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
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!
“The Howie’s House is a very special place for everyone. Not just the guests, but the volunteers too.”
Most donor families, while they may correspond with their loved one’s recipients, don’t often get the opportunity to meet the recipients in person. When a donor family member does have the opportunity to meet a transplant recipient, even if the gift did not come from their own loved one, these interactions can be very meaningful and of much comfort to them. This is the feeling members of Hearts of Gold get when they come to the Howie’s House. Hearts of Gold is a donor family support volunteer group run through Gift of Life Donor Program, and its members meet regularly at Gift of Life Howie’s House to participate in the Home Cook Heroes program, where they can interact with transplant recipients and families.
Diane Milbourne, Hearts of Gold team leader, explains, “Being at the Howie’s House gives us an opportunity to talk to transplant recipients and those who are waiting for a life-saving transplant. It is probably the first time that potential transplant recipients and their families come into direct contact with donor families. It is important for both of these groups to interact, to hear each other’s stories. We are happy to share the story of our loved one and reassure people that the gifts they are receiving are done so because our loved ones wanted to give the greatest gift of all, the gift of life.”
Having served their first meal just a few months after the Howie’s House opened in July 2011, Hearts of Gold has since returned three times every year to prepare dinner or brunch for transplant families. “We remember when we first started cooking, their weren’t too many guests in the House, now there is always a full House. The Howie’s House is truly a blessing for each family who is coming to Philadelphia for their medical needs.”
Hearts of Gold aims to serve meals that bring comfort to the guests staying at the House. Because all of the members of this team have had loved ones in the hospital, they relate to the stress and anxiety that caregivers can feel on a daily basis. The team explains, “At that most stressful time of our lives, we were not interested in eating, but knew it was necessary. We know it is the same for the guests staying at the Howie’s House after a long day at the hospital. Comfort foods are just one small way for our group to help them.”
From chicken pot pies to casseroles and soup, the group always tries to make a different comfort food. However, nothing can top the popularity of their trademark meal, “Breakfast for Dinner.” Serving the guests eggs, bacon, sausage and home fries, Hearts of Gold ties it all together by making their special heart-shaped pancakes!
The group volunteers at the Howie’s House to remember, honor and celebrate their loved ones. The members find healing through the Home Cook Heroes program and other opportunities with Gift of Life Donor Program. “The Gift of Life organization has been there for each donor family at our worst possible time. Physical activities, like cooking together as a group, releases the endorphins in our brains, which makes us look at life in a more positive way,” explains one of the Hearts of Gold members.
Interested in getting experiencing the benefits of the Home Cook Heroes program for yourself? Gather your friends, family or coworkers together and participate in this heart-warming program which provides an essential means of healthy support for transplant families staying at the Howie’s House. Dinners are served every night of the week, along with brunch on the weekends. These meals afford our tired guests with the opportunity to decompress, share their experiences and find solace in a communal setting. Volunteers donate their time and the food, and get to see the impact of their efforts on the families they serve, all the while learning the importance of supporting organ donation in their own lives. Come try it out! Click here to learn more about the Home Cook Heroes Program.
by: Kirsten Diegel
Take a Lap – Walk around the whole cafeteria to see the selection. Cafeterias may change the menu daily, and sometimes they have seasonal specials. As you walk around, take note of which options fit your nutrition goals. For instance, are you trying to lose, gain, or maintain your weight? What did your dietitian recommend?
Food for Thought – Although the staff works hard to prepare foods that are safe to eat, transplant patients need to be especially careful. This is one reason why dietitians spend time educating transplant patients before discharge. Examples of foods to avoid include deli meats and cheeses, salad bars, raw nuts and sprouts, etc. Refer to FDA’s list about food safety as a refresher. If needed, contact your dietitian for an additional copy of Food Safety for Transplant Patients.
Balance Your Plate – Imagine your plate is divided into 4 sections; fruit, vegetable, protein, and whole grains. Aim to have a plate that has food in each section. Of course, this can be a challenge. At a minimum, try to pair a protein (chicken, turkey, fish, beef, peanut butter, milk, etc.) with at least one other food group (fruit, vegetable, or grain). Having a serving of protein will help keep you feeling full!
