Howie's House Blog
Support the Adopt-A-Family Program. Consider making a tax-deductible gift to the Adopt-A-Family Program – each $40 contribution helps support one night of lodging for a family staying at the Howie’s House who cannot afford the nightly fee. You can contribute to sponsor one night, two nights, a weekend or more. Gifts of any level are meaningful.
Host an Event! From golf outings to intimate dinners in your home, there are countless ways you, your family, and friends can fundraise for the Howie’s House. Fundraising events are also a great way to reconnect with family and friends and remember or celebrate a loved one while supporting our important mission.
Become a Home Cook Hero! Groups of up to 10 people can provide, prepare (on or off-site) and serve a meal to guests staying at the Howie’s House. Enjoy cooking in our fully equipped kitchen as well as seeing the impact of your service on our families first-hand.
Host a Wish List Drive! Keeping the Howie’s House stocked with basic home necessities – such as food, toiletries, and pantry items – requires a lot of donated items. This is an excellent activity to involve your family, company, religious group, or friends. You can also collect grocery store gift cards to keep our refrigerators stocked with the things we run out of most – milk, eggs, and butter! The Howie’s House is also in need of gas cards to keep our free shuttle service operational – transporting patients and families to and from local hospitals each day.
Join the Legacy Society for Planned Giving. By making a “planned gift” – a gift through your estate – you can ensure the future success of Gift of Life Howie’s House and have the satisfaction of knowing that your values will live on through the loving care we provide.
Be a Corporate Partner. Through volunteerism, sponsorship, grants and program support, hundreds of corporations have partnered with Gift of Life Howie’s House to support transplant patients and their families. In return, corporations receive unique recognition, brand visibility through our various communications tools and social media platforms as well opportunities for employee team building events and ways to engage and reconnect with clients. If your business or corporation is interested in supporting programs or other initiatives at Gift of Life Howie’s House, we would be happy to help create a mutually beneficial partnership.
The Gift of Life Howie’s House rounds out a ‘circle of care’ for transplant patients and families
Our ‘home away from home’ has helped thousands find peace of mind and hope.
‘Where does a polar bear keep his money?” teases 5-year-old Amelia Torgersen to our reception desk staff who have been eagerly awaiting her arrival. “In the snow bank,” she answers and giggles.
Every time Amelia comes running into the Gift of Life Howie’s House with her parents, Bonnie and Brian, she immediately looks for the smiling faces she has come to know and trust. She brings her latest stuffed “friend” and asks that it be given a yellow wristband ID, just like hers.
It’s hard to believe that bouncy, fun-loving Amelia had a liver transplant just nine months ago, or that she is now undergoing chemotherapy for PTLD (Post-Transplant Lymphoproliferative Disorder), a complication that can occur after transplant. Amelia has struggled since birth with Alagille syndrome, a rare genetic disorder characterized by abnormalities to the bile ducts that harm the liver and can affect other parts of the body. The genetic defect that causes Alagille can be inherited, or occur randomly.
Amelia had heart and kidney surgeries, even before her liver started to fail. At that point, the Torgersens relocated from their home in Nashville, Tenn. through Brian’s employer — first to Florida and then to Pittsburgh. They wanted to be as close as possible to The Children’s Hospital of Philadelphia and its renowned Alagille Syndrome Clinical Care Program, and for her transplant surgery.
Not one to complain, Amelia now bravely faces too many ‘ouchies’ during chemotherapy, but looks forward to staying at the Gift of Life Howie’s House where our staff make her feel special.
Five years of caring
On July 11th, Gift of Life Howie’s House celebrated its fifth year of serving transplant patients and their families receiving care at one of the eight transplant centers in Greater Philadelphia. In this short time, we have served more than 1,300 transplant families, many of whom have stayed with us several times over the course of their loved one’s care. In total, we’ve provided over 33,000 room nights of comfort.
“At first, we didn’t know if it was going to work,” says founder and CEO, Howard Nathan, reflecting back on the leap of faith that brought together benefactors, board members, health care providers, government agencies, and other supporters to help build a “house” for patients and families going through the transplant process.
