The Heart of the Giving

07/08/2019

Stevie Wonder needs a kidney but luckily he has a donor! No one should ever have to worry about receiving the organs that they need to live! Be The Gift!!! Be an Organ Donor! 💜💜

“I have a donor, it’s all good,” singer says at London concert

06/22/2019

It was 6:00 am on a beautiful Wednesday morning when Keith, Kellie and I were in the car heading to St Barnabus Hospital. I was excited, I had been looking forward to this for quite a while, Keith and Kellie were very nervous.

Approximately five years earlier, Keith and I owned a little cafe, when I walked up to speak with four people getting ready to order for brunch. I knew Leanne who came to the cafe often, and I had met her parents Denise and Dennis and sister Kimberly a couple of times before. As I approached the table, Denise was crying, and when I asked her if she was alright, she said NO! “We are trying to find someone willing to be a kidney donor for Dennis.” Without much thought, I said, what do I have to do to be tested. They looked a little shocked, and Denise said, you need a blood test. I said OK, let’s do it! I walked away from their table and immediately walked over to Keith, and while he was working over the grill, I told him, hey babe, see that guy over there at table 4? I am going to donate my kidney to him!!! Keith never missed a beat and had no idea where this was coming from, so he just responded with a slow OK!?!?!?!?

A couple of weeks later, Keith and I walked into St Barnabus and met with Dr. Shamkant Mulgaonkar, who was the genius behind the Kidney Living Donor program. He proceeded to draw a “fun” diagram of the whole process. “We are going to cut here, clip this, stitch you up, and you are good to go.” Well, that is what I heard, because to me I didn’t care if it was difficult or tricky, this is what I wanted to do. It was a way for me to pay it forward, for Megan receiving her heart! Keith did not quite hear it that way, but he told Dr. Mulgaonkar, “Doc it will not matter what you tell her, she already made up her mind”!

As it turned out, I was not a match. Dennis had already received a kidney once before, from his wife, Denise. However, after 6 months, Dennis began to reject the kidney. Now when you receive an organ from another person, you take on the antibodies from that person. If you reject the organ and need another, now you need to find a match with the antibodies of yours and the person from the first transplant. So it makes it more difficult to find a match. Dr. Mulgaonkar told us that while I am not a match, I can still help Dennis by being part of a chain. A chain is where I do not match Dennis, but I might be a match for someone else say, Mary, that is also waiting, and her loved one, John, does not match her. BUT, John happens to be an exact match for Dennis and I am a match for Mary. That is a chain. Meanwhile, Dennis went back on dialysis, and we waited.

After about 2 years, we got a call from Marie Morgievich, who is the Director of Clinical Services for Living Donors, and she said: “we think we have a match, an exact match.” We set a date, everyone was so happy that this was happening. Then we got another call, Marie said the gentleman that was a perfect match for Dennis, backed out! His wife’s best friend was a match, and he decided that he did not want to go through with it! The Chain was canceled!!! We were devastated! How could someone do that! How can you make the decision to help someone and then just bail? It was awful! We waited again for a couple more years.

In June of 2011, Marie called us again, this time they have a match and everyone needed to come in to be retested, just to make sure that nothing changed that would prevent the surgery from happening. Keith would always go with me to the hospital for all the tests, but on Wednesday, June 15, I was getting a full body CatScan, and since I had one before, we thought it would be great for Kellie to be a part of this significant surgery. When I got to the hospital, I got an Iodine injection so that they can see anything that might have cropped up since that last time. It turned out that when your body has an allergic reaction, the first time it is exposed, nothing happens, but when your body is exposed a second time, this is when your body reacts, and react mine did! I went into anaphylactic shock. Unfortunately, the doctors called “Code Blue” and Kellie was there to witness the whole thing. Obviously, I recovered, but it was indeed a scary moment and terrifying for Kellie.

The following Sunday was Father’s Day, and our town had a street fair going on in town, Keith and I walked down the middle of the street. I asked Keith that “if anything were to happen to me on Wednesday, I need to know that you will not be angry with me.” His response to me was, “How can I be mad or upset with you, I am so proud of you.” With that, on Wednesday morning, we headed to the hospital and completed an eight-person chain on June 22,2011. Veronica Yankowski Ligouri

04/29/2019

Amelia is a remarkable and resilient (almost) 14-year-old, who has overcome great odds. She is a voracious reader, a talented writer, a student of piano and a skilled navigator of electronics (especially the iPhone). She is an awesome big sister to little sis Julia, spoils her dog, Lilly and is a talented baker in the kitchen. Amelia gets to do all the things she loves because of the kidney transplant that she received when she was 3 years old.

