News and Events Archives - Page 5 of 5 - Gift of Life Howie's House

News and Events

On August 28, 2017, Alicia Hoover, a former Howie’s House guest, delivered a warm heartfelt speech about her transplant journey. She also described how Gift of Life Howie’s House supported her and her family throughout the whole process. Read below as Alicia addressed the attendees of the 13th Annual Kidney Open Golf Outing.

“First of all, I would like to thank you all for allowing me to be a part of this amazing fundraising event. The family house has done so much for myself and my family over the last few years. They have become and continue to be a second family to all of us.
My father and I were both diagnosed with Idiopathic Pulmonary Fibrosis. This lung disease is terminal. After diagnosis life expectancy is on average 2-4 years. The only treatment currently available is a lung transplant.

On March 1, 2013 two days before my dad’s 46th birthday he received his call and was on his way to the University of Pennsylvania Hospital in Philadelphia to receive his new set of lungs. The transplant was successful, however after a 6 month recovery in the hospital many complications my dad lost his battle and passed away on August 21,2013.

At the time of his passing, I was almost 5 months pregnant with my 3rd child. From that point forward I was on oxygen full time. I went as high as 20 liters of oxygen at some points just to walk across the living room. I ended up going into respiratory failure and having an emergency c-section at only 32 weeks in my pregnancy. I delivered a healthy 4lb baby boy. We named him Chance Edward. After 2 weeks in the NICU Chance came home with us to join his big brother Jace and his sister Kyrstin.

Less than a year later I was ready to begin my transplant journey. I was evaluated and placed on the list at Temple University in Philadelphia awaiting a double lung transplant. I waited about 1 ½ years and finally my call came. I received my transplant on February 29,2016. As you can tell my surgery was a success. During all of these surgeries and appointments my mom and my husband, Dave, stayed at the Howie’s House while we did our job in the hospital on the road to recovery from our transplants.

The Howie’s House offers so much to its patrons that stay there. We have met and continue to meet so many amazing people waiting on transplants or recovering from their transplants.

And it’s not just the patients, it is their family and loved ones as well. The Howie’s House allows all these people to come together and create a great support system for the patients but also for the caregivers. I have been on both ends and I truly believe the caregivers have a way harder job than the patient in my eyes. The Howie’s House offers support groups for the caregivers which is a huge necessity. The staff will go above and beyond for any one of us staying there.

They are genuine and care about all the families that come through there. To them you are not just a number. They know you. They ask how your children are doing back home. They know you by name. I love going there and meeting so many people, sharing our stories, eating dinner with so many people who are stronger than they ever thought they could be. I am thankful for the Howie’s House as it has not just offered a place of shelter for my family but provided me with a whole other family that I love and care about as if they were my own blood relatives. Thank you to all of you for your time and generous donations that benefit this amazing home for so many people. Without the Howie’s House there would be patients and their families lost among the health care system not knowing which way to go. The Howie’s House gives them a sense of direction and allows them to meet others that are going through the same situations so they tend to guide one another on each journey. All of you are amazing for being here today and if you take anything from what I have said today, please walk away knowing that the money you raised today is going to an amazing cause for some incredibly strong individuals. You are making it possible for the Howie’s House to offer an environment that is safe to people going through extremely rough times in their lives and again for that, I thank you.”

November is officially National Family Caregivers Month and this year’s theme is respite, a temporary relief from something stressful and difficult. The Caregiver Action Network outlines:

“Respite” – the chance to take a breather, the opportunity to re-energize – and it is as important as any other item on the caregiver’s to-do list. People think of respite as a luxury, but considering caregivers’ increased risk for health issues from chronic stress, those risks are a lot costlier than some time away to recharge.

In honor of National Family Caregivers Month, the Howie’s House has been posting wellness tips and support resources for caregivers, as well as recognizing transplant caregivers and their efforts. Many of the guests staying at Gift of Life Howie’s House are caregivers to their loved one waiting for, undergoing, or recovering from an organ transplant. The Howie’s House provides resources and support to caregivers throughout the Gift of Life Region through its Caregiver Lifeline Program. Whether it be self-care tips, keeping patient to caregiver relationships healthy, or numerous other resources, the Caregiver Lifeline Program provides services specifically tailored to the needs of organ transplant patients, family members and caregivers inside and outside the walls of the Howie’s House.

Recognizing the importance of caregivers and their influence in the transplant community, the Howie’s House continues to advocate for and support them by all means necessary. The National Alliance for Caregivers created a program called Caregiving Champions; it highlights important government officials who have been steadfast advocates for caregivers nationwide throughout their career. Pennsylvania’s local Caregiving Champion is Senator Bob Casey.

Senator Casey has been a dedicated supporter for aging Americans and their families throughout his entire career in public service. The Senator has a personal connection to transplant and genuine understanding of caregiving through his father, former Governor Robert P. Casey of Pennsylvania (left). Robert P. Casey Sr. was diagnosed with hereditary amyloidosis, a condition that required an extremely rare heart-liver transplant in 1993. Because of this personal connection to organ transplant and experience as a caregiver, the senator has strongly backed organ donation in his region. Additionally, he introduced legislation that would create a national Caregiver Corps plan to aid families who provide care to aging or disabled relatives. In honor of this month and this important cause, Senator Casey shared a few words with us:

“I would like to thank my friends at Gift of Life for using the month of November to highlight this important issue. Caregivers of all ages face unique challenges in providing support for their loved ones during times of illness

and disability. Gift of Life provides valuable resources and support to caregivers through its Caregiver Lifeline Program, supporting the families who are caring for loved ones awaiting or recovering a life-saving transplant. The least we can do is provide these caregivers a safe haven where they can share their experiences with other people undergoing similar experiences. We also have the opportunity in Congress to pass legislation to help family caregivers properly care for their loved ones, including the Caregiver Corps Act, which would provide community services opportunities for volunteers to provide respite care for family caregivers. I will continue to push for bipartisan legislation that improves the quality of life for families and their care recipients, and ensure that they receive the assistance and respite they truly need.”

For more information about Casey, his caregiving efforts, or to find your local Caregiving Champion, please visit: http://www.caregiving.org/find-your-champion/pennsylvania/

Being a 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. Lorna, wife and caregiver to her husband who needed a lung transplant, explains, “For now, it is very, very, difficult — working full time and taking care of a lung transplant recipient is by no means an easy task. There are days I sit at my desk and tears just run down my face. I pray for the day when we can go for long walks and take trips and just appreciate each other even more.”

Feeling alone, emotionally overwhelmed, or any other range of emotions is completely normal. It is important to remember that you are not alone. Over 6,000 individuals are currently listed on our regional waiting list for a life-saving organ donation. Each year, thousands of patients – both children and adults – and their families and caregivers, travel for treatment at one of the fifteen Gift of Life Donor Program’s transplant centers. And while there has been tremendous growth and increase success in transplantation, for many transplant patients and their family members, even the good news of a life-saving organ brings anxieties.

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 caregiver may need. Caregivers should look to identify support networks within their life to help them cope throughout the entire transplant process and hopefully find respite and emotional support. If you are having trouble locating the support you need and deserve, please look to our Caregiver Resource Handbook as well as this article written by the Howie’s House Social Worker, Talia Giordano on how to find support networks.

“Respite is the key to a caregiver’s own well-being. Respite protects one’s health, strengthens family relationships, prevents burn-out and allows a loved one to stay at home up to three times longer. No wonder respite is one of the most frequently requested support services for family caregivers.

~ Caregiver Action Network