Sip on This – Beverages can boost your calorie intake and weight, which may be a benefit for some but not so great for others. If you are trying to gain weight, high calorie beverages/fluids, such as whole milk, chocolate milk, fruit/vegetable combination juices, protein shakes are options to consider. On the other hand, if your goal is to lose or maintain your weight, water, unsweetened beverages, and low-fat or skim milk is your best bet. Remember: Canned beverages (ex. soda) are not recommended for transplant patients for food safety purposes.
Keen on Clean – Before eating or drinking anything that you have purchased, take a second to use hand sanitizer to clean your hands, wipe your utensils with a napkin, and wash your fruit. That apple may have been washed in the kitchen, but who knows how many people picked it up before you selected it. During your meal, place your utensil on a napkin or on your plate rather than setting it directly on the table between bites.
About Kristen:
Kirsten Diegel graduated from University of Delaware and completed her Dietetic Internship through ARAMARK in Philadelphia. She is currently pursuing her Master of Science in Health Promotion at the University of Delaware while working as a Clinical Dietitian at Temple University Hospital. Kirsten has worked within the hospital system for 4 years and has been a part of the Lung Transplant Program, one of the oldest and most experienced centers in the region, for the last 3 years. Kirsten is an active runner who is working towards running the New York Marathon in 2017. Kirsten enjoys eating soy yogurt with fruit and almonds/walnuts as a snack to help fuel her workouts, although she will never say no to anything with chocolate.
Gail (left) and Mary (right) enjoying a winter day at the beach pre-surgery.
In today’s age of technology, a simple Facebook search can reunite long-lost friends, but it can also lead to the greatest gift of life—an organ transplant. Spending their summers growing up together in South Amboy, NJ, Gail Boscian and Mary Casey-Griffin grew incredibly close. However, after their families moved away from one another, they lost touch for about 30 years until they were reunited through social media.
“I have plans to live. We had many good times and they are not over yet—they are just beginning. This is the next chapter of our lives.” – Mary Casey-Griffin
Mary, born with polycystic kidneys, was officially diagnosed with Kidney Cancer around age 45. At that point her health rapidly declined. Having worked as an art teacher for 25 years, she tried to continue her work in administration but her health impeded her career. On peritoneal dialysis for 10 hours a day, “I was tethered to my bed –it was really getting me depressed.” In 2015, she was diagnosed with kidney cancer and needed a nephrectomy—removing both of her kidneys this past September. Her husband, son and daughter-in-law all wanted to be her living donor but were unfortunately unable to.
Meanwhile in Ohio, Gail had recently moved back to be with her family and future husband. Having just received foot surgery in March of 2015, Gail was confined to the couch for eight weeks during recovery. After playing around on social media out of sheer boredom, she remembered her long lost friend, Mary, and decided to do a search for her. After plugging her name in on Facebook, there she was! They connected and quickly became friends again.
Gail explains, “We started talking on the phone and I found out about her kidney and I said, ‘Oh, no, no, no, no—you can’t live like that!’” So without hesitation, Gail offered to be tested to see if she was a match to be Mary’s living kidney donor.
Just five months later, in August, she discovered she was an exact match for Mary. Out to lunch with two friends on a random afternoon, Mary received a call from Gail: “I just heard from our transplant center and it’s a go!”
Mary recalls, “I couldn’t even talk… I was crying and I couldn’t believe she would do something so selfless.”
Gail has struggled with the attention this selfless donation has ignited. She explains, “I don’t like people saying how wonderful I am for wanting to help my friend. I guess it’s amazing to me that more people don’t donate. I love her, she’s become like a sister to me.”
After endless phone conversations, these two women finally had the opportunity to reconnect in person before the scheduled surgery as guests of Gift of Life Howie’s House.
Upon arrival they were both immediately impressed with the Howie’s House and all the services provided to transplant families. Gail’s impression of the facility was simple: “I Love it,” she says, “there is just so much to do here!” Mary calls the Howie’s House “a godsend; I cannot imagine how important the Howie’s House is to the people that stay here. The Library alone is just amazing – it’s worth every stay here!”
