By Bob Romer –
Steve is one of those quick-witted people you meet who seems to have an aura of calmness about him. Even hooked up to a left ventricular assist device (LVAD) and an IV pole with intravenous medications keeping him alive, he would constantly joke and play pranks on his nurses and medical technicians. We were well suited as roommates and able to support each other through our life and death situations that seemed to occur almost daily. We became heart brothers; we are heart brothers to this day. Even after a month of not speaking to each other, our conversations now start with laughter and feelings of joy that we are alive and able to connect with each other at all.
Battling Congestive Heart Failure
Steve was diagnosed with Type II diabetes in 2006, his health quickly declined and, later that year, he suffered a heart attack. His following EKG and blood work showed that he had actually suffered a heart attack sometime prior to this one. Due to the severity of his condition his doctors performed an emergency quadruple bypass surgery. Although the bypass surgery was successful, unfortunately Steve’s two heart attacks had caused severe damage to his heart which sent Steve into acute congestive heart failure. This demanded an intense cocktail of medications and the implantation of an internal defibrillator / pacemaker (ICD) to battle and stabilize his heart failure.
Steve was a self-employed commercial logger, building contractor and hobby farmer on his acreage in very rural section of northern Vermont, the Northeast Kingdom as Steve lovingly refers to it. His livelihood was based on his physical abilities and skills and their income began to suffer more and more from his diminished abilities as his heart continued to worsen over the next six years. It was a major blow, not only to his family’s way of life, but also to his loved ones and doctors who began to desperately fear for Steve’s life. His only chance to live would be a heart transplant and his cardiologist referred him to Tufts in 2012 to begin the heart transplant listing process.
While Steve was being assessed for listing at Tufts they determined that he had a polyp in his colon with a high-grade dysplasia and it was removed. This is a common occurrence and procedure, and thankfully, it was pre-cancerous which didn’t disallow him for getting on the heart transplant list. However, after getting home, Steve developed a serious colon bleed and was brought to Fletcher Allen Hospital in Burlington Vermont. It was necessary to insert three coils to stop the bleeding but the severe blood loss pushed Steve into end stage heart failure, whereby they transported him by ambulance back to Tufts.
During the four-hour plus trip the heart began to beat irregularly causing his internal defibrillator to shock him repeatedly to reverse his deadly heart rhythms.
The Bridge to Transplant
It was determined very quickly after his arrival at Tufts MC, the leading heart transplant hospital in New England, that Steve was in very critical condition. In order for Steve to survive, the doctors needed to implant a left ventricular assist device (LVAD), also known as a heart pump. The LVAD pumps blood from the lower left chamber of the heart to the rest of the body keeping a constant flow of life saving blood to rest of the organs in his body. His severely damaged heart was no longer able to do this function on its own. On March 5, 2012, after a grueling twelve-hour surgery his pump was installed and began feeding much needed blood throughout his body. Thankfully, Steve recovered well in four weeks, was listed as “1A” status (the highest priority) on the heart transplant list, and he was able to return to his home and loved ones to begin the wait for a heart.
Steve cherished his time at his beloved home in rural Vermont with family and friends. However, in August, after only four months at home adjusting to life with an LVAD and all its challenges, Steve developed potentially fatal blood clots inside the heart pump. These potentially fatal clots are a possible side effect with some LVAD patients and Steve was one of the few patients who are prone to develop them.
He was again rushed to Fletcher Allen Hospital and then immediately on to Tufts MC. As if in a reoccurring nightmare the long ride to Tufts was riddled with numerous shocks from his ICD because the heart could not maintain a proper rhythm. The doctors at Tufts MC were forced to perform a cardioversion, which is a procedure that uses a more powerful external electric shocking device. Thankfully, these more intense shocks coupled with medications brought Steve’s heart back into a normal sinus rhythm.
Due to Steve’s propensity for clotting and several other factors, he became a “higher risk patient.” The possibility of sudden death was now at a stage where Steve needed closer monitoring. In fact, the risk was so high that he would need to stay at Tufts’ Cardiomyopathy Unit, until they could find him a new heart. This began a long and arduous nine- month ordeal for Steve and his family.
The Miracle of May
Although we were no substitute for his family who were far away in the Northeast Kingdom, Steve had become very close to both me and another patient, Pat Sullivan. We, “The Three Amigos,” talked about all the happenings in our lives, how we needed to stay strong in order to survive, and shared spiritual guidance from a very wise and gifted spiritual friend.
Steve’s wait for a heart extended past our time in the hospital. After our departure, friends and family feared that he would be alone in the battle to keep his spirits high and that he may not stay alive long enough to receive a new heart. As the weeks crept into months, Steve and his family tried to overcome the loneliness of separation with Skype, email, and other technological replacements, but as you can imagine, it is just not the same as having your loved ones there. Despite the difficulty, Steve, Julie and the kids somehow carried on and persevered through the ensuing months.
Steve’s will to survive was strong and to keep his spirits up he began visiting other patients on the floor and helping them in their fight for survival, making even more lifelong friends, heart brothers and sisters. He was given more freedom than any other patient on the floor. He walked constantly all over the hospital with his IV pole clanking alongside him and they would find him in some of the remotest areas of the million square foot facility. He knew that building up his strength would not only increase his ability to survive the transplant when it arrived, but would also keep his diabetes under control as well.
Thankfully after a very long nine-month stay, Steve’s new heart arrived on May 18th, 2013. His transplant was successful and after an additional three-week recovery he went home to his beloved family.
Although Steve made many lifelong friends during his hospital stay, he would say that hardest thing about the stay was his separation from his family. Sadly, he witnessed several of his new friends pass away. Steve is known and loved by all up on the Cardiomyopathy Unit and he continues to go back up to the floor on his frequent visits to the Cardiac Clinic.
The drive to Boston from Steve’s Vermont home is approximately four and a half hours. This is a major trip in any circumstances, but with special needs children, it becomes a much greater undertaking. In addition to the logistical issues, the costs associated with a trip of just a few days will easily add up to over a $1,000 for hotels, food, gas and parking. Given this, having his family visit him was not an option on a weekly or even monthly basis and this caused additional stress on Steve and his family. Even as calm and jovial as Steve is, there were days when the separation from his family was tearing him up inside. It was heartbreaking to watch, and as his friend, I wanted to help but was unable to do anything to help him.
In Boston and other cities, there are many foundations that provide temporary housing for long-term cancer patients and their families. However, at the time of Steve’s stay, there was nothing comparable for severe cardiac patients and their families, though the medical and financial impacts are just as difficult. Regrettably, Steve and his family could not afford to be together during many of his critical times in the hospital. Steve had to endure alone and Julie and the children were left feeling helpless to aid him and to be there for him in his time of need.
Steve stated to me in one of our many conversations that – “I can’t imagine not staying in touch with my heart brothers. They gave me inspiration to survive and to make it home again with my new heart. I feel blessed to have their support and I know they feel the same way from me. The gaps my friends are now filling with the HeartBrothers Foundation are very important and sorely needed. I know those gaps as I experienced many of them first hand.”
Thank you Steve, you are an inspiration to us all.
Your Heart Brother, Bob Romer