Lung Transplant

Tim and his wife, Donnamarie, in the Howie's House dining room.
Tim and his wife, Donnamarie, in the Gift of Life Howie’s House dining room

When Tim Adams was diagnosed with idiopathic pulmonary fibrosis, his pulmonologist told him he only had one year left to live.

However, three years and a new lung later, Tim is doing very well.

Tim came to seek life-saving transplant treatment at Temple University Hospital in Philadelphia. His wife, Donnamarie, stayed at the Gift of Life Howie’s House for two months during his treatment and visited him every day.

“Having my wife nearby was especially helpful to my recovery,” Tim says. “Having a place for your family to stay while having major, life-saving surgery is an incredible blessing.”

Tim and Donnamarie are from southern New Jersey. If it wasn’t for the House, they would’ve had to rent an apartment—a huge financial strain.

Tim was able to join Donnamarie at the House after he received his precious gift of life from a selfless donor. Having an affordable place to stay in Philadelphia was a huge help as he went back and forth from the hospital for rehab visits. He and Donnamarie still travel to Philadelphia for Tim’s follow-up appointments.

“The Gift of Life Howie’s House, the staff, and its offerings helped us so much,” Tim says. “We’ve met and befriended other lung transplant patients from around the country. We keep up with each other.”

At the House, it’s easy for guests, whether they’re a patient or caregiver, to connect with each other. Sharing stories and words of wisdom with people on the same journey, and with those who’ve had similar experiences, can relieve their worries and stress.

Tim calls his post-op time at the Gift of Life Howie’s House his “reintegration to society.” He explains: “I was able to settle down from ‘pure’ hospital life and be around other people whom I once avoided to prevent getting sick because of my suppressed auto-immune system. At the House, other people understand post-op patients. You can come back into the world and still have your safe space.”

Now, one year post-transplant, Tim tells everyone he can about the Gift of Life Howie’s House and how it has helped him. He also joined the Board of Directors of the 2nd Wind Lung Transplant Association dedicated to supporting lung transplant patients.

“I tell everybody I know about the House. If I could, I’d run an ad in the NY Times. Everyone should know about Gift of Life Howie’s House.”

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.”

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.

 

 

“Thank you so much for making my mother and me feel welcome at Gift of Life Howie’s House.

My life depends on a double lung transplant. We’re here at the Howie’s House waiting and hoping for “the call.””

I was just 33 when I got sick. In the years it took to get my diagnosis of Diffused Systemic Scleroderma with Interstitial Lung Disease, I had to quit my job and all my financial resources were depleted. The Howie’s House means my mother, who is my required caregiver, and I are not living in hotels and out of suitcases. It provides us with a home while away from home and a sense of stability during this very uncertain time.

It’s clean, quiet, comfortable, and beautiful. There are home-cooked meals every night, laundry facilities, a shuttle, and other families just like us who are waiting and hoping, too.

We are so grateful to people who support the Howie’s House “home” so we can focus on being ready when my call comes.

Will you help twice as many families like mine by making a gift during the Matching Challenge?” – Jennifer Herrmann

To help families like Jennifer’s who rely on the Howie’s House during a most difficult and uncertain time in life, a generous friend has offered a $50,000 Matching Gift opportunity. Like you, this caring friend wants every transplant family to have access to an affordable place of rest, delicious home-cooked meals, and a warm and caring community of support. So every gift received prior to the December 31st deadline will be matched dollar for dollar, ensuring that more transplant families will experience a “home away from home” at the Howie’s House.

 

It was 33 years ago when Cindi and Russell Westendorf met at the Hospital of the University of Pennsylvania (HUP), purely by coincidence. Now, happily married with 3 grown children, they found themselves back at the same hospital, but this time for Russell to receive a life-saving lung transplant.

Prior to Russell and Cindi meeting, Cindi was a graduate student in Philadelphia studying counseling and creative arts therapy. Russell had gotten into a very serious motorcycle accident and was transferred to HUP, a hospital close by where Cindi was studying, to receive bone grafts. He stayed there for many months during his recovery. Cindi’s family, who knew Russell’s family, recommended she stop by his hospital room for a visit as she was already in the area – and they have been together ever since.

“I think one of my biggest reliefs was finding the Gift of Life Howie’s House, to be honest with you. That is when my heart felt better because I knew my wife was going to be okay.” — Russell Westendorf

After they got married, they settled in Colts Neck, NJ and had three sons. Russell worked as a stone and tile setter. A union man at heart, Russell loved his job, especially the fact that his hours allowed him to be home with his kids and his wife. However, it was very tough on his physical health and Russell developed a serious lung disease.  Surrounded constantly by dust, insulation, and other hazardous materials, “it physically beat me up. Lung disease was part of what I did. It took some getting used to, but slowly my health got worse until suddenly I’m using 17 percent of my lung capacity, and started to have to use the oxygen.”

She is My Rock

Because of his illness, Russell was listed for a lung transplant in 2014. All too familiar with caregiving and support, Cindi, an art and trauma therapist, has been right by his side throughout his entire transplant journey. Russell could not be more grateful for their partnership, “She is my rock and probably the most giving person I’ve ever met in my life.”

After two years on the transplant list, the couple was getting into bed one night about a week before Christmas when they received the call that donor lungs were available. They rushed to Philadelphia, over 70 miles from their home at 2:30 in the morning and, upon arrival, Russell went right into surgery.  He awoke on December 19th with the gift of life – a new pair of working lungs – thanks to someone’s selfless decision to say yes to donation.

After the transplant surgery, Cindi was able to stay at Gift of Life Howie’s House while her husband was in recovery. Russell said, “I think one of my biggest reliefs was finding the Howie’s House, to be honest with you. That is when my heartfelt better because I knew my wife was going to be okay.”

On Christmas morning, a few days after the surgery, the doctors moved Russell back into the ICU due to a complication. Cindi, who was staying at the House, got a call from the hospital explaining the situation. “I got up, so startled. I didn’t even think about it being Christmas but I woke up, got dressed, got myself together and opened the door and there were all these gifts [from the staff]. It was really special; it’s just a little thing like that that made me feel like we were in the right place at the right time.”

Recovery at Gift of Life Howie’s House

Russell recovered from the complication and was released from the hospital a few weeks later. He was then transferred to the Gift of Life Howie’s House to continue his recovery. After hearing so many wonderful things about the House from his wife, he had high expectations upon arriving: “When I got here, I was totally blown away. Everybody here is just wonderful, very supportive. The thoughtfulness that went into planning this place and the relief of having meals is unbelievable. And I love the fact that you can sit around and share experiences with other transplant patients.”

Though the couple remarked on many wonderful aspects of the House, Russell’s favorite, in particular, was the Home Cook Heroes program. This volunteer-based program invites people from all over the community to come to the House to prepare a home-cooked meal for Gift of Life Howie’s House guests. Russell especially enjoyed the variety of nutritious meals, “It’s all been fabulous—the whole concept that people do this for us is so nice. It has really helped me open up my pallet and try different things that I normally wouldn’t,” said Russell. “I wouldn’t even eat salad at home and now I am trying new things, like guacamole.  It’s given me a new lease on life – healthy eating is important for my recovery.”

Russell and Cindi are thrilled to have a place where their sons can come for visits, a place where they can meet new families and volunteers and continue trying new foods. But above all, they are relieved to have a place where they can relax and work on getting Russell’s physical health back to normal.  Russell says, now more than ever, they will both continue to live by their personal motto: “Be Positive—that’s my blood type.”

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