Faces of Howie’s House Stories

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:

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“There are a lot of misconceptions in the African American community about organ donation,” Keith Chalmers reflects. “People know very little about organ transplantation and I want to change that.”

Keith’s passion for organ donation awareness started with his own transplant journey about 7 years ago when he visited his family doctor for what he thought was just a bad cough. However, the cough didn’t get better. Over the course of two years, Keith was diagnosed with pneumonia, emphysema, and finally, COPD. Eventually, Keith’s journey led him to be placed on the organ waiting list.

Keith is very thankful to his pharmacist who first introduced him to the Gift of Life Howie’s House, where he stayed for four days in 2013 for testing at the Hospital of the University of Pennsylvania. He was listed for a lung transplant. Keith received his precious gift of life from a selfless donor in March of 2015. Now, he stays at the  House every 3 months for follow-up appointments.

“Without the Gift of Life Howie’s House, I wouldn’t have had a place to stay. I don’t think I could ever repay the folks there,” he says. “Everyone is so polite. If I didn’t live so far away, I’d be there volunteering every day. I’d help drive the van and clean up the house. Whatever I could do, I’d do.” 

Keith is able, however, to volunteer every year during Gift of Life Donor Program’s Donor Dash.

Keith also spends a lot of time educating people about organ donation, specifically in minority neighborhoods. “Knowledge of the entire process is less common in these areas,” he says. “Not many African Americans know what organ donation really means or how it works. It isn’t advocated in the media enough.”

He keeps literature about organ donation in the back of his car, stands on line at the supermarket and asks people if they are donors, hangs banners outside his home, and even sets up a Q&A table outside his house in the summer to engage people walking by. Last Christmas, he helped 50 people register as donors.

He is extremely grateful for his precious gift. “Somebody saved my life,” he says. “Because of that, I’ll be out there, educating one person at a time.”

In 2004, Diana Ortiz battled a virus that left her with an enlarged heart. In 2011, her heart began to fail and she started spending several days each month in the hospital. In 2016, she was given six months to live. Ortiz received a left ventricular assist device, an LVAD, to help her heart pump blood throughout her body. She went back home to Allentown, PA, with her partner, Chris Bolden, and her doctor placed her on the transplant list in September of 2017. Shortly thereafter, Ortiz received her life-saving heart transplant and a miraculous second chance at life thanks to a charitable act by a donor family.

Bolden and Ortiz made the three hour trip to Philadelphia where Ortiz underwent surgery to receive her precious gift. While the surgery was successful, her new heart was weak at first. Doctors placed her back on ECMO for the first month and she fell ill to pneumonia. Throughout the ordeal, Bolden rarely left her side. “I only went home twice,” Bolden said. “I visited the hospital every day. Halloween, Thanksgiving, Christmas. On the days I did go home, my first stop of the day was always the hospital.”

Bolden stayed at the Gift of Life Howie’s House for four months while Ortiz recovered. He had a place to sleep, a place to eat, and people to talk to while he supported his loved one. The Gift of Life Howie’s House provided shuttle service for him and other guests to the hospitals where their family members were being treated in Philadelphia. “The shuttle is a lifesaver for people,” Bolden said. “Drivers drop you right in front of the hospital entrance and people on the shuttle have either been through or are going through the same things as you. Drivers are even willing to point out historical landmarks in the city.”

Our House volunteers drive the shuttle which runs several times a day, assisting guests who do not have cars, don’t feel comfortable navigating the city, and/or can’t afford to pay for gas and parking. “Without the shuttle, it would’ve been more of a struggle,” Bolden said. “Parking my own vehicle at the hospital would have cost almost $100 a week.” This past year, more than 4,600 guests climbed aboard our six-passenger minivan. Unfortunately, there were many trips where guests were turned away because the van was full. The minivan also has limited cargo space for stowing oxygen tanks and wheelchairs needed by transplant patients. Recently, we rented an 11-passenger vehicle to better provide for our guests’ comfort and wellbeing. “The new shuttle is roomier. There’s an overhead compartment and more room to get in,” Bolden said.

As part of our spring campaign, we hope to raise $50,000 to put towards a new, 11-passenger shuttle with a bus-style folding door, low steps, a center aisle, and a raised roof to make trips easier for both drivers and riders.

