Transplant Patients
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
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
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
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.
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!
When you think about the winter season, you may think of the holidays or freshly fallen snow, which may bring you happiness and joy. You may also think of the treacherous weather, cold air, and shorter days, which can cause you to dread the winter season. It is not uncommon to feel sad, irritable, sluggish, or even have difficulty getting up in the morning. These feelings during the winter months are common and are often referred to as the “winter blues.” When you are feeling down, it can be easy to convince yourself that you cannot do things you enjoy – here are some tips that may help you beat the winter blues.
1. Maintain a Healthy Routine:
The winter is full of excuses for not staying active or maintaining a healthy lifestyle. It is important to keep doing everyday tasks that you normally do at other times of the year, including exercising and eating healthy. This consistency may help you focus on the task at hand, rather than the blues. You can stay active by stretching, doing yoga, dancing to your favorite song, or participating in your favorite winter sport. The smallest activity can help you get through even the toughest day.
2. Soak up the Sun:
The shorter days in the winter play a big role in feeling the winter blues. Many people get out of bed when it is still dark outside, go to work, and then come back home when it is dark again. The lack of sunlight can throw off your rhythm – both emotionally and physically. Try to go outside for at least a few minutes during the day, especially when the weather is mild. If you cannot get outside, try opening blinds, sitting by a window, or turning on overhead lights. This extra light may help you regain this rhythm.
3. Talk (or Think) It Through:
If the winter months make you feel blue, remember that you are not alone. Talk to your family and friends. Most likely, they have felt or are feeling the winter blues too. Share tips with each other that have helped. Another way to fight the winter blues is by writing down or thinking about at least three things you are thankful for each day. By focusing on the positive, you can help change your mood and outlook on the season.
4. Do Something You Enjoy:
It may be hard to become motivated when you are feeling blue. This can be especially hard in the winter when it is cold and dark outside. It is essential to still do things you enjoy! Challenge yourself to take up a new activity, socialize with friends and family, or make a list of winter activities you like to participate in, such as ice skating, playing in the snow, or simply reading a book while drinking hot chocolate. Try to do something fun every week, or even every day. It is important to look forward to something you like to do, instead of feeling like you are trapped inside.
If you are finding that the winter blues make it hard for you to function and those feelings continue for several days or weeks, consider reaching out to a counselor or therapist who may be able to help. For more information or support, you can also email one of the Caregiver Lifeline Program social workers.
“The Home Cook Heroes program gives us the opportunity to connect directly with the people we help serve – in real time. Every time we’ve been there, the guests – and staff – have been so grateful for what we do.” – Greg Dommel, Voya Financial
As the clock approaches 6 o’clock, inviting aromas of roasted pork tenderloin, breaded tilapia and berry cobbler beckon guests into the dining room. Even after three main courses, lots of sides and plenty of desserts, there are rarely any leftovers from this particular group’s Home Cook Hero meal!
Since its inception, the Voya Financial team has been nothing but committed. Greg Dommel, their team leader, created the Home Cook Heroes program through his company. Like many employers, Voya Financial strongly encourages staff to get involved in the community, offering incentives to encourage them to take advantage of volunteer opportunities, including 40 hours of paid time each year to volunteer.
The Voya Community Partners initiative presents several opportunities to get involved throughout the year. All opportunities are selected by employee nominations in an effort to interact with organizations and causes important to its employees. Because Gift of Life Howie’s House was near and dear to Greg’s heart, he has been ensuring his company’s involvement in our programs since 2011, when the Howie’s House first opened.
Greg has a close personal connection transplantation, as one of his own family members needed a heart transplant in the early 2000s. He mentioned commuting back and forth from Lancaster to the Philadelphia area for transplant care was a strain on his family. He understands the important need of the Howie’s House and is thankful that families traveling g to Philadelphia for transplant care nowadays have a warm and inviting place to stay.
When the opportunity arose, there was no question in Greg’s mind about where he wanted to direct his time in volunteering. He quickly formed the Voya Financials Home Cook Hero team and was excited to hit the kitchen.
The team’s natural talent to “rebrand” has not gone unnoticed by Howie’s House guests and staff! Greg recalls one day the team was scheduled to volunteer at the Howie’s House, “Mark and I finished off our grocery shopping with a diverse range of desserts including a Mixed Berry Pie with Lattice Top. During the car ride from West Chester to the Howie’s House, contents shifted. When we unpacked our groceries, the pie was still sealed and fresh – but was no longer anything close to being pie-shaped.” Being fast on his feet and thinking with marketing savvy, Mark took the object formerly known as a pie and placed it in a slow cooker. “Just like that, our pie was rebranded as ‘Mixed Berry Cobbler.’ Interestingly, our ‘cobbler’ was one of the most popular items that night!”
Volunteering at the Howie’s House means a lot to the entire Voya Financials team, even beyond having a personal connection to transplant. “It gives us the opportunity to connect directly with the people we help serve – in real time. Every time we’ve been there, the guests – and staff – have been so grateful for what we do.”
For other corporate companies looking to start a team, figuring out where to start can be a challenge. Greg sheds some light on the issue: “I quickly learned to surround myself with people who enjoy cooking. Initially, most of our Home Cook Heroes team came from my Marketing group, but soon expanded to other departments. We have a revolving door of frequent volunteer cooks, but our lead chef, Mark Siciliano, helps coordinate the planning and execution of our meals.”
The Home Cook Heroes program offers a unique and engaging opportunity to get involved in both the local and the transplant community. It provides a chance to engage directly with the people you are helping. Working with your coworkers, family, friends or classmates, groups of up to 10 people can prepare meals (on or off site) and serve them to our guests. Just bring yourself and your food and we will provide everything else in our modern, fully-equipped kitchen. For more information about the Home Cook Heroes program or to sign up, please click here.
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