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Joe's Heart Transplant Story

I would like to show my support for Newark Beth Israel’s Heart Transplant Center. They perform miracles every day for over three decades. Their doctors work at the cutting edge of cardiac care with ethics and integrity. They have performed over 1,090 Heart Transplants for patients coming from all walks of life. If you or a loved one needs cutting edge world class cardiac treatment I highly recommend Dr. Zucker and his team as they are exemplary.    Below is my story:

Joe Spinella’s Journey to his Heart Transplant

When I was 24 and only a newly minted Accountant, I experienced a coronary event –an artery spasm as I was on a bus about to enter The Lincoln Tunnel going to work. Fortunately I didn’t make it into the tunnel but an ambulance at its entrance rushed me to a nearby hospital and then later transported me to St. J’s Hospital.  I had experienced a massive heart attack losing 80% of my heart muscle, leaving me with a 24% injection fraction and a large aneurism extruding from my heart.  It was a devastating time for my Mom, Dad and family when told their young son was suddenly about to die. My team at St. J’s lead by Dr. Russell Brancato, Dr. Bregman, and Dr. Michael Kelly performed miracles along with the President of Bausch and Lomb and their engineers who implanted St. J’s first balloon pump in me. I was also lucky at the time that I was working for National Distillers on Park Avenue in N.Y. They had a great health insurance program and it covered all my medical bills. My company worked with me and allowed me to slowly re-enter the workplace. In about 6 months I was working at my capacity within the limits of my new reality. This set in motion a series of life threatening events periodically that I had to overcome and gave me the will to live my life as normally as possible over the next thirty four years. It was ultimately practice for the perseverance needed to receive a heart transplant in Newark Beth Israel on February 6, 2016.

In my twenties I never dwelled on my illness. I just set personal and career goals for myself for whatever time I had left.  I was always very good at following instructions.  Whatever the cardiologist told me to do- I did.  I was always very compliant with my medications, follow-up visits, hospital tests, and I always exercised.

Timing was good, as I was just shortly out of college and my interest in playing basketball was naturally waning. In my heyday I was a starter on my college team and was awarded “Student Athlete”.  After my heart attack I was disappointed that my playing days were over and gave up following or even thinking about basketball as a way to cope its’ loss in my life. I focused instead on what I could do - I studied accounting and finance and played the stock market.  

A few years later a piece of my aneurism broke off and gave me a stroke at work. I was embarrassed as the medics had to carry me out on a gurney in front of my co-workers. At the time I was working as a Senior Accountant at The CIT Group in Livingston. I still didn’t dwell on my heart problem, any regrets were negated when I met a feisty little Senior Accountant who took up most of my time. Nicole and I were having fun and in a short time were planning our life together. I continued pushing forward in my career and eventually became an Accounting Manager at CIT.  I also continued going to school and earned my MBA and passed the CPA Exam.

When I told my cardiologist that I was getting married he told me to go back and mention to my fiancé that my heart condition was serious and that I may only have about 5 years left to live. I did, and Nicky said that she would take whatever time we had together. We got married on November 16, 1986.

I kept my focus on my career and eventually became Controller and CFO of Copelco Capital. My heart condition worsened. I had a heart attack and my heart stopped on a business trip to Virginia. I was airlifted by Nicky’s company to St. J’s and Dr. Tullo installed one of the first implantable defibulators. The doctor’s and fellow heart patients urged Nicky to have a baby soon before it was too late. Back then it was an open chest procedure and took a long recovery period. I was 35 at the time and it was a game changer for me. It was supposed to be my most productive work years but my usually very private heart problem and recovery was now an open issue for my wife’s and my companies. The defibulator was a humbling experience as the shocks made me realize how vulnerable I was. A CFO on the floor in the middle of the office with his defibulator going off is not a career building moment. I got to know very well what disability discrimination feels like. Copelco within a short time let me know that insurance coverage for a major heart problem was not in their plans. After five years of excellent written reviews I moved on to better jobs.

My injection fraction dropped to under 20% and the Doctors were becoming concerned.  Even then I still never let the severity of my condition hold me back. I went to work in accounting for a broker/dealer on Wall Street and my wife gave birth to our twins MaryRose and Joe. That was the best decision of our lives and we started a new chapter with our new little family.  I continued my career and moved around as controller, treasurer and then a CFO and board member of a public company. In my heart I knew that my working days were coming to an end due to my declining heart function. That was the year I was awarded “Who’s Who” for demonstrating leadership and achievement in my profession as a CFO.  I had another heart attack and my injection fraction dropped to 10 -15 %. At that point I could not function- I was able to walk about one block. I gained weight as I was unable to exercise for any meaningful amount of time. Looking back I worked almost my entire career in heart failure.

