Howie's House Blog
Each year, many individuals are faced with the task of creating a will, yet many might find themselves putting off this important task. With National Make-A-Will Month approaching, there is no better time to address this crucial aspect of life planning. Make-A-Will Month serves as a suitable reminder of the importance of estate planning and ensuring that your wishes are legally documented and honored. The benefits of creating a will extend far past the peace of mind that it provides.
Throughout the month of August, we are encouraging individuals to plan ahead and create/update their will. Creating a will does not only entail distributing assets, but also making sure that your wishes are carried out accordingly. Without a will, the state in which you reside has control over your assets and decides where they should be distributed, which may not always align with your wishes. Having a will reduces stress and heartache for your loved ones who are already faced with grief and loss.
While the process of creating a will may seem long and tedious, it is not as time-consuming as you’d think. With the right legal assistance and resources, the process can run very smoothly.
Here at the House, you can ensure the future success of our mission by joining the Legacy Society for Planned Giving. By making a planned gift, you will help to ensure that we can maintain our affordable fees and a broad array of services for all who need us, now and in the future. Legacy Society Member, Sean, emphasized the importance of giving back. “If you really care about a cause or a charity, its good to be able to donate every year, but when you’re gone, those donations stop. If you care about a cause enough to support it, I think its important to keep supporting it even after you’re gone,” Sean explained. Visit the Legacy Society for Planned Giving page here to learn more about how you can make a difference in the lives of the transplant families we serve.
We hope that you will celebrate National Make-A-Will Month this August by making a planned gift to support our mission.
Balancing caregiving for a transplant patient and being a mom can feel like an overwhelming task. Jessica shares her experiences of caring for her son facing the unimaginable challenge of heart failure and the urgent need for a heart transplant.
Jessica, Mother of CJ
Q: How have you managed emotionally since CJ has been sick for so many years?
A:It’s hard because I’ve seen him go through this for years, and I can’t fix it. Especially because he wants to be normal and do normal things, and he can’t. It’s mentally and emotionally draining after all these years. I try not to stretch myself too thin, which is important for any mom. When he is hospitalized, I try to take a walk when he is doing well. I have also met other moms with kids in similar situations, which has been helpful. I have people checking in on me every day by phone and text. As a family we try to focus on the positives and enjoy the times we do have because things could be so much worse. I want to preserve the time we have with CJ and focus on the good things as long as I can.
Q: CJ has had a heart condition since birth; he’s now 11 years old, with an LVAD and has been waiting for a heart transplant for almost three years. You also have four other daughters (13, 12, 9, and 6 years old). How do you balance being a mom to your son and three daughters with everything going on?
A: It’s very hard. Our church family helps us with so many things. There were times where he was hospitalized for really long periods. Between 2022 and 2023 he was hospitalized for just about an entire a year, and we had family to support our other daughters. My husband and I try to work as a team to be there for the kids, though it’s hard when we can’t be there together when CJ is at the hospital and the girls are at home. We try to find the little things and moments, like all of us FaceTiming every morning and every night and visiting on weekends.
Q: How has it been for you knowing another mom and family will be grieving a loss when CJ receives his heart transplant?
A: I would never want another child to get ill or be hurt, especially since having my own children and a child who has an illness. When CJ was getting listed for a heart, a nurse encouraged us to think of it differently, that we’re not praying for another child to die for CJ to live, we’re praying for that child’s loved one to have the strength to say yes to donation by blessing CJ with the gift of life in their time of their tragedy. I still struggle thinking about it, especially during the times when CJ has gotten “calls,” but we still pray for those families regardless of whether they would go on to become a donor for CJ.
You can provide hope to the thousands of people like CJ who are waiting for a transplant. Learn more and sign up at www.donors1.org/register
A heartfelt thanks go out to all the talented artists who shared their creations and to the hundreds of community members who generously contributed to the voting process.