The first time a doctor saved Amelia's life she was 2 years old, it was March of 2008, and she caught a “bad cold.” Amelia went to a library book reading with her Dad for Dr. Seuss birthday and came home sick. Cough, runny nose, and poor appetite progressed quickly to fatigue, fever, and no appetite. Calls to her pediatrician’s office were dismissed because it was “viral season” and the waiting rooms were overflowing. They recommended the conventional cold treatments of cool baths, hydration, Tylenol or Advil and chicken soup and in a few days, they expected she would be better.

After a couple of days passed with fevers of up to 105⁰ and no response to supportive care, her Mom, Wanda desperately took Amelia to the Pediatrician’s office. The Pediatrician examined Amelia and immediately called an ambulance to rush her to the Emergency Room. She was evaluated and admitted with pneumonia. Her doctors said she needed several days of IV antibiotics and then would go home on oral antibiotics.

Within 48 hours of admission, however, things became very complicated! Her labs showed unexpected abnormalities that confused her doctors, her kidneys were not working properly and her breathing became progressively labored. Amelia was quickly transferred to the Pediatric ICU in respiratory distress and in acute renal failure.

Her team of doctors (Infectious Disease, Nephrology, Intensive Care Pediatricians, Respiratory…) consulted extensively and concluded that Amelia had developed a complication from her Pneumonia called HEMOLYTIC UREMIC SYNDROME, (HUS). Blood cultures taken during her initial admission revealed her Pneumonia was caused by a strain of “Strep 19A”. This strain of Streptococcus produced toxins in her body that shut her whole system down. She was immediately started on Hemodialysis, Plasmapheresis which removes some unhealthy plasma from the blood and swaps it for healthy plasma, and they put her in a coma to clear her body of the toxins) and put on a Respirator.

During these initial 2-3 weeks, Amelia was placed in a drug-induced coma and developed various life-threatening complications including pneumothorax, numerous catheter failures, and respiratory complications. Wanda recalls the doctors explaining that their “focus was to keep Amelia alive today so that she could fight her way back to you!” “Doctors prepared us for the worst including the possibilities of brain damage, blindness, renal failure, and even death. It was the most difficult and trying time in our lives!” One day they had a happy, healthy 2-year-old daughter and the next day she was fighting for her life! A simple “cold” had turned their world upside down and left them feeling helpless and at times hopeless.

Over the course of these critical three weeks, Amelia did fight her way back. She eventually awoke from the coma with her sight and thinking intact, but her kidneys suffered severe damage. The damage to the kidneys from HUS is sometimes reversible (mostly when caused by E.coli; Amelia’s was caused by Strep). Her doctors explained that if her kidneys did not recover in the next 4 months, they never would. So together her parents and family prayed for a miracle.

After 4 months on dialysis, Amelia’s parents prayed her kidneys would recover, but they never did. She was then placed on the transplant list for a new kidney. Within a couple of weeks, Wanda received the call at dinner time that a good kidney match was found!

Amelia received a deceased donor kidney transplant on July 3, 2008, at the age of 3. Amelia’s surgery was 6 hours, and her new kidney started working immediately. Everyone celebrated when she was wheeled back to her room with a bag full of “yellow gold.”

This summer Amelia will celebrate with great joy her kidney's 11th Anniversary! There have been some struggles along the way, but Amelia has learned a lot from her experience: to treasure each day we have together, to be thankful for the blessings that come her way and to be humbled by her donor and her donor family who gave Amelia the greatest gift she can never truly repay. She hopes to use her second chance in life to help others. In 2013 she won the American Kidney Funds calendar art contest and helped raise awareness about kidney disease and organ donation at the Hope Affair in Washington DC. In 6th grade, while her friends were dressing up as zombies and movie stars, Amelia dressed up as her favorite superhero, Dr. Lieberman, her nephrologist. It wasn’t comfortable explaining to everyone in school what a nephrologist does. It also isn’t easy explaining life with a kidney transplant.