My cardiologist in 2003 laid out my situation very clearly, go on disability or die in six months. I was 45 at the time with a young family. I was told to stop working and hopefully I would get to see my kids who were in pre-school at the time possibly graduate high school. I was told to go see Dr. Zucker in Newark Beth Israel, where the cutting edge heart treatments in New Jersey were being conducted. 

I re-focused my attention to my wife and kids and tried hard to be a good husband and father to my kids. I pushed my kids into activities that were time consuming so that I could rest while they attended their activities. It did result in life time skills for the twins with years in swimming, dancing, singing, piano, karate, Boys and Girl Scouts, and of course basketball for my son. My wife focused on their religious education and working full time.

In 2003, my wife worked for a medical device company and the head of clinical studies knew Dr. Baran and she got me an appointment to see him and the transplant doctors. Basically the doctor’s said I did not qualify for a heart transplant- and I believed them and accepted that fact. The transplant doctors also said that they could monitor me in the clinic, so for the next 13 years I would coordinate my medications with both my St. J’s doctors (Dr. Grossman, Dr. Kelly and Dr. Biehl) and my Newark Beth Israel doctors. The doctor’s also maintained all base line testing. This was very uplifting for me as I felt that I had the best care that was available. Thank you Dr. Grossman, Dr. Kelly and Dr. Biehl!

I was blessed at being a stay at home Dad. I had a once in a life time opportunity in getting to know and help raise my kids. Even though I needed frequent breaks and sleep and walking was hard- we did everything as a family together and I loved being with my kids and my wife. We did everything to help them grew up to be healthy and happy. We traveled to Boston, Washington and Philadelphia to foster a love of history and went to Disney and Hershey just for fun. I loved basketball again by teaching Joe how to play and I became an assistant coach. I was the photographer and publicity Dad for MaryRose’s Girl Scout troop with all the Mom’s. I got to see my kids make their Communion and Confirmation and attended numerous talent and dance and singing shows. I was able to help build a small wooden car with my son and cheer Joe on in his Boy Scout Pinewood Derby. I was there for his basketball games and considerable track and cross county accomplishments.  I was proud when MaryRose got her Silver Award in Girl Scouts and the Bergen County Art Award. They both went on to become adult black belts in Karate. I was there when they celebrated their Sweet Sixteen party and Proms. I taught them both to drive and helped them get into college. They completed a service trip to an orphanage in Nicaragua too. I struggled to be physically there for my family every day.

I tried to plan for my family all this time for life without me. My kids and Nicky knew I could have a major heart event at any time.  My defibulator continued to shock me when I least expected it. My kids were practiced at a young age to call 911. As time went on and the kids were almost grown I was very disappointed as I started feeling that my life was closing in on me. Life was becoming more limited. I liked to take my kids to the museums around Central Park in NY. It got to the point in 2015 that I would push a wheel chair in front of me in case I had to sit which was often. After a while I would sit at The Temple of Dendur at The Metropolitan and my wife and kids would visit the exhibits without me. I just smiled and tried not to ruin their trip.

Thru it all I tried to keep up on my professional skills. I self-published three investment books, developed a financial website, and taught accounting at Rockland Community College for 3 hours a week for the past thirteen years. I never gave up hope.

As planned by my cardiologist 13 years earlier, in June 2015 I saw my kids graduate from Mahwah High School. Their bedrooms are full of their Academic, Artistic, Athletic and Community Service Awards.  My daughter went to Montclair to become a History and ESL teacher. My son went to William Paterson University as a Marketing and Professional Sales Major. Both will graduate in 2019.

When all else failed and hope was fading in my life Dr. Zucker, Dr. Baran and their team at Newark Beth Israel came to my rescue. On January 1, 2016 I went into rapid heart failure and was admitted to St. J’s. I had an ablation there and then my defibulator one night kept firing.  I think I hold a record as I was shocked 86 times by my defibulator in one night. Even though it was painful I survived. The young on call resident told my wife that I had been sick for a long time and she would not waste her time on me or call my doctors at St. J’s or call Beth Israel. She said I would not survive the night and she would let the defibulator shock me till I died.  Those were fighting words for my wife who woke up all the doctors, got them to prescribe a drug of last resort and after hours of calling and not accepting “No”- at 3am got approval from Dr. Barron to accept me at NBI if I survived the night. I did! In the morning Bess arranged to transfer me to Newark Beth Israel in a special ambulance. Thank you Bess – You are a miracle worker.