Thanks to your support, over $15,000 was raised to benefit Gift of Life Howie’s House. These funds will play a crucial role in ensuring that the House can continue offering affordable lodging, meals, transportation, and supportive services to transplant patients and their families who travel to Philadelphia for life-saving medical care.
Congratulations to the Contest Winners!
Let’s celebrate the remarkable talent showcased in this year’s contest. Congratulations to the winners:
First Place
Nancy St. John
Renaissance, Study #2
Second Place
Kelly Brown
From Loss, Comes Hope
Third Place
Jeff Feeny
Postcard
Stay tuned for more updates and events as we continue our mission of sharing kindness and support to the transplant community.
HELP CONTINUE THE COMMITMENT TO SAFETY this Spring by supporting the enhancement of the security system at the House.
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.
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.”
“I couldn’t have imagined anything NICER and SAFER.“
Mike’s wife, Jo-Ann, said that the security measures in place were one of the first things she noticed.
“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.
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.
Mike said that the peace of mind the House brought him made all the difference in his recovery.
“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!
“This facility was a LIFESAVER, providing a safe environment for my family…”
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.
“We want our donor to know that we’re not wasting one day, we’re living every day to the fullest because you just never know when it’s going to be your last,” Jo-Ann says.
THIS SPRING, HELP SUPPORT THE COMFORT OF FAMILIES LIKE THE BACHERS
by supporting the upgrade of the security camera and public announcement systems.
This project will further modernize the current security camera system at the House, allowing for enhanced picture quality, more centralized monitoring, better views of the building, and more. It will also include an upgrade to the current public announcement system within guest rooms, simplifying the process to make guest and safety announcements.
Please consider making a tax-deductible contribution today to help reach the goal of $40,000 to complete this important project.
Gifts of all sizes are needed and appreciated. As Jo-Ann says, “Even a small gift goes a long way.”
Click Here to make your gift today!
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.
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/
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 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.
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.”
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:
- Identify new traditions or modify old ones as a way to maintain some normalcy! For instance if you normally cook for a large group, maybe you can still prepare some of the meal and then make to-go containers for your friends or family to grab and go.
- Create a gift budget. Finances this year have been a struggle for most. Also consider handmade gifts or creative gifts to avoid over spending.
- Organize a special activity or event with friends and family for a later time when gatherings are safely approved again. This may help your family by having something to look forward to.
Prioritize Self-Care:
- Safely get outdoors. A little fresh air and movement each day can impact our bodies and minds in a great way!
- Find and participate in online groups or classes. As our society has adjusted to virtual gatherings, more online opportunities have been developed. Try finding your favorite support group, fitness class online, or an online class to learn a new skill.
- Be intentional. Try practicing mindfulness, deep breathing, or listening to your favorite feel good music once a day.
- Allow space for grief and loss. Do not minimize your grief this holiday. Allow yourself to experience it and talk about it with your support system.
- Be gentle with yourself. Recognize and reflect on what you have gone through this year and the changes you have adapted to.
- Practice gratitude. Take time to acknowledge the good. Remembering what we are thankful for can do wonders on any rainy (or snowy) day!
Connect:
- Use any form of communication and technology that you have access to & stay connected! For instance, keep regularly scheduled Zoom or Facetime calls with family and friends and put it on your calendar.
- Ask for help. If you are struggling or need support, reach out. Identify a support person or resource and express your needs.
RESOURCES: If you or someone you know needs additional support, please utilize and share the resources below:
- Caregiver Lifeline Program – support for transplant families: 267-546-9800
- Support with Mental and/or Substance Use: SAMSHA National Helpline 1-800-662-4357
- Domestic Violence: 1-800-799-SAFE
- National Suicide Prevention Hotline 800-273-8255
- Find Local Food Resources Near You: Philabundance.com / P: (215) 339-0900
- Veterans Crisis Line 1-800-273-8255.
By Faith Osbourne, MSW
Gift of Life Howie’s House Social Worker
News & Events
Stay Connected
Sign up to receive email updates featuring transplant stories of hope and ways you can get involved with the Howie's House.
"*" indicates required fields