Amelia hopes to become a doctor one day. In high school next year she will start her medical education early in the health professions program. She is strong, smart and determined to use her gifts and her childhood experiences to educate and to help others. Along the way, Amelia will enjoy each precious day and the lessons and surprises they bring her. Thank you VeroLuce Photography!!!

04/18/2019

Dr. Shamkant Mulgaonkar he was the genius behind the Kidney Living Donor program at St Barnabus Medical Center in Livingston, NJ. According to St Barnabus’ page, he was “one of the preeminent professionals in kidney transplantation in the US. He was a dynamic leader who cared for thousands of kidney transplant recipients since the 1970s. He is largely responsible for the most highly regarded programs in the US. Dr. Mulgaonkar was beloved by his patients and their families, his staff and colleagues and everyone who had the good fortune of knowing him.”

The first time Keith and I met “Doc” we were greeted with this wonderfully mild manner person with a beautiful smile. His warmth and gentleness hid the fact that he was a giant of a man, who first “designed” the kidney program on his kitchen table! We went to visit him because I decided to be a living donor to my friend Dennis Paserchia, he is the first story we did here!

He sat down behind his desk and asked me why I wanted to be an organ donor, so I proceeded to explain my story of my daughter and how I want to be able to donate while I am alive! I believe he tried to test me to see if I genuinely wanted to have my kidney removed from my body and give it to someone else, or if this is just a whim. He proceeded to draw a diagram of a kidney and slowly explained what was going to happen to me. He spoke to us like we were the most important people in the room. He explained almost with glee and a twinkle, how they would take my left kidney (it is the easiest to remove) there would be 3 insertions, and snip, snip here, snip, snip there and how the extraction would happen, and Voila! the kidney is removed.

Ok maybe it didn’t quite do like that, but that is what I heard! I think he was trying to shake me a little to let me know that this is a big deal, removing an organ from your body. He wanted me to think about it, and talk it over with my family so that all of us fully understood what was going to happen. I believe that his biggest fear was that many people come to his office with the idea that “I am going to donate my kidney,” but when they actually hear what is going to happen, they back out!

Keith was actually the first one to recognize what he was doing and said to him, “Doc, if you are trying to scare her or talk her out of it, it won’t work, don’t worry she will never change her mind.” He looked at Keith and asked him, are you ok with this, and Keith answer,” I am very ok with this!”

Doc was amazing to all his patients, and he truly cared about all of them. Dennis has been on this journey with him for over 18 years, and Dennis is still going! Dennis told me that Doc, “gave me hope, that there is something past dialysis and the option is living donor transplant". Dennis says because of him, he lives to watch his grandchildren grow! Mike DiPiano, we also did his story on here, said that “He was the person that gave me hope and made me realize it wasn’t the end of the world, he assured me that I would be ok and live to witness many new chapters in my life.”

Doc passed away on Tuesday, and I was just heartbroken to hear the news that with all the lives he has saved and enriched, he could not be saved. I am sorry that no one else will be able to experience the “diagram” that so many of us did. What I do know is that his staff, especially Marie Morgievich loved him so, and they will carry on his work of living donors. 💜💜

