heart transplant

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.

Asher, safe and sound in his room at the Gift of Life Howie’s House

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.”

Asher lived the first months of his life in the hospital

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.

Kendra taking care of Asher in the hospital

“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.”

Asher and his siblings

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.”

Asher doing well post-transplant

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.”

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!

 

 

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