Liver Transplant

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 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 Howie’s House for a total of six weeks.   

“The staff members at the 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 Howie’s House and the tremendous support they received. Scott would often attend the support groups hosted by the 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 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 Howie’s House had experienced something similar,” she shares. 

At the Howie’s 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 Howie’s House. They look forward to returning to see familiar faces when visiting for follow up transplant appointments and feeling the sense of community the Howie’s House provides. We look forward to seeing Scott and Kirby for their next visit here with us!

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, safe and sound in her room at the Howie’s House

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 Howie’s House.”

She checked in to the Howie’s House the night before her surgery and returned when she was discharged from the hospital to recover.

Ashley and her support person, Sheila, who was also able to stay at the Howie’s House

While Ashley was in Philadelphia, she had many people supporting her who were also able to stay at the Howie’s House.

“Another woman from my church, Sheila, became my support person,” Ashley says. “While I was in the hospital, the Howie’s 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 Howie’s House to support her.

Ashley with her recipient and “liver sister,” Denice

“The 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.”

Ashley living a normal, healthy life post-transplant

“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.”

To receive her life-saving liver transplant, Karen Wolbach was airlifted from her home in Burlington, Vermont to a treatment center here in Philadelphia. Her husband and caregiver, Richard, had just four hours to alert friends and family, pack a bag, find a place to stay, and make arrangements for someone to look after their home before the air ambulance arrived.

“There was no time for decisions,” Richard said. “We just got on the plane with the nurse, medical assistant, and the pilots. Everything seemed to move in slow motion.”

Richard and Karen with their son, Ryan, enjoying their time together outdoors

Karen had been getting sicker and sicker. She was growing extremely fatigued, nauseous, lost her appetite, and was beginning to jaundice. She no longer had the energy to take walks outside with her family, meet up with her friends for lunch, watch her son perform as a clarinetist, and had to resign from her job as a radiologic technologist because she was too weak to work.

Her need for a transplant had not just turned her life upside down, but had suddenly relocated her and her husband over 350 miles away to a city neither had ever been to before.

While Karen was in the hospital, Richard needed to find a place to stay. He initially booked a week-long hotel stay so he could be close to Karen while she was in the hospital, but with expensive city hotel prices, he knew he could not afford those accommodations for long.

Thankfully, someone on Karen’s transplant team told him about the Howie’s House. He gave us a call and there was a room available for him.

“A lot of people don’t realize that being a caregiver comes with a tremendous amount of stress,” he says. “It can be so overwhelming, but the Howie’s House took the worry out of my day so I could focus on caring for my wife.”

At the Howie’s House, Richard had access to all of the supportive services we offer, including a private guest room, a warm, home-cooked meal each evening, free shuttle service to and from the hospital Karen was receiving treatment in, counseling from our licensed social worker, and support from a network of other families who understood what he was going through—all for just $40 per night.

The support Karen and Richard gave each other by being close together is invaluable to the transplant journey

Karen received her second chance at life thanks to an incredibly selfless donor shortly after she and Richard were airlifted to Philadelphia. She was able to join Richard at the Howie’s House for two weeks before they were given the OK to go back home.

While Karen was here, she too was able to rest. Each night, dinner was waiting for her as she came down to the kitchen. She hopped on the shuttle’s morning run when she had to see her doctors at the hospital. She was also able to talk with our social worker and other transplant families about what she was feeling.

“I wasn’t just healing physically, but I was healing emotionally,” she explains. “It was very therapeutic to sit down and share stories. It reminded me that I am not alone. If we had to stay in a hotel, we would never have gotten this kind of support.”

Karen and Sister May, a family friend, in the Howie’s House dining room

“The Howie’s House has helped me heal, too,” Richard says. “We felt a little apprehensive coming back to Philadelphia for Karen’s follow-up appointments after all that’s happened, but once we came back to the Howie’s House, it was like we were home again.”

Now that Karen’s health has improved, she wants to get back to work and volunteer in her community, and spend time with her family.

Karen and Richard were away from their home for four months while Karen received her life-saving transplant and recovered here at the Howie’s House. At the beginning of their journey to Philadelphia, they had no idea how long they’d be away from home or how they’d afford to stay together and support each other during this difficult, scary time.

Karen and Richard received the support they needed on their transplant journey here at the Howie’s House

Without the Howie’s House, Richard and Karen may have had to find an apartment, take cabs or public transportation to and from the hospital each day, find meals and a place to wash their clothes, and may not have met any other families on the transplant journey who could offer them friendship and support. Richard may not have even been able to stay by Karen’s side while she was in the hospital.

At the Howie’s House, they both received the support they needed.