04/09/2019

Andrew was a fun-loving young man, who loved sports. He was a wrestler, played football, baseball, and soccer, but his favorite game was playing golf, which he did in high school, but his favorite time was playing with his dad. Andrew was born on July 3, 1991, the son of Jennifer Jova and her husband, Paul! Andrew had a little sister Carley born in 1999, and an older sister Lia, (from Paul’s first marriage). As a typical only boy, he both annoyed and loved his sisters. He had ADHD and was extremely impulsive, which could make relationships difficult, but his sister Lia had a great patience and understanding of him.
Andrew was 17 years old and was looking forward to taking his driver’s test. He joined the Junior Firefighters in Brick, NJ and loved to be a part of the team. Andrew also became part of a Young group in Brick NJ where he did mission work, in Camden and thrived. He was actually coming home from a day at the Youth Group when the unspeakable happened! Jennifer picked him up, and they were heading back. Jennifer and Andrew got into an argument, that went on through the entire ride. When they were nearly home, they came to a red light, Andrew mad at his mom, jumped out of the car before it came to a complete stop and fell and hit his head, it was a small cut.
Andrew was rushed to the hospital and put into a medical coma, the doctors had hoped that it would give him time to heal. But as the days went by, the doctors told Jennifer and Paul that his injury was much worse than they initially thought. A nurse from the NJ Sharing Network had approached Jennifer’s dad and asked to be introduced to the parents, to speak with them about Organ Donation. Jennifer’s dad, Rich, asked her to please donate Andrew’s organs, and when the time came, she immediately said yes, because she knew that Andrew liked to help people and that this is what he would have wanted. Andrew died on August 23, 2008, he was 17 years old. By donating Andrew’s organs, he saved the lives of 5 people and enhanced the lives of 48 others with his lungs, heart, kidneys, liver, eyes, tissue, and skin.
Over the years, Jennifer came to terms with herself on how Andrew died, and she and Paul have dedicated their lives to becoming strong advocates for Organ Donations. They started a page In Loving Memory of Andrew Richard Jova. They proudly tell the story of Andrew and Organ Donation by doing a 5K, in Andrew’s name for the NJ Sharing Network which is a non-profit organization responsible for the recovery and placement of donated organs and tissue for those in need of a life-saving transplant. Both Jennifer and Paul do speaking engagements to tell Andrew’s story and bring awareness that saving lives is all that matters. Thank you Veronica Yankowski Ligouri! Jennifer Perry Jova Paul Jova
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04/02/2019

Beautiful story beautiful young men! April is Donate Life Month! Speak with loved ones now to tell them that you are an Organ Donor! If you have not registered yet go to the health app on your IPHONE (Android does not have it as of yet) and sign up to be a donor!

Nationwide Series driver Joey Gase made the decision to donate the organs of his late mother. His choice saved the life of Jordan Shaw, who was waiting for a...

03/31/2019

This beautiful video was taken as Jackson was going to the OR! What a beautiful way to go in to have the most profound surgery of his young life! Columbia Presbyterian is where Megan had her transplant! I am forever grateful to Dr Linda Addonizio and her team for all they do for pediatric heart transplants! 💜💜

03/30/2019

This beautiful boy is Jackson and he is 4 years old and yesterday he got a new heart! Jackson had Congenital Heart Disease, he had a couple of surgeries by the time he was two, but they were not enough. He has been in and out of the hospital over the last year and while he was waiting for the new heart, the stress on Jackson’s parents, Lisa and Jay, and his sisters were understandably difficult.
Jackson and his family are actually from my hometown area near Binghamton, NY. Jackson is at Columbia Presbyterian Hospital in NYC, so thank goodness that they have tremendous support to help them through this.
This was not the first heart the doctors had for Jackson. Earlier this week, Lisa and Jay were told that they had a heart, Jackson was brought to the OR and when the doctors were checking the heart to make sure that it was truly a match for Jackson, they found an issue with it, and had to reject the heart for him. Imagine the devastation of his parents, they waited a year for this day, it is here and they cannot take the heart. But less than 48 hours later, word came another heart is here, and this time it is a perfect match!
Lisa has been keeping everyone informed through Jackson’s Heart Journey on Facebook, and her last post said that Jackson is in ICU where he will remain for at least the next 48 hours. Please keep Jackson, Lisa, Jay, and his sisters in your prayers tonight. I also ask that you say a prayer for the two moms and dads that lost their child this week. Through their tragedy and sorrow, they gave Jackson and any other children that benefitted from the donated organs of their children, a chance at life! Be The Gift!!! 💜💜

03/29/2019

Mike DiPiano is a formidable man of 67. To see him you would not think that he is a recipient of a kidney and pancreas, but he is and he has been celebrating that gift of life for 20 years!

It all started when Mike was 17 years old. He was a high school football player and a wrestler, between the crazy yoyo diets that they do to make weight as a wrestler, bulking up for football and being a typical teenager who didn’t really worry about what he was eating, he was diagnosed with Type 1 diabetes. Mike changed his diet went from 250 to 190 lbs and started taking medications to help bring his health under control.

