Stories Test 1
Nicole, 28, was diagnosed with Cystic Fibrosis at a young age and was given a low chance of surviving past age 10. Nicole describes her personality as a “bull” and says that “if someone tells me I can’t do something, then I’m going to fight very hard and go do it.”
Nicole beat the odds and it wasn’t until the age of 21 when her doctors told her that she would need to start looking into transplant surgery. A few years later, Nicole was added to the lung-transplant waiting list. And in June of 2019. just 2 weeks after getting married, Nicole received the best wedding gift one could ask for, a life-saving lung transplant!
Nicole and her mom, Patti, stayed at the Howie’s House for a little over 2 months during Nicole’s transplant and recovery journey. She says that although her recovery was hard, “knowing that you’re coming back to a place that’s peaceful and understanding is priceless”. Nicole and her mom particularly enjoyed interacting with the Home Cook Hero volunteers and the delicious meals they provided every night. “It was so comforting to come home from a long day of physical therapy and have spaghetti waiting for you”.
Nicole says she is thankful for the people at the Howie’s House that make the journey for transplant patients doable, and explains, “when you’re experiencing so much trauma on a regular basis, you really just need some love at the end of the day, and I felt like I got that at the Howie’s House.”
Growing up, Nicole’s passion and escape was always the theatre. She started participating in theatre groups from a young age and continued to star in and write for shows all the way into college. When her condition started to worsen, however, she could no longer participate in shows the way she wanted to. That is when she began to write a musical about her journey and experiences as a Cystic Fibrosis patient, and soon enough she had finished writing the lyrics to her full-length musical, Fall Risk.
Today, Nicole is in great health leading up to the 2-year anniversary of her lung-transplant and is now putting all her efforts into producing and bringing her musical to life!
This spring, consider making a gift that will help us continue to be there for families like Nicole’s during their difficult and unpredictable transplant journeys. Your gift will help us provide comfort and stability to our families 365 days a year, 24 hours a day. Click here to give today.
Soon after we opened back in 2011, Lindsey, Bill and their 10-month old son, Stephen, came to stay with us for the first time. At the time of their first stay, Stephen was our youngest guest. The Schwartzes are now one of our longest returning guests and have been coming back ever since they first walked through our doors over 9 years ago.
At the time of their first visit, Stephen was in need of a kidney transplant. Stephen had been diagnosed with Autosomal Recessive Polycystic Kidney Disease (ARPKD), or infantile PKD, a rare genetic disorder that affects 1 out of every 20,000 children. Before Stephen was born, his doctors knew that he would one day need a transplant, as the disease causes poor kidney function and breathing problems that can hinder an infant’s survival.
At just six days old, Stephen’s kidneys were both removed to aid his breathing, and he would remain on dialysis for two years until he was old enough to receive his transplant. Neither Bill nor Lindsey were a match to Stephen’s blood type, so they were unable to be his donor. Just as the Schwartzes received their first miracle with Stephen’s birth, their second miracle came when a family friend offered to get tested to be his kidney donor and was a perfect match. On May 9, 2013, two-year-old Stephen received his precious gift of life.
The Schwartzes desperately wanted Stephen’s kidney transplant and aftercare to happen in Philadelphia, a 3 ½ hour drive from their home in Virginia. Explains Lindsey, “There are not many places in the country you can get pediatric nephrology care, especially for this type of disease and pediatric kidney transplant”.
Lindsey calls the Howie’s House an integral part of making Stephens care in Philadelphia possible.
“At the time, the financial aspect of traveling to Philadelphia would have prevented us from keeping Stephen’s care there after transplant. The affordability of the Howie’s House gave us the ability to make that decision and get Stephen the best healthcare,” says Lindsey.
The Schwartzes are now one of our longest-returning families and continue to come to Philadelphia for Stephens follow-up care. Stephen is now 10 years old and is about to finish the fourth grade. He enjoys racing electric go-karts, golfing with his dad, and playing with his new puppy, Maverick.
Lindsey says that the predictability of the Howie’s House brought her comfort during Stephen’s transplant journey, and that she is grateful for all the amenities that we provide.
“The Howie’s House has everything you need to have a relaxing, easy place to stay.”
