Stories Test 1
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/
In January, Howard Nathan retired after an incomparable career as President & CEO of the Gift of Life Donor Program and shifted to his new role as Executive Director of the Transplant Foundation. There is hardly a professional involved in organ transplantation anywhere in the world who does not know Howard’s name. Thousands of recipients and donor families have felt the impact of his vision, determination, and empathy. However, since Howard stepped down amidst the challenges of a global pandemic, we have not had the opportunity to celebrate his career as we would like, until now.
We are truly thrilled to announce a few ways we are honoring Howard this year:
Gift of Life Howie’s House is being renamed in Howard’s honor! Gift of Life Howie’s House will be officially dedicated this summer and will continue to welcome guests with the warmth and compassion embodied by its new namesake. If you would like to share a message for Howard, please click here.
We are also very proud to launch Beyond Measure: The Howard M. Nathan Impact Fund benefitting Gift of Life Howie’s House, a one-of-a-kind opportunity to honor Howard with a personal or corporate contribution, in gratitude for his outsized influence on donation and transplantation and to ensure that Howie’s House continues to fulfill its commitment that no family be turned away for inability to pay. To make a contribution in Howard’s honor, please click here.
We are excited to be able to celebrate Howard. Throughout his 43+ year career, Howard’s visionary efforts to move the field of organ and tissue donation forward have resulted in the successful coordination of more than 55,000 life-saving organs for transplant and more than 2 million life enhancing tissues for transplant through Gift of Life Donor Program alone. Each precious gift offered hope to patients and their families. His tireless dedication, leadership, and mentorship have influenced best donation practices and policies regionally, across the United States and around the world.
Many professionals in our chosen field have had the chance to work with Howard throughout his career and have experienced first-hand his dedication and commitment. His passion to advance the Art & Science of Donation is well established, with Gift of Life Institute supporting innovation and accountability in the field. And it is only because of Howard’s compassion and commitment to the families undergoing the challenging transplant journey that his dream of Gift of Life Howie’s House became a reality, a home away from home for transplant families travelling to the Philadelphia region for their transplant care. Informed by his own family’s experience while his sister underwent her life saving liver transplant, Howard took action to complete the circle of care provided by the Gift of Life family.
The Howie’s House, celebrating its 10 years of providing support and affordable lodging stands as a testament to what Howard sought for all families. Compassion, care and expertise all harnessed to support life-saving work grounded in the altruistic acts of donor families.
We are all grateful for Howard’s leadership, his vision, his tenacity, and his personal compassion. We hope you will join us in this singular opportunity to thank an exceptional man who has had a foundational impact on the profound work we all share.
Transplant caregivers often face an array of struggles that are commonly overlooked, especially when it comes to communicating the realities of the transplant journey. From caring for the patient, managing daily tasks, and dealing with the emotional and financial hardships that can come from transplant, it is a role that requires a lot of strength.
Michele Keefe, a Binghampton, NY area native and past Howie’s House guest, recounts her journey as the primary caregiver to her husband, Tom, who received a double lung transplant in August of 2021.
Tom had been suffering from COPD for several years before finally getting listed for a transplant. During this time, Michele did significant research into Tom’s disease and possible outcomes. She says that she always knew that a transplant was going to be what Tom needed. “I started advocating with his pulmonary physician at home, and saying that the only way we were going to fix this was with a transplant,” explains Michele.
Once Tom was listed, their journey to transplant was a short one. Just 2 days after getting listed Tom received his life-saving transplant. The couple were able stayed at the Howie’s House during Tom’s recovery. Michele says that as a caregiver, staying at the Howie’s House made all the difference.
“There’s a hundred million things that you are worried about as a caregiver. It was comforting to know that I didn’t have to worry about where I was going to sleep or what I was going to eat,” says Michele. “It probably seems mundane… but the meal at night was huge. You get to the hospital early, and you’re there all day, and then by the time you get him settled for bed and you leave, you don’t want to have to worry about what you were going to eat, it was just here.”
She explains how hard the transplant journey can be to prepare for, and how feeling like she had a safe place during that time of uncertainty helped ease some of her stress.
“Everything while on the transplant journey is new. They give you all the education and they tell you everything beforehand, but it’s not the same as going through it,” Michele recalls. “It just is comforting to know that if you had a need, that this was the place that could take care of that.”
