Howie's House Blog

Families traveling from far away for medical care face numerous concerns while navigating the challenging transplant journey. For those coming from out of town, feeling safe and secure while in an unfamiliar environment such as a large city, is essential for their peace of mind.

At Gift of Life Howie’s House, ensuring guests feel safe during their stay has always been a top priority and an integral part of the overall mission. That’s why multiple measures are in place to make sure guests feel as comfortable as possible when walking through the House doors.

From the secure perimeter gate that encloses the facility to the overnight security guards and surveillance system, the goal is to ease the mind of the families who stay at the House as soon as they arrive.

As part of our commitment to providing the safest environment possible for guests, House staff continuously assess our systems for the most up-to-date improvements.

This year, an upgrade to the existing security camera and public announcement system is planned, and the House is calling on the support of the community to help complete the project in 2024.

Your support of this important project will help families like the Bachers, who said they relied on the safety and security that the House provided during their stay.

Mike Bacher was diagnosed with cardiomyopathy over 16 years ago, a heart disorder which he contracted from a viral infection. Mike and his wife Jo-Ann live in Lewes, Delaware, a rural beach community over 2 and half hours away from Philadelphia.

Heather Bacher, Mike Bacher, Jo-Ann Bacher, and Melissa Rodriguez

For years, Mike managed the disease, until his condition started to quickly worsen at the beginning of 2022. Mike’s doctors suggested he get listed for transplant, so they made the journey to Philadelphia to begin his evaluation.

Traveling into the city from a rural setting, they didn’t know what to expect before arriving to the House. Mike shared that as soon as he saw the facility, he knew he made the right choice.

“It was a huge relief. I couldn’t have imagined anything nicer and safer. I was pretty apprehensive about coming into Philly at all, and I didn’t know what area we were going to be in until we got there,” Mike said. “We were pleasantly surprised to find what a nice place it was.”

“At first, I noticed all the security cameras inside, I wasn’t used to the place and didn’t know anyone so that made me feel very secure. It was like being in a hotel…even pulling into the gate and not having to worry about where I was going to park my car made a huge difference.”

After Mike was admitted to the transplant waiting list, he didn’t have to wait long. Only 11 days after being listed, Mike received his life-saving heart transplant thanks to an organ donor hero.

Mike at the hospital post-transplant, waiting to be discharged
Mike Bacher with his two daughters, Melissa Rodriguez (left) and Heather Bacher (right), waiting to be admitted at the hospital

While he recovered in the hospital, Jo-Ann remained at the House to stay close to him while their two daughters, Heather and Melissa, would visit periodically to provide support.

“This facility was a lifesaver, providing a safe environment for my family to allow them to visit through this whole ordeal. I spent a total of 56 days in the hospital, and they were there through almost all of that,” explains Mike.

Mike’s family was so grateful for the services the House provided that they have since given back to the mission by hosting a successful Facebook fundraiser, serving a meal through the Home Cook Heroes program, and now support the annual fund!

Post-transplant, Mike and his family have been traveling as much possible, including a recent trip to the Floridia Keys that had been rescheduled twice due to his health complications. Jo-Ann and Mike say they are trying to travel as much as possible and make the most of every day.

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. 

Tom Fennell and his wife, Alice, traveled almost 1,000 miles from Iowa to Philadelphia hoping Tom would receive a life-saving heart transplant. Far from home, they found comfort and support at Gift of Life Howie’s House, which recently celebrated its 12th anniversary.

 “Howie’s House gave us a safe place to stay, dinners, and camaraderie. It was the complete package,” said Tom. “We were able to connect with other transplant families and it helped us on our journey.”

 Tom’s journey was unusual. Many transplant centers declined to accept him as a patient because of his age. Temple Health in Philadelphia welcomed Tom and, at 74, he became one of their oldest heart recipients.

 Tom and Alice stayed at Howie’s House many months post transplant but were finally able to return home recently. They rang the Chimes of Hope at the House to celebrate (click here for video).

 Thanks to a generous donor hero and caring support at Howie’s House, Tom and Alice can get back to doing the things they love. They have already planned a family vacation at their lake house and hope to travel to Mexico next year.