This spring, consider making a gift that will help us continue to be there for families like the Schwartzes during their difficult and unpredictable transplant journeys. Your gift will help us provide comfort and stability to our families 365 days a year, 24 hours a day. Click here to give today.
Check out this special message from the Schwartz family!
Like many guests of Gift of Life Howie’s House, Julie has stayed here on multiple occasions. Unlike other guests, however, Julie has stayed here as the primary caregiver for two different family members, on two separate occasions.
Julie first came to us with her husband Joe in 2019 while they were awaiting an evaluation for a lung transplant. Joe had been diagnosed with Idiopathic Pulmonary Fibrosis back in 2011. Fortunately, he was asymptomatic for many years and was able to continue to do the things he loved like hiking, cycling, and cross-country skiing. However, in January of 2019 his health began to decline very quickly.
Joe was in need of a lung transplant, however, because of certain factors like his age, they ran into complications with getting listed. As Joe’s health began to worsen, the need for a transplant became more urgent, so Joe and Julie traveled to Philadelphia and checked into the House where they would stay during their pursuit of a life-saving transplant.
The Gift of Life Howie’s House became a respite for the couple during a very challenging time.
“I look back at that time at the House almost like a little vacation,” says Julie. “I felt like I was being waited on. Dinner was cooked every night, we would come down for breakfast and sit on the patio. I would go for a walk and discover the different areas in Philly. It was such a pleasant place to be.”
While staying at the House, one of Joe’s sons was able to visit to celebrate Joe’s birthday, and they even had a past exchange student from Denmark fly in to stay with them. These were very special visits as it would be some of the last times that Joe would be able to spend with his loved ones.
By the time Joe was able to get an evaluation and get listed on the transplant waiting list, his condition was critical. Unfortunately, the call for new lungs did not come soon enough, and Joe lost his battle with IPF shortly thereafter.
After Joe’s passing, both his sons were able to stay at the House with Julie, and she said having that family support was so important during such a difficult time.
Joe’s younger brother, John, also had been diagnosed with IPF, but was asymptomatic like Joe had been early on in his diagnosis.
“John came up for Joe’s memorial service, and it really hit him that this disease was serious,” says Julie. Having been down the same road with her husband, Julie told John that as soon as he started showing symptoms that he should go to Philadelphia to Joe’s same transplant center. John followed her advice and started seeking transplant care soon after.
John’s wife has various health and mobility issues, so she was unable to be his caregiver. As all of John’s kids lived far away and had families of their own, so Julie selflessly decided she would step in to be his primary caregiver, a decision she made only 6 months after her husband had passed away.
Thankfully, deciding to see a doctor early was the right decision, and John received his gift of life in August of last year. Both Julie and John stayed at the House while he recovered and have been back twice for post-transplant check-ups.
While staying at the House, Julie took advantage of many of the services we have available for caregivers. “One thing that was really an anchor for me was the support group I attended,” she explains. “I learned things in the support group that helped me a lot while I was going through the post-transplant process with John.”
Volunteering to be a caregiver again so soon after losing one’s husband is no easy task, but Julie says that this was something she needed to do.
“A lot of people have said to me, ‘How can you go through this again after losing your husband?’, and it is hard, but no one else in John’s family had the ability to do this for him,” says Julie.
“It gave me a chance to complete the journey that I started with my husband that was so abruptly stopped, I felt like I got to see it through, and that seemed important for me to do.”
Both John and his wife lived with Julie during his recovery, and Julie juggled her time between caring for the couple and looking after her mother, who had recently had a stroke. John is now doing great and has moved into a new home in New Hampshire with his wife. Understandably, Julie says she is excited to have some time to herself.
“I’m just looking forward to getting back to my life and seeing what my life is going to be like. I just want to get back to taking care of myself and figuring out where my life goes from here” she says.
Julie’s journey has been a difficult one to say the least, but she asserts that “although it’s not always easy, I’m pretty good at staying in the moment and not looking at the whole picture every day.” She adds that she is so grateful to have had a familiar place to come to during a time of such uncertainty.
“Gift of Life Howie’s House is really a godsend. I feel like I’m coming home when I come there.”
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