Kidney Transplant
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
From a young age, Kirby was always active. Born in Memphis and raised in Mountain Lakes, New Jersey, she participated in many sports including dance, gymnastics, figure skating, track and field, diving, rowing and cheerleading. Kirby accomplished a dream of hers by qualifying for the 84’ Olympic trials for gymnastics, something she had been training for since the age of 10.
However, Kirby began experiencing health complications which forced her to spend less time participating in the activities she loved. She even had to stop working. Kirby eventually found out she would need a life-saving kidney-liver transplant to survive.
Kirby and her husband Scott packed up and traveled from their home in New Jersey to Philadelphia to receive treatment at Einstein Hospital. She was admitted on June 3rd, her birthday, and was quickly put on the transplant list. She and Scott were hopeful that there she would receive her life-saving gift and the help they were both searching for.
While Kirby was hospitalized, Scott stayed at the Gift of Life Howie’s House, which was recommended to him by his transplant social worker. Kirby soon received her precious gift of life. After a successful surgery, Kirby remained at the hospital for one month after her procedure and then joined Scott at the House for a total of six weeks.
“The staff members at the Gift of Life Howie’s House were always, happy, smiling and cheerful,” Kirby says. “When I arrived tried and weak in me wheelchair, they already knew my name and had everything I needed ready. It was peaceful, no beeping sounds from monitors and no unscheduled nurse visits at all hours of the day. I felt like I could exhale. I felt like I was home.”
Scott and Kirby loved the comfort of the House and the tremendous support they received. Scott would often attend the support groups hosted by the Gift of Life Howie’s House’s social workers. “If Scott was in a hotel, he would have spiraled,” Kirby explains. “We were so grateful for the love and support from the House and other transplant families.”
Additionally, Scott and Kirby loved the convenience of home-cooked meals prepared every night by Gift of Life Howie’s House volunteers and engaging with other families that were also going through the transplant process.
Kirby loved that conversation at the House was so open. “There was never a need to feel embarrassed because everyone staying at the House had experienced something similar,” she shares.
At the House, Kirby was able to work on her physical therapy exercise in the fitness center. She was also encouraged to continue her occupational therapy on her journey back to normalcy. When it came time for Scott and Kirby to pack up their bags and head home, there was a moment of sadness; it was hard to leave.
“Everything happened so quickly,” Kirby says. “The Gift of Lift Howie’s House has been there for us on our journey, during and afterwards,” Scott explains.
Kirby and Scott still to this day share bonds with many of the families they met at the House. They look forward to returning to see familiar faces when visiting for follow up transplant appointments and feeling the sense of community the Gift of Life Howie’s House provides. We look forward to seeing Scott and Kirby for their next visit here with us!
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
What a beautiful day we had for our 14th Annual Kidney Open Golf Outing on Monday! We really sank a “hole-in-one” for our transplant families and made the outing a huge success!
Thanks to the participation and generosity of our community, we raised more than $108,000 to support our Adopt-A-Family Program, which will help us continue carrying out our mission to care for transplant families in need, even to those who cannot afford our nightly fee.
Thank you so much!
Remembering the words of Steve and Audrey, our guest speakers and past Howie’s House guests: “The Howie’s House provides you with what you need to get through transplant…and they give you a family. You feel like you belong.”
It is your support that helps us remind those undergoing the transplant journey they are not alone. While Steve was recovering from his lung transplant, Audrey was able to stay by his side here at the Howie’s House. Whether you joined us for a day of golf, sponsored part of our outing, or volunteered to support our staff, you helped make more experiences like Steve’s and Audrey’s possible.
If you were unable to attend this year’s outing, we hope to see you next year at the 15th Annual Kidney Open Golf Outing!
We’d also like to thank all of our sponsors for supporting this event! Thanks to your help, our transplant families will be well taken care of!
Golf Cart Sponsor
Main Line Health
Dinner Sponsor
Bridge to Life
Gift and Putting Contest Sponsor
NORA – Nationwide Organ Recovery Transport Alliance
Double Eagle Sponsors
AmeriHealth Caritas
CSL Behring
Glenmede
Highmark Blue Cross Blue Shield Delaware
Quick Courier Service
VRL Eurofins
Apparel Sponsor
Community Tissue Services
Eagle Sponsors
Beneficial Bank
Elite Landscaping
Independence Blue Cross
Lions Eye Bank of the Delaware Valley
Mohan USA
Organ Recovery Systems
The Palopoli Family Trust
TD Bank
Venture Jets
Beverage Cart Sponsor
Lincoln Financial Group
Lunch Sponsor
LifeNet Health
Registration Sponsor
QuickSTAT
Course Refreshment Station Sponsors
Sightlife
Sovereign Insurance Group
Coffee Station Sponsor
Gillespie Electric, Inc.
Practice Range Sponsor
CTI Clinical Trials
Einstein Healthcare Network
Birdie Sponsors
Baker Tilly Virchow Krause, LLP
Christiana Care Health Services
Premier Orthopaedics
Dan Sinnott
Closest to the Pin Contest Sponsor
Kimmel, Carter, Roman, Peltz, & O’Neill
Longest Drive Contest Sponsor
Arthur Jackson
Straightest Drive Contest Sponsor
WYE Realty Advisors
Hole-In-One Car Sponsor
Lexus of Chester Springs
Hole Sponsors
Arthur J. Gallagher & Co.
Darrell J. Baker, Esq.
Eckert Seamans, LLC
FusionSpark Media
Linda Barrasse
Miller Pipeline
MWealth Advisors
Nationwide Healthcare Services
PermaFloor Keystone Inc
Waters Medical Systems
The ladies of Rutgers Gang have kept their college friendships especially strong. They began volunteering as Home Cook Heroes when the Howie’s House opened in 2011, and have continued their commitment to serving transplant families in honor of a member whose relative passed after while waiting for a multi-organ transplant and another whose daughter received two kidney transplants.