Today, the success of the Gift of Life Howie’s House is evident. “I ask almost every day about occupancy. It makes me proud when 28 out of our 30 rooms are filled. It reminds me that we did the right thing, that the need that’s desperately there is being met.
“I think what sets us apart is our staff members who are there, available, and who care 24/7,” notes Howard. “I think that families understand that and are touched by it.”
The Torgersens agree. When Amelia came to stay at the House after her liver transplant in December, she was drawn to the kid-size Adirondack chairs on our patio. But because it was cold and snowy, she couldn’t sit outside. When they came to stay in the spring, Amelia’s first thought was to run outside to sit in ‘her’ chair, but the chairs weren’t there, explains Brian. “So we go inside to Diana Elbanna (resident manager) and Amelia says, ‘Miss Diana, where are the little tiny girl chairs?’ And Diana says, ‘They’re not out there?’ So there was this brief commotion over the chairs. The next week, guess what, the little tiny girl chairs were there.”
Adds Bonnie, “Even on the days that are difficult for Amelia, she talks about sitting in ‘her’ chair. And so the patio is somewhere we can go with her at the end of the day where she has a little time to sit in her chair and just relax and refuel for the next day.”
Whether it’s having access to a fully stocked pantry and tasty leftovers if they miss the evening meal, or toiletries they forgot to pack, the Gift of Life Howie’s House is a safe and comforting haven for them. “We don’t lack for anything there,” says Bonnie.
Rounding out a ‘circle of care’
A ‘circle of care’ for transplant patients and families begins when a person with end-stage organ failure is listed for transplant. The list is national and Gift of Life Donor Program works with its partners around the country to find willing donor families and viable organs.
“The reality is that the number of people who can donate is very small. Only about 1 to 2 percent of all of the people who pass away can be considered as potential organ donors,” explains Howard, who has been with Gift of Life Donor Program since 1978 and is its President and CEO. “In our region, out of about 40,000 people who die each year in the 129 hospitals we serve, there are only approximately 800 who could be potential organ donors. That’s why there’s a shortage. It’s not because people are unwilling. It’s because the number who are medically suitable is very small.
“This year we’ll have over 500 organ donors and more than 1,300 people receiving transplants in our region. That doesn’t sound like a big number, but it’s the largest anywhere in the United States, probably the world, for any one region.”
Gift of Life Donor Program is responsible for working with the transplant teams to preserve the organs and safely transport them to waiting surgeons, patients, and families. The Gift of Life Howie’s House takes care of families while their loved ones are waiting to be transplanted, during recovery, and throughout post-transplant care. While other transplant houses typically serve one transplant center, the Howie’s House serves all eight centers in its vicinity. “That’s pretty unique, and I’m very proud of that,” says Howard.
In addition to affordable lodging, home-cooked meals, and transportation, the Gift of Life Howie’s House also provides education, counseling, and emotional support through its Caregiver Lifeline Program. The first of its kind, this program provides a supportive network and educational services specifically tailored to the needs of organ transplant patients, family members and caregivers — those staying at the House as well as those living in the broader community.
For the Torgersens, the House is a “tool in a toolbox” to make life easier. “When you’re at that point of fear and anxiety — things that come with the unknown — there’s somebody that’s got your back. It doesn’t make anybody’s individual situation better, their difficulties are going to be just as challenging, but to know somebody’s got your back is meaningful.” explains Brian.
Making every day count
When traveling down the long and winding road of caring for a chronically ill loved one, it is easy to lose focus on the everyday things that give life meaning.
“We had to work very hard to give Amelia what we feel is the best quality of life: That is, to step away from the clinical side of things and remember that she’s a little girl — and take her to the beach, take her to Disney, take her to the park. Sometimes with the medical side of things, you almost want to put life on hold — until transplant, or until she’s done with chemo, or things like that,” explains Bonnie.