When you make a gift to the Howie’s House, you’ll help provide this support to countless other transplant families who are anxious, frustrated, and in need of support.

Will you make a gift to help families like Karen and Richard’s during one of the most difficult times in their lives?

 

 

 

 

Six-year-old Amelia has been through a lot since she was diagnosed with Alagille syndrome, a rare genetic disorder characterized by abnormalities to the bile ducts that harm the liver and other parts of the body.

She had heart and kidney surgeries even before her liver started to fail. After a liver transplant in 2016, she developed PTLD (Post-Transplant Lymphoproliferative Disorder) for which she is now undergoing chemotherapy. This complication and treatment means more visits to the hospital.

When she and her family come to Philadelphia for these visits, they stay here at the Howie’s House. On Amelia’s first visit, right after her liver transplant, she spotted the child-sized Adirondack chairs on our patio. It was too cold and snowy to sit there then, but on a return visit in the spring, she was really looking forward to them. To her surprise, the chairs weren’t there!

Amelia happily sits in ‘her’ chair to relax after a long day of doctor’s appointments

Amelia asked one of the staff members, “Where are the little tiny girl chairs?” The staff member replied, “They’re not out there?” Soon, the chairs were back in place and Amelia happily claimed “hers.”

Her mother, Bonnie, says: “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.”

For Amelia, the Howie’s House is a safe and welcoming place in between the “ouchies” of her medical care. For her parents, Bonnie and Brian, it’s an oasis of peace where their burdens are lifted—both financially and emotionally. They are grateful for hot meals cooked by friendly volunteers, cozy rooms and restful surroundings, and access to a whole community of people who truly understand what they’re going through.

“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.

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 Howie’s House is a safe and comforting haven for them. “We don’t lack for anything here,” says Bonnie.

If you visited the Howie’s House this summer, you may have met our former Guest Services Intern, Mya, smiling behind the front desk.

Mya came to Gift of Life Howie’s House looking to support an organization that has done so much for families like hers. Mya received her own precious gift of life—a new liver—and wanted to give back to others on the transplant journey. “I found this position online and immediately knew it was for me,” she says, smiling. “It’s amazing to see the work that’s done here. I would absolutely work here for 40 years if I could!”

Shortly after Mya was born, she was diagnosed with biliary atresia, a disease in which a liver duct is either broken or missing. Her doctors were able to perform a hepatoportoenterostomy, a procedure where doctors sewed a piece of her large intestine to her liver to help it drain. However, this was only a temporary treatment, and Mya and her family knew down the road that she would still need a transplant to live a healthy life.

Mya, right, and her friend at the beach before her liver transplant

“Throughout my whole childhood, I was very different,” Mya explains. “If you looked at me, you could tell something was wrong.” Growing up, Mya suffered from severe splenomegaly, which is an engorgement of the spleen as a result of liver fibrosis. “I looked like I was about six months pregnant. Whenever I played outside or was in gym class, I had to wear a large plastic guard around my abdomen to protect my spleen from rupturing. That was hard, especially as a child, because it makes you very different from your classmates; it makes you the ‘sick kid,’” she says.

When Mya was 11 years old, she caught a stomach bug—something not uncommon—but this time, she didn’t bounce back as she normally did. She was hospitalized, had to use Skype to attend class, and was unable to see her friends. She also lost a significant amount of weight and was given an NG feeding tube that she kept for over a year.

Mya was on the list for 18 months before she received her precious gift of life and spent time in and out of the Children’s Hospital of Philadelphia

Mya, her family, and her doctors knew her liver was deteriorating. She was placed on the transplant list at CHOP and waited 18 months until she received her precious gift of life from a selfless donor.

“It was a terrifying process,” Mya reflects. “I remember looking at myself and thinking that I looked like a skeleton, but I found peace in knowing that there was always an end road. My mom always told me, ‘Thank goodness it’s just liver disease. We know how to fix this, and it will all be okay.’”

Mya got the call on April 9, 2013, which she now calls “the best day of the year.”

“All I wanted in my life was to not be different. I wanted to experience life without limitation and sickness…transplant gave me that and much more,” she says.

The day Mya returned home after her transplant

Mya’s transplant remains an important part of her identity today at 19 years old. “I’m never going to stop being open about my transplant,” she says. “And I won’t ever stop caring about this. I’ll never stop reminding myself how much I have to be grateful for, and I’m never going to feel like I can do enough for the people who saved me. It’s so important to keep in touch with that gratitude and never stop using it to fuel my life. That’s why I’m here [at the Howie’s House].”

Mya helped coordinate guest stays, Howie’s House programming, and offered a smile to everyone who walked through the door

After working here at the Howie’s House, Mya has changed her major to Health Behavior and Promotion and hopes to work with transplant patients in the future.