Donna Nelson with her husband, Dana Nelson, a lung transplant recipient

At Gift of Life Howie’s House, guests are provided with a private bedroom and bathroom that comes equipped with many of the necessities that families rely on when away from home. Many of those guests, however, experience limited mobility due to significant physical challenges that come with transplant and request rooms that are more accessible

Approximately 25% of guests make these requests. Unfortunately, many have to wait for a more accessible room to become available.

“You never know when you go somewhere if it’s going to be accessible, so knowing that we had this room where he could maneuver was a relief. It allowed him to have his privacy and independence, and I could have a little bit of free time as well. Even if it’s ten minutes where I could read a book while he showers, it makes a difference,”

– Donna Nelson, Past House Guest

Out of 32 guest rooms, only 5 have bathrooms that are equipped with walk-in showers. For some guests, navigating over the wall of a tub can be incredibly challenging or even impossible. Many patients require the use of a shower chair, which is also difficult to maneuver in an already tight space with a wet surface, like the bathtub.

Replacing a bathtub with a walk-in shower makes getting in and out much easier on both the patient and the caregiver. Guests with limited mobility do not have to worry about navigating over the wall of the tub, and those who require the use of a wheelchair have easier access inside of the bathroom and can transfer to a shower chair more smoothly.

Learn more about our campaign in our Spring 2023 Newsletter.

Spring Campaign 2023

Support the construction of four new, more accessible showers at the House.

Caregivers from our virtual transplant caregiver support group provided insight on what they’ve learned from their experiences, as well as suggestions for other caregivers who are new to the process.

Here’s what they said:

Learn pre- and post-transplant expectations and responsibilities. Create lists, schedules, and agendas with the transplant patient. Review these lists with your medical team to develop a sense of confidence in your role and responsibilities as a caregiver.

Ask lots of questions and take notes. Keep a journal and bring it to all appointments, labs, and meetings. Write down the answers to your questions so you can refer to them later.

Be an advocate. You will quickly become an advocate for both yourself and the patient. Keep your patient’s healthcare goals in mind while navigating interactions with the transplant team.

Keep a bag packed. Assemble an overnight bag for both you and the patient in the event of an unexpected hospitalization. This bag can include extra clothing, as well as a list of things you won’t want to forget, such as electronics and medication.

Transplant is multidimensional. It impacts not only the physical health of the transplant patient and caregiver, but also the emotional and spiritual health of you both. Prioritize self-care whenever possible.

This process is a rollercoaster. It has many highs accompanied by lows. You will likely experience feelings of hope, fear, excitement, and everything in between. Find ways to connect to other transplant caregivers to share these feelings.

It will require a lot of flexibility and communication. There are times that the transplant process may not go as you expected. Keeping an open mind and remaining adaptable will help to cope with these changes.

Find things, places, or people that keep you grounded and give you perspective. As a caregiver, it can be is difficult to remember life beyond treatment and transplant. Try to find distractions and enjoyment outside of this experience.

Find something every day that makes you laugh. Participating in activities or spending time with people who bring you joy can support your mood, health, and decrease the chance of burnout.

Remember that transplant is a marathon, not a sprint. This is a journey that doesn’t end with surgery. It is a commitment that involves ongoing support, obstacles, and care. Supporting your own needs is a critical part of avoiding burnout and navigating your ‘new normal.’

If you’re interested in connecting with other transplant caregivers to hear their stories, share your own, and experience a sense of community, join the monthly support group here: GiftofLifeHowiesHouse.org/upcoming-support-groups/

Julie and Joe Wolfer on the Gift of Life Howie’s House patio

Like many guests of Gift of Life Howie’s House, Julie has stayed here on multiple occasions. Unlike other guests, however, Julie has stayed here as the primary caregiver for two different family members, on two separate occasions.

Julie first came to us with her husband Joe in 2019 while they were awaiting an evaluation for a lung transplant. Joe had been diagnosed with Idiopathic Pulmonary Fibrosis back in 2011. Fortunately, he was asymptomatic for many years and was able to continue to do the things he loved like hiking, cycling, and cross-country skiing.  However, in January of 2019 his health began to decline very quickly.

Joe on a walk outside the Howie’s House

Joe was in need of a lung transplant, however, because of certain factors like his age, they ran into complications with getting listed. As Joe’s health began to worsen, the need for a transplant became more urgent, so Joe and Julie traveled to Philadelphia and checked into the House where they would stay during their pursuit of a life-saving transplant.