For Amelia’s fifth birthday, at her request, the family went camping. When the weather turned warm, they packed Amelia’s medical gear, along with their camping gear, and headed out to Allegheny National Forest. “Amelia is definitely an outdoor girl,” laughs Bonnie. “We gave her a choice of going out on a boat or hiking. She picked hiking. She had a little walking stick. She kept saying, ‘I’m the leader, follow the leader.’ She loves to explore. She enjoyed studying the rocks, the different leaves, and trees. That’s her happy place.”
Adds Brian: “She doesn’t understand life. As far as she knows, it’s kind of rough, because it’s always been rough. But she’s a fun, loving spirit that when you’re around her you just smile. And you don’t do it because she said something funny; you do it because she’s this sweet, beautiful thing.”
Although they have health insurance, the Torgersens have faced substantial out-of-pocket costs, since Amelia’s birth, for medications, medical supplies, formula for her tube feedings, and travel to and from Philadelphia. “By the time you put all of the pieces together, it’s a costly process,” says Brian.
Securing the Howie’s House’s future
“Each year, we have to raise about $1.7 to $1.8 million dollars just to keep the doors open,” notes Howard. Driving the need for funds is the Gift of Life Howie’s House’s commitment to maintaining a low nightly rate of $40 even though the actual cost for providing all of the included services is $165 per room per night. Each room accommodates up to four people. Families who can’t afford the nightly fee are given subsidies. “We don’t turn anyone away because of their inability to pay,” adds Howard.
The House depends on charitable contributions, large and small, to make this possible. “Last year we had over 2,300 individuals or organizations give us charitable contributions. I wish I could name them all. We’ve even had grade school kids hold fundraisers and collect money at school. Businesses will do dress-down days and collect $5 from everybody wearing blue jeans. Those combined gifts of $200, $300, they help.”
The Gift of Life Howie’s House works, adds Howard, because of neighbors helping neighbors, whether through charitable contributions or by volunteering.
“Every time I walk through the door at the House, it really makes me proud of our team, of the families who are courageous in going through transplantation, and our volunteers. When I meet our Home Cook Heroes — many of whom are transplant families — and our other volunteers, I am truly grateful. We simply couldn’t do it without them.”
To make a charitable gift to the Gift of Life Howie’s House, or to volunteer, please use the enclosed envelope or visit us online at www.GiftofLifeFamilyHouse.org.
Stay tuned over the next few months as Gift of Life Howie’s House unveils a special way that you, your family and friends can celebrate 5 years of the House!
“We are indescribably grateful for the Howie’s House and how positively it has affected the outcome of our situation. Without the Howie’s House, it would have been very difficult for Ash to be with me every single day, both financially and logistically. Without her unyielding emotional support and care, I wouldn’t be as well off as I am today. Guaranteed. And without the support and the positive environment of the Howie’s House, Ash wouldn’t have been as available and emotionally present for me. The Howie’s House truly is a ‘home away from home’!” – Bobby Adams
On March 20, 2015, Bobby and Ashley Adams of Bordentown, NJ were newly married and Bobby had just received his precious gift of life, a double lung transplant. Yet there were many events that led to these miraculous events.
Bobby Adams grew up with the privilege of enjoying a healthy, care-free lifestyle. He had always enjoyed doing things outdoors, such as camping, hiking, snowboarding, and mountain biking. In January of 2015, that came to an abrupt and unexpected halt. Bobby started feeling very sick and, with symptoms only worsening, Ashley took him to the local emergency room. Neither of them had any idea that Bobby would be hospitalized for the next three and a half months – the majority of which were in critical condition.
When Bobby was first admitted to the hospital, he was quickly intubated and placed on a ventilator for life support. His lungs were failing, fast. The cause of his lung failure was unexpected.
After being diagnosed with Acute Interstitial Pneumonia and ARDS, Bobby was placed on ECMO, an additional type of life support, which oxygenates the blood. He was then placed into a drug-induced coma while doctors worked around the clock to try to save his life. While in this coma, doctors broke the news to Ashley that Bobby’s only chance at survival would be to receive a double lung transplant.
