Hospital
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!
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!
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!
Corey Baker received his precious gift of life—a set of lungs—last September from as a charitable act from a kind, selfless donor. He and his parents, Jack and Sharon, traveled from upstate New York to Philadelphia when they found out his pulmonary hypertension treatment would require a transplant.
Jack and Sharon stayed at the Gift of Life Howie’s House while their son received treatment and during his recovery. While Corey was in the hospital, his parents would use our shuttle to travel back and forth from the hospital each day. “The reason we chose to stay at the Gift of Life Howie’s House was because of the shuttle service. Sharon doesn’t drive and I didn’t feel comfortable putting her in a taxi when I couldn’t travel with her,” Jack explains. “Because it was free, traveling was a lot easier for us.”
When Corey was in the hospital, his mother used it every day to visit him. “I usually took the 8:00 a.m. shuttle in the morning and took the last one back around 5:00 p.m.,” she says. After his transplant, Corey took the shuttle at least three times a week to travel back and forth from the House and his rehab appointments.
Corey, Jack, and Sharon all agree that talking to our volunteer shuttle drivers and other transplant families who they met on their rides brought them hope and comfort. “Many of the drivers and guests told us about their own transplant journeys. It was nice to hear about their experiences and what they learned,” Sharon says. Jack and Corey enjoyed how comfortable they felt learning about the unfamiliar city they were now living in. “We loved how all the drivers explained the city to you. We live four hours away, and we don’t know it well. Around the holidays, it was nice to look at the buildings lit up. We’re from the country—we never see sights like that,” Jack explains.
Once Corey was feeling better, he and Sharon would take walks to different places the shuttle drivers pointed out. “We’d remember places, and once he got well enough, Corey and I would walk to them,” Sharon says. “It was a great way to get out and enjoy the weather.”
Last year, our shuttle transported more than 4,600 guests between the Gift of Life Howie’s House and Philadelphia’s transplant hospitals. Unfortunately, there were many trips when guests were turned away because the shuttle was too full or could not accommodate their needs, such as space for oxygen tanks and wheelchairs. Sharon herself experienced some of these issues. “There were times I was turned away from the shuttle because it was full. It seemed really, really busy,” she says.
This spring, the Gift of Life Howie’s House hopes to raise $50,000 to purchase a new, 11-passenger shuttle to better accommodate our guests. Our new shuttle will have more seating for our guests, a larger cargo area, and it will be easier for patients and their families with equipment or physical disabilities to get on and off.
To accomplish this, we need your help.
Our shuttle service alleviated the financial stresses the transplant journey can bring for the Baker family. Without it, the Bakers say they would have had a difficult time getting to and from hospital visits and doctor’s appointments. “We would have to use Uber, which can cost anywhere between $10 and $20 depending on the time of day,” Jack says. “One time, we took an Uber in a snowstorm and it cost us $82.”
“I didn’t even have access to Uber when we first got to the House,” Sharon adds. “I still had a flip phone.”
The Bakers understand our need for a larger, more accessible vehicle.
“There’s always someone going in and out of the Gift of Life Howie’s House,” Sharon says. “A lot of times, some people were too late or too early for the shuttle. Sometimes, there weren’t enough drivers. We’d see Joe, the manager, filling in a lot.”
“Extra seating would help a lot of people,” Jack says. “The bigger shuttle will be able to fit 5 more people. That’s a big difference.”
A gift towards our campaign for a new shuttle will help families like the Bakers feel comfortable traveling in a new, unfamiliar city during the often stressful transplant journey and help guests like Corey continue to get the care they need.
Please consider making a donation below:
Did you know last year our shuttle volunteers made more than 1,600 trips and drove over 19,000 miles to get our guests to doctors’ appointments and hospital visits? That’s about as far as driving from Philadelphia to Los Angeles seven times!
John Branton has been a Howie’s House volunteer driver for five years and a volunteer speaker for Gift of Life Donor Program since he received a liver transplant 10 years ago. He drives two days a week, taking the afternoon shift when guests are usually returning to the Howie’s House.
Now retired, John was a small business owner and insurance executive. He says that he often shares with guests how the transplant enabled him to return to a normal life.
“The conversations that go on in the shuttle are oftentimes very emotional,” says John. “Not everyone winds up with a good outcome. So those kinds of conversations are tough. But even when it’s disappointing news it’s better to share it with other people who can empathize and understand what you’re going through.”
John also notices the difficulties some of our guests face when utilizing our shuttle. Because of its small size, it’s tough to fit everyone’s necessary equipment and even to accommodate all of our guests who’d like to use the service.
