Transplant Patients

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

CJ, Jessica, and their dog

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.

CJ in the hospital

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.

L-R: Casey, Natalie, Alexia, CJ, Jayda, Tara and Jessica

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. 

Caregiver Lifeline Spotlight


Dr. Mark Abdelmalek


Dermatology of Philadelphia

www.dermofphilly.com


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 Recipient

In 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 Member

Although 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.

Donna Nelson with her husband, Dana Nelson, a lung transplant recipient

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.

Coming up on Saturday, September 26th CareDx is hosting the Allocare Transplant Festival, a fun, interactive, virtual event meant to bring together members of the transplant community during this difficult period. The event will take place from 12 – 3 p.m. ET and will feature many different activities with guests from all over the transplant community.

The festival has a full agenda of events and activities, as well as multiple contests for attendees to participate in before and during the festival! Here is a full list of the live festival agenda, as well as the pre-event contests:

Pre-Event Contests (submissions due by September 19th)

To enter, click on the registration link below!

Live Festival Agenda


So what is CareDx? CareDx is a transplant focused company centered around providing healthcare solutions for transplant patients and caregivers both pre- and post- transplant journey. It is committed to improving transplant patient outcomes through innovative testing and is the leading partner in medicine for transplant patients.

Gift of Life Howie’s House is so excited to be partnering with CareDx for this special event. For more information and where to register, visit this website: https://bit.ly/caredxregistration

We hope to see you there!

Authors: Leora Aizman, BS; Thuzar M. Shin, MD
University of Pennsylvania High-Risk Skin Cancer Clinic for Organ Transplant Patients

Leora Aizman, BS

Skin cancer occurs in one out of every five people,1 but solid organ transplant recipients are at a higher risk than the general population. Skin cancer is the most common cancer after transplant,2 affecting up to 70% of patients.3 Fortunately, this condition is potentially preventable and easily treated when caught early. The best ways to protect yourself are to understand your risks and follow practices to prevent the development and progression of skin cancer. 

            Transplant patients are at increased risk for skin cancer because immunosuppressive medications, which are necessary for the health of transplanted organs, decrease the body’s defenses against skin cancer. The longer recipients are taking immunosuppressive medications and the higher the dose, the more likely skin cancer is to develop.2,4 It is important to recognize that skin cancer also occurs at much younger ages in transplant recipients. They usually begin to develop five to seven years after a transplant, but may develop sooner in older patients2 or in patients who have had a skin cancer prior to transplant.5 Not all transplant recipients are affected equally. Heart transplant recipients, followed by kidney recipients, are the most likely to develop skin cancer.4

Thuzar M. Shin, MD

The three main types of skin cancer are: squamous cell carcinoma, basal cell carcinoma, and melanoma. Squamous cell carcinoma is the most common type of skin cancer in the transplant population and is 65-times more likely to occur in transplant recipients than in the general population.6 Squamous cell carcinomas appear as small pink spots with a scaly surface and usually develop on areas exposed to sunlight, such as the head, neck, and hands. Basal cell carcinomas frequently occur in similar locations, but look like shiny pink bumps or patches. Melanoma is the least common, but deadliest, form of skin cancer and usually appears as an irregularly-shaped brown spot or changing mole, often on the back or legs. All three types of skin cancers are curable if caught early, but may cause extensive local destruction and even death if left untreated. 

            There are a number of steps patients can take to reduce their risk of developing skin cancer. The transplant recipient is their own first line of defense. The first principle of skin protection is to avoid sun exposure and commercial tanning booths.  Additional steps to minimize sun exposure include seeking shade, staying indoors during the hours of peak sunlight (10am-4pm), wearing sun-protective clothing (long-sleeved shirts and pants, broad-brimmed hats, sunglasses), and using a broad-spectrum sunscreen with SPF 30 or higher on exposed skin (which needs to be re-applied every 2 hours, sooner if you swim or sweat excessively). Monthly self-skin exams may help detect any new or changing growths or moles. This may be done by using a mirror to examine all parts of your body, including the palms, soles, and genitalia. In addition to self-skin exams, experts recommend a full-body skin examination with a board-certified dermatologist at least once a year.7 For very high-risk patients, even more frequent follow up with a dermatologist may be crucial to detecting and treating skin cancers early.

            There are a variety of methods to treat skin cancer, including creams, scraping, and freezing for early cancers. More advanced cancers may require surgical removal. Mohs micrographic surgery is a special surgical procedure that removes skin cancer in layers, to preserve normal skin. For both treatment and prevention, skin care management should involve a close partnership between the patient and their transplant doctor and dermatologist.

