Howie's House Blog
by Jacquelyn Kates, LSW, CT
Family Support Counselor, Gift of Life Donor Program
Gift of Life Donor Program encourages transplant recipients to write to their donor families. Our Family Support Services Counselors review all correspondence and facilitate the exchange of letters between recipients and donor families.
FAQs for Communicating with Your Donor Family
The hospital did not give me much information about my donor. How can I find out more information about my donor and donor family?
For confidentiality purposes, recipients are not given personal information about their donor or donor family. However, recipients are encouraged to write to their donor family should they wish to learn more.
I do not want to upset my donor family by writing them a letter. When is a good time to write and send the letter?
The best time to write and send a letter is when the recipient is ready. Acknowledging the gift of transplant and thanking the donor family can be an important step in the recipient’s own healing process. If the donor family is not ready to receive a letter, they have the choice to keep it unopened.
Who in my family can write?
Anyone is invited to write to the donor family.
What should I write in my donor letter?
There is no perfect letter. We recommend saying thank you to the donor family for their compassionate decision or honoring their loved one’s wishes. A recipient could share how their life has changed since transplant and what they hope to accomplish with a second lease on life.
Is there anything I should not write?
Identifying information such as last names, addresses, phone numbers, email, and social media accounts may not be shared. If this information is included, it will be removed prior to forwarding to the family. However, make sure recipient includes full name, address, date of transplant, transplant center, and organ received on a separate piece of paper. This information is needed to identify the donor family and forward the letter.
Where should I send my letter?
Gift of Life Donor Program
Attn: Family Support Services
401 N. 3rd Street, Philadelphia, PA 19123
Is it normal to feel guilty after receiving a transplant?
It is very common for recipients to feel guilty after transplant, which is sometimes known as survivor guilt. Speaking to other recipients in a transplant center support group setting or talking with a donor family can be helpful in relieving these uncomfortable feelings. Gift of Life Donor Program and Howie’s House have many donor family volunteers that are open to talk with recipients about their experience.
Can the donor family write to me/my family?
The donor family is able to write to recipients following the same guidelines and process.
When will I hear from my donor family?
Unfortunately, a recipient may not hear from their donor family. Grief is a unique experience and some families may not be ready to write or may not want to.
How can I meet my donor family?
Donor family and recipient meetings are shown in the media, but many recipients do not have the opportunity to meet their donor family. Before a meeting can take place, it is important that there be an understanding of what might occur at a meeting. That’s why Gift of Life Donor Program requires that the donor family and recipient write several letters to build a relationship through correspondence before meeting. Both must express an interest in sharing contact information and meeting. At that point, Family Support Services will send Consent and Release forms.
Once the signed forms are received, personal information will be shared to facilitate direct communication.
Have you ever wondered how the people and charities you care about will fair when you are no longer here to help them?
A good way to make certain that your values live on is by writing down what’s important to you. Another is by making provisions in your estate plan to ensure your charitable support continues.
By including the Howie’s House in your will/bequest, you can help to ensure that the Howie’s House is able to maintain their affordable fees and broad array of services for all who need support— now and in the future. It is an easy and simple way that you can support the future of the Howie’s House, and continue care for transplant patients and families. Bequests can be a percentage of the
remainder of your estate or a specific dollar amount. If you already have prepared a will, you can simply add a codicil amending it to include the Howie’s House.
IS YOUR WILL DUE FOR AN UPDATE?
Here area few reasons that individuals or couples may need to update their will:
• A change in marital status
• The birth or adoption of a child or grandchild
• The death of an individual included in your will
• Retirement or relocation to another state
• A change in assets
• The start of a new business
• New tax laws
ALREADY INCLUDED THE FAMILY HOUSE IN YOUR WILL?
Let us know so we can celebrate with you now! Enjoy recognition today as a Legacy Society member. Donors who notify us that they have made arrangements for planned gifts will be recognized as members of our prestigious Legacy Society. Visit www.GiftofLifeFamilyHouse.org for more information.
TO DISCUSS MAKING A PLANNED GIFT TO GIFT OF LIFE FAMILY HOUSE OR IF YOU HAVE ALREADY NAMED US IN YOUR WILL, please contact Sara Cohen, Development Manager at 267-546-9812 or email scohen@giftoflifefamilyhouse.org. Please consult your attorney, tax advisor or financial advisor before making a bequest or updating your estate plan.
