COTA for Alan's Journey

Our Story

Alan Flanigan, 39 years old, received his dual transplant, with the heart on April 17th and the kidney on April 18th, 2022, at the Cleveland Clinic. This is Alan’s second heart transplant. The severity of his heart failure, while waiting for this life-saving transplant, irreparably damaged his kidneys as well. Alan had been living at home with his wife, Nicole, and their (now 3 year old) daughter, Reese.  Alan loves hockey, playing games, golfing, cooking, fishing, and any time spent with his family and pets.

Alan’s first heart transplant was in 2001. During his senior year of high school he started exhibiting flu-like symptoms and just after his 18^th birthday, he was admitted to the Cleveland Clinic for end-stage heart failure; he waited 3 months for a transplant. Now, more than 20 years later, that heart has exhausted its capabilities. Alan has been hospitalized multiple times over the past two years. In November, Alan was listed for his second heart transplant while he was still able to live at home with his family. By December 30th, his heart had become too weak and he was in cardiogenic shock, taking a toll on several other organs. He was admitted locally and transferred back to the Cleveland Clinic, 2 hours from home, and quickly placed in the ICU. They installed an intra-aortic balloon pump to ease the stress on his heart and hopefully allow his kidneys and lungs to recover. His lungs were able to recover however his kidneys had only gotten worse.

Alan and Nicole met and dated in high school only a few months before Alan became sick. Throughout the changing years, growing into adulthood, they maintained a close friendship. They have been inseparable the past 10 years and were married in 2016. Despite medical setbacks, Reese was their greatest blessing and dream. When Reese was only 5 weeks old, Alan’s defibrillator had a malfunction and shocked him six times. The shocks decreased nearly half of his remaining heart function. Alan was never truly able to recover from that event. 

Alan’s medical journey has always had obstacles, but the past two years have posed innumerable challenges. He had been sick for the first 2.5 years of his daughter’s life. With Alan’s immuno-suppression from the first transplant, his family had to be highly vigilant with isolation practices throughout the entirety of the pandemic. To protect Alan, Nicole was his only visitor the first 3 months and remained in isolation outside of the hospital. Alan’s parents were integral in the support and care for Alan’s first transplant (as well as his brother’s heart transplant), yet sadly it was safest for them to remain at a distance. After strict quarantines plus changes in visitation policies at the clinic, both Alan’s parents and Reese were able to visit after his 100 days of separation. It was painful to miss that precious time with Reese but they knew that sacrifice opened a new lifetime of possibilities.

Nicole rented an apartment at Transplant House of Cleveland for 161 days. Ordinarily, Nicole worked full time as a PA in surgical pathology, however, she went on unpaid leave to support Alan and keep him safe during these difficult and isolated times. After Alan’s hospitalizations (and Nicole’s leave from work) surpassed 6 months within the last year, Nicole lost her job of 14 years. Reese divided her time between grandparents but had lots of FaceTime contact with Mom and Dad. A transplant is stressful enough, but a second one while away from loved ones was excruciating at times. Alan and Nicole are so grateful for the outpouring of love, support, gifts, and help at home from additional family and friends.

Alan can’t wait to have the ability to be a father, husband, son, brother, and friend with less limitations. Nicole can’t wait to have her happy adventure partner back. Reese can’t wait to run and play, while trying to make daddy keep up. Donations to COTA for Alan’s Journey will allow COTA to assist with transplant-related expenses such as medical costs, lodging and food in Cleveland, bills at home while Nicole has been without a paycheck, and transportation between Cleveland and home when possible. Even without a monetary donation, positive thoughts, good vibes and karma, or prayers are appreciated. The Flanigan Family is thankful you took the time to read Alan’s story.

We have chosen to work with the Children’s Organ Transplant Association for multiple reasons. Although a pediatric diagnosis can have a lifetime of implications, we hope this story highlights the possibility of optimism. With the generous capabilities of associations like COTA, Alan’s story is one of hope and strength. If ever needed, Reese can also join COTA if she needs support herself. We are fighting to gift both Alan and Reese a lifetime of opportunities, accomplishments, and happiness. There is a chance for life after diagnosis … maybe even three or four chances.

The Children’s Organ Transplant Association (COTA) helps children who need a life-saving transplant by providing fundraising assistance and family support. COTA also works with individuals of any age with a single-gene disorder such as Polycystic Kidney Disease, Cystic Fibrosis or Sickle Cell Disease. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy families. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free of charge and gifts to COTA are tax deductible to the fullest extent of the law.

Additional Medical Information:

Heart failure leads to fluid retention which places additional strain on the kidneys; fluid retention can then put added pressure on the heart increasing the heart failure. The high amounts of diuretics necessary to attempt fluid removal only exacerbate the kidney stress – this is called cardiorenal syndrome. Additionally, the anti-rejection medications that have been essential for Alan over the past two decades slowly damage the kidneys. After this transplant, Alan will obviously still need to use these medications, so he needs the strongest set of kidneys following this transplant. Alan was on daily dialysis plus the balloon pump and IV medications to keep him stable until transplant.   

Alan has the TTN (titan) gene which is the leading genetic cause for adult-onset dilated cardiomyopathy. Additionally, he also had Wolff-Parkinson-White which led to his teenage onset; fortunately, that cause was not genetic. One of his two older brothers also had the TTN gene, being diagnosed at 45 and transplanted at 50. His father was diagnosed at 68 and is doing great at 74 with a few medications. Although TTN is autosomal dominant, it only significantly affects around 60% of the genetic carriers. Alan’s daughter, Reese, is a carrier but has been followed by a pediatric cardiologist since before she was born. Alan continues to perserveer not only to provide hope to other heart failure patients but also to set an example of strength should Reese be faced with this diagnosis/transplant need in the future.