill says: “Being a heart transplant recipient, I understand the many trials and tribulations that families go through in the transplant process. To have a place that is a safe port for transplant families to anchor in after a long day at the hospital means an awful lot, especially to those families that are not familiar with the Philadelphia area. I believe in everything the Gift of Life Howie’s House stands for and am honored to be a part of such an amazing organization.”
In 2004, Diana Ortiz battled a virus that left her with an enlarged heart. In 2011, her heart began to fail and she started spending several days each month in the hospital. In 2016, she was given six months to live. Ortiz received a left ventricular assist device, an LVAD, to help her heart pump blood throughout her body. She went back home to Allentown, PA, with her partner, Chris Bolden, and her doctor placed her on the transplant list in September of 2017. Shortly thereafter, Ortiz received her life-saving heart transplant and a miraculous second chance at life thanks to a charitable act by a donor family.
Bolden and Ortiz made the three hour trip to Philadelphia where Ortiz underwent surgery to receive her precious gift. While the surgery was successful, her new heart was weak at first. Doctors placed her back on ECMO for the first month and she fell ill to pneumonia. Throughout the ordeal, Bolden rarely left her side. “I only went home twice,” Bolden said. “I visited the hospital every day. Halloween, Thanksgiving, Christmas. On the days I did go home, my first stop of the day was always the hospital.”
Bolden stayed at the Gift of Life Howie’s House for four months while Ortiz recovered. He had a place to sleep, a place to eat, and people to talk to while he supported his loved one. The Gift of Life Howie’s House provided shuttle service for him and other guests to the hospitals where their family members were being treated in Philadelphia. “The shuttle is a lifesaver for people,” Bolden said. “Drivers drop you right in front of the hospital entrance and people on the shuttle have either been through or are going through the same things as you. Drivers are even willing to point out historical landmarks in the city.”
Our House volunteers drive the shuttle which runs several times a day, assisting guests who do not have cars, don’t feel comfortable navigating the city, and/or can’t afford to pay for gas and parking. “Without the shuttle, it would’ve been more of a struggle,” Bolden said. “Parking my own vehicle at the hospital would have cost almost $100 a week.” This past year, more than 4,600 guests climbed aboard our six-passenger minivan. Unfortunately, there were many trips where guests were turned away because the van was full. The minivan also has limited cargo space for stowing oxygen tanks and wheelchairs needed by transplant patients. Recently, we rented an 11-passenger vehicle to better provide for our guests’ comfort and wellbeing. “The new shuttle is roomier. There’s an overhead compartment and more room to get in,” Bolden said.
As part of our spring campaign, we hope to raise $50,000 to put towards a new, 11-passenger shuttle with a bus-style folding door, low steps, a center aisle, and a raised roof to make trips easier for both drivers and riders.
“Without the House, [Chris] would either be living at the hospital with me, or couldn’t come back and forth,” Ortiz said. “I never worried because I knew he had a place to stay.”
We hope you consider supporting our campaign for a new shuttle. Your donation will help guests like Chris Bolden travel back and forth to visit their loved ones and leave them with one less thing to worry about. Click below to make a donation:
News & Events
Stay Connected
Sign up to receive email updates featuring transplant stories of hope and ways you can get involved with the Howie's House.
"*" indicates required fields