“Without the House, [Chris] would either be living at the hospital with me, or couldn’t come back and forth,” Ortiz said. “I never worried because I knew he had a place to stay.”

We hope you consider supporting our campaign for a new shuttle. Your donation will help guests like Chris Bolden travel back and forth to visit their loved ones and leave them with one less thing to worry about. Click below to make a donation:

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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.”

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.

 

 

“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

“We are indescribably grateful for the Howie’s House and how positively it has affected the outcome of our situation. Without the Howie’s House, it would have been very difficult for Ash to be with me every single day, both financially and logistically. Without her unyielding emotional support and care, I wouldn’t be as well off as I am today. Guaranteed. And without the support and the positive environment of the Howie’s House, Ash wouldn’t have been as available and emotionally present for me. The Howie’s House truly is a ‘home away from home’!” – Bobby Adams

On March 20, 2015, Bobby and Ashley Adams of Bordentown, NJ were newly married and Bobby had just received his precious gift of life, a double lung transplant. Yet there were many events that led to these miraculous events.

Bobby Adams grew up with the privilege of enjoying a healthy, care-free lifestyle. He had always enjoyed doing things outdoors, such as camping, hiking, snowboarding, and mountain biking. In January of 2015, that came to an abrupt and unexpected halt. Bobby started feeling very sick and, with symptoms only worsening, Ashley took him to the local emergency room. Neither of them had any idea that Bobby would be hospitalized for the next three and a half months – the majority of which were in critical condition.

When Bobby was first admitted to the hospital, he was quickly intubated and placed on a ventilator for life support. His lungs were failing, fast. The cause of his lung failure was unexpected.

 

After being diagnosed with Acute Interstitial Pneumonia and ARDS, Bobby was placed on ECMO, an additional type of life support, which oxygenates the blood. He was then placed into a drug-induced coma while doctors worked around the clock to try to save his life. While in this coma, doctors broke the news to Ashley that Bobby’s only chance at survival would be to receive a double lung transplant.

Ashley felt like she was living a nightmare. Nothing felt real. Within a few days of being informed about the need for Bobby to receive a transplant, a social worker at the hospital told her about Gift of Life Howie’s House. She didn’t know much about the Howie’s House at the time, but she knew she was grateful to not have to pay thousands of dollars for a hotel room in the city with her mom, or sleep on a friend’s couch anymore. The Howie’s House was a very affordable alternative. What she quickly learned, however, is that besides not having to worry about the expense of lodging, the Howie’s House also provided her with hot meals, cooked by people who really wanted to help, rides to and from the hospital, and the opportunity to meet some amazing people who understood the frightening reality of what Ashley was dealing with; including House guests, volunteers, and staff.

The 2015 Gift of Life Howie’s House President’s Reception took place the same day that Bobby was listed for a lung transplant. At that time, Ashley and her mom were in attendance at the reception as Howie’s House guests. For this year’s President’s Reception – honoring the Founders’ Circle and 2015 Family Circle members – Ashley and Bobby were invited back to the house – not only to share their incredible story with event attendees, but also to celebrate their one year wedding anniversary and Bobby’s first ‘Transplant-a-versary’. They were honored to be there with some of the most generous supporters of the Howie’s House and to share the miraculous conclusion of their incredible transplant journey.

Just two days after being listed for a transplant, Ashley and Bobby decided to get married right then and there, bedside in the hospital ICU. Moments before their wedding ceremony, doctors came in to the room to give them the incredible news: they had a prospective donor for Bobby! After everything that had happened in the months leading up to this point, for two such miraculous things to happen in one day seemed to Ashley a sign that everything would be okay after all.

Ashley and Bobby couldn’t have been happier on that particular day in March of 2015. Within a few days, Bobby had a new bride, new lungs, a new life. Bobby is now back to work, grateful for a little more normalcy and enjoying many of the things he still loves to do. All the while, the newlyweds are incredibly grateful for Bobby’s donor and his family for making the selfless decision to choose organ donation, which allowed for Bobby’s life-saving transplant. And the couple is also indescribably grateful for the Howie’s House and how it positively affected the outcome of their situation – and which is only made possible by all of its wonderful supporters, especially its generous Founders’ and Family Circle members.