“Some transplant patients must travel with multiple oxygen tanks. It’s difficult for their family caregivers to carry these items with them, but also sometimes impossible for them to maneuver their way into the minivan,” explains John.
Watch more of John’s testimonial here.
John sees our need for a larger, more accessible vehicle, and he hopes you do, too. We urgently need your help to comfortably transport our guests to and from area hospitals. Through your kindness today, we can make this a reality.
Will you please help us?
Do you remember when we asked you to write an encouraging note to our transplant families as a part of our Welcome Them Home campaign?
Last fall, we set out to collect 1,000 encouraging messages from caring people like you to transplant patients and their families.
We had these notes sewn together into a beautiful welcome banner that is now hanging in our dining room to welcome our transplant families home after long, hard days at the hospital.
It is our hope that these words of encouragement, wisdom, and strength will bring hope to our guests during a difficult journey and that support from our community will bring them joy and peace.
Some of the notes read:
“Welcome to warm hospitality, a comfy bed, warm meals, and a listening ear.” –Lorraine
“You are strong and courageous.” –Anonymous
“Stay strong. The people who work here and the other families will be your greatest support.” –Anita
“This is your home to find comfort in and share with those who understand.” –Rob
“There is hope and love, much of it found right here. Ne strong, never give up!” –Tibor
“Difficult roads often lead to beautiful destinations here at the Howie’s House. Welcome.” –Ed
“You’re patient and loving.” –Anonymous
“Hang in there. Things will get better. Never lose hope.” –Mary Ellen
Thanks to you, we can remind our transplant families of the support they have. No one’s transplant journey will be exactly the same, but finding ways to support one another is a crucial part of helping our families feel comfortable, safe, and supported.
Thank you for being part of such an inspiring project!
“My experience at Gift of Life Howie’s House is inexpressible.
I spent 42 nights there while my husband was in the hospital. The Gift of Life Howie’s House is a home. When visiting my husband daily at the hospital, I would find myself telling him what time I would be going “home” that day.
When I did arrive home, I was always greeted by the smiling faces of the dedicated staff and the aromas of a home cooked meal. The rides to and from the House were another gift. The volunteers, many of them transplant recipients, were a source of support because they knew exactly what I was experiencing. Of course, there was also a tremendous connection that developed among the guests.
Although everyone had a different story, and we were all on different steps of the journey, it was such a comfort to share my day with people who were walking the same walk as I was.”
–Judy, past family House Guest
More than half of our guests depend on our free, regularly scheduled shuttle service to travel back and forth from the Howie’s House to area transplant centers. This past year, more than 4,600 guests climbed aboard our six-passenger minivan driven by our devoted volunteer drivers. But on too many of those trips, guests were turned away because it was full.
The minivan also has limited cargo space for stowing oxygen tanks and wheelchairs needed by transplant patients. And squeezing into the back row of seats can be challenging or impossible for some of our guests.
With your help, we can make it easier for our guests to get to area transplant centers and #HelpShuttleHope
To meet the increased need for shuttle service as our occupancy grows, and to better provide for our guests’ comfort and wellbeing, the Howie’s House must purchase a new 11-passenger vehicle. Getting on and off will be made easier and faster by its bus-style folding door, low steps, a center aisle, and raised roof. Its larger capacity will enable us to adjust the schedule so drivers have more time to complete their runs and stay on time. It will also have a larger cargo area.
Our new shuttle will cost more than $50,000, not including gas, maintenance, and insurance. We are asking everyone in our Howie’s House community to please consider helping us make this a reality.
By supporting the purchase of the new passenger van, you will help to ensure that our shuttle service continues to meet the needs of Howie’s House guests. Transportation is an important part of the comprehensive services provided within our modest $40 nightly lodging fee. Charitable contributions to the Howie’s House make this possible.
Less stress and cost for guests
In addition to comfort and convenience, the shuttle helps transplant families save on the cost of parking and gas, which can add up to hundreds of dollars a month, and relieves them of the burden of city driving.
“Most of our guests aren’t familiar with Philadelphia and so they have no idea how to get to the transplant centers. They get overwhelmed by the traffic. And they’re already overwhelmed by their own situation. We’re trying to make it easier for them by providing these door to door transportation services,” says Joe Kauffman, Howie’s House Operations Manager.
No one could agree more than Diane Hems who stayed at the Howie’s House while her husband, Don, was waiting for his gift of life, a lung transplant. “Having the shuttle service available alleviated my stress and fears of getting lost in the city. Each day, the volunteer driver safely dropped me off at the hospital and then brought me back to the Howie’s House at the end of the day. There are no words to describe how grateful we are for the services provided.”
