Transplant Patients
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)
- Twitter “My Transplant Story” In 280 characters or less, tell us how the gift of organ donation changed your life for a chance to win some great prizes!
- Favorite Recipe Contest Share your go-to recipe for a chance to win a prize and have your recipe demonstrated by our guest celebrity chef!
- Talent Show entries Submit a video of your special talent! Winners will be revealed during the festival.
- Transplant Community Photo Wall Mosaic Submit a photo and be a part of the Photo Wall Mosaic that will be presented live by Peter Maag
To enter, click on the registration link below!
Live Festival Agenda
- Community Trivia Challenge Host: Amanda Nicastro – comedian and organ donor
- Talent Show Judges: Angelica Hale, America’s Got Talent runner up and kidney transplant recipient; Dorry Segev, transplant surgeon at JHU; and Merle Zuel, MerleJam founder and heart transplant recipient
- Cooking Demonstration Celebrity chef will demonstrate a version of a winning recipe, with three home chefs joining in live
- The Engaged Patient Patient Panel moderated by Osama Gaber, transplant surgeon at Houston Methodist and incoming ASTS president
- Transplant Life with Sports and Fitness Professional Athlete Panel with David Ayres, Emergency Goalie Carolina Hurricanes and transplant recipient; John Brockington, NFL – Packers and transplant recipient; and Sean Elliot, NBA – Spurs and transplant recipient.
- My Transplant Story Winners
- Photo Wall Mosaic Reveal Presented by Peter Maag
- Get Moving: Short home workout clips with professional transplant athletes
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
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
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.
“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!
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.
“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.
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.
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 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.
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.”
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 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.
When Tim Adams was diagnosed with idiopathic pulmonary fibrosis, his pulmonologist told him he only had one year left to live.
However, three years and a new lung later, Tim is doing very well.
Tim came to seek life-saving transplant treatment at Temple University Hospital in Philadelphia. His wife, Donnamarie, stayed at the Gift of Life Howie’s House for two months during his treatment and visited him every day.
“Having my wife nearby was especially helpful to my recovery,” Tim says. “Having a place for your family to stay while having major, life-saving surgery is an incredible blessing.”
Tim and Donnamarie are from southern New Jersey. If it wasn’t for the House, they would’ve had to rent an apartment—a huge financial strain.
Tim was able to join Donnamarie at the House after he received his precious gift of life from a selfless donor. Having an affordable place to stay in Philadelphia was a huge help as he went back and forth from the hospital for rehab visits. He and Donnamarie still travel to Philadelphia for Tim’s follow-up appointments.
“The Gift of Life Howie’s House, the staff, and its offerings helped us so much,” Tim says. “We’ve met and befriended other lung transplant patients from around the country. We keep up with each other.”
At the House, it’s easy for guests, whether they’re a patient or caregiver, to connect with each other. Sharing stories and words of wisdom with people on the same journey, and with those who’ve had similar experiences, can relieve their worries and stress.
Tim calls his post-op time at the Gift of Life Howie’s House his “reintegration to society.” He explains: “I was able to settle down from ‘pure’ hospital life and be around other people whom I once avoided to prevent getting sick because of my suppressed auto-immune system. At the House, other people understand post-op patients. You can come back into the world and still have your safe space.”
Now, one year post-transplant, Tim tells everyone he can about the Gift of Life Howie’s House and how it has helped him. He also joined the Board of Directors of the 2nd Wind Lung Transplant Association dedicated to supporting lung transplant patients.
“I tell everybody I know about the House. If I could, I’d run an ad in the NY Times. Everyone should know about Gift of Life Howie’s House.”
Sovereign Insurance Group of Devon, PA, a longtime partner of Gift of Life, made a generous gift to support our mission of providing a “home away from home” to transplant patients and their families.
The group underwrote the South Porch on the front side of our building.
“I’m so thankful for the folks who had the vision to make Gift of Life Howie’s House a reality,” says Mark, an employee with Sovereign Insurance Group who understands how our mission impacts families. “My family and I were the beneficiaries of a similar vision when my mom was hospitalized for an extended period of time at West Virginia University Hospital and a number of us stayed at the Rosenbaum Howie’s House in Morgantown, WV. It’s such a blessing to have a warm and friendly place to stay when you’re otherwise totally stressed out and far from home. Thanks for all you do!”
His co-worker, Eric, adds: “Having the Gift of Life Howie’s House available to the families and loved ones of patients is truly a blessing beyond words. Sovereign Insurance Group is honored to help make “a home away from home” a reality for the transplant patient families who need the supportive and caring services you provide. Our heartfelt thanks to all the staff and many volunteers who help make the Howie’s House a reality.”