Michele says that she managed the many stressors of being a caregiver by learning to “roll with the punches” and by practicing patience.
“You learn to be patient, and to roll with it. Some days it didn’t matter if I had 14 things on the to-do list, we would have to just sit and breathe together,” she explains. “Someone said to me early on in this process, ‘Life is a juggling act, and you can’t let glass balls fall, which are your health, and your family. Rubber balls you can let go as your juggling, because you can always find another job or another car, but you have to prioritize what’s important.”
When asked if she had any advice for caregivers, she says that “it’s important to be as knowledgeable as you possibly can and to trust your gut, because if there is something in you that’s saying ‘this isn’t right’, you have to be the advocate for the person that you care about.”
What brought me to the Howie’s House?
I served twenty-four years in the United States Army and during that time, I had the honor to serve in Iraq, in multiple combat tours. An experience I am very proud of and one I will never forget.
Upon returning home from the multiple tours, I began experiencing the symptoms of post-traumatic stress disorder or PTSD.
I had trouble sleeping, irritability, severe depression and flashbacks. This began to affect my personal and professional life. I didn’t know how to deal and didn’t know where to find support. I began drinking to alleviate the pain that had completely consumed me. I felt the only way to deal with what was happening was to drink, which ultimately led to my hospitalization.
How I Got Here
On January 1st 2021, I was rushed to a transplant hospital in Philadelphia in complete liver and renal failure. My body was malnourished, and I was unconscious. I was in immediate need for a liver transplant or I was not going to make it.
I was put into a medical coma and began the process of being listed for a liver transplant, that would eventually save my life. My sister stayed at the Howie’s House while I was hospitalized.
After a month of waiting in the hospital, I finally received my gift of life, a liver transplant, on February 4th.
Though because of the long hospitalization, the road to normalcy was a long one. My muscles had atrophied and with that began months of physical and occupational therapy.
Time to Leave the Hospital
As I came to the end of my 4 months stay in the hospital, I realized there was a lot more healing to do before returning home, medically, physically, and emotionally.
What I found was a place to transition and to heal – to get ready to return, not to the old life I had but the new life that I had been given, MY SECOND CHANCE.
At the Howie’s House I had place to go to after a long day of follow up appointments or dialysis, as my kidneys also failed during my transplant process. I was surrounded by my family as well as a new family of people with the same shared experiences.
Every night we had dinner donated by several groups and organizations and this was a time to share stories with other guests of how we got there, who we are, and the ins and outs the hospitals we would go to.
Staying at the Howie’s House to be close to the hospital was extremely important after my long hospital stay and medical recover. However, staying at the Howie’s House was also extremely important to my emotional healing.
Meeting other patients and families, working with the hospital and Howie’s House social workers, and focusing on my recovery all began when I checked into the Howie’s House.
Time to go home!
After about 2 months at the Howie’s House, in June 2021, I was ready to take on my new life. In the military we have what is called a change of mission – starting something completely new. You have to learn to adapt to that situation.
I wasn’t going back to my old life, but adapting to a new environment with different challenges. Howie’s House, my medical team, and support system, gave me skills to take this on.
Closing
I am currently medically retired from the military, however I still stay close. I am working with soldiers as a Master Resiliency Trainer, which I received through University of Pennsylvania, guiding soldiers to get the help and counseling they need to overcome depression, anxiety and addiction.
My sister, who stayed with me during my time at GOL, also has a charitable organization for disabled veterans to experience the sport of scuba diving, which I also support.
I am so incredibly grateful for my second chance at life. I thank my donors and donor families, as I had my liver transplant in February and then I did receive my kidney transplant in December 2021. My donors gave me the ultimate gift, so I can see my kids grow up, graduate college and live their own successful lives.
With my second chance I plan to compete in the transplant games later this year in the triathlon and I will continue to help other soldiers who are dealing with what I went through.
I thank the Gift of Life Donor Program for facilitating the process to get me transplanted as well as the Howie’s House for giving me a place to recover and heal in so many ways.
Finally, I want to say thank you to all the contributors who help keep the Howie’s House going, as well as the staff, fellow patients and families. Without you so many people would not have a second chance at life to love and share.
In the words of Jan Weinstock, Chief Administrative Officer and General Counsel, “It may have been raining, but the sun was certainly shining” at our annual President’s Reception that was held on May 6th, 2022, at Gift of Life Howie’s House.