Claudia Fernandez often took the shuttle when her young son, Josh, was undergoing a lung transplant. “I liked it because I didn’t have to deal with traffic. It’s not easy driving around Philly when you’re not from there. I found it so convenient and helpful.”
Every ride a healing journey
The backbone of the Howie’s House shuttle service is our devoted volunteer drivers who last year made more than 1,500 trips and drove over 19,000 miles, expertly navigating city traffic and getting our guests to doctors’ appointments and hospital visits.
There are a dozen volunteer drivers who either work regular part-time shifts or who fill in when needed. Most of them are transplant recipients or have been family caregivers. They enjoy interacting with our guests and helping them through experiences they have in common.
John Branton has been a Howie’s House volunteer driver for five years and a volunteer speaker for Gift of Life Donor Program since he received a liver transplant 10 years ago. He drives two days a week, taking the afternoon shift when guests are usually returning to the Howie’s House.
Now retired, John was a small business owner and insurance executive. He says that he often shares with guests how the transplant enabled him to return to a normal life.
“The conversations that go on in the shuttle are oftentimes very emotional,” says John. “Not everyone winds up with a good outcome. So those kinds of conversations are tough. But even when it’s disappointing news, it’s better to share it with other people who can empathize and understand what you’re going through.”
Riding the shuttle also enables families the time to share their experiences with one another, gaining support and strength along the way.
Ashley Adams, who rode the shuttle when her husband Bobby was gravely ill and waiting for a lung transplant, found it comforting to talk with other families and the volunteer drivers. “It was really great being able to talk with everybody about what they’re going through. It does really help,” she says. “One of the drivers had a lung transplant so I was asking him a lot of questions about it. Bobby and I ended up getting married in the hospital and it was this shuttle driver who arranged for a friend of his to marry us.”
Please consider making a tax-deductible contribution today to support the urgent need to purchase a new passenger van and #HelpShuttleHope.
by: Kirsten Diegel
- Take a Lap – Walk around the whole cafeteria to see the selection. Cafeterias may change the menu daily, and sometimes they have seasonal specials. As you walk around, take note of which options fit your nutrition goals. For instance, are you trying to lose, gain, or maintain your weight? What did your dietitian recommend?
- Food for Thought – Although the staff works hard to prepare foods that are safe to eat, transplant patients need to be especially careful. This is one reason why dietitians spend time educating transplant patients before discharge. Examples of foods to avoid include deli meats and cheeses, salad bars, raw nuts and sprouts, etc. Refer to FDA’s list about food safety as a refresher. If needed, contact your dietitian for an additional copy of Food Safety for Transplant Patients.
- Balance Your Plate – Imagine your plate is divided into 4 sections; fruit, vegetable, protein, and whole grains. Aim to have a plate that has food in each section. Of course, this can be a challenge. At a minimum, try to pair a protein (chicken, turkey, fish, beef, peanut butter, milk, etc.) with at least one other food group (fruit, vegetable, or grain). Having a serving of protein will help keep you feeling full!
- Sip on This – Beverages can boost your calorie intake and weight, which may be a benefit for some but not so great for others. If you are trying to gain weight, high calorie beverages/fluids, such as whole milk, chocolate milk, fruit/vegetable combination juices, protein shakes are options to consider. On the other hand, if your goal is to lose or maintain your weight, water, unsweetened beverages, and low-fat or skim milk is your best bet. Remember: Canned beverages (ex. soda) are not recommended for transplant patients for food safety purposes.
- Keen on Clean – Before eating or drinking anything that you have purchased, take a second to use hand sanitizer to clean your hands, wipe your utensils with a napkin, and wash your fruit. That apple may have been washed in the kitchen, but who knows how many people picked it up before you selected it. During your meal, place your utensil on a napkin or on your plate rather than setting it directly on the table between bites.
About Kristen:
Kirsten Diegel graduated from University of Delaware and completed her Dietetic Internship through ARAMARK in Philadelphia. She is currently pursuing her Master of Science in Health Promotion at the University of Delaware while working as a Clinical Dietitian at Temple University Hospital. Kirsten has worked within the hospital system for 4 years and has been a part of the Lung Transplant Program, one of the oldest and most experienced centers in the region, for the last 3 years. Kirsten is an active runner who is working towards running the New York Marathon in 2017. Kirsten enjoys eating soy yogurt with fruit and almonds/walnuts as a snack to help fuel her workouts, although she will never say no to anything with chocolate.
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