#ThanksBob
CKF Ambassador Pat McEntee’s Transplant Journey
Pat was diagnosed in his twenties with not one but two congenital heart defects. The first being Hypertrophic Cardiomyopathy, which is a thickening of the heart muscle that makes it harder for the heart to pump blood. The second was Wolff Parkinson White Syndrome, an extra electrical valve in the heart, resulting in a fast or irregular heartbeat.
This combination is extremely rare, and at the time, Pat was one of seven individuals worldwide with this particular combination. This made Pat’s treatment and journey extremely unique, as the doctors were less experienced with his condition than others. Pat was eventually treated with an ablation for Wolff Parkinson White Syndrome. This treatment allowed Pat to live like a regular 20-year-old who felt he could take on the world. He was not taking any medications and did not experience a single complication.
This feeling of invincibility lasted almost ten years until when, in his early thirties, Pat experienced a stroke. This was not the only stroke he would experience. Less than six months later, he had another, making it clear that his heart defects were playing catch up. Pat was lucky that he did not suffer significant long-term side effects and was able to return to his regular life. However, it was becoming evident that his health was declining. Pat often likens his experience to a snowball at the top of a mountain–it starts rolling downhill slowly at the start but quickly gets bigger and faster.
Fast forward to just before his 40th birthday, when Pat found himself becoming increasingly limited. He regularly found that simple daily tasks required him to stop and catch his breath. This was when Pat began to question his original diagnosis. Doctors tested Pat and confirmed it was the correct diagnosis, but it presented differently than they had ever seen before. Pat had always called himself unique, and he proved it once again.
Pat soon began to develop a dry cough, which, coupled with his other symptoms, became a strong sign of heart failure. Doctors started the conversation about transplant and began Pat’s evaluation. Pat was determined not to let this stop him from completing his tour of the thirty Major League Baseball Stadiums. He visited his last two, including the Yankee Stadium in New York, before walking the length of Niagara Falls. When he returned, he discovered he was in end-stage heart failure, which explained why he had to take regular photo breaks to catch his breath.
The doctors immediately admitted Pat and told him he was to remain in bed and could not get up for anything as this could cause his heart to fail completely. He was soon approved for the waitlist, but this did not immediately fix his problems as a heart transplant can only be performed when there is an organ donor. Therefore, the waitlist is very long. Doctors performed surgery to place Pat on an LVAD machine to prolong his life until a heart transplant was possible. The LVAD machine was Pat’s lifesaver for three years and even helped improve his heart function a little to give him a better quality of life, though still not great.
Pat put a considerable focus on remaining positive and keeping a good attitude. He was entirely grateful for his support crew, who helped him get through the experience and motivated him every day. Whenever he struggled, he would remind himself that others were in a worse state than him and they needed and received a heart. He grounded himself with the mantra that when his time came, when he needed it the most, the right heart would come and save his life, and that is just what happened.
In July 2017, Pat experienced a stroke caused by the LVAD machine. Luckily, it was not debilitating, and he was able to recover just in time to receive the call. The phone rang at the stroke of midnight to say he was receiving his transplant. Pat refers to this as his “Stroke of Luck.” When asked if waiting was hard, Pat acknowledges while it was, he never lost sight of the fact somebody would have to pass away to save his life. Therefore, the three years he waited allowed three years for his donor to be with their family.
Pat connected with the family of his donor, Robert, around five months after his transplant. They are from Wisconsin, and his donor was a father to four sons. Pat met Robert’s family on Father’s Day, which made the meeting hard as he knew that thanks to their father’s decision, Pat’s daughter had her father, but they were missing theirs. Pat and his family are forever grateful for the gift they were given, and they work hard each day to honor their donor and his family.
Since his transplant, Pat has had no major complications, which he knows is often not the case for transplant recipients. He can now do everything he could not while his heart was failing. Pat has been honored and humbled by his experience over the seven years of heart failure and transplant and works to live his best life in honor of his donor, Robert. Every time he posts to social media, Pat ends with the hashtag “#ThanksBob” because, without that gift, it would not be possible.