Caregiver Lifeline
Spotlight
by Laura Giannotti, MSW
Gift of Life Howie’s House Social Worker
Finding Support through your Hospital Chaplain
The transplant journey can bring up many different emotions, questions, and even doubts about your spiritual or religious belief system. For some, faith and spirituality may grow during this time, while for others it raises questions and doubts. Hospital/medical chaplains can offer support and comfort for you and your family regardless of faith, spirituality, practices, or belief system. Chaplains are professionally trained individuals who reach across all faith lines to support patients and their families during a difficult medical time.
How can the Chaplain help you during the transplant process?
Be an additional support person by providing a listening ear Chaplains can offer a warm, compassionate, and judgment-free presence. There may be times when at the hospital you feel lonely, anxious, angry, or confused. Talking with the chaplain about your experiences and feelings may help you feel better. Chaplains recognize that patients and families come from different cultural and religious backgrounds and their goal is to offer you guidance and support in line with your beliefs and comfort level, not force their own beliefs on you. Along with offering support, a chaplain can lend an ear to simply hear your fears and celebrate your joys. Whether you are deeply spiritual, do not believe in a specific religion, or fall somewhere in between, you may want someone to talk to and hear your thoughts. Chaplains can be a sounding board for you, and even offer support around decision making and finding meaning in your own or a loved one’s illness.
Support your beliefs and practices and provide guidance Faith can impact one’s emotional and physical well-being and chaplains can help you strengthen your spiritual health, if desired. This can be in the form of discussing faith-based questions you may have or discussing uncertainties about what you are going through. It can be a conversation around deepening your beliefs. A chaplain may be able to help you with your spiritual needs, such as lending you a Bible, prayer rug, Sabbath candles, etc. Although the resources available will vary among different hospitals, chaplains want to support you and address your spiritual needs in any way that they can. Additionally there may be a time when you want to participate in a religious ritual or receive a sacrament– the chaplain can help you by leading, scheduling, and sometimes even designing these rituals and sacraments. They can also pray with you and for you at any time – while you are at the hospital with the patient for a transplant evaluation, post-transplant appointment, during a hospitalization, while you or the patient is waiting to go into transplant surgery, or while you are visiting the patient in recovery.
Help you connect or reconnect Is there someone you would like to connect or reconnect with? Chaplains can act as mediators or reconcilers when needed. They can also help you connect to a faith community or with a particular belief system. If you would like someone from your faith community to visit, a chaplain may be able to coordinate this visit as well. Hospital chaplains are typically available between Monday and Friday, but at many hospitals, services are available 24 hours a day. Contact your hospital chaplaincy office or speak to your transplant social worker or nurse for specific information regarding their services and your needs. Additionally, please feel free to contact the Caregiver Lifeline Program Social Worker at CaregiverLifeline@GiftofLifeFamilyHouse.org.
Future Business Leaders of America to Create Awareness and Support Transplant Families
Students of the Souderton Area High School Future Business Leaders of America (FBLA) recently hosted a bingo fundraiser to raise funds for Gift of Life Howie’s House as well as raise awareness for organ and tissue donation as part of their community service project.
The fundraiser involved several FBLA students including Jayme Barnett, whose father received a life-saving liver transplant in September 2016.
“The mission of Gift of Life is important to me, especially now since my father received a transplant that saved his life. My focus for this project was to be able to educate others on organ and tissue donor awareness and help the mission that has saved so many lives… I also wanted to support those who are going through the transplant process at the Howie’s House.”
On March 29, 2017, members of the FBLA proudly presented the $3,000 proceeds, which will benefit the Howie’s House’s Adopt-A-Family Program.
In addition, the FBLA group has established an Adopt-A-Blanket campaign where donations are collected to support materials to make blankets. With these supplies, students make warm, colorful fleece blankets for transplant patients and their families staying at the Howie’s House. To date, the group has distributed over 100 blankets to transplant families.
This project also served as their platform at the FBLA state leadership conference in Hershey, Pennsylvania in April, where the group placed 5th in the state for their community service project presentation.
Valerie Guerin has been thinking and praying about hearts for a very long time. When she was 20 weeks pregnant, Valerie and her husband, Mark, learned that their baby girl, Cora, was missing her entire left ventricle. The condition is known as Hypoplastic Left Heart Syndrome (HLHS).
From the moment she was born, Cora underwent multiple surgeries to enable her heart to pump enough oxygen-rich blood through her body to sustain her. Though she had a rough start in life, she thrived. She loved to run and go horseback riding, learned to play the piano, and was a wonderful big sister to her bother, Stephen, and sister, Amelie.