References

1.         Stern RS. Prevalence of a history of skin cancer in 2007: results of an incidence-based model. Arch Dermatol. 2010;146(3):279-282.
2.         Mittal A, Colegio OR. Skin Cancers in Organ Transplant Recipients. Am J Transplant. 2017;17(10):2509-2530.
3.         Bangash HK, Colegio OR. Management of non-melanoma skin cancer in immunocompromised solid organ transplant recipients. Curr Treat Options Oncol. 2012;13(3):354-376.
4.         O’Reilly Zwald F, Brown M. Skin cancer in solid organ transplant recipients: advances in therapy and management: part I. Epidemiology of skin cancer in solid organ transplant recipients. J Am Acad Dermatol. 2011;65(2):253-261.
5.         Garrett GL, Blanc PD, Boscardin J, et al. Incidence of and Risk Factors for Skin Cancer in Organ Transplant Recipients in the United States. JAMA Dermatol. 2017;153(3):296-303.
6.         Perez HC, Benavides X, Perez JS, et al. Basic aspects of the pathogenesis and prevention of non-melanoma skin cancer in solid organ transplant recipients: a review. Int J Dermatol. 2017;56(4):370-378.
7.         Crow LD, Jambusaria-Pahlajani A, Chung CL, et al. Initial skin cancer screening for solid organ transplant recipients in the United States: Delphi method development of expert consensus guidelines. Transpl Int. 2019;32(12):1268-1276.

Bridge to Life
TD Charitable Foundation

On Friday, May 17, 2019 our colleagues from Thomas Jefferson University Hospital joined us at the Howie’s House for a special luncheon to celebrate an amazing milestone in our partnership—a $250,000 pledge from their hospital to support the Howie’s House mission. As part of this pledge, Jefferson Hospital underwrote our “Family Community Center” on the lower level of the Howie’s House, which includes our laundry and fitness facilities, salon, Volunteer Center, and Activity Center.

During the luncheon, special remarks were made by Richard Webster, President of Jefferson Hospital, Howard M. Nathan, Founder and President of Gift of Life Howie’s House, and Ed Carman, a liver and kidney recipient treated at Jefferson and former Howie’s House guest. Following the program was a ceremony to unveil the “Family Community Center” plaque in Jefferson’s name.

“Jefferson saved my life and I will always be thankful for that,” Ed said during the event. “While I was staying [at the hospital], my wife had a safe place here, and a caring place here. I didn’t have to worry about that for her. I knew she was OK.”

Jefferson was the first transplant center to financially support the Howie’s House. In their first pledge, they underwrote the Howie’s House’s dining area where families can meet and connect over their experiences while sharing a warm, home-cooked meal.

From left to right: Howard, Ed, Rich, and Gail

“I feel committed to the Howie’s House because I see the impact it has across the community,” said Mr. Webster. “We are so fortunate that it’s here for our patients.”

Mr. Webster, Ed, and his wife, Gail, were also presented with the Howie’s House challenge coin, which is a token of thanks given to members of our community who represent values we hold dear, including family, community, compassion, generosity, service, and commitment.

Through their compassion, commitment, generosity, and service to our mission, our colleagues at Jefferson Hospital have made incredible efforts to strengthen patients, families, and the transplant community. We are so thankful for their support!

After the event, Jefferson Hospital staff participated in a team-building baking competition in the Howie’s House kitchen as part of our Home Cook Heroes Program. We have had more Home Cook Hero volunteers from Jefferson Hospital than any other hospital in our region—just another way Jefferson demonstrates their loyalty and commitment to our mission.

We are so thankful for our partnership with them!

We had a very special wish granted…

…we have new laundry machines!

Wanda, a Howie’s House guest, does her laundry in our laundry facility

Last fall, our friends from Hercules, a laundry room equipment provider from Long Island, NY, generously donated five brand new washer and dryer sets to the Howie’s House!

Imagine having to suddenly relocate to a city you’ve never been to—you have to find a place to stay, food to eat…the last thing on your mind may be where to wash your clothes. You might not even have detergent, a laundry basket, or quarters to put into machines at the laundromat.

Because our guests can take the stairs or elevator right to our laundry room, they don’t have to worry about how to get their personal belongings to and from a laundromat. This convenience helps make the Howie’s House feel like “home” and gives our guests more time to focus on what’s most important—taking care of themselves and their loved ones.

“What the Gift of Life Howie’s House provides to its residents and their families, in terms of support and inspiration, is truly heartwarming,” Andrew May, President and CEO at Hercules, says.