Dr. Zucker’s team started operating at Beth Israel that first night with a Tandem Heart. Nicole said that everyone was so confident and upbeat and in command. She wasn’t afraid because the doctor’s at Beth Israel made her feel that they could make a difference or give their all trying.  My wife told me all I had to do on my part was “to go to sleep and to wake up”, which I did. When Dr. Camacho tried to install a Tandem heart device my heart just crumbled in her hands with nothing to attach it to. Nicole was still not worried even with a room full of machines keeping me alive. Over the next few days they tried two other VAD operations but I kept developing large blood clots. Dr. Zucker, Dr. Camacho, Dr. Baran, Dr. Saunders, Dr. Gidea, Dr. Pieretti, and the transplant team carried me.

I never experienced pain or fear. I was always told of all the risks involved but I was given encouragement through-out the process. I always felt that I was in safe and competent hands. My wife always said that she felt that we existed in a “State of Grace”, nothing was going to harm me.  My bed overlooked The Star of David which I felt protected me during my stay even though I was a Catholic. My wife felt that we were in a tunnel full of grace and that our decisions were guided by a higher power and by our parents up in Heaven who held us up.

 The doctors were then planning to install the first mechanical heart at NBI in me; they were flying in an expert from California to oversee the procedure.  That was a little daunting. Nicole attended her first Hearty Hearts meeting at that time for support which she felt made a big difference in her ability to be strong.  At the time I told Dr. Zucker that I would take the mechanical heart but I would prefer a real heart if possible; but none was available.

Unexpectedly after about a few days, for a brief moment I became number one on the transplant list. On a sudden conference call Dr. Camacho called my wife on her cell phone while Nicole was in her car hurriedly parked on the side of a road and asked me in my bed at the hospital if I wanted a heart if it came available. My wife told me that only I could make that decision and I had to be the one to accept a heart that Dr. Camacho offered. Contrary to belief, it was not an easy decision for me to make. I was feeling sorry for the donor and their family. I was tired and the fight was starting to get the better of me. Heart transplants are the last resort in cardiac care and are at the forefront of a complex medical procedure. It is not unusual for patients to have complications and or die.  I wanted though to live!  In an emotional conversation I told Dr. Camacho and my wife that I would accept a heart and all the risk, uncertainty and work that goes along with it. It was a poignant moment and the start of our journey. Very soon afterwards a large heart with CMV became available from an 18 year old donor and his heart was passed up by all the other transplant centers. We accepted by signing papers held by Dr. Gidea and melted into tears. I try my best every day to honor that pledge to keep the heart in good health and think of my 18 year donor “The Kid” and his parents every day.

My wife said that during the transplant that started on Feb. 5th, she had no worry and no regrets. I never thought about the details and complexity of the operation, I looked at it as just another procedure.  We did not feel scared. Everyone had done their very best and we really did not entertain any negatives. We had kissed with a “see you soon”, “I love you” and “just go to sleep and wake up”. She and I were calm and composed and upbeat. The staff was with us and many told us they were praying for us.  My brothers and sisters were with Nicole in The Kimberly Room- her haven- and our friends and Priest called with prayers. The next day Feb. 6th --Dr. Camacho told Nicole coming out of the transplant that “it was a perfect fit”. 

A few weeks after my transplant the doctors thought I had a blood clot. I was not up and about, I was not walking. I could not walk. When the surgeons went in they found that my body developed an armor around my new heart and it was squeezing it to death. Dr. Camacho had to peel the armor away, and an hour and a half operation turned into nine and a half hours. The doctors made it very clear to my wife that my situation was dire. I am grateful that The Hearty Hearts were sitting with Nicole in the waiting room. I had one too many operations and my kidneys got compromised in the process and needed time to rest, just as my heart did 34 years earlier. My heart pressure afterwards returned to normal but my kidneys needed time to heal. I went on dialysis which was very hard to accept and to maintain for both of us. Nicky created a scene to stop the technician from hooking me up to dialysis until a doctor spoke to us about all the ramifications of the procedure. Two years later and off dialysis- I was talking to a fellow heart transplant recipient who just undergone the same procedure that I had and he was fine. I smiled knowing that my problem may have helped someone else- this time without the kidney complications that I had.  In total I had five operations- four over a week including the transplant. Rene and the staff got me cleared within hours for the transplant –and Bess handled the finances. Thank you all!

