Gift of Life Howie’s House

Balancing caregiving for a transplant patient and being a mom can feel like an overwhelming task. Jessica shares her experiences of caring for her son facing the unimaginable challenge of heart failure and the urgent need for a heart transplant.

Jessica, Mother of CJ

CJ, Jessica, and their dog

Q: How have you managed emotionally since CJ has been sick for so many years?

A:It’s hard because I’ve seen him go through this for years, and I can’t fix it. Especially because he wants to be normal and do normal things, and he can’t. It’s mentally and emotionally draining after all these years. I try not to stretch myself too thin, which is important for any mom. When he is hospitalized, I try to take a walk when he is doing well. I have also met other moms with kids in similar situations, which has been helpful. I have people checking in on me every day by phone and text. As a family we try to focus on the positives and enjoy the times we do have because things could be so much worse. I want to preserve the time we have with CJ and focus on the good things as long as I can.

CJ in the hospital

Q: CJ has had a heart condition since birth; he’s now 11 years old, with an LVAD and has been waiting for a heart transplant for almost three years. You also have four other daughters (13, 12, 9, and 6 years old). How do you balance being a mom to your son and three daughters with everything going on?

A: It’s very hard. Our church family helps us with so many things. There were times where he was hospitalized for really long periods. Between 2022 and 2023 he was hospitalized for just about an entire a year, and we had family to support our other daughters. My husband and I try to work as a team to be there for the kids, though it’s hard when we can’t be there together when CJ is at the hospital and the girls are at home. We try to find the little things and moments, like all of us FaceTiming every morning and every night and visiting on weekends.

L-R: Casey, Natalie, Alexia, CJ, Jayda, Tara and Jessica

Q: How has it been for you knowing another mom and family will be grieving a loss when CJ receives his heart transplant?

A: I would never want another child to get ill or be hurt, especially since having my own children and a child who has an illness. When CJ was getting listed for a heart, a nurse encouraged us to think of it differently, that we’re not praying for another child to die for CJ to live, we’re praying for that child’s loved one to have the strength to say yes to donation by blessing CJ with the gift of life in their time of their tragedy. I still struggle thinking about it, especially during the times when CJ has gotten “calls,” but we still pray for those families regardless of whether they would go on to become a donor for CJ.

You can provide hope to the thousands of people like CJ who are waiting for a transplant. Learn more and sign up at www.donors1.org/register

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. 

Tom Fennell and his wife, Alice, traveled almost 1,000 miles from Iowa to Philadelphia hoping Tom would receive a life-saving heart transplant. Far from home, they found comfort and support at Gift of Life Howie’s House, which recently celebrated its 12th anniversary.

 “Howie’s House gave us a safe place to stay, dinners, and camaraderie. It was the complete package,” said Tom. “We were able to connect with other transplant families and it helped us on our journey.”

 Tom’s journey was unusual. Many transplant centers declined to accept him as a patient because of his age. Temple Health in Philadelphia welcomed Tom and, at 74, he became one of their oldest heart recipients.

 Tom and Alice stayed at Howie’s House many months post transplant but were finally able to return home recently. They rang the Chimes of Hope at the House to celebrate (click here for video).

 Thanks to a generous donor hero and caring support at Howie’s House, Tom and Alice can get back to doing the things they love. They have already planned a family vacation at their lake house and hope to travel to Mexico next year.

Caregiver Lifeline Spotlight

Dr. Mark Abdelmalek

Dermatology of Philadelphia

www.dermofphilly.com

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

Watch Dr. Mark’s Webinar Here

PICTURED L-R: Rick Hasz, President & CEO, Gift of Life Donor Program, Troy Ovechka, Jennifer Ovechka, Faith Osborne, LSW, Abby Wells, Talia Giordano, LCSW

For those undergoing the transplant journey, having a place to feel safe and supported during a medical emergency makes a world of difference. While many would agree that there’s no place like your own home, Gift of Life Howie’s House has been providing a home away from home for transplant families for over a decade.

This summer, the House celebrated 12 years of serving the organ transplant community. Since opening in 2011, the backbone of the House has been the generous contributors and dedicated volunteers that continue to support the mission.

Annual Breakfast Honors Generous Community

“It has been an honor to watch the House grow and change due to the support of this amazing community. The House completes the circle of care that begins when someone gives the gift of life. I couldn’t be more grateful to this community for helping fulfill that mission.”

Rick Hasz, President and CEO

To recognize their support, a special breakfast was held for the contributors and volunteers that help make the House’s mission a reality. The annual President’s Breakfast took place on May 12th, and was truly a fantastic morning where lots of laughs, memories, and milestones were shared. The event’s theme was “There’s No Place Like Home”, in honor of the home away from home that the community helps to sustain.