Joe Kauffman, Howie’s House Manager, and Bob Marquart, Director of Facilities, with Tom Jeppestol and Barry Heller from Hercules Laundry

“After our Hercules Account Manager, Tom Jeppestol, brought to my attention the needs of the Howie’s House with respect to their laundry facility, I didn’t hesitate for a minute in determining how we could support such a worthwhile organization. The patients and their families certainly have enough to deal with, waiting for transplants and follow-up appointments. It’s my pleasure to be able to help make their stay at Howie’s House as comfortable and stress-free as possible.”

The new washers and dryers will allow our guests to do their laundry for free during their stay. They can put their clothes in the wash, head back to their rooms or make a snack in the kitchen, and come right back down when they’re ready to be switched.

Wanda does not have to worry about finding a laundromat or getting her personal items there—she can do her laundry right here at the Howie’s House

Thank you so much to Andrew and everyone else at Hercules who made this wonderful gift possible!

Are you from an organization looking to give a charitable gift? At the Howie’s House, we can always use a hand to help serve our transplant families. If you’re interested in making a gift, please contact Sara Cohen, Development Manager, by email at scohen@giftoflifefamilyhouse.org or phone at 267-546-9800.

 

 

 

 

 

 

 

 

 

 

When we’re feeling stressed or anxious, or we’ve just had a rough day, sometimes what makes it all better is spending some time with our pets.

Debra and her certified therapy dog, Carmen

Unfortunately, many transplant families are separated from theirs’ because they have to travel a long way from home to receive life-saving treatment.

That’s why as part of our Caregiver Lifeline Program, we bring in therapy dogs several times each month to spend time with our guests.

“There are some studies suggesting that petting animals can help reduce stress and anxiety,” says Talia, our social worker.

“Transplant patients and families staying at the Gift of Life Howie’s House are under tremendous stress and away from their own support networks at home, including their own pets. Therapy dogs give the families an opportunity to forget the stressful parts of the transplant journey, even just for a few moments,” she adds.

Carmen patiently waits to spend time with our guests

Carmen and Debra have been visiting our guests since we opened our doors in 2011.

When Debra pulls up into the Gift of Life Howie’s House parking lot, Carmen wags her tail in excitement. They both walk through the doors, greet our staff at the Front Desk, and then Carmen runs excitedly to our social worker Talia’s office to greet her.

Carmen was rescued from Puerto Rico and brought to the United States when she was just a few months old. When Debra and her husband first met Carmen, she ran right up to them, jumped in their laps, and licked their faces. Now she is 11 years old and has been part of the family ever since!

Carmen has never taken an obedience class before but passed her therapy dog certification with ease. “She’s so loving and giving,” Debra explains. “She just knows who needs her and what to do for that person.”

During their visits, Carmen and Debra sit in our living room and wait for our guests to stop by for some quality time. Carmen is always so happy to greet everyone who comes to say hello! She gives tons of kisses, happily wags her tail, and is even willing to just sit quietly by your side for a little while.

Carmen loves getting to know our guests

Kathy, a Gift of Life Howie’s House guest, loves hanging out with Carmen. “Being with Carmen is relaxing,” she says. “It’s positive therapy for me.”

Kathy also mentions missing her own dog, a Labrador named Molly, who is staying with her sister while she is away from home. “I miss her a lot,” she says. “I love seeing my son with Carmen because I know he misses Molly, too.”

Esther, another guest, agrees: “When you have so much going on all at once, sitting there with a dog is so comforting,” she says. “I’ve missed my dogs who are still at home while I’m here. Being with Carmen lets you forget it all for a little while.”

Debra loves talking to our guests and learning about themselves and their families—and even their dogs!

“Everybody has a dog story,” she says. “Hanging out with Carmen gives them the chance to talk about something or someone they love.”

Our guests love spending time with Carmen when she comes to visit

Carmen also visits schools to help students de-stress during exams, and even takes part in a program where children learning to read can practice reading to her.

Debra recalls when she saw two children waiting in the window for Carmen to walk in, and she immediately ran over and began kissing them.

“I get so excited when people who’ve had a long day see Carmen,” she says. “It makes them feel better. I wish every place had a therapy dog program.”

The Gift of Life Howie’s House’s Caregiver Lifeline Program provides services specifically tailored to the needs of organ transplant patients, family members, and caregivers inside and outside the walls of the House.

Carmen relaxes as a guest reads her a story at the House

Carmen is just one of the many therapy dogs we invite to spend time with our guests to help them relax after a stressful day, and also to provide another opportunity for guests to connect with each other. They have an important impact on our guests’ well-being and we look forward to having them every time they come to visit!

Are you interested in bringing your therapy dog to visit our transplant families at the Gift of Life Howie’s House? Contact our social worker, Talia, at tgiordano@giftoflifefamilyhouse.org.

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