After two long awaited years, generous contributors, volunteers and staff were finally able to reunite in person during our Rise and Shine President’s Breakfast. We are grateful to have had the opportunity to share many laughs and memories and recognize the continued generosity of our amazing community.
President and CEO, Rick Hasz along with Jan also had the pleasure of sharing some important milestones reached, updates and remarks about the Howie’s House’s exciting journey ahead and transition into our new name, Gift of Life Howie’s House.
As past guest, transplant recipient and veteran, Jason Vaughn, said in his speech at the reception, “At the Howie’s House I had place to go to after a long day….. I was surrounded by my family as well as a new family of people with the same shared experiences….I want to say thank you to all the contributors who help keep the Howie’s House going, as well as the staff, fellow patients and families. Without you so many people would not have a second chance at life.”
His gratitude represents the thousands of patients and caregivers supported by the Howie’s House on their journey to hope.
We were also joined by special guests, the Ward family, who stayed at the Howie’s House when they learned their young son Jude needed a liver transplant. Jude received his gift of life in 2017 and the whole family relied on the comforts of the Howie’s House during their transplant journey.
Many families, such as the Wards, are in desperate need of a clean, warm, place to stay during their transplant journey. In 2017, Nicole Ward learned that her son Jude would need a liver transplant. It was critical that the Ward family felt safe and comforted during their stay. Nicole said, “A simple donation means the world to another family.”
We were honored to have both Jason and the Ward Family ring the Chimes of Hope in celebration of all that the Howie’s House is able to accomplish because of the generosity of our community. If you were not able to attend this year’s event, you can watch the video on our Facebook page here.
Mike Bacher and his wife Jo-Ann are from Lewis, Delaware and first came to the Howie’s House in January of 2022 to start the evaluation process for a heart transplant. Mike was diagnosed with cardiomyopathy 16 years ago, and lived a normal, healthy life until his health started to decline, and his doctors advised him to consider a transplant that could save his life.
They were thankful to have a safe and comforting accommodations during the process.
Heather, Mike’s daughter, said that when Mike and Jo-Ann first came to the House, “they said they knew it was the right place to stay”.
A few weeks later, Mike was listed for a heart transplant at Temple University Hospital, and after only 11 days of waiting, he received his precious gift of life. Jo-Ann stayed at the Howie’s House while he recovered and was able to have their two daughters, Heather and Melissa, as well as other family members take turns staying with her to offer support.
“It’s been such a stressful, overwhelming experience but having somewhere to eat and sleep and rest is priceless,” says Heather. “My dad was also able to gain a sense of peace and comfort knowing that his family was safe while he was in the hospital.”
The Bacher’s family and friends asked how they could support them during their journey and they requested that all support be directed to the Howie’s House. A place that is helping them and others during the transplant journey. Sisters Heather and Melissa created a Facebook fundraiser where people could donate in Mike’s honor to benefit the House. The fundraiser ended up raising over $12,000!
The generosity didn’t stop there. When Jo-Ann’s employer, Jack Lingo Realtor, heard about Mike’s transplant, the company decided to hold a matching gift fundraiser with their employees and raised over $5,000, which makes the grand total of over $17,000 raised for the Howie’s House!
The Bacher Family say that they are grateful to the Howie’s House for all the services they received, and to Mike’s donor for giving him his precious gift of life. “My dad has someone else’s heart beating in his body. He gets to live longer and make more memories, there is no greater gift than something like that,” says Heather.
Just a few days after Mike was discharge from the hospital, the entire Bacher Family visited the Howie’s House to celebrate Mike’s transplant and ring the Chimes of Hope, and even provided a home-cooked meal to the families to give back.
Click here to watch the family ring the Chimes of Hope!
In honor of National Social Worker’s Month, we thought we would feature one of our Howie’s House social workers, Faith, to learn more about her and her background! Faith started working at the Howie’s House in November of 2020 and has since become an incredibly valuable member of the team.
Q: Where are you from? Where did you attend school?
A: I grew up in Bloomsburg PA, where I received my undergraduate degree at Bloomsburg University. I moved to Philadelphia to pursue my MSW at West Chester University.
Q: How did you decide you wanted to be a social worker?
My goal has always been to work in a helping profession. Having a passion for advocacy and mental health, social work seemed like a perfect balance of the two!
Q: What is your favorite part about your job?
