Journey of a Lifetime Leads to $1M Planned Gift
Vinny Martucci and Arlene Petty have traveled around the world – seven continents and 48 states, to be exact – experiencing the wonder, discoveries, and challenges touring the world offers. Of all their travels, perhaps their longest, most challenging – and most rewarding – was Vinny’s journey through kidney transplantation.
Professionally, Vinny was a communications engineer and Arlene owned her own professional liability insurance business. When not working, the couple spent time traveling, golfing, and kayaking. It was in 2001 when Vinny was 58, that he learned he had polycystic kidney disease (PKD), an inherited disorder in which clusters of cysts develop primarily within the kidneys, causing them to enlarge and lose function over time. The couple soon learned that eventually Vinny would need a kidney transplant or face dialysis, but at the time, he was in excellent health.
While enjoying retirement at their homes in Mahwah, NJ, Bluffton, SC and Lake Placid, NY, they realized by 2014 Vinny’s PKD was taking its toll and it was time to address having a transplant. It was pre-planned for that to be at St. Barnabas Hospital, Livingston New Jersey using Vinny’s sister’s ‘perfect match’ kidney. During the medical review, it was discovered Vinny had aggressive and invasive prostate cancer. While radiation was the recommended treatment, they knew radiation could compromise abdominal surgery which Vinny would need for the now elusive transplantation and so they sought surgical options. They were referred to MUSC Health in Charleston where Vinny had a perineal prostatectomy to avoid an incision in the abdominal wall. The surgery was a success.
Vinny was now 72 and a cancer survivor. But his kidneys were failing. His creatine levels were climbing, he was losing strength and it was becoming obvious he would soon need a transplant or go on dialysis.
He had some hurdles to get through since once a person has cancer and is reaching an advanced age, transplantation is not always considered an option. Most transplant centers require at least a two-year waiting period after a cancer diagnosis, and by then Vinny would have been 74 and less likely to be considered for transplantation due to age. In fact, things were looking grim and they decided to have a fistula put in just in case he needed to go on dialysis.
Based on Vinny’s overall good health and active lifestyle, Dr. Thomas Keane, his urologic oncologist, advocated for Vinny to be considered for transplantation with the MUSC transplant team, a national leader in solid organ transplantation. The transplant team agreed Vinny was indeed a good candidate.
Still the couple didn’t get their hopes up – they learned that in light of Vinny’s cancer, his sister’s kidney would no longer be considered for Vinny’s transplant because she, too, had a prior cancer diagnosis. They needed a living donor. Many family and friends offered to be a donor, but for a variety of health-related reasons, no one was able to donate. “It was like being on a roller coaster,” said Arlene. “We didn’t know what to do so I put out an email to all of our friends.”
She wrote: I never thought I would have to ask, but I can’t give Vinny a kidney, because I’m a breast cancer survivor. I can’t help him, but I can ask for you to consider helping him. We have run out of options.
“Is anyone willing to give Vinny a kidney?” she asked.
Within fifteen minutes from hitting “send,” Chris Bidelspach, an acquaintance in Lake Placid, responded that he would donate his kidney.
“Chris is a remarkable person,” said Vinny. “We couldn’t believe he was willing to give me his kidney – he was literally willing to give me the gift of life.” Vinny and Arlene had known Chris and his wife, Becky, for about two years, but more as casual friends.
“They are very special people, taking emotionally challenging foster children into their homes,” explained Vinny. “Plus, he gives me a kidney. I mean, it's just amazing that there could be people in the world that are that unselfish. People who just give away their life for you, even though they don't know you that well.”
As Chris explains it, it never crossed his mind that he wouldn’t do it. “I think for me I never saw it as a big deal. It always felt to me like when I donate blood. It's something I can do and doesn't take anything away from my quality of life. It doesn't hurt me, doesn't cost me anything. But I can help somebody.”
Becky recalls the day she read the email as a regular day in their home. They had just received a request to take in a new child in need of foster care. Chris was putting together a bed for the child upstairs when Becky called up to him. “Chris, you know Vinny and Arlene, who we’ve met a few times?” She asked. “Well, Arlene just sent an email saying Vinny needs a kidney.”
“Tell them I’ll donate,” Chris said.
“No honey, he doesn’t need blood, he needs a kidney,” she said. To which he replied, “I’ll still do it.”
Chris and Becky equate the decision to similar decisions when asked to take in a child. Take Sarah, for instance. “She is medically fragile and was dropped off to us at 10 o'clock at night. And we had never dealt with special needs before so it was kind of a challenge in that we weren't sure that we could do it, but it's one of those things like Vinny -- You know, we just jumped and said ‘yes.’ And it worked out.” Five years later, the family is planning on adopting Sarah as she is ready to age out of the foster care system and cannot care for herself. One of the basic tenets the family lives by is taking care of their community and the people who live in their community.
