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.
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/
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
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 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.”
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 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.
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 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.
| 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!
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