The Gift of Life Howie’s House became a respite for the couple during a very challenging time. 

“I look back at that time at the House almost like a little vacation,” says Julie. “I felt like I was being waited on. Dinner was cooked every night, we would come down for breakfast and sit on the patio. I would go for a walk and discover the different areas in Philly. It was such a pleasant place to be.” 

While staying at the House, one of Joe’s sons was able to visit to celebrate Joe’s birthday, and they even had a past exchange student from Denmark fly in to stay with them. These were very special visits as it would be some of the last times that Joe would be able to spend with his loved ones.

By the time Joe was able to get an evaluation and get listed on the transplant waiting list, his condition was critical. Unfortunately, the call for new lungs did not come soon enough, and Joe lost his battle with IPF shortly thereafter.

After Joe’s passing, both his sons were able to stay at the House with Julie, and she said having that family support was so important during such a difficult time.

Joe’s younger brother, John, also had been diagnosed with IPF, but was asymptomatic like Joe had been early on in his diagnosis.

“John came up for Joe’s memorial service, and it really hit him that this disease was serious,” says Julie. Having been down the same road with her husband, Julie told John that as soon as he started showing symptoms that he should go to Philadelphia to Joe’s same transplant center. John followed her advice and started seeking transplant care soon after.

John’s wife has various health and mobility issues, so she was unable to be his caregiver. As all of John’s kids lived far away and had families of their own, so Julie selflessly decided she would step in to be his primary caregiver, a decision she made only 6 months after her husband had passed away.

Julie with her brother-in-law John at the Gift of Life Howie’s House

Thankfully, deciding to see a doctor early was the right decision, and John received his gift of life in August of last year. Both Julie and John stayed at the House while he recovered and have been back twice for post-transplant check-ups.

While staying at the House, Julie took advantage of many of the services we have available for caregivers. “One thing that was really an anchor for me was the support group I attended,” she explains. “I learned things in the support group that helped me a lot while I was going through the post-transplant process with John.”

Volunteering to be a caregiver again so soon after losing one’s husband is no easy task, but Julie says that this was something she needed to do.

“A lot of people have said to me, ‘How can you go through this again after losing your husband?’, and it is hard, but no one else in John’s family had the ability to do this for him,” says Julie.

It gave me a chance to complete the journey that I started with my husband that was so abruptly stopped, I felt like I got to see it through, and that seemed important for me to do.”

Julie and Joe’s Family

Both John and his wife lived with Julie during his recovery, and Julie juggled her time between caring for the couple and looking after her mother, who had recently had a stroke. John is now doing great and has moved into a new home in New Hampshire with his wife. Understandably, Julie says she is excited to have some time to herself.

“I’m just looking forward to getting back to my life and seeing what my life is going to be like. I just want to get back to taking care of myself and figuring out where my life goes from here” she says.

Julie’s journey has been a difficult one to say the least, but she asserts that “although it’s not always easy, I’m pretty good at staying in the moment and not looking at the whole picture every day.” She adds that she is so grateful to have had a familiar place to come to during a time of such uncertainty.

“Gift of Life Howie’s House is really a godsend. I feel like I’m coming home when I come there.”

Many transplant patients and caregivers will miss out on holiday traditions, time with friends and family, and normal self-care practices due to the pandemic. This can cause increased feelings of isolation and stress during an already stressful time.

Self-care is critical during this time. Below are a few suggestions on how to manage the stressors you may face this season and ways to fight the winter-time and pandemic blues!  

Prepare:

Prioritize Self-Care:

Connect:

RESOURCES: If you or someone you know needs additional support, please utilize and share the resources below:

By Faith Osbourne, MSW
Gift of Life Howie’s House Social Worker

Maggi and George at the Gift of Life Howie’s House

For New Jersey natives, Maggi and George, their life turned upside down 7 years ago when Maggi was diagnosed with Idiopathic Pulmonary Fibrosis after a respiratory flare-up she had while snorkeling in Aruba. They were told that the disease was progressive, had no known cure, and would cause permanent damage in her lungs as time went on. 

This news was a huge blow to the couple, who had just a year and half before and many of their favorite activities like snorkeling, kayaking, traveling, golfing, and hiking now seemed impossible.