Ashley felt like she was living a nightmare. Nothing felt real. Within a few days of being informed about the need for Bobby to receive a transplant, a social worker at the hospital told her about Gift of Life Howie’s House. She didn’t know much about the Howie’s House at the time, but she knew she was grateful to not have to pay thousands of dollars for a hotel room in the city with her mom, or sleep on a friend’s couch anymore. The Howie’s House was a very affordable alternative. What she quickly learned, however, is that besides not having to worry about the expense of lodging, the Howie’s House also provided her with hot meals, cooked by people who really wanted to help, rides to and from the hospital, and the opportunity to meet some amazing people who understood the frightening reality of what Ashley was dealing with; including House guests, volunteers, and staff.
The 2015 Gift of Life Howie’s House President’s Reception took place the same day that Bobby was listed for a lung transplant. At that time, Ashley and her mom were in attendance at the reception as Howie’s House guests. For this year’s President’s Reception – honoring the Founders’ Circle and 2015 Family Circle members – Ashley and Bobby were invited back to the house – not only to share their incredible story with event attendees, but also to celebrate their one year wedding anniversary and Bobby’s first ‘Transplant-a-versary’. They were honored to be there with some of the most generous supporters of the Howie’s House and to share the miraculous conclusion of their incredible transplant journey.
Just two days after being listed for a transplant, Ashley and Bobby decided to get married right then and there, bedside in the hospital ICU. Moments before their wedding ceremony, doctors came in to the room to give them the incredible news: they had a prospective donor for Bobby! After everything that had happened in the months leading up to this point, for two such miraculous things to happen in one day seemed to Ashley a sign that everything would be okay after all.
Ashley and Bobby couldn’t have been happier on that particular day in March of 2015. Within a few days, Bobby had a new bride, new lungs, a new life. Bobby is now back to work, grateful for a little more normalcy and enjoying many of the things he still loves to do. All the while, the newlyweds are incredibly grateful for Bobby’s donor and his family for making the selfless decision to choose organ donation, which allowed for Bobby’s life-saving transplant. And the couple is also indescribably grateful for the Howie’s House and how it positively affected the outcome of their situation – and which is only made possible by all of its wonderful supporters, especially its generous Founders’ and Family Circle members.
A New Definition of “High School Sweetheart”
“I look forward to that time when I can come back here for dinner and sit with my new friends that I have made. I don’t know how I would have made it through these past three months without this place…” – MaryAnn Finlay
Their love story started in high school art history class and continued 30 years later when MaryAnn discovered Joe needed a lung transplant to survive.
After dating on and off in high school, Joe Finlay was called away for his work in the United States Army. Life intervened and sent MaryAnn and Joe in different directions. Besides the occasional phone call, they lead very separate lives with their individual work and family.
Fast forward 30 years, MaryAnn, living in New Jersey, had a dream where she saw Joe with an oxygen hose in his nose. She decided to call Joe, who was living in Virginia at the time, only to find that Joe really was sick. He had been diagnosed with Pulmonary Fibrosis, an incurable disease.
“I told Mary that she was not going to have much of a future with me—the doctors told me I only had two years to live,” said Joe.
After talking daily, they decided together, “No more missed chances, and no more regrets. Life is too short. Nobody knows what is going to happen today or even tomorrow.”
They were married that same year. “We said no more wasting time. We are soul mates.”
After the couple married, Joe‘s condition worsened and in 2013 he was diagnosed with a bacterial pneumonia. He also had developed bladder cancer—meaning he had to wait an additional two years before being placed on the waiting list for a transplant. And as those two years progressed, the worse his condition became.
The couple eventually traveled to Philadelphia for preliminary transplant testing. They were thankful to be able to stay at Gift of Life Howie’s House during those long two weeks of testing –and MaryAnn especially appreciated that she could be by her husband’s side to care for all his needs. “He was very bad at that point where every five minutes I was running to him with an emergency breathing bag.” MaryAnn explains.
Acting as the permanent caregiver to her husband, MaryAnn says, “It is important to know that the pain and suffering that the caregiver goes through is just as bad as the pain and suffering that the patient goes through. Even though we are not going through the physical aspect, it’s the emotional aspect—that when I see this man who was so strong and could do everything, is now deteriorated to where he cannot even pull the covers over his shoulders. I would just cry myself to sleep.”