 

 

 

A New Definition of “High School Sweetheart”

“I look forward to that time when I can come back here for dinner and sit with my new friends that I have made. I don’t know how I would have made it through these past three months without this place…” – MaryAnn Finlay

Their love story started in high school art history class and continued 30 years later when MaryAnn discovered Joe needed a lung transplant to survive.

After dating on and off in high school, Joe Finlay was called away for his work in the United States Army. Life intervened and sent MaryAnn and Joe in different directions. Besides the occasional phone call, they lead very separate lives with their individual work and family.

 

Fast forward 30 years, MaryAnn, living in New Jersey, had a dream where she saw Joe with an oxygen hose in his nose. She decided to call Joe, who was living in Virginia at the time, only to find that Joe really was sick. He had been diagnosed with Pulmonary Fibrosis, an incurable disease.

“I told Mary that she was not going to have much of a future with me—the doctors told me I only had two years to live,” said Joe.

After talking daily, they decided together, “No more missed chances, and no more regrets. Life is too short. Nobody knows what is going to happen today or even tomorrow.”

They were married that same year. “We said no more wasting time. We are soul mates.”

After the couple married, Joe‘s condition worsened and in 2013 he was diagnosed with a bacterial pneumonia. He also had developed bladder cancer—meaning he had to wait an additional two years before being placed on the waiting list for a transplant. And as those two years progressed, the worse his condition became.

The couple eventually traveled to Philadelphia for preliminary transplant testing. They were thankful to be able to stay at Gift of Life Howie’s House during those long two weeks of testing –and MaryAnn especially appreciated that she could be by her husband’s side to care for all his needs. “He was very bad at that point where every five minutes I was running to him with an emergency breathing bag.” MaryAnn explains.

Acting as the permanent caregiver to her husband, MaryAnn says, “It is important to know that the pain and suffering that the caregiver goes through is just as bad as the pain and suffering that the patient goes through. Even though we are not going through the physical aspect, it’s the emotional aspect—that when I see this man who was so strong and could do everything, is now deteriorated to where he cannot even pull the covers over his shoulders. I would just cry myself to sleep.”

After Joe and MaryAnn returned home from Philadelphia for that initial testing, Joe’s conditioned declined drastically. MaryAnn rushed Joe to their local hospital and quickly learned that, other than hospice, there was nothing that they could do. So MaryAnn drove Joe back to the hospital in Philadelphia, where he was admitted immediately. He would not leave the hospital until he had his transplant.

IMG_0679Joe received his gift of life, a lung transplant, just two weeks later on March 4th 2016. MaryAnn was able to be by his side at the hospital every single day, thanks to her “home away from home” at the Howie’s House.

“It is a hard journey for all transplant patients—it’s painful and it’s hard. And if I can stress enough—they must have a support system. I was there [at the hospital] every single day. My focus was on Joe and getting him through this hard time,” explains MaryAnn.

Although Joe’s memory is a bit cloudy from his post-transplant complications, he remembers MaryAnn and her smiling face every day while he was in the hospital. Joe says “She came every day. I told her, keep bringing that beautiful smile and everything will be alright. And she did.” He remained at the hospital for two months following his transplant.

During those long months while Joe was hospitalized, MaryAnn found comfort at Gift of Life Howie’s House. “I don’t know how I would have made it through without that place. I would take the shuttle every morning, be there from 8 o’clock to 4 o’clock at night, come back and eat my dinner.”

MaryAnn recounts how when she first arrived she would sit alone in the dining room decompressing from a long day at the hospital. However, as the weeks turned to months, she started making friends with all her fellow guests. “We would all join together and tell each other stories of what was happening with our family members. Sometimes we would cry together. I met wonderful friends here! I started to look forward to that time when I could come here at dinner and sit with my new friends that I have made here. I wouldn’t want to stay anywhere else.”

In May of 2016, MaryAnn and Joe Finlay were finally able to return home to New Jersey. They say this experience has made them even stronger – as individuals, and as a couple.

 

Are you – or someone you know – in need of resources specific to caregivers of transplant patients, like MaryAnn? Visit our Caregiver Lifeline page for more information to help guide you and your loved ones through the transplant journey. Or check out our new Transplant Caregiver Support Group on Facebook by clicking here

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