transplant patient

Asher, safe and sound in his room at the 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.”

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 lived the first months of his life in the hospital

“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.

Kendra taking care of Asher in the hospital

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 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.”

At the 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.

Asher doing well post-transplant

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.”

Lauren Anello, past Howie’s House guest

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 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 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 Howie’s House, the staff made it not scary. They welcomed us with open arms.”

During her stay at the Howie’s 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 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 Howie’s 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!

 

 

Karen and Mark Weidner sitting in the living room.
Karen, left, and her husband Mark, right, sitting in the Howie’s House’s living room.

Last Christmas was difficult for the Weidner family. A fake Christmas tree sat in their living room undecorated. One wreath hung on their front door. The family couldn’t light a fire they could gather around because they feared Karen would start coughing again. “I didn’t even know if I could get up to celebrate Christmas,” Karen says as she sits with me in the living room at the Howie’s House.

Karen Weidner was waiting for “the call” that the precious gift of a new set of lungs was available for her. On a plane trip to Italy, Karen developed a cough that never went away. After a biopsy and bronchoscopy, she was diagnosed with hypersensitivity pneumonitis—inflammation of the lungs caused by an allergen. Karen’s doctors could not identify specifically what was triggering this cough, so she and her husband Mark purchased air filter cleaners to clean their environment as much as possible. One of their biggest fears was having to get rid of their dogs.

“My spirits have been nothing but high here. We’re seeing doctors three times a week. I don’t know what we would’ve down without Howie’s House.” — Karen Weidner

Most days, Karen spent time between her bed and the couch because that was all she could do. “I would pick up the phone, say 2 sentences, and start coughing,” she recalls. Karen would panic when she’d have to go upstairs to bed each night. Mark had to place a chair at the top of the steps so she could sit down and catch her breath after climbing them. “I was miserable knowing I had to do this every night,” she says. When she made it up the stairs, it would take her an hour to put on her pajamas, brush her teeth, and wash her face.

Karen wears a mask to protect herself during her transplant journey.
Karen wears a mask to protect herself during her transplant journey.

Karen also lost a significant amount of weight, so doctors gave her a feeding tube. That’s when her friends could tell something was really wrong. Her doctors couldn’t come up with a solution for her—medication or a special diet did not seem to be helping. Finally, they placed her on the transplant list and suggested she go to a transplant center hospital in Philadelphia.

When she arrived in Philadelphia, Karen was immediately admitted and given a second evaluation where she was found to be sick enough to need a transplant and well enough to withstand the surgery. She spent about five days in the hospital until she was cleared to continue waiting at her home in northern New Jersey.

The Ultimate Christmas Gift

On Christmas Day, Karen received her call at 3:00 in the morning. Her doctors said a generous donor had selflessly donated a set of lungs they called a perfect fit. The Weidners made it to Philadelphia by 6:30 that morning. “I didn’t see another set of headlights for 25 miles,” Mark says. When they arrived, 30 nurses were waiting behind the counter. “I thought they were throwing a party for me,” Karen says.

Karen during her transplant journey.
Karen during her transplant journey.

Karen’s surgery was successful. She stayed in the hospital for 17 days post-operation and then came to the Howie’s House with Mark after they were referred by their hospital’s social worker. Karen claims the Howie’s House is one of the reasons she’s made it through her recovery.

“My spirits have been nothing but high here. We’re seeing doctors three times a week. I don’t know what we would’ve down without this place,” Karen says.

“It’s a sanctuary. The services make life easier for you.” Mark says.

Karen, left, and the young girl from her church who wrote her letters during her recovery.
Karen, left, and the young girl from her church who wrote her letters during her recovery.

When asked about the future, Karen says: “I have a lot of goals—I want to see my kids more, take one last shot at my business. I want to walk my last daughter down the aisle.”

Both Karen and Mark agree talking with other guests going through similar experiences has helped them get through this difficult process. “I want to be everyone’s cheerleader here,” Karen says.

Many people in the Weidner’s community have heard about their struggle. One young girl from their church asked Santa to bring Karen lungs. She also wrote Karen a letter wishing her a successful recovery.

“We’ve been blessed unbelievably,” she says.

 

 

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