For the next 30 years, he maintained his diet and stayed healthy until July 1996. Mike was working the Olympics in Atlanta when fell ill and had to be hospitalized. The doctors said that his sugar was too low, they stabilized him to be able to get back home. By the next day, he was rushed to St Michael’s Hospital in Newark with pneumonia and he went into a coma. He was given last rites and the doctors they gave his family a 10% chance of survival. His sugar level was 800, it should be in the low 100’s. The doctors were able to bring Mike back from the brink and get him stable, he was transferred to St Barnabus Hospital in Livingston where they discovered that his pancreas was not producing insulin and that is when the decision was made to transplant his kidney and pancreas. Your pancreas works with the kidneys in tandem, if they only transplanted Mike’s kidney and not his pancreas, there was a very good chance that the pancreas would have an adverse effect on the good kidney and then he would need another transplant. Mike needed to go on dialysis in order to assist his kidneys so he could get stronger. In October 1996, Mike was put on the transplant list. Over the next couple of months, Mike recovered enough to get back to work as a High School wrestling coach at St Benedict's High School.

On October 24, 1998, the call came at 10:00 pm, the doctors asked Mike how he was feeling, no fever, no cough? Mike told them, “no I feel fine”, they said great we have a possible match for you. They told him to come to the hospital at 5:00 am, and when he arrived, they did some more testing to make sure that everything was perfect for the surgery, the tests came back a go. The surgery began at 10:00 am, took about 8 hours, and according to his doctors, his kidney started to work before they closed him up! Unlike the heart where they must get it started right away, the kidney sometimes is in “sleep” mode, some patients need to go on dialysis to help the kidneys get started.

When Mike woke up, he asked his wife Karen, “Did everything go ok”??? She said yes, it went very well! Mike found out that the donor was a young man 21 years old. The young man’s mother Jacqueline Neukum Semararo sent Mike a Christmas card (which he still has today) wanting to let him know who she was and who her son Sean was. She wanted to know if Mike was doing well and she told him that Sean wanted to be an Organ Donor! Her story will be a future story!

Since his surgery, Mike has lived a healthy life and working as the Athletic Director for 35 years at St Benedict’s. He talks about Organ Donation every chance he gets, he hosts a party and plays Santa for children on dialysis at St Barnabus. He is in the Hall of Fame for National Wrestling, the New Jersey Chapter, he received The Medal of St Benedict’s, St Benedict’s Hall of Fame. On New Year’s Day 2020 Mike will be on a float for Donate Life in the Rose Bowl. Mike lived in Nutley, NJ with his loving wife of 45 years Karen, where they raised their three children Mike, Michelle, and Frank, they now live in Daytona Beach, FL.

When Mike reflects on his receiving his gifts of life, he says “I am alive today because of Sean, he is my hero, not only my hero, my family’s hero. Anything I do is because of him, including being here to see my granddaughter born and watch her grow”!
Thank you VeroLuce Photography!

02/27/2019

My beautiful Megan was born 29 years ago today, she did not, however, live to see her second birthday, but the legacy she has left changed my life forever!

Monday, February 26, 1990, was a gorgeous sunny day, but bitterly cold and at 4:10 pm Keith and I were a little nervous, as we entered the hospital because she was three and a half weeks early, but once we saw her, we were elated. Megan was Keith’s third child, but she was our first together...we had such plans. Three weeks later, however, everything changed!

Over the next 3 weeks I was having a lot of problems with what I thought was Megan having diarrhea, but instead of losing weight from it, she was gaining weight. I went back and forth to doctors, and at first, they did not seem to think that anything was wrong, they were pleased that she was gaining weight and I was treated like a nervous mother. But there WAS something wrong, Meg was in congenital heart failure it was called Myocarditis (an enlargement of the heart) and all of a sudden our world turned upside down.