PICTURED TOP L-R: Jan L. Weinstock, Esq., Jennifer Platzkere Snyder, Esq.; Andrew Bowen, Burton John Mattice; Janice Schwartz Donahue, Karen Barnett, Barbara Katz-Chobert;Lesa Kramer, Catheanne Long

Rick Hasz, President & CEO, along with Jan L. Weinstock, Chief Administrative Officer & General Counsel, shared a few words about how integral the generosity of the community is to sustaining the House’s mission. They also shared some exciting House happenings and important milestones reached.

Past guest and lung transplant recipient, Jennifer Ovechka, shared the story of her journey while staying at the House, and the amazing things she has been able to accomplish after receiving her life-saving lung transplant.

“Since leaving Gift of Life Howie’s House, I was able to run a 5-mile race, work full-time as a medical assistant, buy a home, and above all marry Troy, my sweet big guy who never left my side. The House was crucial during my recovery. Every meal at the end of the day was appreciated, and every tidy bed to rest my head was valued.”

Jennifer Ovechka

Lung Transplant Recipient

In its 12-year history, the House has provided thousands of families with the care and services that they desperately rely on while on the transplant journey. Since opening, it has provided over $12,530,000 in subsidized care, over 316,000 meals, and over 88,457 lodging nights of care. Families have never been asked to pay more than $40 a night, and no family has ever been turned away due to inability to pay.

PICTURED L-R: Cynthia London, Dearrdra Hollingsworth, Johann Schneider, Beverly Schneider, Vivian Gano, Tom Gano

Volunteers Provide Valuable Support

Many volunteers help strengthen the mission. Rosie Lemansky, a donor family member and long-time volunteer, has been serving at the House since its inception.

“In my 12 years of volunteering, I have talked to so many of the people and they are incredibly grateful for this place. When I work here on Wednesdays, I see people that have come together that live in different parts of the country, but they’re bonded by their situation and they can relate to each other and I think that is such an important part of it. It makes me feel good to know that I am a part of this whole process.”

Rosie Lemansky

Donor Family Member

Although the journey home after transplant is much more than three clicks of ruby red slippers, the dedication of volunteers like Rosie, along with many generous friends have helped make the House a home away from home for thousands of transplant families.

GIFT OF LIFE EXTENDS ITS GRATITUDE TO THE COMMUNITY

FOR HELPING TO PROVIDE 12 YEARS OF HOME AT THE HOUSE.

Support Gift of Life Howie’s House

Explore ways to support Gift of Life Howie’s House and our mission to provide a “home away from home” for transplant patients and their families by providing temporary, affordable lodging, and supportive services to those who travel to Philadelphia, Pennsylvania for transplant-related care.

Give Today
Donna Nelson with her husband, Dana Nelson, a lung transplant recipient

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.

Donate Now

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)

To enter, click on the registration link below!

Live Festival Agenda

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!

In 2004, Diana Ortiz battled a virus that left her with an enlarged heart. In 2011, her heart began to fail and she started spending several days each month in the hospital. In 2016, she was given six months to live. Ortiz received a left ventricular assist device, an LVAD, to help her heart pump blood throughout her body. She went back home to Allentown, PA, with her partner, Chris Bolden, and her doctor placed her on the transplant list in September of 2017. Shortly thereafter, Ortiz received her life-saving heart transplant and a miraculous second chance at life thanks to a charitable act by a donor family.

Bolden and Ortiz made the three hour trip to Philadelphia where Ortiz underwent surgery to receive her precious gift. While the surgery was successful, her new heart was weak at first. Doctors placed her back on ECMO for the first month and she fell ill to pneumonia. Throughout the ordeal, Bolden rarely left her side. “I only went home twice,” Bolden said. “I visited the hospital every day. Halloween, Thanksgiving, Christmas. On the days I did go home, my first stop of the day was always the hospital.”

Bolden stayed at the Gift of Life Howie’s House for four months while Ortiz recovered. He had a place to sleep, a place to eat, and people to talk to while he supported his loved one. The Gift of Life Howie’s House provided shuttle service for him and other guests to the hospitals where their family members were being treated in Philadelphia. “The shuttle is a lifesaver for people,” Bolden said. “Drivers drop you right in front of the hospital entrance and people on the shuttle have either been through or are going through the same things as you. Drivers are even willing to point out historical landmarks in the city.”

Our House volunteers drive the shuttle which runs several times a day, assisting guests who do not have cars, don’t feel comfortable navigating the city, and/or can’t afford to pay for gas and parking. “Without the shuttle, it would’ve been more of a struggle,” Bolden said. “Parking my own vehicle at the hospital would have cost almost $100 a week.” This past year, more than 4,600 guests climbed aboard our six-passenger minivan. Unfortunately, there were many trips where guests were turned away because the van was full. The minivan also has limited cargo space for stowing oxygen tanks and wheelchairs needed by transplant patients. Recently, we rented an 11-passenger vehicle to better provide for our guests’ comfort and wellbeing. “The new shuttle is roomier. There’s an overhead compartment and more room to get in,” Bolden said.