After Joe and MaryAnn returned home from Philadelphia for that initial testing, Joe’s conditioned declined drastically. MaryAnn rushed Joe to their local hospital and quickly learned that, other than hospice, there was nothing that they could do. So MaryAnn drove Joe back to the hospital in Philadelphia, where he was admitted immediately. He would not leave the hospital until he had his transplant.
Joe received his gift of life, a lung transplant, just two weeks later on March 4th 2016. MaryAnn was able to be by his side at the hospital every single day, thanks to her “home away from home” at the Howie’s House.
“It is a hard journey for all transplant patients—it’s painful and it’s hard. And if I can stress enough—they must have a support system. I was there [at the hospital] every single day. My focus was on Joe and getting him through this hard time,” explains MaryAnn.
Although Joe’s memory is a bit cloudy from his post-transplant complications, he remembers MaryAnn and her smiling face every day while he was in the hospital. Joe says “She came every day. I told her, keep bringing that beautiful smile and everything will be alright. And she did.” He remained at the hospital for two months following his transplant.
During those long months while Joe was hospitalized, MaryAnn found comfort at Gift of Life Howie’s House. “I don’t know how I would have made it through without that place. I would take the shuttle every morning, be there from 8 o’clock to 4 o’clock at night, come back and eat my dinner.”
MaryAnn recounts how when she first arrived she would sit alone in the dining room decompressing from a long day at the hospital. However, as the weeks turned to months, she started making friends with all her fellow guests. “We would all join together and tell each other stories of what was happening with our family members. Sometimes we would cry together. I met wonderful friends here! I started to look forward to that time when I could come here at dinner and sit with my new friends that I have made here. I wouldn’t want to stay anywhere else.”
In May of 2016, MaryAnn and Joe Finlay were finally able to return home to New Jersey. They say this experience has made them even stronger – as individuals, and as a couple.
Are you – or someone you know – in need of resources specific to caregivers of transplant patients, like MaryAnn? Visit our Caregiver Lifeline page for more information to help guide you and your loved ones through the transplant journey. Or check out our new Transplant Caregiver Support Group on Facebook by clicking here
This week, Gift of Life Howie’s House volunteer Howard Pritchard will be heading to the Transplant Games of America in Cleveland, OH. As a proud member of Gift of Life Donor Program’s Team Philadelphia, he will be competing in the 5K walk and run, cycling, and the cornhole bean bag throw event. Pritchard is a Transplant Games veteran; he has competed 7 times, even winning gold medals!
Pritchard was a living donor to his younger brother, having donated one of his kidneys to give his brother a second chance at life. “He didn’t want me to do it, but I did it anyway,” Howard Pritchard told the Daily Times in 2012. “It gave him an extra 10 years and he was a great person.”
As Pritchard stated, “one of the main reasons I do participate in the Transplant Games is to honor my brother.” Pritchard’s brother was also involved in the Transplant Games: bowling in 1998 and 2000 and later, alongside his brother, in the 5K run. Prichard’s brother sadly passed away from juvenile diabetes in 2001.
This year, Pritchard will once again honor his brother while going for the gold! And he will be accompanied by five other athletes from his hometown area, Delaware County.
Congratulations and good luck Howard!
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
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.
By: Lucia Cucinotta
Director of Community, Anjali Power Yoga
Take a deep breath in and a deep breath out and I am sure you will already feel a sense of ease. The key of meditation is breath. Allowing yourself the opportunity to breathe helps relax the body, decrease tensions, and help the mind process. Meditation can be an easy, affordable and effective way to reduce the stress and tension caused from being a transplant caregiver. If you simply take 3 to 5 minutes of your day on the below meditation exercise, you can make meditation a healthy life habit.