Sitting around a table in the Howie’s House dining room eating Jell-O and beef broth, they were anxious to try all the delicious food prepared by the Home Cook Hero volunteers. Not being able to eat before surgery, they were dreaming of hoarding the cake from the night’s volunteers to save for a post-transplant treat.
We are happy to say that Mary and Gail’s surgeries went very well and both are recovering here at the Howie’s House. And now, looking to the future, the opportunities are endless. Mary says “I see myself living. I want to go to Ireland, New Orleans, Las Vegas, Ohio—to visit Gail—to take a few art classes. I have plans to live. We had many good times and they are not over yet—they are just beginning. This is the next chapter of our lives—we took a brief hiatus and now we are back!”
At the Howie’s House love is manifested in many ways – consider joining our mission to support and show love for transplant patients and their families. Learn how to get involved or show your support through a financial gift visit, www.GiftofLifeFamilyHouse.org.
“The Home Cook Heroes program gives us the opportunity to connect directly with the people we help serve – in real time. Every time we’ve been there, the guests – and staff – have been so grateful for what we do.” – Greg Dommel, Voya Financial
As the clock approaches 6 o’clock, inviting aromas of roasted pork tenderloin, breaded tilapia and berry cobbler beckon guests into the dining room. Even after three main courses, lots of sides and plenty of desserts, there are rarely any leftovers from this particular group’s Home Cook Hero meal!
Since its inception, the Voya Financial team has been nothing but committed. Greg Dommel, their team leader, created the Home Cook Heroes program through his company. Like many employers, Voya Financial strongly encourages staff to get involved in the community, offering incentives to encourage them to take advantage of volunteer opportunities, including 40 hours of paid time each year to volunteer.
The Voya Community Partners initiative presents several opportunities to get involved throughout the year. All opportunities are selected by employee nominations in an effort to interact with organizations and causes important to its employees. Because Gift of Life Howie’s House was near and dear to Greg’s heart, he has been ensuring his company’s involvement in our programs since 2011, when the Howie’s House first opened.
Greg has a close personal connection transplantation, as one of his own family members needed a heart transplant in the early 2000s. He mentioned commuting back and forth from Lancaster to the Philadelphia area for transplant care was a strain on his family. He understands the important need of the Howie’s House and is thankful that families traveling g to Philadelphia for transplant care nowadays have a warm and inviting place to stay.
When the opportunity arose, there was no question in Greg’s mind about where he wanted to direct his time in volunteering. He quickly formed the Voya Financials Home Cook Hero team and was excited to hit the kitchen.
The team’s natural talent to “rebrand” has not gone unnoticed by Howie’s House guests and staff! Greg recalls one day the team was scheduled to volunteer at the Howie’s House, “Mark and I finished off our grocery shopping with a diverse range of desserts including a Mixed Berry Pie with Lattice Top. During the car ride from West Chester to the Howie’s House, contents shifted. When we unpacked our groceries, the pie was still sealed and fresh – but was no longer anything close to being pie-shaped.” Being fast on his feet and thinking with marketing savvy, Mark took the object formerly known as a pie and placed it in a slow cooker. “Just like that, our pie was rebranded as ‘Mixed Berry Cobbler.’ Interestingly, our ‘cobbler’ was one of the most popular items that night!”
Volunteering at the Howie’s House means a lot to the entire Voya Financials team, even beyond having a personal connection to transplant. “It gives us the opportunity to connect directly with the people we help serve – in real time. Every time we’ve been there, the guests – and staff – have been so grateful for what we do.”
For other corporate companies looking to start a team, figuring out where to start can be a challenge. Greg sheds some light on the issue: “I quickly learned to surround myself with people who enjoy cooking. Initially, most of our Home Cook Heroes team came from my Marketing group, but soon expanded to other departments. We have a revolving door of frequent volunteer cooks, but our lead chef, Mark Siciliano, helps coordinate the planning and execution of our meals.”
The Home Cook Heroes program offers a unique and engaging opportunity to get involved in both the local and the transplant community. It provides a chance to engage directly with the people you are helping. Working with your coworkers, family, friends or classmates, groups of up to 10 people can prepare meals (on or off site) and serve them to our guests. Just bring yourself and your food and we will provide everything else in our modern, fully-equipped kitchen. For more information about the Home Cook Heroes program or to sign up, please click here.