When Cora turned 10, it became harder for her to breathe and she was listed for a heart transplant. In spite of this, Cora continued to participate in an after-school club, Character Strides, which incorporates character building and life skills into a running program.
It was difficult for Cora to understand how she could compete in the club’s 3-mile race and still need a heart transplant. That summer Cora was in and out of the hospital and doctors were contemplating putting her on a ventricular assist device (VAD) to buy her time until a new heart became available. During that hospitalization, Cora received a heart transplant and miraculous second chance at life thanks to a charitable act by a donor family. Now 11, Cora received the gift of life nearly a year after she last ran. She’s looking forward to running again soon.
Valerie and her family live in Connecticut where she is a stay-at-home mom. She made the decision to stop working in order to devote herself to managing Cora’s care. Now the mother of three, she describes motherhood as, “The best job I’ve ever known, with three wonderful little employers and a great colleague.”
Though Cora’s heart transplant was successful, the process wasn’t easy. She endured setbacks that kept her in the hospital for over two months. Thankfully Cora’s siblings, and other family members, were able to stay close by at the Howie’s House.
“When Cora was well enough that Mark or I could leave her bedside, we got to spend time at the Howie’s House with Steve and Amee, which meant a lot to us,” says Valerie.
On January 11th, Cora was discharged to the Howie’s House. “I loved the proximity to the hospital of the Howie’s House and the fact that we could focus on Cora’s recovery there,” explains Valerie. “It was wonderful that I didn’t have to bring her to crowded public places. We appreciated the volunteers who came in to cook and those who allowed Cora to cook with them.”
Cora says she also enjoyed visits with the therapy dogs who regularly visit the Howie’s House while her own dog, Waggles, who she rescued, waited patiently for her to return home. She and Valerie also enjoyed getting haircuts from the stylist who visited the Howie’s House.
Adds Valerie, “The Howie’s House is a safe, comfortable place to recuperate and a really great transition to home. We went from the structure of hospitalization to the freedom to relax — when not running to appointments.”
Four weeks after Cora came to stay at the Howie’s House, she and her family got the good news that she could go home.
Mother and daughter have shared lots of hugs throughout the transplant journey. “I admire the way she’s always taking care of me,” says Cora.
Valerie’s wish for Mother’s Day: “That we can stay together as a family and not have to be separated again.”
Mother’s Day, May 14th, is just around the corner. To show your love this Mother’s Day, please consider making a gift to the Howie’s House. In return, we will mail our beautiful commemorative Mother’s Day card on your behalf to your special mother, spouse, sister, aunt, or friend. Learn more here: http://
By Talia Giordano, MSW, LSW Gift of Life Howie’s House Social Worker
Transplant caregivers are not only caregivers – they may also be a mom, dad, daughter, son, sibling, spouse, significant other, friend, peer, boss, coworker, etc. We all wear many hats in our lives – some of those roles may be long-lasting and some may come and go depending on our stage of life. Excelling at these many roles can be very gratifying and even enhance performance in those roles. However, multiple roles can also mean difficulty managing time, potentially disappointing someone or yourself, creating stress, and even feeling burnt-out. It is important to identify ways to manage each of our roles to avoid becoming overlystressed or burnt-out.
PRIORITIZE: Begin by writing down your different roles and important values and responsibilities within those roles. Think about which are most important and current. It’s helpful to be specific here. For instance, instead of writing family, write the specific roles within your family. Family may be very important to you, but your responsibilities related to each role may vary – example mom, son, or spouse. As you think meaningfully about your roles, you begin to identify the values you place within those roles, which can help to better prioritize and manage them
Example:
1. Spouse – spending [quality] time with my spouse, being an attentive and supportive spouse, feeling loved and providing love.
2. Caregiver – providing support and care to my spouse’s transplant needs such as transportation to appointments and medication help, encouraging them by being positive and bringing hope to my spouse.
3. Work/employee – accomplishing something important, feeling financially stable, helping people.
4. Parent – spending quality time with my adult child, providing support, feeling connected.
5. Friend – laughing with friends, having someone to listen, enjoying hobbies with someone.
PLAN: Plan ways to fit important tasks and responsibilities into your schedule and write them into your calendar. If being a spouse and spending time with your spouse is important to you, then plan on ways to spend time together doing meaningful things. At this time you can also begin to think about whether you want to integrate certain roles, or keep them separate from one another. Integrating or separating is completely up to you and what you feel works best. For example – does spending time with your spouse by going to a clinic appointment also count as “spouse time?”