For the next 7 years, Maggi would have to carry oxygen everywhere she went, go to check ups every 6 months, attend pulmonary rehab sessions, and prioritize living a healthy lifestyle in the case she would need a transplant. Despite all the challenges, Maggi and George remained positive and didn’t let her disease define their life. “I bought a mobile oxygen tank and we used it go everywhere… We traveled all over Italy and France, and even went on a cruise to Alaska. I was going to keep living my life.” says Maggi.

Maggi with her great nephew, Brian, at Disney World

Maggi also was dedicated to staying up to date on the science around her disease and would participate in studies to help further the development of a cure. Maggi, who is one of 14 siblings, also has an especially unique case, as the disease runs in her family. She has two siblings who have been diagnosed with the disease and two more who could have had it but died before they could be diagnosed.

“I wanted to be on the forefront of what science was doing because science was moving fast,” she says. “My journey was to have an outcome that would save my life, whether it be getting a transplant or finding a cure.”

A family photo of all 14 siblings and their mother

Maggi and George stayed at the Gift of Life Howie’s House for the first time back in 2018 during a pre-transplant appointment. Maggi heard about us through her Pulmonary Fibrosis support group which she co-leads with another Gift of Life Howie’s House guest.

Little did they know the impact the House would make on their transplant journey.

Even though Maggi was optimistic in the development of a cure, her condition was getting worse the longer she waited. So, in the spring of 2020, right in the heat of the pandemic, both her and her doctors decided it was time to start the process of getting on the transplant waiting list.

Within two months and after several evaluations, she was added to the waiting list for a lung transplant. Two months later, Maggi got the call that her lungs were ready.  

Maggi and George both knew they would have to stay in Philadelphia for an extended period of time post-transplant, and they found comfort in knowing they had a safe place to call home while she recovered.

Maggi’s surgery went off without a hitch and she was out of the hospital in just 12 days, which is much shorter than the usual post-transplant stay. While Maggi was still in the hospital, George stayed at the Gift of Life Howie’s House and was able to visit her while she regained her strength.

Maggi on the Gift of Life Howie’s House patio

Maggi has now joined George at the House and will stay here while she continues the rest of her recovery. They have made themselves at home here, and appreciate all the amenities we offer, especially during the pandemic. “The House provides you with everything that somebody would need… and it’s immaculately clean, you just have such a sense of safety here because you know that things are being taken care of,” says Maggi.

Maggi says that one of her favorite parts is that, despite the visitor restrictions, the couple were still allowed to visit with Maggi’s daughter, son-in-law, and two of their grandkids outside on our patio. George and Maggi have three kids and four grandkids between the two of them and enjoy keeping in touch by weekly Facetime and Zoom calls.

Maggi and two of her granddaughters, Olivia (left) and Riley (right), at the Paper Mill Playhouse

George, as Maggi’s primary caregiver, enjoys cooking and can often be found preparing meals for the two of them in our kitchen. During the pandemic and while caring for Maggi, he has had to continue to run his mechanical contracting business and has been using our library as an office. “It’s beyond comfortable here. The fact that I can walk 12 steps to the library and do my work in the morning makes things easy,” says George.

George cooking in the Gift of Life Howie’s House kitchen

George also has taken advantage of our Caregiver Lifeline Program by attending our support groups and referring to the resources available on our website. Overall, they both say that the best part about the Howie’s House is the people they have met here.

“There is a comradery here because you meet and make friends with other families while you’re eating dinner that are going through the same situations,” says Maggi. “There is such a diversity of people you meet here, you really get to hear all different types of stories” adds George.

Maggi, an avid kayaker, says she is the most excited to get back to kayaking post-transplant. The couple are both looking forward to golfing and traveling again, and have plans to travel to Spain, Ireland, Portugal and Scotland as soon as the pandemic is over. Most of all, the couple is looking forward to spending more time with family, getting home to their house in New Jersey and enjoying many more adventures together, which is all made possible by the generous donor who gave Maggi a new lease on life.

Maggi and her family at the 2018 Pulmonary Fibrosis 5k Walk
About the Gift of Life Howie’s House Gift of Life Howie’s House serves as a “home away from home” for transplant patients and their families by providing temporary, affordable lodging, and supportive services to those who travel to Philadelphia, Pennsylvania for transplant-related care.