“Growing up, no one I knew had a connection to transplant. I was the only one, and I felt so alone,” she mentions. “Coming here, I don’t feel alone. You don’t feel like you’re the only one who is going or has gone through this kind of pain. I never had resources like this—it’s a really special thing about the Howie’s House. It’s a whole big family here, full of love, support, and friendship. It’s heartwarming to see how much the guests love this place, and even more heartwarming to have played a role in it.”

Mya and other Guest Services Interns, Celine and Damarah, during the Howie’s House’s 7th birthday party

Mya also wants to write children’s books about getting a liver transplant or what it’s like having a feeding tube, and has thought about starting a blog about nutrition for those using a feeding tube.

“I am definitely going to make sure this experience remains part of my life and my daily awareness,” she adds. “I’ve looked forward to coming to work every day, and to be included in this environment and in [the Howie’s House’s] mission. Getting to know everybody has been so special, and I am so grateful for this incredible opportunity and place that I will never forget.”

Ed Galarza’s been a volunteer with Gift of Life Donor Program since he received a life-saving liver transplant in 2003. As soon as the Howie’s House opened in 2011, he started volunteering here, too. He started out cooking dinners for our guests, checking them in at the Front Desk, and driving them to and from transplant hospitals for their doctor’s appointments. Seven years later, Ed’s still hanging out with us. He volunteers twice a week assisting with upkeep around the facility, performing maintenance work, and is a back-up shuttle driver.

Ed was born in Puerto Rico, grew up in the Bronx, and now lives in New Jersey. He has 2 children, 3 grandchildren, and is a retired Army veteran. He was first diagnosed with liver disease in 1999, but didn’t start to get sick until 2003. Unfortunately, there was no Howie’s House for him or his family to stay in during his transplant journey. His wife had to travel to and from the hospital by herself. He understands the importance of having a safe place to stay during such a difficult journey.

“The Howie’s House is very important,” he says. “It’s all about helping people in need.”

Ed is motivated to give back to everyone who has helped him along his own transplant journey. “I volunteer here to give back to the wonderful people who work for this organization, for my second chance at life, and for those who worked their butts off to help me get where I am today,” he says. “I get more than I give when I’m here. Being in the Howie’s House makes me feel better.”

Ed also enjoys giving back to others who are on their own transplant journeys. “I really like talking with the guests I meet. I can relate to them,” he says. “I’ve been there. I know what they’re going through and what they will go through.”

We’re so thankful for you, Ed. You help make the Howie’s House such a wonderful place!

Jim and his wife, Kim, began their organ transplant journey in October 2014 due to complications with his liver function. He initially declined treatment because he wasn’t feeling sick and wanted to continue working towards his retirement. “There was no indication how bad it was,” Jim says. However, as time went on, Jim’s condition worsened, so much so that he was near death and his doctor recommended he turn to Hospice care. Neither Jim nor Kim accepted this diagnosis, so he began treatment. Towards the end his treatment regimen, his doctor informed him that he would need a liver transplant in order to sustain his life. The doctor referred him to a transplant hospital in Philadelphia where he would be tested and listed for a liver. For five months, Jim and his wife traveled back and forth from Virginia to Philadelphia for appointments.

Kim and Jim Prince in the Howie's House living room.
Kim and Jim Prince in the Howie’s House living room.

 

During this time, the Princes’ planned a trip to visit Kim’s brother who was ill and receiving treatment in a hospital in Pittsburg. They planned to meet up with family friends Peggy and John during the trip, but when they arrived, they learned that John had suffered from a blood clot and was brought into surgery. Sadly, John did not survive and was pronounced brain dead later that afternoon. This was a terrible tragedy for their family, but John’s wife Peggy bravely decided to make the selfless decision to donate her husband’s organs—and she wanted Jim to receive John’s liver.

Shortly thereafter, Jim’s transplant team in Philadelphia flew to Pittsburg overnight to bring the liver back.  After an incredibly unique chain of events and a brave family’s decision, Jim’s life-saving liver transplant surgery was successfully completed.

His story became a hospital favorite across different departments and floors. He stayed in the hospital for almost 12 days and then joined his wife Kim at the Howie’s House for the first month of his recovery. He attributes his strength during recovery to his faith and the Howie’s House’s warm, friendly environment. “Everybody’s so supportive [at the Howie’s House],” Jim says. “This is our house, and our family, too.”

“You never know the importance of how something we take for granted can change a life forever,” Kim reflects. “If you have a life, you can save a life. You never want to lose a loved one, and if there’s someone you can help, you should be willing to help someone else keep a loved one.”

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