Gift of Life
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
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.
Caregiver Lifeline Spotlight
Transplant patients can live for many decades after transplantation, and with that remarkable success and progress comes a need for personalized and multidisciplinary medicine that includes specialized dermatology care.
Organ transplant recipients have an increased risk of skin cancer because immunosuppressive medications that prevent transplanted organs from being rejected by the body also lower the body’s natural defenses against skin cancer. The most common type of skin cancer in transplant patients is squamous cell carcinoma. The good news is that if detected early, with good care these cancers can be managed and very often cured.
Transplant Dermatologists have a simple goal – no one should die of skin cancer after a second chance at life through organ donation.
How high is the risk of skin cancer in transplant patients?
One in five people without a transplant will develop skin cancer by the age of 70. That story is dramatically different for transplant patients. Transplant patients are 65 times more likely to get squamous cell carcinoma than people without a transplant. They are 10 times more likely to get basal cell carcinoma, the least serious type of skin cancer. And transplant patients are 3 to 4 times more likely to develop melanoma, a potentially more serious type of skin cancer.
Skin cancers in transplant patients can grow quickly and have an increased risk of spreading. That’s why having a good relationship with a dermatologist who specializes in transplant dermatology can be game changing. Prompt and expert dermatologic care, which often includes a specialized type of surgery called Mohs surgery for certain skin cancers, is crucial for transplant patients.
What can transplant patients do about the increased risk of skin cancer?
The most important thing to do to lower the chance of skin cancer is sun protection – sunscreen, sun protective clothing, hats and sunglasses. Go ahead and make that hat fashion statement. As with many cancers, early detection of skin cancer is an important factor for preventing serious complications and death. Fortunately, most skin cancers can be easily treated in outpatient settings. The most common way to treat skin cancers in sensitive areas like the face is with Mohs Surgery. Mohs offers the highest cure rate and is the most precise way to treat skin cancer with the best cosmetic outcomes after surgery.
Good transplant dermatology care also offers treatments and medications to help lower the chance of developing skin cancer in the first place.
How often should you see a board-certified transplant dermatologist after an organ transplant?
What time and experience have proven is that routine dermatology care is an essential part of organ transplant care. Every transplant patient should be seen by a board-certified dermatologist around the time of transplantation, not because skin cancer is looming, but to start learning about skin cancer and what to look for.
After that, the frequency of dermatology visits will be based on each person’s unique situation. For some, visits are needed every few months. Fortunately most transplant patients do very well with visits to the dermatologist every 6 to 12 months.
If you are a transplant patient, talk to your transplant coordinators and physicians about finding a dermatologist who has an interest in transplant dermatology. You can also look for a transplant dermatologist through the International Immunosuppression & Transplant Skin Cancer Collaborative’s “Find a Transplant Dermatologist” tool.
Learn More About Transplant Dermatology
To learn more please watch Dr. Mark’s webinar presented through the Caregiver Lifeline Program
PICTURED L-R: Rick Hasz, President & CEO, Gift of Life Donor Program, Troy Ovechka, Jennifer Ovechka, Faith Osborne, LSW, Abby Wells, Talia Giordano, LCSW
For those undergoing the transplant journey, having a place to feel safe and supported during a medical emergency makes a world of difference. While many would agree that there’s no place like your own home, Gift of Life Howie’s House has been providing a home away from home for transplant families for over a decade.
This summer, the House celebrated 12 years of serving the organ transplant community. Since opening in 2011, the backbone of the House has been the generous contributors and dedicated volunteers that continue to support the mission.
Annual Breakfast Honors Generous Community
“It has been an honor to watch the House grow and change due to the support of this amazing community. The House completes the circle of care that begins when someone gives the gift of life. I couldn’t be more grateful to this community for helping fulfill that mission.”
Rick Hasz, President and CEO
To recognize their support, a special breakfast was held for the contributors and volunteers that help make the House’s mission a reality. The annual President’s Breakfast took place on May 12th, and was truly a fantastic morning where lots of laughs, memories, and milestones were shared. The event’s theme was “There’s No Place Like Home”, in honor of the home away from home that the community helps to sustain.
PICTURED TOP L-R: Jan L. Weinstock, Esq., Jennifer Platzkere Snyder, Esq.; Andrew Bowen, Burton John Mattice; Janice Schwartz Donahue, Karen Barnett, Barbara Katz-Chobert;Lesa Kramer, Catheanne Long
Rick Hasz, President & CEO, along with Jan L. Weinstock, Chief Administrative Officer & General Counsel, shared a few words about how integral the generosity of the community is to sustaining the House’s mission. They also shared some exciting House happenings and important milestones reached.