As part of our spring campaign, we hope to raise $50,000 to put towards a new, 11-passenger shuttle with a bus-style folding door, low steps, a center aisle, and a raised roof to make trips easier for both drivers and riders.

“Without the House, [Chris] would either be living at the hospital with me, or couldn’t come back and forth,” Ortiz said. “I never worried because I knew he had a place to stay.”

We hope you consider supporting our campaign for a new shuttle. Your donation will help guests like Chris Bolden travel back and forth to visit their loved ones and leave them with one less thing to worry about. Click below to make a donation:

Give Now

Laura Giannotti, MSW, LSW, is a Howie’s House Social Worker

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.

Gift of Life Howie’s House is proud to spotlight members of the Legacy Society who have made planned gifts to support the future of the House.

  “It takes a lot to keep the Gift of Life Howie’s House running, and to be able to provide rooms for people who otherwise wouldn’t be able to have a place to stay. I think it’s very important that this continue.” – Jean Jones

Sam and Jean Jones, Legacy Society members

Jean and Sam Jones are passionate supporters of the Gift of Life Howie’s House.

Jean Jones vividly remembers what it was like spending an entire summer living in a hotel in Washington, D.C. after her son’s organ transplant in 2006, because there was no transplant house. “There were a lot of people that we got to know – some from Philadelphia – who really didn’t have any place to stay,” says Jean, who is from New Jersey. “It was very difficult for them.”

After her son’s successful transplant, Jean learned about our plans for the Howie’s House and the rest, as they say, is history. “When I heard about the Gift of Life Howie’s House, I thought, ‘Oh my gosh, that is just wonderful.’ So I got involved and then I signed up to be a volunteer.” In addition to Jean’s role as a volunteer, she and her husband, Sam, are generous supporters and great friends of the House. They also recently joined our Legacy Society.

Having experienced first-hand the plight of transplant families, Jean is especially interested in helping the Gift of Life Howie’s House fill the need for affordable lodging and services. “It is just wonderful that families are able to stay a night, or as many nights as they need to, have transportation to the hospital, have meals, and help from a social worker – anything they need. That’s so much better than just being on your own in a big city and trying to find a place to stay – and having no one to talk to or help you.” Jean explains that making provisions to include the House in their will is their way of continuing to help long after they are gone. “When you put it in your will, you know it’s going to go where you want it to go, to what you are passionate about.”

Jean and Sam support a number of charitable organizations, especially those that directly serve people. We are very grateful that the Gift of Life Howie’s House is among them. “It takes a lot to keep the House running, and to be able to provide rooms for people who otherwise wouldn’t be able to have a place to stay. I think it’s very important that this continue. The more I can help them to do that, the better.”

Gift of Life Howie’s House invites you to join Sam and Jean Jones in supporting the future of the House by becoming a member the Legacy Society.

Joining the Legacy Society is easy. Simply include the language below in your will directing a charitable gift to the Gift of Life Howie’s House and then let the House know about it. Such a bequest can take many forms including cash, stocks, or other gifts of value. A future gift made through a bequest may provide tax advantages that benefit you, your estate and your beneficiaries.

When you become a Legacy Society member, your gift will be acknowledged right away and you will be enrolled in various recognition activities, including an invitation to the yearly President’s Appreciation Reception. Your name will also be published in the Gift of Life Howie’s House’s quarterly newsletter and on its website and, for members who make bequests of $10,000 or more, your name will also be added to a special Legacy Society Wall being built in the Howie’s House living room.

When you make a bequest to the Gift of Life Howie’s House, you will help to ensure a “home away from home” for the transplant families who will need support for years to come. And, you will have the satisfaction of knowing that your deeply held values will live on through the loving care the House provides.

Sample language for making a bequest: “I give, devise, and bequeath to Gift of Life Howie’s House, a non-profit 501(c)(3) charitable organization located at 401 Callowhill Street, Philadelphia, PA 19123, EIN 26-0585694, or its successor-in-interest, [insert dollar amount or percentage] for its unrestricted use and purposes.”

Click here for more information about the Howie’s House and planned giving options and to download a Legacy Society Membership form.

As with any tax-deductible gift, you should consult with your tax advisor to determine the degree to which your gift may result in tax advantages to you, your estate, and your beneficiaries.

News & Events

20th Annual Kidney Open Golf Golf Outing

The 20th Annual Kidney Open Golf Outing will take place on Monday, 8/19 at the DuPont Country Club

Heroes Among Us

CELEBRATING THE HEROES WHO MAKE THE MISSION POSSIBLE

Securing Comfort for Transplant Patients and their Families

Supporting the enhancement of the security system at the House

Celebrating Success: Strokes of Kindness Art Contest and Fundraiser

Gift of Life Howie’s House is thrilled to announce the winners of Strokes of Kindness Art Contest

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