Over the next 6 months, we were introduced to a Pediatric Cardiologist and medicines so toxic that an accidental overdose was very real. We were able to keep her stable, but nothing was improving, but then things took a turn for the worse on Sunday, October 7, 1990. Keith allowed me to sleep in that morning, while he played with Meg, at about 10:30, I came downstairs, and he just put her down for a nap. We were able to enjoy a half an hour to have breakfast and talk about plans for the day when we heard this gut-wrenching noise that came from Megan’s room. The two of us bolted up the stairs, and as Keith lifted her from her crib, her whole body went limp. Her skin was grey, and she was unconscious, we were so freaked out. Keith called 911, and I ran down the stairs with her in my arms. We were so frantic, and the waiting for the paramedics to come to the house seemed to take forever. When they arrived, they carried her away in the ambulance, and as Keith and I rushed to the hospital, we couldn’t believe that she was not there. As it would turn out, she would not arrive for another 40 mins. The paramedics needed to stop the ambulance twice to start her heart again. When she finally came to the hospital, four large firemen were surrounding her around the gurney. Her cardiologist spent the next 5 hours getting her stable. He told us that Megan suffered a Cardiac Arrest and a Stroke, she now has Cardiomyopathy, and it is irreversible Keith and I were devastated. He said to us that he needed to stabilize her so she can be transferred to another hospital, she needed a heart transplant.

In 1990, Organ Donation was still such a rarity, but for a baby - it was virtually unheard of. The first hospital that she went to immediately listed her for the transplant, but because of the stroke, as time went on, they believed that she was a vegetable and before they even gave us a chance to prove them wrong, they dropped her from the list. We were on a mission to prove them wrong, and after we got a physical therapist to help get Megan stronger four months later, we went to Columbia Presbyterian hospital. When Dr. Linda Addonizio interviewed Keith and me, I brought all of my notebooks with her progress over the last 4 months, so that she would not be swayed by her outward weakness versus the great strides that she had gained since October 7. The Dr said she wanted to get a head CT to see how severe the damage may have been from the stroke, but based on our story, she said, I do not believe that she is a vegetable! On February 4, 1991, Dr. Addonizio showed us where the bleed was, she told us kids are resilient, I believe in Megan, we just listed her, she is the number one child in the nation for a heart transplant. So now we wait!

Over the next months, the stress of waiting was both stressful and frightening, knowing what was ahead for her and us. On Friday, September 13, 1991, the call came, and when Dr. Addonizio asked how Meg was, I told her, she was doing well, we are just anxiously waiting, she told us we don’t have to wait any longer, the heart was here. At that moment, I was terrified, knowing that another mother, just lost her child and the fear of the actual surgery itself.

At around 4:00am the next morning, Dr. Addonizio came out of the OR beaming telling us that the surgery was a huge success, she said that as soon as they placed the new heart in her chest, they did not need to help it to start beating, it started on its own. She was so thrilled, and Keith and I just embraced each other knowing we did it and she is going to be ok.

Megan broke all kinds of records, she was out of ICU after 2 days, she was in her walker flying up and down the halls greeting all the kids in each of their rooms. Dr. Addonizio told us that she was the most successful pediatric heart transplant at that time in Columbia history! We were so full of joy! But unfortunately it did not last, two weeks later she got an infection that she could not fight. Six weeks after her surgery, Megan lost her battle with the virus, and on October 23, 1991, she died.

Our hearts were so broken, but not our belief in Organ Donation, and to this day I do my best to educate people for the importance of giving the gift of life - in Megan's name! Be The Gift! 💜💜

02/07/2019

For the last two days you have read the beautiful stories of Gail Clegg and Stefania Demayo. As you read through the comments, you see the words “amazing,” “strong,” “remarkable,” and “heartbreaking.” These women are great examples of what organ donation is all about! They are ordinary women thrown into extraordinary circumstances. They both tragically lost a child and through an important chain of events their lives came together!

After reading these two stories, as well as the rest of the stories on The Heart of the Giving, I ask you one thing. If you or a loved one needed a kidney, a liver, a heart, you would want and expect that they get the organ they need to live, right? Of course, you would. You would hope and pray that someone would come forward and be an organ donor, whether it is as a living donor or a donor family. You won’t opt for Plan B, Plan B is death.

Currently, there are 113,725 people waiting for organs. 20 people die waiting every day.. So I ask you: If you are willing to receive an organ from someone because you KNOW that it will save your life, then why are you not willing to give an organ?

Gail did not donate Sean’s organs because she wanted to be a hero. She did it out of love, her love for Sean. He was a remarkable young man in life, and his life lives on; 100 people were changed forever because of him. Love lives; and it lives with Stefania. Because of Sean, she has two beautiful daughters, and on February 8, 2014, she gave birth to her son, Luciano. Sean’s brother, Brian, is his godfather! Organ donation IS love. VeroLuce Photography