Howie's House Blog
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 the 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 Howie’s House where they would stay during their pursuit of a life-saving transplant.
The Howie’s House became a respite for the couple during a very challenging time.
“I look back at that time at the Howie’s 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 Howie’s 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 Howie’s 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 Howie’s House while he recovered and have been back twice for post-transplant check-ups.
While staying at the Howie’s 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.
“The 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!
- 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.
- 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!
- 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 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 Howie’s House guest.
Little did they know the impact the Howie’s 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 Howie’s House and was able to visit her while she regained her strength.
Maggi has now joined George at the Howie’s 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 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 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 Howie’s House for a total of six weeks.
“The staff members at the 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 Howie’s House and the tremendous support they received. Scott would often attend the support groups hosted by the 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 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 Howie’s House had experienced something similar,” she shares.
At the Howie’s 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 Howie’s House. They look forward to returning to see familiar faces when visiting for follow up transplant appointments and feeling the sense of community the 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.
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.
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.
The Independent Order of Odd Fellows New Jersey (IOOFNJ) has been a longtime supporter of the Howie’s House mission.
Former grandmaster, late heart transplant recipient and wonderful friend Harold Delhagen connected our two missions many years ago, and since, IOOFNJ has made a real difference in the lives of transplant families.
They supported our initial capital campaign to help build the Howie’s House and open our doors by underwriting one of our guest rooms. They’ve helped transplant families who couldn’t afford our nightly fee with a contribution to our Adopt-A-Family program. Additionally, IOOFNJ has volunteered on many occasions in our kitchen to provide warm, home-cooked meals to our guests in the evenings as part of our Home Cook Heroes program.
Most recently, they generously committed to a multi-year sponsorship of our shuttle program to help bring transplant patients and their family members back and forth from Philadelphia hospitals and the Howie’s House.
This contribution to our mission helps provide a much-needed service to our guests so they don’t have to navigate an unfamiliar city alone or pay expensive parking fees while caring for a loved one undergoing the transplant process.
In 2019 alone, their support helped us travel over 16,000 miles to provide more than 1,100 trips to and from Philadelphia hospitals and the Howie’s House!
IOOFNJ is an organization based on the foundations of Friendship, Love and Truth, and seeks to make our world a better one to live in through charitable work on various projects in their community.
We are so grateful for their support and look forward to serving transplant families with them in the future!
Theresa had considered herself knowledgeable about organ and tissue donation after seeing how it worked as a respiratory therapist, but when her co-worker’s granddaughter passed away and became an organ donor, she was inspired to learn more about the process.
After learning about the Howie’s House through a Gift of Life presentation, she and her family held a fundraiser to support our mission to care for transplant families. They also signed up to participate in our Home Cook Heroes program under the team name “Team Shea” as a tribute to her co-worker’s granddaughter.
“We had such a great time cooking meals for these families…and we’ve been volunteering ever since!” Theresa says.
Since her team’s initial visit in 2017, they’ve been back several times and have earned an All-Stars a plate on our wall.
Joining Theresa in our kitchen are her children and her grandkids. They prepare comforting meals like shepherd’s pie and meatballs and ziti. Sometimes they serve fun, interactive meals like “Walk-Around Tacos” where guests can create their own taco salads in a Frito’s bag.
Along with dinner, Team Shea brings games and gives guests a chance to win items like puzzle books, decks of cards, paperback books, or candy.
“We figured some of these items could make their time waiting a little easier,” Theresa adds. “No matter how bad a day they may have had, the Howie’s House guests are so nice and appreciative. It’s amazing.”
Team Shea also provides dessert!
“One time, a guest asked me if he could bring some extra cookies to his wife in the hospital to cheer her up,” Theresa says. “It amazed me that something Team Shea did—something so little—would make his wife’s time in the hospital a little bit better.”
Volunteers like Team Shea are such a vital part of our mission. Their hard work and dedication in our kitchen help us welcome transplant families home and lessen their burden of worrying about what to eat or where to get it after a long day.
Theresa hopes other people will become inspired to learn about the Howie’s House and its Home Cook Heroes program.
“People should go to the Howie’s House to see what it’s like and donate their time,” she says. “The staff tries so hard to make the guests feel as comfortable as possible. It’s even better than I imagined it to be.”
When Ashley saw a Facebook post about an ill member of her church family in need of a life-saving liver transplant, she couldn’t just scroll past it. “I felt this tug on my heart,” she says. “I felt like this was absolutely something I was supposed to do.”