At least once a month, these women come together not only to catch up, but to prepare and serve a warm meal for our guests. “Some people don’t realize the stress on caretakers is very hard,” Barbara, one of the members, says. “It’s good to sit down, relax, and enjoy something other than a boxed meal.”
For one of their first meals, they prepared a big lasagna dinner. However, when they found out most other Home Cook Heroes groups were serving Italian-style meals, they started to change things up. Since then, they’ve served breakfast for dinner, Mexican meals, and have even barbequed outside.
“We’ve got our routine down to a science,” Barbara says.
After they finish cooking, the ladies will often go out to dinner themselves, bringing their husbands and boyfriends along with them.
“It’s fun to get together with my friends,” Barbara says. “It’s also fun to do something for others. We all love cooking and it’s something we can all do. The Howie’s House is so life-changing. It feels like home.”
We’re so grateful these women have found a home here at the Howie’s House and that by volunteering with us, they’re honoring important people in their lives.
We’ll see you next time, Rutgers Gang!
“I was nervous the first time I came through the doors of Gift of Life Howie’s House.
My mom had been so sick for so long … she was having dialysis three times a week. So I was really thanking God that she had the opportunity to receive a kidney transplant. I came to visit her for a week over the holidays, and I expected the Howie’s House to be a big, noisy, busy hospital. I was very surprised to find that it was a beautiful and quiet!
We had a really special Christmas together. We made a gingerbread house along with some of the other families who became friends to us, which was really nice because our other family was so far away.
The Howie’s House was a great blessing to us and to a lot of other families. Please make a gift now, while every dollar can go twice as far to help other patients and their families when they need it the most.” -Yani Barrow
To help families like Yani’s who rely on the Howie’s House during a most difficult and uncertain time in life, a generous friend has offered a $50,000 Matching Gift opportunity. Like you, this caring friend wants every transplant family to have access to an affordable place of rest, delicious home-cooked meals, and a warm and caring community of support. So every gift received prior to the December 31st deadline will be matched dollar for dollar, ensuring that more transplant families will experience a “home away from home” at the Howie’s House.
In today’s age of technology, a simple Facebook search can reunite long-lost friends, but it can also lead to the greatest gift of life—an organ transplant. Spending their summers growing up together in South Amboy, NJ, Gail Boscian and Mary Casey-Griffin grew incredibly close. However, after their families moved away from one another, they lost touch for about 30 years until they were reunited through social media.
“I have plans to live. We had many good times and they are not over yet—they are just beginning. This is the next chapter of our lives.” – Mary Casey-Griffin
Mary, born with polycystic kidneys, was officially diagnosed with Kidney Cancer around age 45. At that point her health rapidly declined. Having worked as an art teacher for 25 years, she tried to continue her work in administration but her health impeded her career. On peritoneal dialysis for 10 hours a day, “I was tethered to my bed –it was really getting me depressed.” In 2015, she was diagnosed with kidney cancer and needed a nephrectomy—removing both of her kidneys this past September. Her husband, son and daughter-in-law all wanted to be her living donor but were unfortunately unable to.
Meanwhile in Ohio, Gail had recently moved back to be with her family and future husband. Having just received foot surgery in March of 2015, Gail was confined to the couch for eight weeks during recovery. After playing around on social media out of sheer boredom, she remembered her long lost friend, Mary, and decided to do a search for her. After plugging her name in on Facebook, there she was! They connected and quickly became friends again.
Gail explains, “We started talking on the phone and I found out about her kidney and I said, ‘Oh, no, no, no, no—you can’t live like that!’” So without hesitation, Gail offered to be tested to see if she was a match to be Mary’s living kidney donor.
Just five months later, in August, she discovered she was an exact match for Mary. Out to lunch with two friends on a random afternoon, Mary received a call from Gail: “I just heard from our transplant center and it’s a go!”
Mary recalls, “I couldn’t even talk… I was crying and I couldn’t believe she would do something so selfless.”
Gail has struggled with the attention this selfless donation has ignited. She explains, “I don’t like people saying how wonderful I am for wanting to help my friend. I guess it’s amazing to me that more people don’t donate. I love her, she’s become like a sister to me.”
After endless phone conversations, these two women finally had the opportunity to reconnect in person before the scheduled surgery as guests of Gift of Life Howie’s House.
Upon arrival they were both immediately impressed with the Howie’s House and all the services provided to transplant families. Gail’s impression of the facility was simple: “I Love it,” she says, “there is just so much to do here!” Mary calls the Howie’s House “a godsend; I cannot imagine how important the Howie’s House is to the people that stay here. The Library alone is just amazing – it’s worth every stay here!”
Sitting around a table in the Howie’s House dining room eating Jell-O and beef broth, they were anxious to try all the delicious food prepared by the Home Cook Hero volunteers. Not being able to eat before surgery, they were dreaming of hoarding the cake from the night’s volunteers to save for a post-transplant treat.
We are happy to say that Mary and Gail’s surgeries went very well and both are recovering here at the Howie’s House. And now, looking to the future, the opportunities are endless. Mary says “I see myself living. I want to go to Ireland, New Orleans, Las Vegas, Ohio—to visit Gail—to take a few art classes. I have plans to live. We had many good times and they are not over yet—they are just beginning. This is the next chapter of our lives—we took a brief hiatus and now we are back!”
At the Howie’s House love is manifested in many ways – consider joining our mission to support and show love for transplant patients and their families. Learn how to get involved or show your support through a financial gift visit, www.GiftofLifeFamilyHouse.org.
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