Past guest and lung transplant recipient, Jennifer Ovechka, shared the story of her journey while staying at the House, and the amazing things she has been able to accomplish after receiving her life-saving lung transplant.
“Since leaving Gift of Life Howie’s House, I was able to run a 5-mile race, work full-time as a medical assistant, buy a home, and above all marry Troy, my sweet big guy who never left my side. The House was crucial during my recovery. Every meal at the end of the day was appreciated, and every tidy bed to rest my head was valued.”
Jennifer Ovechka
Lung Transplant RecipientIn its 12-year history, the House has provided thousands of families with the care and services that they desperately rely on while on the transplant journey. Since opening, it has provided over $12,530,000 in subsidized care, over 316,000 meals, and over 88,457 lodging nights of care. Families have never been asked to pay more than $40 a night, and no family has ever been turned away due to inability to pay.
PICTURED L-R: Cynthia London, Dearrdra Hollingsworth, Johann Schneider, Beverly Schneider, Vivian Gano, Tom Gano
Volunteers Provide Valuable Support
Many volunteers help strengthen the mission. Rosie Lemansky, a donor family member and long-time volunteer, has been serving at the House since its inception.
“In my 12 years of volunteering, I have talked to so many of the people and they are incredibly grateful for this place. When I work here on Wednesdays, I see people that have come together that live in different parts of the country, but they’re bonded by their situation and they can relate to each other and I think that is such an important part of it. It makes me feel good to know that I am a part of this whole process.”
Rosie Lemansky
Donor Family MemberAlthough the journey home after transplant is much more than three clicks of ruby red slippers, the dedication of volunteers like Rosie, along with many generous friends have helped make the House a home away from home for thousands of transplant families.
GIFT OF LIFE EXTENDS ITS GRATITUDE TO THE COMMUNITY
FOR HELPING TO PROVIDE 12 YEARS OF HOME AT THE HOUSE.
Support Gift of Life Howie’s House
Explore ways to support Gift of Life Howie’s House and our mission to provide 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.
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.
Sunny skies and great friends coming together to support transplant families made this year’s Kidney Open Golf Outing a huge success! Thanks to our generous supporters, we were able to raise over $116,000 for Gift of Life Howie’s House!
The funds raised at this year’s Golf Outing will help us subsidize the cost of staying at the Howie’s House to keep our room fees low, and cover the costs of families who cannot afford to pay the nightly fee, making sure we never have to turn away a family due to inability to pay.
This year’s outing looked a little different than years prior, as we implemented many health and safety guidelines throughout the day and adapted the event to limit large social gatherings. Despite the obstacles, we were still able to raise much-needed funds for the Howie’s House so we can continue to support our mission of providing a “home away from home” for families undergoing the transplant journey.
As our guest speaker and past Howie’s House guest, Denise Hobbie, said during the event, “On a very tough and arduous journey, the Gift of Life Howie’s House was truly a welcome respite to me and my family.”
Whether you joined us out on the course, sponsored part of the outing, or volunteered to support our staff, we thank you for helping us provide for families like Denise’s.
We hope that you will join us next year for our 17th Annual Kidney Golf Outing!
We’d like to give a special thank you to all of our sponsors of this event! Thanks to your support, our mission to support transplant families remains strong.
2020 Kidney Open Sponsors
Golf Carts
Main Line Health
Shot Gun Start and Dinner
Bridge to Life, Ltd
Double Eagle
CareDX
Cornerstone Asset Management
CSL Behring
MTF Biologics
Nora – Nationwide Organ Recovery Transport Alliance
Quick Courier Service
VRL Eurofins
Eagle
Independence Blue Cross
Lions Eye Bank of the Delaware Valley
Mohan USA
Organ Recovery Systems, INC.
Quick Specialized Healthcare Logistics
Sinnott Executive Consulting
Birdie Sponsors
Highmark Blue Cross Shield Delaware
Howard M. Nathan
Apparel
Community Tissues Service
Lunch
Meridian Bank
Registration
Baker Tilly Virchow Krause, LLP
Course Refreshment Stations
Lincoln Financial Group
Warner Benefits / HRAdministrators
Coffee Station
Lincoln Financial Group
Practice Range
Einstein Healthcare Network
Signage Sponsor
Garrison
Putting Contest
Gillespie Electric, Inc.