We’d like to thank Sovereign Insurance Group for supporting our initiatives to give transplant families one less thing to worry about. Thanks to you, we can continue providing our services to create a comfortable, safe, and warm place for them to stay!
In 2004, Diana Ortiz battled a virus that left her with an enlarged heart. In 2011, her heart began to fail and she started spending several days each month in the hospital. In 2016, she was given six months to live. Ortiz received a left ventricular assist device, an LVAD, to help her heart pump blood throughout her body. She went back home to Allentown, PA, with her partner, Chris Bolden, and her doctor placed her on the transplant list in September of 2017. Shortly thereafter, Ortiz received her life-saving heart transplant and a miraculous second chance at life thanks to a charitable act by a donor family.
Bolden and Ortiz made the three hour trip to Philadelphia where Ortiz underwent surgery to receive her precious gift. While the surgery was successful, her new heart was weak at first. Doctors placed her back on ECMO for the first month and she fell ill to pneumonia. Throughout the ordeal, Bolden rarely left her side. “I only went home twice,” Bolden said. “I visited the hospital every day. Halloween, Thanksgiving, Christmas. On the days I did go home, my first stop of the day was always the hospital.”
Bolden stayed at the Gift of Life Howie’s House for four months while Ortiz recovered. He had a place to sleep, a place to eat, and people to talk to while he supported his loved one. The Gift of Life Howie’s House provided shuttle service for him and other guests to the hospitals where their family members were being treated in Philadelphia. “The shuttle is a lifesaver for people,” Bolden said. “Drivers drop you right in front of the hospital entrance and people on the shuttle have either been through or are going through the same things as you. Drivers are even willing to point out historical landmarks in the city.”
Our House volunteers drive the shuttle which runs several times a day, assisting guests who do not have cars, don’t feel comfortable navigating the city, and/or can’t afford to pay for gas and parking. “Without the shuttle, it would’ve been more of a struggle,” Bolden said. “Parking my own vehicle at the hospital would have cost almost $100 a week.” This past year, more than 4,600 guests climbed aboard our six-passenger minivan. Unfortunately, there were many trips where guests were turned away because the van was full. The minivan also has limited cargo space for stowing oxygen tanks and wheelchairs needed by transplant patients. Recently, we rented an 11-passenger vehicle to better provide for our guests’ comfort and wellbeing. “The new shuttle is roomier. There’s an overhead compartment and more room to get in,” Bolden said.
As part of our spring campaign, we hope to raise $50,000 to put towards a new, 11-passenger shuttle with a bus-style folding door, low steps, a center aisle, and a raised roof to make trips easier for both drivers and riders.
“Without the House, [Chris] would either be living at the hospital with me, or couldn’t come back and forth,” Ortiz said. “I never worried because I knew he had a place to stay.”
We hope you consider supporting our campaign for a new shuttle. Your donation will help guests like Chris Bolden travel back and forth to visit their loved ones and leave them with one less thing to worry about. Click below to make a donation:
Did you know last year our shuttle volunteers made more than 1,600 trips and drove over 19,000 miles to get our guests to doctors’ appointments and hospital visits? That’s about as far as driving from Philadelphia to Los Angeles seven times!
John Branton has been a Howie’s House volunteer driver for five years and a volunteer speaker for Gift of Life Donor Program since he received a liver transplant 10 years ago. He drives two days a week, taking the afternoon shift when guests are usually returning to the Howie’s House.
Now retired, John was a small business owner and insurance executive. He says that he often shares with guests how the transplant enabled him to return to a normal life.
“The conversations that go on in the shuttle are oftentimes very emotional,” says John. “Not everyone winds up with a good outcome. So those kinds of conversations are tough. But even when it’s disappointing news it’s better to share it with other people who can empathize and understand what you’re going through.”
John also notices the difficulties some of our guests face when utilizing our shuttle. Because of its small size, it’s tough to fit everyone’s necessary equipment and even to accommodate all of our guests who’d like to use the service.
“Some transplant patients must travel with multiple oxygen tanks. It’s difficult for their family caregivers to carry these items with them, but also sometimes impossible for them to maneuver their way into the minivan,” explains John.
Watch more of John’s testimonial here.
John sees our need for a larger, more accessible vehicle, and he hopes you do, too. We urgently need your help to comfortably transport our guests to and from area hospitals. Through your kindness today, we can make this a reality.
Will you please help us?
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