And, so within fifteen minutes, the email was sent back to Vinny that Chris would be a donor.
Overjoyed, Arlene and Vinny set about making plans for Chris to be evaluated at MUSC, covering all expenses. Arlene and Chris flew up and down from Lake Placid to Charleston a couple of times that spring and summer for testing.
The good news was Chris was a match…but there was a catch.
Chris had high blood pressure. After a few months on blood pressure medicine, his health improved and the surgery was scheduled in October of 2015. Nine months from his prostate surgery, Vinny was going to get his new kidney!
Vinny and Arlene made the arrangements for Chris and his family to travel to Charleston. They covered the cost for Becky and one of their sons to be in Charleston for the surgery, paid for a week’s overnight care for their foster children, covered Chris’s wages at work through his eight weeks of disability, and took care of hotels, meals, and every incidental. They gladly did their best to make it as comfortable for the family as possible.
After the successful transplant, Vinny was back on the road to good health.
“Vinny represents one of our highest risk patients and the success is dependent on an entire team," said Vinny's transplant surgeon Prabhakar Baliga, M.D. "I am grateful and proud that we have such a great team that enabled us to facilitate a successful transplant outcome for the Martucci family.”
With all great journeys, new discoveries are made.
Vinny and Arlene realized how fortunate they were to be able to provide these resources to Chris and how others might not have the same opportunities. After Vinny recuperated, the couple started volunteering with the non-profit Staying Connected near their home in Bluffton, providing rides to medical appointments and grocery stores to those in need. It was there that they met a woman waiting for a transplant and on dialysis. They watched her decline and saw the financial barriers she faced to getting well. Vinny and Arlene realized again how lucky they were and that they needed to give back in some meaningful way.
The couple learned that South Carolinians suffer a higher rate of end-stage renal disease than in other areas of the country, which disproportionately affects the African American population. Sixty-six percent of MUSC’s kidney transplant recipients are African American, with nearly two-thirds of the transplant recipients having a household income of less than $30,000 per year. They wondered how patients with low incomes could possibly manage all the expenses they had easily managed.
“Having considerable financial challenges for both patient and donor only makes an already stressful situation extraordinarily more difficult,” said Arlene. “We realized we could help remove these financial barriers to transplantation by providing annual contributions to the MUSC Living Donor Institute (LDI) Patient Support Fund.” Through their contributions, along with other grateful patients and donors, the LDI Patient Support Fund is able to cover lodging, lost wages, airfare, travel and cover household bills for qualifying living donors.
This year, Vinny and Arlene made a bequest of $1M from their estate to the MUSC Living Donor Institute. The gift will serve as a match to the Allen Family’s $1.5M Patterson Barclay Memorial Foundation gift in memory of their brother, Fred Allen, who also suffered with PKD. “It seemed the perfect way to give back in a personal way, to ease some of the burden,” said Arlene.
Vinny and Arlene’s bond with MUSC continues, as well.
This spring, when Vinny's prostate cancer recurred five years after his prostatectomy, the couple, who mostly reside in Lake Placid, chose the University of Vermont (UVM) for his treatment. “There is medication and radiation in front of us, but it is a very exacting and successful protocol,” explained Arlene. “We are very hopeful.”
When Baliga heard Vinny was at UVM for treatment, he called the hospital to make sure the care team knew to protect his kidney during treatments. “Dr. Baliga really cares personally about Vinny,” said Arlene. “That means the world to us.”
"Getting to know the family has been a blessing," said Baliga. "They are a family that believes in paying it forward and supporting the advancement of the field so others may share the benefits of transplant. They belong to the category of those who give selflessly and have my highest respect!"
Changing What's Possible for Transplantation through Living Donation
Living donation is a profound way to help a loved one—or even a stranger—in need. That said, someone who wants to give the gift of life often has financial obstacles. Perhaps they can’t afford to be out of work for weeks without pay, or they can’t cover childcare expenses during the recovery process.
The Living Donor Institute Patient Support Fund provides patients and donors then needed resources and staff support. With contributions from generous donors and grateful patients like Vinny and Arlene, we are changing what's possible for many patients and donors who otherwise would not have been able to have their transplant due to financial obstacles.
Learn more about supporting the Living Donor Institute by visiting giving.musc.edu/living-donor-institute.
Including the MUSC Department of Surgery in your estate plans, as the Martucci/Petty family has, is an incredible way to leave a legacy. To learn more or to let us know if you've already included us in your future plans, please contact Vera Ford at fordva@musc.edu or 843-792-1840, or visit muscgiving.org for more information.