REFLECT: Sometimes we spend time on tasks or responsibilities that are not meaningful to us. It is important to reflect on how you feel about the different roles you play and how you are managing them. After some reflection, you may realize some tasks should be prioritized higher than others. Some tasks may be integrated with others, while some may not. For instance, if you feel your role as a spouse is weakening because your role as a caregiver is strengthening, then you can begin to identify ways to try and separate the two – example: spending meaningful time with your spouse separate from your transplant-related care time together – going to a movie vs. visiting the doctor. Reflecting on this can help you understand where changes might be best made to better manage the many roles you have as well as reduce stress and improve your overall quality of life.
Looking for additional support or information? Please reach out to our social worker, Talia Giordano, at caregiverlifeline@giftoflifefamilyhouse.org or 267-546-9817.
The sweet smell of freshly baked goods straight out of the oven is something that makes a house feel like home. Whether it’s a crisp and delicious apple pie or warm chocolate chip cookies – most of us can remember a time when our mothers, grandmothers or someone we love made our favorite treat at home. One Home Cook Hero volunteer baking group makes sure that the Howie’s House is filled with these delectable indulgences for families to enjoy at their “home away from home.”
The “Four Ladies and Friends” started baking for the guests at the Howie’s House over a year and a half ago. Sandy Kelly, a retired nurse of 30 years and founder of the group, heard about the Howie’s House after attending a conference at Gift of Life Donor Program. She and three of her friends wanted to honor their friend’s son, who tragically passed away and selflessly donated his organs to save others. What was once four ladies has now grown into a group of people who are eager to help. “We started out as the Four Ladies. Now we call ourselves the Four Ladies and Friends because we have all kinds of people who want to contribute,” explains Sandy, “we were connected because of my girlfriend’s son. It really hit home to help here.”
Sandy and her husband have stayed at similar hospitality houses like the Howie’s House when her husband needed to receive care.
“To me, it’s really important. You know a lot of people who are really sick, and they need a place like the Howie’s House.”
As Home Cook Hero volunteers, the Four Ladies and Friends bake a variety of sweets that are irresistible. You name it – the group can bake it. Guests enjoy their pies, cupcakes, brownies, scones and a variety of different cookies. During the holidays, families also help themselves to themed baked goods, such as Halloween cupcakes, Valentine’s Day cookies, St. Patty’s Day donuts and much more! “My step-daughter helps us schedule a time to visit and also bakes. Some of my grandchildren get involved too. We like to volunteer together – it’s really become a family thing,” said Sandy.
When asked of her fondest memories as a volunteer, Sandy said, “The most memorable moment for me was when an elderly woman and her husband, who were staying at the Howie’s House for many months, turned to me and said ‘I’m so impressed with it here – the doctors come in and cooked for us! My husband’s doctor who did his transplant came and cooked!’ You can tell people are so thankful for the Howie’s House.” The woman was referring to her husband’s transplant team who also signed up to be Home Cook Hero volunteers.
One of the many reasons the Home Cook Heroes program is so important to guests is because they can connect with others on a more personal level. Part of what makes Gift of Life Howie’s House a “home away from home” are volunteers like the Four Ladies and Friends who generously dedicate their time, talents and resources to serving families. Whether it’s baked goods or a home cooked meal, Home Cook Heroes volunteers ensure transplant patients and their families have a little taste of home while they stay at the Howie’s House. If you’re interested in becoming a Home Cook Hero, please click here.
Merida Bourjolly and her 16-year-old daughter, Yani Barrow, are two peas in a pod. They both laugh easily and are often told they look and sound alike. They have been through many difficult moments during the past three years as Merida underwent kidney dialysis and then transplant. And yet they remain upbeat and inspire those around them.
Though Merida was born with two healthy kidneys, at three weeks old she developed a kidney infection and her left kidney had to be removed. Three years ago, during a routine doctor visit, she was told that her right kidney was failing. Not long after, she was listed for a kidney transplant. Merida received the gift of life in early December.
Merida’s laugh and smile helped Yani throughout their ordeal. “She has positive energy around her,” says Yani. “I want to be around people like my mom. I try to take her positivity with me to school.”
Merida credits the Howie’s House with helping her maintain her optimistic outlook.
“I felt no negativity there, nothing but encouragement to feel better and to get well. There’s so much love that you experience from the staff, from volunteers who come to cook for us, and those who shuttle us to the hospital.”