Find a seat
Sit on the floor, sit on a chair, you can even stand. Finding your seat is finding a place where you can take a few minutes to clear your mind. If you are lucky to find a quiet space, go there. If not, see if you can face a wall or blank space to avoid visual distractions. You can find your seat anywhere, even in your car, the point is to find a space where you can be. If you have a timer on your phone, set it now for 3 to 5 minutes.
Get grounded
If you are sitting, press your sit bones into the ground, lengthen your spine, and bring your shoulders up and back. You want to feel grounded to the earth so you can press down to lengthen and straighten your spine. Engaging your lower core (abs) will help keep your spine long and strait. You can fold your legs or keep them long in front of you. Place your hands on your knees or the tops of your thighs, palms facing up if you need to feel lifted and palms facing down if you need to feel grounded.
Close your eyes
To focus inward for a few moments you must shut your mind from what is going on outside of you. As you close your eyes you will feel your seat shift as your body gets used to this new focus. Avoid squeezing your eyes shut. Close your eyes with ease and begin to relax your face.
Focus on your breath
Begin to take deep breaths by inhaling through your nose and exhaling through your nose. Start with a 3-count inhale and 3-count exhale until you build to a 5-count inhale and a 5-count exhale (ex: breathe in deeply and count to 3 in your head, breathe out slowly and count to 3 in your head). When you reach the 5-count inhale and 5-count exhale, imagine the sounds of your breath are waves of the ocean. Touch the ground or wiggle your toes to feel the sand. Smell the salt air. Perhaps even begin to hear the seagulls. Keep your eyes closed, focus on the center of your forehead, and keep your 5 count inhale and 5 count exhale. Envision the sun as it rises over the horizon in front of you. Allow the colors to paint the sky of your mind. When the sunrise reaches its most radiant point (or when the timer goes off), open your eyes. Sit there for a moment and allow yourself to feel the new sense of ease that has washed over your body and mind.
Make it a habit
You can do this simple meditation exercise for 3 to 5 minutes or more. Remember, some say it only takes 18 days to form a habit. If you can take 3 to 5 minutes out of your day, every day, for 18 days, you can make meditation a healthy life habit!
For more resources and ideas on reducing stress, please visit our Caregiver Lifeline Program webpage at www.GiftofLifeFamilyHouse.org.
It was 33 years ago when Cindi and Russell Westendorf met at the Hospital of the University of Pennsylvania (HUP), purely by coincidence. Now, happily married with 3 grown children, they found themselves back at the same hospital, but this time for Russell to receive a life-saving lung transplant.
Prior to Russell and Cindi meeting, Cindi was a graduate student in Philadelphia studying counseling and creative arts therapy. Russell had gotten into a very serious motorcycle accident and was transferred to HUP, a hospital close by where Cindi was studying, to receive bone grafts. He stayed there for many months during his recovery. Cindi’s family, who knew Russell’s family, recommended she stop by his hospital room for a visit as she was already in the area – and they have been together ever since.
“I think one of my biggest reliefs was finding the Gift of Life Howie’s House, to be honest with you. That is when my heart felt better because I knew my wife was going to be okay.” — Russell Westendorf
After they got married, they settled in Colts Neck, NJ and had three sons. Russell worked as a stone and tile setter. A union man at heart, Russell loved his job, especially the fact that his hours allowed him to be home with his kids and his wife. However, it was very tough on his physical health and Russell developed a serious lung disease. Surrounded constantly by dust, insulation, and other hazardous materials, “it physically beat me up. Lung disease was part of what I did. It took some getting used to, but slowly my health got worse until suddenly I’m using 17 percent of my lung capacity, and started to have to use the oxygen.”
She is My Rock
Because of his illness, Russell was listed for a lung transplant in 2014. All too familiar with caregiving and support, Cindi, an art and trauma therapist, has been right by his side throughout his entire transplant journey. Russell could not be more grateful for their partnership, “She is my rock and probably the most giving person I’ve ever met in my life.”
After two years on the transplant list, the couple was getting into bed one night about a week before Christmas when they received the call that donor lungs were available. They rushed to Philadelphia, over 70 miles from their home at 2:30 in the morning and, upon arrival, Russell went right into surgery. He awoke on December 19th with the gift of life – a new pair of working lungs – thanks to someone’s selfless decision to say yes to donation.
