transplant patient
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.”
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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