Glen Kelley shares his story and the Second Chance for Life Foundation in the Journal of Heart Failure
Second Chance for Life Foundation’s former president, Glen Kelley was published in the September 2021 issue of the Journal of Cardiac Failure. The purpose of the article was to share his patient story along with SCFLF to an international audience of clinicians, researchers, and academics.
“You are here for a reason,” said my cardiologist, Dr. Rebecca Cogswell. Those words have stuck with me ever since I saw her for my six-month post heart transplant checkup. At the time I didn’t know what that statement could represent but knew this was because of my medical journey and collective success.
In the Summer of 1984 while blaring Born In the USA by Bruce Springsteen and a week before my senior year of high school I was diagnosed with Stage IV Hodgkin’s Disease. I spent my entire school year receiving either chemotherapy or radiation treatments. That said I still graduated on time and went to college the following fall. While in college that following winter, I was having a routine checkup with my oncologist. It was discovered that the cancer had come back in my right lower lung. With that news we decided and I was approved to travel to the University of Nebraska, Omaha for an autologous bone marrow transplant. I spent 32 days in-patient and other than some brief follow up radiation therapy have remained cancer free ever since.
Fast forward seventeen years to 2003 and I would begin to discover the impact of long-term side effects. I had just finished a week hiking Yosemite and was training for my first marathon. I was then struck for what would become the marathon of my life. Following a 15-mile training run I began to feel like I had come down with a flu bug that evening. The following day I started to cough frothy blood that wouldn’t stop. I was taken to the ED where with my elevated troponins they pronounced I was having an MI. Several days and stents later I was well enough to go home. This was my introduction to heart disease and eventual cardiac failure.
Eventually I would have a CABG on the distal portion of my right coronary artery in 2013 at the University of Minnesota Medical Center (UMMC). My CAD continued and I began showing symptoms of heart failure and the beginning of restrictive cardiomyopathy. Thus in 2015 Dr. Ken Liao at the UMMC performed a 12-hour procedure which included replacement of the mitral and aortic valves, repair of my tricuspid, closure of a patent foremen ovale and a radical pericardiectomy.
Soon we realized that the restrictive cardiomyopathy would continue to progress leading to heart transplant. Nine months after my previous procedure I was admitted and listed for a heart transplant just in time for Christmas! This would not be a normal holiday for me so I decided I would not be a normal admission for my providers and staff. This was under the previous organ allocation system so I needed to be in the ICU with constant treatment and remain status 1A for many months. My approach was simple, make it as FUN as possible. Thus, over the following weeks I had a 50-inch TV, Xbox, Apple TV, computer, color laser printer, refrigerator, cappuccino maker brought in. And if those were not enough I discovered the true benefit of Amazon Prime having a Hawaiian shaved ice machine and disco ball delivered. The party and waiting ensued.
My health became more complicated while waiting, I developed an organizing pneumonia which effected my transplant eligibility. Eventually my lungs improved but my restrictive myopathy continued to progress. By July we made the decision that I would transfer to Baylor, Smith & White (BSM) in Dallas, TX.
Greeted by my Baylor cardiologists Drs. Shelley Hall and Timothy Gong I wore what I believed what any Texas trans- plant patient should wear: Cowboy Hat and Hawaiian Shirt. (Hawaiian shirts work extremely well for holding telemetry boxes) My wait continued until I was transplanted August 7-8th, 2016. Like much of my medical history the surgery was complicated. In addition to transplant, lead surgeon Dr Themistokles Chamogeorgakis and team grafted a new ascending aorta, repaired my innominate vein and delt with dense adhesions and profound bleeding throughout due to my previous irradiation. In addition, my radiation lung dis- ease had impact on respiratory results. The total procedure took 12 hours, and we were told later it was one of the most difficult they had ever seen.
After transplant I would spend the majority of the next two and half months in the ICU. Several health challenges presented during this period some included resternotomy due to blood leak detected, acute kidney injury on top of existing chronic kidney disease, atrial flutter, acute organ rejection, acute respiratory failure which was compounded by metabolic alkalosis, and a fungal infection within my chest wound. However, I eventually discharged and came home just in time for Thanksgiving. It had been one calendar year since admission.
How did I get through this? Unwavering optimism: have fun and always remembering that life is a team sport. Those themes were embodied just before my discharge. Remember the disco ball? It was hung from an IV pole throughout my stays at the UMMC and BSW. The day before discharge I hosted two disco parties: one for the day shift and one for the night shift! In the days preceding my occupational therapy sessions consisted of making and hanging party decorations. There was cake, mocktails, music and a nurse even cut out a chorus line of Can-Can girls!
I developed unique bonds and friendships throughout, most notably with fellow heart patients and caregivers. People that knew what I was going though because they had gone through it themselves. I was fortunate that at the University of Minnesota Medical Center (UMMC) a partner organization of transplant and LVAD patients for the same patients was formed over 30 years ago.
Second Chance for Life Foundation (SCFLF) was formed in 1986 by two patients that realized there was something to this patient to patient bond. Eventually they formed the foundation becoming a 501c(3) organization. The organization has evolved to support the emotional, financial and education needs of heart transplant / MCS patients and their families.
SCFLF members provide support through two weekly support group meetings: one for MCS/LVAD patients and caregivers and one for heart transplant patients and caregivers. Since the pandemic began those meetings have moved to Zoom and now can include an underserved, geo- graphically dispersed patient population as well. Those meetings led by UMMC social workers are open to the range of topics that patients may face. Patients and family members considering a device or transplant through recipients that may be 20+ years out often attend the meetings. No topic is off limits (except religion and politics!).
Patients and their families can face a variety of financial hardships during the time of transplant or device placement. Sometimes the unexpected occurs, like a broken appliance or car repair. SCFLF is able to help patients with some of those unplanned events as well as housing for patients that live away from the Twin Cities.
Patient and caregiver education are critical for long-term success. SCFLF extends initial patient education by sponsoring annual education workshops where faculty from the UMMC present health topics important to post transplant, long-term medical effects. A few topics have included infectious disease, nutrition and food safety, kidney health, and dermatology. Recently those events have shifted on-line and are now recorded for on demand patient use anytime.
SCFLF also helps patients celebrate key milestones along their journeys. When a patient receives a transplant they along with their family members are awarded custom heart pins with their name, transplant date and their transplant number at the UMMC. After that, during annual holiday celebrations all patients and caregivers are awarded anniversary pins for key milestone years, e.g. 1 year, 3 year, 5 year, 10 year, etc. (There is even now a 40-year recipient!)
SCFLF is a 100% volunteer effort. I personally saw and have felt that impact during my cardiac journey. Once my health better stabilized the year after transplant I began to volunteer. At first, I visited with fellow patients while waiting for a transplant. Over time I found additional avenues to support patients with the SCFLF website and social media outlets. Now as I approach the five-year anniversary of my heart transplant I have served as President of SCFLF for just over a year. At 54 years old I am fortunate to have stumbled into my second career. I have become the patient that helps patients.
Perhaps Rebecca Cogswell may have been right when she told me that I am here for a reason. That said, I know I am here for an opportunity. The opportunity to help those that are where I was and to help those who helped me. This second career is simple, it’s all about the gratitude.
Thank you,
Glen