After the transplant surgery, Cindi was able to stay at Gift of Life Howie’s House while her husband was in recovery. Russell said, “I think one of my biggest reliefs was finding the Howie’s House, to be honest with you. That is when my heartfelt better because I knew my wife was going to be okay.”
On Christmas morning, a few days after the surgery, the doctors moved Russell back into the ICU due to a complication. Cindi, who was staying at the House, got a call from the hospital explaining the situation. “I got up, so startled. I didn’t even think about it being Christmas but I woke up, got dressed, got myself together and opened the door and there were all these gifts [from the staff]. It was really special; it’s just a little thing like that that made me feel like we were in the right place at the right time.”
Recovery at Gift of Life Howie’s House
Russell recovered from the complication and was released from the hospital a few weeks later. He was then transferred to the Gift of Life Howie’s House to continue his recovery. After hearing so many wonderful things about the House from his wife, he had high expectations upon arriving: “When I got here, I was totally blown away. Everybody here is just wonderful, very supportive. The thoughtfulness that went into planning this place and the relief of having meals is unbelievable. And I love the fact that you can sit around and share experiences with other transplant patients.”
Though the couple remarked on many wonderful aspects of the House, Russell’s favorite, in particular, was the Home Cook Heroes program. This volunteer-based program invites people from all over the community to come to the House to prepare a home-cooked meal for Gift of Life Howie’s House guests. Russell especially enjoyed the variety of nutritious meals, “It’s all been fabulous—the whole concept that people do this for us is so nice. It has really helped me open up my pallet and try different things that I normally wouldn’t,” said Russell. “I wouldn’t even eat salad at home and now I am trying new things, like guacamole. It’s given me a new lease on life – healthy eating is important for my recovery.”
Russell and Cindi are thrilled to have a place where their sons can come for visits, a place where they can meet new families and volunteers and continue trying new foods. But above all, they are relieved to have a place where they can relax and work on getting Russell’s physical health back to normal. Russell says, now more than ever, they will both continue to live by their personal motto: “Be Positive—that’s my blood type.”
By Carlene N. Bowen, RD, LDN, CNSC
Malnutrition prior to transplant is common amongst most end organ diseases. Prior to transplant, most patients have to follow some dietary restrictions due to the limitation of their organs. Some patients hope that having a transplant will elevate some of those dietary restrictions and bring improved quality of life. Contrary to some medical advice, a transplant patient cannot “eat whatever they want”.
The immunosuppressant medication that is taken to protect the new organ may cause some nutrition-related complications, which may require new or additional dietary restrictions. Some of these complications includes, but not limited to diabetes or NODAT (new onset of diabetes after transplant), excessive weight gain, hypertension (high blood pressure) and hyperlipidemia.
The cause of NODAT is multifactorial, with can include, but not limited to factors such as the post-transplant medication regimen, age, weight status and family history. The onset of NODAT can be delayed or prevented by practicing a few healthy habits. Monitoring your blood glucose level is critical step in knowing your risk for DM; this should be done with each post-transplant doctor visit. Your doctor can check a hemoglobin A1C level; this test gives a three month average of your blood sugar. A number greater than or equal to 6.5% indicates a diagnosis of NODAT.
Take control of your diet by limiting foods that contain added sugars such as sweets, desserts, and sugar-sweetened beverages. Instead, choose foods that contain whole grains and that are lower in calories and fat. By making these healthy food choices and exercising on a regular basis, you can maintain a healthy weight and delay diabetes.
Excessive weight gain is common in the transplant population; this can be caused when dietary restrictions are gone thus liberalizing the diets. Some medication can cause an increase in appetite, which leads to overeating of not so healthy foods. Chose foods that are fresh and minimally processed, which include whole grains, lean meats, low-fat dairy products, fruits, and vegetables. Ongoing nutrition education and regular physical activity are two keep components in preventing excessive weight gain. Weight management programs such as Weight Watchers can help the patient to lose and maintain a healthy weight.