Click here for information on ways to support the mission of Gift of Life Howie’s House.

From a young age, Kirby was always active. Born in Memphis and raised in Mountain Lakes, New Jersey, she participated in many sports including dance, gymnastics, figure skating, track and field, diving, rowing and cheerleading. Kirby accomplished a dream of hers by qualifying for the 84’ Olympic trials for gymnastics, something she had been training for since the age of 10. 

However, Kirby began experiencing health complications which forced her to spend less time participating in the activities she loved. She even had to stop working. Kirby eventually found out she would need a life-saving kidney-liver transplant to survive.

Kirby and her husband Scott packed up and traveled from their home in New Jersey to Philadelphia to receive treatment at Einstein Hospital. She was admitted on June 3rd, her birthday, and was quickly put on the transplant list. She and Scott were hopeful that there she would receive her life-saving gift and the help they were both searching for.  

While Kirby was hospitalized, Scott stayed at the Gift of Life Howie’s House, which was recommended to him by his transplant social worker. Kirby soon received her precious gift of life. After a successful surgery, Kirby remained at the hospital for one month after her procedure and then joined Scott at the House for a total of six weeks.   

“The staff members at the Gift of Life Howie’s House were always, happy, smiling and cheerful,” Kirby says. “When I arrived tried and weak in me wheelchair, they already knew my name and had everything I needed ready. It was peaceful, no beeping sounds from monitors and no unscheduled nurse visits at all hours of the day. I felt like I could exhale. I felt like I was home.”

Scott and Kirby loved the comfort of the House and the tremendous support they received. Scott would often attend the support groups hosted by the Gift of Life Howie’s House’s social workers. “If Scott was in a hotel, he would have spiraled,” Kirby explains. “We were so grateful for the love and support from the House and other transplant families.”

Additionally, Scott and Kirby loved the convenience of home-cooked meals prepared every night by Gift of Life Howie’s House volunteers and engaging with other families that were also going through the transplant process. 

Kirby loved that conversation at the House was so open. “There was never a need to feel embarrassed because everyone staying at the House had experienced something similar,” she shares. 

At the House, Kirby was able to work on her physical therapy exercise in the fitness center. She was also encouraged to continue her occupational therapy on her journey back to normalcy. When it came time for Scott and Kirby to pack up their bags and head home, there was a moment of sadness; it was hard to leave.

“Everything happened so quickly,” Kirby says. “The Gift of Lift Howie’s House has been there for us on our journey, during and afterwards,” Scott explains.

Kirby and Scott still to this day share bonds with many of the families they met at the House. They look forward to returning to see familiar faces when visiting for follow up transplant appointments and feeling the sense of community the Gift of Life Howie’s House provides. We look forward to seeing Scott and Kirby for their next visit here with us!

Ashley and Bobby were busy planning their wedding when Bobby became ill and required a double lung transplant. Quickly their lives were turned upside down. Ashley became a caregiver at just 27 and has learned how to manage the new life transplant brings.

Ashley and Bobby in the hospital as he awaited his life-saving transplant

How did your transplant caregiving journey begin?

I became a caregiver to my husband who unexpectedly fell ill and received the amazing gift of life—a double lung transplant. His five year transplant anniversary will be on 3/20/20, which is also our wedding anniversary. We were married in the hospital just before his surgery.

What has been challenging for you?

Learning to best manage a life that others are not accustomed to has been the most challenging. While spending time with family and friends is so important to us, we have to be careful around those who are ill because the effects could be devastating to Bobby. Despite the challenges of this new life, it’s ALL worth it because someone made a selfless decision to save someone else’s life through organ donation. My husband is here because of that decision.

Ashley, Bobby and their daughter Amara

What would you say to a caregiver new to the transplant journey?

Work hard for your loved one and advocate for them when they can’t. And don’t forget to advocate for yourself, because you are just as important! Not all of your loved ones will understand what you’re going through, and that’s okay! Make sure you use your resources to find the support you need, including online or in-person support groups, a therapist, or spending more time with those you feel most supported by. And don’t forget to keep up on your own personal hobbies. They can do wonders for your spirit and perseverance!

The Caregiver Lifeline Program is supported in part by TD Charitable Foundation and Bridge to Life. We are thankful for their partnership and generosity.

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