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
Since we opened our doors, Organ Recovery Systems (ORS) has been a proud supporter of the Howie’s House and has helped us care for transplant families in many ways!
“Supporting the transplant community is something I personally take to heart, and Gift of Life Howie’s House goes above and beyond by offering a comfortable and intimate residence for transplant patients and their families,” says Matthew Copithorne, Vice President, Sales and Marketing at ORS.
In 2011, ORS made a generous financial commitment to our mission by underwriting our kitchen – a capital campaign gift that helped us welcome transplant families home. Since then, many of their staff members have volunteered in our Home Cook Heroes Program to prepare home-cooked meals for our guests. ORS also generously supports our annual Kidney Open Golf Outing, which raises funds for our Adopt-A-Family Program.
More recently, they found another way to help by sending a generous donation of hand sanitizer!
“Partnering with Gift of Life Howie’s House has been so rewarding to us, and years later our team still counts down the days until we can visit with and cook for recipients and their families,” says Kayla Andalina, Marketing Manager.
ORS was founded on a passion to help improve patient outcomes in transplantation and honor the gift of life. Their support of the Howie’s House helps provide transplant patients and their family members with a place to call home while far from their own. We are so thankful for their partnership and look forward to serving transplant families with them in the future!
When deciding to accept the Development internship at Gift of Life Howie’s House, I can’t deny the fact that I had slight hesitation. I had worked so hard to maintain some form of normalcy upon my mom receiving her heart transplant from Temple University Hospital in 2014. Growing up, it had always just been my mom and me. When we found out she would need a heart transplant, we both were not only in shock, but incredibly scared.
At the time, I was just shy of 18 years old entering my senior year of high school. I thought my biggest challenge that year was going to be applying to colleges; however, that didn’t come close to what I would be up against. I couldn’t help but feel completely devastated. All I could think about was my old routine. What my mom and I had done practically my entire life. We would get up in the morning together and I would dress for school and she for work. I would rush out of the door to catch the bus while she ran after me to ensure I had some form of breakfast. We would separate for the day until around 6:30pm when she would come pick me up from track practice and we’d go home for dinner.
This routine was so important to me because it set the tone for the rest of my day. My mom always sent me off with nothing but smiles and positive energy. It didn’t matter if we had an argument the night before or if I was just grumpy that morning from studying late at night. She always made sure I felt her love before I headed out the door.
This was a routine I would never experience again.
For the first three months of senior year, I spent my time going to school and then rushing to the hospital to visit my mom, which became her new home. I would sit and do my homework and apply to colleges. My mom was very adamant about making sure I was still getting my work done and taking the necessary steps to further my education. While college began to feel less and less important, I somehow managed to get through several applications with the assistance of my mom.
Finally the time came! After three long months, which felt more like three years, my mom received her precious gift of life on November 1st 2014, exactly one month after my 18th birthday. It was the best present I could have ever received!
Now transitioning to life after graduating from Temple University, I knew working at the Gift of Life Howie’s House was the right decision. I was determined to not allow my previous hesitation to stand in the way of an amazing opportunity, so despite my own fears of revisiting my past trauma, I accepted the offer!
When my first day approached, I didn’t exactly know what to expect, but I felt ready. I entered the gates of the Howie’s House and walked through the doors approaching the Front Desk. Everyone was so incredibly welcoming and friendly; I truly did feel a sense of home immediately.
It almost felt therapeutic for me to be in a space that nurtured and cared for people that were going through exactly what I went through. It was a powerful experience for me to engage with families on a professional and personal level at the House. I didn’t expect to feel such a rush of amazing emotions. I am so grateful for the Howie’s House and the experience I gained both professionally and personally. My last day will be such a bittersweet moment because I have curated such great connections with guests and the staff that I hope last beyond this opportunity.
Ashley and Bobby were busy planning their wedding when Bobby became ill and required a double lung transplant. Quickly their lives were turned upside down. Ashley became a caregiver at just 27 and has learned how to manage the new life transplant brings.
How did your transplant caregiving journey begin?
I became a caregiver to my husband who unexpectedly fell ill and received the amazing gift of life—a double lung transplant. His five year transplant anniversary will be on 3/20/20, which is also our wedding anniversary. We were married in the hospital just before his surgery.
What has been challenging for you?
Learning to best manage a life that others are not accustomed to has been the most challenging. While spending time with family and friends is so important to us, we have to be careful around those who are ill because the effects could be devastating to Bobby. Despite the challenges of this new life, it’s ALL worth it because someone made a selfless decision to save someone else’s life through organ donation. My husband is here because of that decision.
What would you say to a caregiver new to the transplant journey?
Work hard for your loved one and advocate for them when they can’t. And don’t forget to advocate for yourself, because you are just as important! Not all of your loved ones will understand what you’re going through, and that’s okay! Make sure you use your resources to find the support you need, including online or in-person support groups, a therapist, or spending more time with those you feel most supported by. And don’t forget to keep up on your own personal hobbies. They can do wonders for your spirit and perseverance!
The Caregiver Lifeline Program is supported in part by TD Charitable Foundation and Bridge to Life. We are thankful for their partnership and generosity.
Since 1996, Gift of Life Donor Program has hosted the Donor Dash to promote organ and tissue donation and to raise funds to educate the community about the critical need for more people to register as organ and tissue donors.
All proceeds received through fundraising for the Donor Dash benefit Transplant Foundation, the charitable foundation supporting the mission of Gift of Life Donor Program. All funds raised at the Donor Dash go to support programs and activities designed to increase organ and tissue donor awareness, including sponsorship of Team Philadelphia’s participation in the Transplant Games of America, programs and activities in support of donor and recipient families, including the Gift of Life Howie’s House.
Register Now
The Dash celebrates the life-saving power of donation and honors all of the donors who make it possible. By supporting Gift of Life and the Donor Dash, you will help raise awareness about the critical need to increase the number of those registered as organ and tissue donors. We are looking to partners like you to help make a difference in the lives of those affected by organ and tissue donation. There are more than 5,400 people men, women, and children waiting in our region for a second chance at life through an organ transplant. You can help us make a difference!
Event Details
- Date: April 14
- Location: Philadelphia Museum of Art
- 10K run begins 7:10am
- 5K run begins 7:20am
- Kids Fun Run begins 7:45am
- 3K walk begins 8:30am
Registration:
Now through noon on April 9, 2019:
- 3K Walker: $30
- 3K Walker Upgrade: $55*
- 5K Runner: $35
- 5K Runner Upgrade: $60*
- 10K Runner: $40
- 10K Runner Upgrade: $65*
*Upgrade by March 14 to receive a Dash tech tee and running hat. Gift of Life will mail your tech tee and running hat before the Dash!
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.
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