Hypertension is a common side effect of immunosuppressant medications. A diet that is low to moderate in sodium (2000-3000 milligrams/day), along with weight management and exercise may help in the management of high blood pressure. Medication maybe required if the blood pressure remains elevated, despite a having a healthy lifestyle. Choose foods that are made from scratch and limit use of pre-made or boxed foods. If you use canned foods, chose those that are labeled as “no added salt” or “low sodium”.
Hyperlipidemia is also a common side effect of some of the immunosuppressant medications that are prescribed. Limiting fats in your diet can help to lower your risk of heart disease. Choose lean meats, poultry, and fish or beans, peas, nuts, or seeds. Cook using low-fat methods like baking, broiling, or steaming. Reduce the amount of fat and oil you use, as well as, using healthier oils, like canola or olive oil.
In addition to following a healthy diet, it is important for a post-transplant patient to take precaution to avoid foodborne illness, by selecting, cooking and storing your food. Some of the basic rules include avoiding undercooked meats, poultry, eggs, raw fish, such as sushi or sashimi, and raw milk or unpasteurized dairy products. Avoid herbal supplements and any over-the-counter medications that were not prescribed by your transplant team.
The registered dietitian (RD) at your transplant program is a great resource for food safety and nutrition information after transplant. If your program doesn’t have an RD, you can find on at the Academy of Nutrition and Dietetics (AND) website www.eatright.org under “Find an Expert”.
About the Author
Carlene N Bowen, RD, LDN, CNSC is registered dietitian for the Jefferson Transplant Institute (JTI) and have over fifteen years of experience in the field of nutrition and dietetics. She has been in this current position for the past six years, where she provides nutrition education for the transplant patients in the heart, kidney, liver, and pancreas program. She also works with any potential kidney and liver donors. She is also a preceptor for nutrition students from various internship programs. Carlene enjoys volunteering with the various organizations, such as The American Heart Association- (AHA) Passion Committee, the American Liver Foundation ( ALF) and the National Kidney Foundation (NKF). She is a member of the Associate Medical Advisory Committee (AMAC) of ALF Mid Atlantic Division and the Academy of Nutrition and Dietetics.
Resources: “Nutrition Following a kidney transplant” Renal Dietitian Practice Group 2015
For more transplant support, please check out the Caregiver LifeLine Program and its resources here!
March is National Social Work Month!
In celebration, the Howie’s House would like to thank and recognize some of the local social workers who help donor families and transplant patients around Gift of Life’s region! Every Saturday, check back and read about a new social worker in the local community. Also be sure to be on the lookout for their transplant caregiver tips throughout the month via the Howie’s House social media!
LARA MORETTI has been a social worker at Gift of Life Donor Program since 2003. She’s worked in a variety of social work fields, from working with adolescents, to hospital/ transplant social work, to employment assistance, and even spent some time working for an internet advertising company in the 90’s! She’s no stranger to transplant social work because her first field placement in graduate school was with heart failure/heart transplant patients!
Why did you decide to go into Social Work?
I knew I wanted to go into some kind of counseling and helping profession (my mother was a guidance counselor) but I knew I wasn’t interested in becoming a full time therapist. Social work seemed like a good way to combine my helping and therapeutic skills while using other skills in a variety of setting. I also was always interested in the medical field and started as a hospital social worker. The job at Gift of Life came at a time when I was looking to try something different in social work.
What is your favorite aspect of your job?
I love when a donor family tells me that talking to me has helped them. So much of what I do is grief education for these families. They may have experienced loss before but this sudden, unexpected loss has them reacting in such a different way, that often they feel like they aren’t grieving normally. Most of them are experiencing normal grief; they just don’t know it. Being able to educate them and give them permission to grieve the way they are grieving is hugely rewarding.
What is your favorite way to relieve stress?
Losing myself in a good book or “This American Life” podcasts.
News & Events
Stay Connected
Sign up to receive email updates featuring transplant stories of hope and ways you can get involved with the Howie's House.
"*" indicates required fields