Closest to the Pin Contest
The Arthur Jackson Co.
Longest Drive Contest
Wye Realty Advisors
Straightest Drive Contest
Transplant Alliance Foundation
Hole-In-One Car Sponsor
Scott Honda of West Chester
Hole Sponsors
Affinity Wealth Management
Dr. Linda Barrasse
C Change Surgical
Gallagher Benefit Services
Kimmel, Carter, Roman, Peltz & O’Neill
Miller Pipeline
Premier Orthopedics
Tozour Energy
Venture Jets
Walker Lodge #306
Wohlsen Construction
Since we opened our doors, Organ Recovery Systems (ORS) has been a proud supporter of the Howie’s House and has helped us care for transplant families in many ways!
“Supporting the transplant community is something I personally take to heart, and Gift of Life Howie’s House goes above and beyond by offering a comfortable and intimate residence for transplant patients and their families,” says Matthew Copithorne, Vice President, Sales and Marketing at ORS.
In 2011, ORS made a generous financial commitment to our mission by underwriting our kitchen – a capital campaign gift that helped us welcome transplant families home. Since then, many of their staff members have volunteered in our Home Cook Heroes Program to prepare home-cooked meals for our guests. ORS also generously supports our annual Kidney Open Golf Outing, which raises funds for our Adopt-A-Family Program.
More recently, they found another way to help by sending a generous donation of hand sanitizer!
“Partnering with Gift of Life Howie’s House has been so rewarding to us, and years later our team still counts down the days until we can visit with and cook for recipients and their families,” says Kayla Andalina, Marketing Manager.
ORS was founded on a passion to help improve patient outcomes in transplantation and honor the gift of life. Their support of the Howie’s House helps provide transplant patients and their family members with a place to call home while far from their own. We are so thankful for their partnership and look forward to serving transplant families with them in the future!
When deciding to accept the Development internship at Gift of Life Howie’s House, I can’t deny the fact that I had slight hesitation. I had worked so hard to maintain some form of normalcy upon my mom receiving her heart transplant from Temple University Hospital in 2014. Growing up, it had always just been my mom and me. When we found out she would need a heart transplant, we both were not only in shock, but incredibly scared.
At the time, I was just shy of 18 years old entering my senior year of high school. I thought my biggest challenge that year was going to be applying to colleges; however, that didn’t come close to what I would be up against. I couldn’t help but feel completely devastated. All I could think about was my old routine. What my mom and I had done practically my entire life. We would get up in the morning together and I would dress for school and she for work. I would rush out of the door to catch the bus while she ran after me to ensure I had some form of breakfast. We would separate for the day until around 6:30pm when she would come pick me up from track practice and we’d go home for dinner.
This routine was so important to me because it set the tone for the rest of my day. My mom always sent me off with nothing but smiles and positive energy. It didn’t matter if we had an argument the night before or if I was just grumpy that morning from studying late at night. She always made sure I felt her love before I headed out the door.
This was a routine I would never experience again.
For the first three months of senior year, I spent my time going to school and then rushing to the hospital to visit my mom, which became her new home. I would sit and do my homework and apply to colleges. My mom was very adamant about making sure I was still getting my work done and taking the necessary steps to further my education. While college began to feel less and less important, I somehow managed to get through several applications with the assistance of my mom.
Finally the time came! After three long months, which felt more like three years, my mom received her precious gift of life on November 1st 2014, exactly one month after my 18th birthday. It was the best present I could have ever received!
Now transitioning to life after graduating from Temple University, I knew working at the Gift of Life Howie’s House was the right decision. I was determined to not allow my previous hesitation to stand in the way of an amazing opportunity, so despite my own fears of revisiting my past trauma, I accepted the offer!
When my first day approached, I didn’t exactly know what to expect, but I felt ready. I entered the gates of the Howie’s House and walked through the doors approaching the Front Desk. Everyone was so incredibly welcoming and friendly; I truly did feel a sense of home immediately.
It almost felt therapeutic for me to be in a space that nurtured and cared for people that were going through exactly what I went through. It was a powerful experience for me to engage with families on a professional and personal level at the House. I didn’t expect to feel such a rush of amazing emotions. I am so grateful for the Howie’s House and the experience I gained both professionally and personally. My last day will be such a bittersweet moment because I have curated such great connections with guests and the staff that I hope last beyond this opportunity.
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.
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