Merida continues, “You can’t help but feel happy during your stay. I was never scared or felt like I was far from home — particularly due to the staff. They went out of their way to make us comfortable,” adds Merida. “They were an important part of my care, recovery and well being.”
Yani is studying ballet and modern dance at the prestigious Frank Sinatra School of the Arts High School in New York City. Merida is a cosmetologist and has her own salon where she encourages her clients to pursue a healthy lifestyle. She continued to work three days a week while undergoing dialysis. Merida and Yani would leave their home in Queens at 5:30 in the morning so that Yani could catch a bus and two trains to school and Merida could make it to dialysis early and be home to help Yani with her homework. During Yani’s school breaks, she went with Merida to dialysis so she could see firsthand what her mother was going through.
Merida coped with cold extremities, pain, and cramping brought on by many hours of dialysis, which she needed to stay alive while she waited for a kidney to become available. Regardless of her discomfort, she went to all of Yani’s dance recitals and school meetings.
Yani explains, “God blessed my mother to have this positivity. When I had a show or a meeting, and her muscles were cramping and her body was hurting because of dialysis, instead of her saying ‘No, I don’t feel good,’ she’d always say, ‘I’ll be there.’” In 2015, during her sophomore year, Yani asked Merida if she could be in a pageant. She thought it would help build her confidence. Merida agreed. Yani competed first at the state level in the Miss New York Junior Teen pageant, where she was among the top 10 finalists, first runner-up for talent, and second runner-up for modeling. Her success qualified her to go to the National American Miss pageant in California, where she also did well. These were remarkable achievements, especially since she was new to such competitions. Merida arranged to get dialysis while she was in California, so she could be there to coach Yani and do her hair and makeup.
“I couldn’t have done it without her. She’s a really strong woman. I can’t believe how strong she is.” says Yani.
Merida stayed at the Howie’s House for two months while she was recovering from transplant surgery, with family members coming in from as far as Haiti to be at her side. She credits the healing environment there for her peace of mind. “It allowed me to not have to think of the things that I would have to think of if I was home. It allowed me the comfort of being able to go to the hospital using the shuttle services. The shuttle drivers wanted to know how I was feeling. The social worker wanted to know how I was feeling. The staff really looks out for you and your needs.”
“Staying at the Howie’s House also allowed me to grow spiritually. I experienced a lot of things that I wouldn’t have gotten the chance to otherwise, like hearing the stories of the people who volunteer there and why they come there to give back.” “I’ve made so many friends at the Howie’s House, people I would not have otherwise been able to get to know or to hear their stories. That was huge for me. Finding out about their transplants and how it affected them and their families. It really was a growing experience for me to be there.”
The affordability of the Howie’s House also provided peace of mind for Merida, a single mother. “It was very important to me, knowing that I’m self-employed and was going to have to stop working during my recovery process. Not having to stay in a hotel was really major for me. Then to find out how affordable the Howie’s House made it for us was really a blessing to our family.”
Have you ever wondered how the people and charities you care about will fair when you are no longer here to help them? A good way to make certain that your values live on is by writing down what’s important to you. Another is by making provisions in your estate plan to ensure your charitable support continues. By including the Howie’s House in your will/bequest you can help to ensure that the Howie’s House is able to maintain their affordable fees and broad array of services for all who need support— now and in the future. It is an easy and simple way that you can support the future of the Howie’s House, and continue care for transplant patients and families. Bequests can be a percentage of the remainder of your estate or a specific dollar amount. If you already have prepared a will, you can simply add a codicil amending it to include the Howie’s House.
IS YOUR WILL DUE FOR AN UPDATE? Here are a few reasons that individuals or couples may need to update their will:
- A change in marital status
- The birth or adoption of a child or grandchild
- The death of an individual included in your will
- Retirement or relocation to another state
- A change in assets
- The start of a new business
- New tax laws
ALREADY INCLUDED THE FAMILY HOUSE IN YOUR WILL? Let us know so we can celebrate with you now! Enjoy recognition today as a Legacy Society member. Donors who notify us that they have made arrangements for planned gifts will be recognized as members of our prestigious Legacy Society. Visit www.GiftofLifeFamilyHouse.org for more information.
TO DISCUSS MAKING A PLANNED GIFT TO GIFT OF LIFE FAMILY HOUSE OR IF YOU HAVE ALREADY NAMED US IN YOUR WILL, please contact Sara Cohen, Development Manager at 267-546-9812 or email scohen@giftoflifefamilyhouse.org.
Please consult your attorney, tax advisor or financial advisor before making a bequest or updating your estate plan.
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