I left the hospital after 5 months to Kessler for rehab. My wife had stayed those months (24/7) in the waiting rooms, on a chair in my rooms and in the nurse’s quarters for all that time. She thanks Ken Terry and Jeff who got her a shower and a room after a while. Many times she just slept by my side and we watched the second to last episode of The Hobbit over again every night holding hands! She ate at the coffee shop or scrounged food and got to know the guards, nurses, gift shop clerks, pharmacy, cleaning crew and whole support staff in the hospital. (She also recorded some of my phone conversations which were of me yelling at her while on Prednisone and took pictures of my recovery as evidence for me and for posterity!). She walked up and down the hall ways and stairs for exercise and strategized with all the spouses in the waiting rooms. She got to know all The Hearty Hearts who held her up all of those days. The kids came to visit me when they could and I now had three eighteen year olds to worry about! My Twins and “The Kid” who was now part of our family.

My muscles had started to atrophy before I got to Kessler. I had to re-learn how to walk again and I also needed Dialysis three times a week at Devita. I was at Kessler for three weeks. I treated rehab like basketball practice, they re-taught me how to walk, climb stairs and get into a car correctly. I was like a possessed man and did all the exercises to the max. I was self-motivated to walk again. Nicky caught the flu even with having had the vaccine- after getting me to my first day at Kessler and she was out of commission for a couple of weeks. 

Dialysis was harder on my family then I. Dr. Zucker, however, always gave me hope even though the statistics of getting off dialysis were very slim. Hope of getting off dialysis is what gave me the strength when sitting in the dialysis chair for all those hours. I only listened to those doctors that were associated with Dr. Zucker’s team because they were the experts to deal with my highly risky and sophisticated case.  I was afraid and resisted getting a fistula. The nurses and social workers at Devita were giving me the “hard sell” to operate for a fistula and told me that “No One gets off dialysis”.  I just stayed firm and always said “no” because I knew I had a slight chance of recovery and had hope. Then unexpectedly on December 31, 2016  Dr. Lefkowitz, my nephrologist took me off of dialysis after nine months due to my blood test results and so far it has worked. My kidneys have stabilized and I have been off of dialysis for three years. It was fantastic to leave “The Chair” behind. Dialysis makes you tired and cold and wears you out. The skin on my lower legs became like dark red leather.  My white and red blood counts were off, but Dr. Sabnani, my oncologist and our Mother Theresa, was able to regulate my numbers and got me back teaching in the classroom with a surgical mask in Sept. 2016. The transplant doctors treated me for CMV and so far the virus has not showed up.  It’s a simple concept I think- when the heart works and is strong- the body is able to heal itself.

I was fortunate that I had a big loving family and a community to help me get back on my feet. Every day my brother and brother-in-law would walk me. They re-taught me how to walk without assistance. My brother-in-law helped me out with the bills when I ran short. Our sisters helped out Nicky and I in so many ways and many people prayed for me. It took the whole community to get me back; my family, friends, neighbors and our church. Our neighbors and mailman lined up and cheered me on as I walked around the neighborhood first with a walker, a cane and then on my own. I talk to “The Kid” a lot, he is a trooper and a perfect fit for me and my family, and he has found a home with us. 

Looking back my transplant was hardest on my wife.  She was my main caregiver and sacrificed the most: my medicines, my diet, my routine tests, my office visits, the eye doctors, the skin doctors, the dentist, driving me to and from dialysis. It was an overwhelming amount of work for my wife to get me back functioning. She became a strict task master and made sure I dotted my i’s and crossed my t’s. She says it changed her personality and she is not afraid to ask a question or speak her mind anymore. She says we both live our lives now with greater courage and understanding- it’s been a great adventure for 32 plus years. I probably would not be here today if it were not for her. She also put her career on hold to save my life and is a ten year colon cancer survivor.  Thank you Nicky, I love you!

I had my transplant three years ago, my biopsy’s are zero (excellent – no sign of rejection). I’m trying to become more active with the Hearty Hearts and the N.J. Sharing Network. Life is good again.  Taking care of my heart is a full time endeavor. I am forever grateful to my donor and his family. I don’t know what lies ahead in the future but I’m optimistic and grateful for a second chance at living. Thank you Dr. Zucker, Dr. Camacho, Dr. Baran and your transplant team at Newark Beth Israel for saving my life. My children have their father and my wife has her husband and now I’m using my life experiences and expertize to help improve the life of others.     – Joe Spinella

 

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