Ashley was going to see if she could donate a portion of her liver. After testing, she was approved and thankful for the opportunity to save another’s life as a living-donor.
Ashley traveled 800 miles from where she was living in Atlanta, GA to Philadelphia, PA for the surgery. “I did a lot of research about the area and what places were available for living-donors to stay after surgery,” she says. “That’s how I found out about the Howie’s House.”
She checked in to the Howie’s House the night before her surgery and returned when she was discharged from the hospital to recover.
While Ashley was in Philadelphia, she had many people supporting her who were also able to stay at the Howie’s House.
“Another woman from my church, Sheila, became my support person,” Ashley says. “While I was in the hospital, the Howie’s House was an invaluable resource for her. When she was not with me, she was able to come back to shower, rest, and eat. She took advantage of the shuttle during this time and this was a huge blessing to her as she was not quite comfortable taking a taxi by herself.”
“I loved how friendly the staff was, how neat and clean the home was, and that they offered home-cooked meals in the evenings,” Sheila says. “I also loved being able to talk to other families about their loved ones.”
Sheila flew back home when Ashley was discharged. Ashley was able to have others visit the Howie’s House to support her.
“The Howie’s House made the recovery easier. I was able to make friends with others on a transplant journey and this made me feel less alone and truly understood,” Ashley adds. “What they are doing to help transplant families is beautiful and more helpful than they may ever know.”
Ashley successfully became a living-donor and formed a close relationship with her recipient, Denice.
“My recipient and her family consider me family, and she calls me her ‘liver sister.’ Several months after our surgeries, she got to be present when her great-grandson was born. I have so loved seeing how she is living out her second chance at life!”
“I feel very blessed to have a living-donor,” says Denice. “I never feel like I could do enough to show how much she has given back to me. I can go places on my own and not worry about forgetting where I am. Ashley is one of the easiest people to talk to and is always willing to help anyone she can.”
“Before my experience, I knew very little about organ donation or the importance of it,” Ashley says. “Going through this brought me together with others going through similar experiences and it really opened my eyes to how many people are out there waiting for a life-saving transplant. I did have some friends and family who weren’t as comfortable, but I just continued to talk with them about the importance of donating and what the process was going to look like for me. I would want people to know it’s really not as scary as it sounds! I’m three and a half years post-op and I live a normal, healthy life.”
On Thursday, October 3rd, NASCAR driver Joey Gase visited Gift of Life Howie’s House, inviting us to take part in his outreach to educate millions of NASCAR fans worldwide about the life-saving importance of organ and tissue donation.
As part of his Hand Prints of Hope event, 50 members of the transplant community covered the hood of Joey’s racecar with hand prints and special messages which he raced that weekend during the NASCAR Xfinity Series at Dover International Speedway in Dover, DE. NASCAR fans were drawn to the colorful hand prints, messages, and the Gift of Life Donor Program logo in the center.
“It turns a ton of heads at the race track. When people see the hand prints all over the car, they want to come up and ask us about it and we get to tell them,” Gase, 26, said during his speech at the event.
When Joey was 18 years old, his mother, Mary, passed away of a sudden brain aneurism and was an organ donor. She was able to save and transform the lives of 66 people.
“Ever since that day, I wanted to do whatever I could to help raise awareness for organ donation and honor all those affected by it,” he said. “It’s not easy for the recipients, those on the waitlist, or the donor families. There are over 110,000 people on the waitlist nationwide and I want to do whatever I can to get that down to zero.”
We thank Joey and his team at Joey Gase Racing for their advocacy and support, and our friends at Medline for sponsoring this event!
News & Events
Shannon’s Journey from Transplant Caregiver to Howie's House Intern
A former intern shares her Howie's House experience and special connection to organ donation.
#SupporterSpotlight: Independent Order of Odd Fellows New Jersey
The Independent Order of Odd Fellows NJ has generously sponsored the Howie's House shuttle program!
#VolunteerSpotlight: Team Shea
Theresa signed up to cook meals at the Howie's House in memory of her co-worker's granddaughter.
Love Brings "Liver Sisters" Together
Ashley decided to donate a portion of her liver to a member of her church.
#VolunteerSpotlight: MTF Biologics
MTF Biologics has been spending a lot of time in our kitchen cooking meals for transplant families.
Hand Prints of Hope
NASRCAR's Joey Gase visited the Howie's House to help raise awareness of organ and tissue donation.
My First Home was Gift of Life Howie's House
When he was finally able to leave the hospital's care, the Howie's House became Asher's first home.
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