By Julia Stiffman, Gift of Life Howie’s House Social Work Intern
The holiday season and New Year can be a stressful time for anyone. As a caregiver, you may experience stress year round, but with the holiday season comes added worry. Additionally, caregivers often neglect to think about themselves because they are so focused on their loved one’s health. Between holiday traveling and visiting family, increased spending plus ongoing medical issues and expenses, it is easy to feel pretty helpless as your resources get spread thin. It is crucial for caregivers to prioritize self-care so they can stay as healthy as possible while caring for their loved one. New Year’s resolutions are a great way to start thinking about what’s missing from your life and what you can do to change that.
Listed here are 5 common resolutions that could be especially beneficial to someone in a caregiving position.
1. Learn to say “no”.
Especially during the holiday season when your capacity to handle many responsibilities may be stretched thin. You may be naturally prone to want to help others whenever possible, but everyone needs a break at some point. If you are asked to host a holiday party or to take on a big project, try not to feel guilty for saying no. This can be applied year round. Your friends and family will understand that you have a lot on your plate. With one less thing to stress about, you’ll have more to spend enjoying your holiday season and a great start to 2016.
2. Spend more quality time with your loved one.
As a caregiver, much of your time spent with the patient ends up being in medical settings and discussing their medical status. While it is great to show them your support through the transplant process, both of you need some sense of normalcy in your lives. Find an activity to do with your loved one that’s not medical. It can range from going on a walk to finding a new show to watch together on TV.
3. Consider joining a support group.
Whether your loved one is awaiting a transplant or recovering from a transplant, it is nice to know that you’re not alone in the caregiving process. Support groups are a great way of connecting with other caregivers and comparing notes about the transplant process and how to cope with stress. Your attendance at a support group could prove highly beneficial- both for yourself and for other attendees.
4. Try something new.
When was the last time you did something completely new? When you’ve been a caregiver for so long, your days can start feeling monotonous. Trying a new activity, no matter how little, can feel like a breath of fresh air and will help in breaking up your routine of doctor visits and medical tests.
5. Take some time off for yourself.
Many caregivers may experience burnout at some point. The holiday season can be especially grueling for caregivers as they try to navigate busy schedules filled with medical appointments plus the many holiday parties and family gatherings. Take some time dedicated solely to you. It can be something as simple as turning off your phone for an hour to read a book or watch TV. Whatever it is you choose, make sure the focus is all about you at that time.
By: Allison McDaniel
As the festivities of Hanukkah begin this weekend, many families will celebrate the holiday with eight nights of lights and presents that bring joy to children and parents alike. Many others will have a more challenging journey, as they face their first holiday after the loss of a loved one.
Philadelphia native, Betsy Horen, was married to her husband and best friend, Bob, for more than 40 years before he passed away last year. They traveled the world together and were a perfect match. They both worked hard and had successful careers, but always kept a firm focus on living life to its fullest and enjoying every moment – whether it was going to the theater, visiting their time share in London, or going to their synagogue, Beth Zion-Beth Israel (BZBI), where they were part of a close-knit, supportive community.
Although this holiday will be a difficult one for Betsy, she speaks with gratitude about the nearly ten years that Bob was able to live because of one person’s selfless decision to say yes to organ and tissue donation. Bob had been diagnosed with Amyloidosis, a condition that causes abnormal protein to build up in tissues and organs. The disease attacked his kidneys, resulting in him needing a kidney transplant to survive.
“I feel like we were so lucky to receive the call that there was a perfect kidney for Bob.” said Betsy. “We were also lucky that Bob was healthy for so long and we were really able to celebrate and experience life together. Our lives were for each other, and I am grateful that he was able to live and share so many wonderful experiences.”
Betsy uses the word “luck” often, and expresses a deep gratitude for the life she was able to share with him. Since Bob’s diagnosis, the couple promoted organ donation at their synagogue by hosting The Robert Horen Annual Donor Shabbat, which educated other members about his transplantation journey and the critical need for individuals to register as donors. In addition, Bob spoke in support of donation in the community and at local schools. Betsy also became an advocate for donation during the time that Bob was waiting for his transplant. She began volunteering for Gift of Life Donor Program to give back, and became a huge supporter of Gift of Life’s Howie’s House, a “home away from home” for transplant patients and their families.