My favorite part about being a social worker at the Howie’s House is the opportunity to build connections with our transplant families and community.
Q: What do you like to do in your free time?
In my free time I enjoy staying active at the gym or on Kelly Drive, trying new restaurants around Philly, and taking day trips to the shore as frequently as possible!
Our social workers are a vital part of serving our mission and provide Howie’s House guests with critical support and education while undergoing the transplant process. Faith is a vital member of the Howie’s House team and we are so grateful to have her on board!
Dear Howie’s House community,
It’s hard to believe that over 10 years ago, Gift of Life Howie’s House officially opened its doors to welcome home transplant families.
Nancy and Thomas Greenholt of McSherrytown, PA were among the first to check in. “For months we’ve had to get up in the middle of the night to start our long drive to the hospital. We would then have to complete the return drive home later in the day,” they explained 10 years ago. “What a blessing to have the House available to spend the night and then be able to go directly to the clinic within 15 minutes. The stress of driving has at least been cut in half. We were thrilled to finally have a wonderful place to stay.”
Since then, we have provided comfort and hope to thousands of families like the Greenholts along their transplant journeys. And while no family’s experience is identical – there is comfort in sharing the experience with others who understand.
To mark this special milestone, we are thrilled to have kicked off a year-long 10th anniversary celebration and fundraising effort. We’re calling it our Journey to Hope Campaign in honor of the courageous families we serve every day. Check out our special campaign video here!
I’m extremely proud of all that we have accomplished together over the past decade.
In our 10-year history, we have provided over 72,000 nights of lodging and care as well as 250,000 meals plus household supplies, transportation and counseling to over 2,800 transplant families.
We have steadfastly maintained our $40 nightly room fee — though our actual costs are now as much as $175 per night — and have never turned away a family who couldn’t pay. All told, we have provided over $10 million in subsidized care to transplant families since we opened.
All of this is made possible by the generosity of individuals, companies, organizations, foundations, and friends like you who believe in our mission and know that we are good stewards of their generous contributions. I am so very grateful!
Our Journey to Hope needs YOU!
You can support our journey ahead and help us to continue offering affordable care to transplant families by supporting our campaign.
There are many ways to give to the Howie’s House and be recognized, including room and other sponsorship opportunities for individuals, groups and companies.
Please join us as we celebrate our 10th anniversary and the journey to hope that we share.
Warm regards,
Howard M. Nathan
Founder, President & CEO
Nicole, 28, was diagnosed with Cystic Fibrosis at a young age and was given a low chance of surviving past age 10. Nicole describes her personality as a “bull” and says that “if someone tells me I can’t do something, then I’m going to fight very hard and go do it.”
Nicole beat the odds and it wasn’t until the age of 21 when her doctors told her that she would need to start looking into transplant surgery. A few years later, Nicole was added to the lung-transplant waiting list. And in June of 2019. just 2 weeks after getting married, Nicole received the best wedding gift one could ask for, a life-saving lung transplant!
Nicole and her mom, Patti, stayed at the Howie’s House for a little over 2 months during Nicole’s transplant and recovery journey. She says that although her recovery was hard, “knowing that you’re coming back to a place that’s peaceful and understanding is priceless”. Nicole and her mom particularly enjoyed interacting with the Home Cook Hero volunteers and the delicious meals they provided every night. “It was so comforting to come home from a long day of physical therapy and have spaghetti waiting for you”.
Nicole says she is thankful for the people at the Howie’s House that make the journey for transplant patients doable, and explains, “when you’re experiencing so much trauma on a regular basis, you really just need some love at the end of the day, and I felt like I got that at the Howie’s House.”
Growing up, Nicole’s passion and escape was always the theatre. She started participating in theatre groups from a young age and continued to star in and write for shows all the way into college. When her condition started to worsen, however, she could no longer participate in shows the way she wanted to. That is when she began to write a musical about her journey and experiences as a Cystic Fibrosis patient, and soon enough she had finished writing the lyrics to her full-length musical, Fall Risk.
Today, Nicole is in great health leading up to the 2-year anniversary of her lung-transplant and is now putting all her efforts into producing and bringing her musical to life!
This spring, consider making a gift that will help us continue to be there for families like Nicole’s during their difficult and unpredictable transplant journeys. Your gift will help us provide comfort and stability to our families 365 days a year, 24 hours a day. Click here to give today.
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