Since Bob’s passing, Betsy has dedicated an area – a gateway to the Legacy Garden – at the Howie’s House in Bob’s name and has also honored his memory with a memorial paver in the garden. Betsy said, “It’s so peaceful to sit in the garden and to realize how fortunate all of us are, and how lucky the people are that are able to stay at the Howie’s House. When Bob was first diagnosed, we would have to travel back and forth from Philadelphia to Boston for treatments. Because of his restrictive diet, we couldn’t eat at restaurants, so we had to bring containers of food with us. Going through it, I understand how the Howie’s House really gives people peace of mind.”
Religion has played a major role in Betsy’s life, and it will continue to this holiday as she navigates it without Bob. She proudly describes the numerous heartfelt dedications that she has made in his honor at their synagogue. Her goal is to dedicate a plaque on the seat where Bob always sat at BZBI – right next to her.
Gift of Life Donor Program has worked tirelessly for the past 41 years to coordinate donors’ generosity with those in need. Since 1974, Gift of Life – the organ procurement organization for eastern PA, southern NJ and DE – has helped save nearly 40,000 lives through organ donation, and enhanced over half a million lives through tissue donation. For more information or to register, visit donors1.org. It only takes 30 seconds to register.
By Talia Giordano, MSW, LSW
Finding Support Networks
Becoming a transplant patient or transplant caregiver can be difficult physically and emotionally. It is common to fear the unknown and become anxious about the “wait list” because it is a completely new journey. Often support from others who are also going through the transplant journey or have gone through it in the past, can be exactly the type of support a patient or caregiver may need. However, finding that kind of support can prove challenging if you live in a small town or are far from your transplant hospital. Below are some ways to find the peer-to-peer support that’s right for you.
The Transplant Hospital
Many transplant hospitals have support groups for patients and their loved ones. The groups are typically held monthly and sometimes even scheduled around clinic times, in order to make them more convenient for patients. Please talk with your transplant social worker to find out if your hospital holds a transplant support group.
Coalition Groups
Coalition groups are people who have joined together for a common purpose, such as organ donation and transplantation. In Gift of Life Donor Program’s service area, numerous coalition groups meet monthly to discuss ways to educate and inform individuals in the area about the importance of organ and tissue donation. Many of the attendees are transplant candidates or recipients as well as organ and tissue donor family members. While these groups are not necessarily support groups, they do allow transplant patients to meet families like them in their area, which is a great way to develop new support systems. To find a coalition group in your area please visit our Caregiver Lifeline webpage here.
Peer Mentor Programs
In a peer mentor program, you are paired with another patient or caregiver who has already been through what you are going through. Typically, you would be paired with someone who is around your age, who has successfully been through the same type of transplant and is doing well, both emotionally and physically. Please speak with your transplant social worker to see if your hospital has a peer mentor program. Please note, this type of support may be more difficult to come by, since not all transplant hospitals offer peer mentor groups.
The Internet
The internet offers a surprising amount of support resources for transplant patients! There are hundreds of websites available for transplant patients, which can be wonderful on one hand, but also overwhelming for the typical user. A good place to start for someone who is less internet-savvy is the UNOS-run, patient-friendly site called Transplant Living. It has a community section with stories from other recipients and a way to find support groups in your area.
Another great way to find support groups is through Facebook. If you already have a Facebook account, simply go to the main page and search the type of group you are looking for. For instance, a heart transplant patient might search “heart transplant support group.” You can then reach out to the group leader to learn who is a part of the group, what is discussed, if it is a private group, and how to get involved in order to get the most benefits. A great feature of Facebook support groups is they can be accessed from anywhere in the world. In addition, if you are unsure about joining a support group, Facebook is a great way to test the waters in a less intimidating setting while maintaining some anonymity.
If you would like more help locating a group in your area please feel free to email us at CaregiverLifeline@GiftofLifeFamilyHouse.org. Also if you are a transplant caregiver please consider joining out Transplant Caregiver Support Group
Director of Community, Anjali Power Yoga
