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January 4, 2022 — Each year, January 12th is designated as National Pharmacists Day. Transplant families throughout the nation rely on the expertise and guidance of their trusted pharmacists. One pharmacist in Pennsylvania is an incredible resource to transplant families now that he is on the other side of his life-saving double lung transplant.
Christopher Raybuck, PharmD, was diagnosed with Cystic Fibrosis (CF) in July 1994 just before he turned two years old. Chris grew up having CF, yet had a somewhat normal life. He had a long-time goal of attending pharmacy school — a goal he achieved in 2011 when he started Duquesne University School of Pharmacy in Pittsburgh. Little did Chris know then that a classmate named Kate would become a very significant part of his transplant journey … and his life.
“Although we mostly took the same classes for the first few years of pharmacy school, Kate and I hung out with different friend groups. We never really had any
interactions together until the spring of our fourth year. One of our professors, Dr. Jane Cavanaugh, PhD, was looking for a couple of PharmD students to work in her research lab; Kate and I both expressed interest in the opportunity. During the summer of 2015 we spent most of our time together conducting research on new, potential breast cancer treatments in the research lab. Most of the experiments had a lot of down time so while we waited for the gels to run or cells to incubate, we got to know each other pretty well,” Chris said.
The summer of 2015 was also when Chris’ health started to decline due to CF. Chris had run the Pittsburgh Half Marathon in 2014 but by the summer of 2015, he had trouble walking up three flights of stairs to get to the research lab. By the fall of that year, his lung function had dropped to about 50% of what it should have been and respiratory infections were becoming more frequent. In Chris’ words, the situation went from bad to worse when he suffered three consecutive collapsed lungs in September and October. He said, “I spent the majority of the fall semester in the hospital and Kate was right by my side for all of it.”
With Kate’s help and encouragement, Chris was able to make it through several long hospital stays while staying on track with his coursework. Chris and Kate both graduated summa cum laude from pharmacy school. They graduated together … on time … and while he continued his CF battle. Both started their careers as pharmacists at the same time and began planning their wedding, which was a joyous celebration in October 2018 in Duquesne University’s campus chapel. A perfect venue for their ‘in sickness and in health’ vows.
‘Sickness’ struck 10 months later in July 2019 when Chris’ lung function dropped to about 25%.
“It was at this point that I was no longer able to continue working and my quality of life was greatly reduced,” Chris said. “Even though I had only been working as a pharmacist for a little under two years, I absolutely loved what I did and where I worked. Coming to the realization that at 26 years old I simply could not keep up with even a very minimal work schedule was devastating.”
“My Cystic Fibrosis care team began to discuss a double lung transplant as my only option if I wished to return to a normal life,” Chris remembered.
Kate never left his side from the initial evaluation and testing up until the decision that it was time to start the process of getting listed for a transplant. “Kate was with me through everything. All of the appointments. Endless days and nights in the hospital. Having to adjust her work schedule to be with me. Attempting to navigate a lung transplant during the outset of a global pandemic. All of it, Kate was there,” Chris said.
A social worker at University of Pittsburgh Medical Center suggested they reach out to learn more about fundraising for the transplanted-related medical expenses they would be facing at the time of transplant and well into the future. Kate and Chris decided they wanted to learn more. On January 2, 2020, Kate placed a quick phone call to the Children’s Organ Transplant Association (COTA) to ask questions about how COTA might make things a little less stressful for both of them.
In February 2020, Chris was listed for a double lung transplant. After reading COTA’s printed and online materials and discussing the idea of fundraising amongst their friends, colleagues and family members, Chris called COTA to talk about the necessary next steps. On March 13th, Chris and Kate returned the paperwork and officially became part of the COTA Family.
The Children’s Organ Transplant Association (COTA) uniquely understands that family members who care for a child, teen or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses.
On March 13th Chris had a ‘dry run’ with a pair of lungs that were deemed incompatible. In late March he voluntarily inactivated himself from the transplant list due to COVID-19 concerns. Chris knew the hospital was implementing visitor restrictions and he decided to go inactive for “a month or so until everything blew over.” Chris now realizes how naïve it was to think the pandemic would only last a month or so, but at that time as the world’s global pandemic was unfolding there were more questions than answers.
On May 13, 2020, a COTA fundraising specialist trained the COTA for Chris volunteer team via telephone due to COVID-19 travel restrictions. The training call
included detailed information about COTA’s fundraising strategies (virtual and face-to-face) and step-by-step guidance for utilizing COTA’s online resources and no-cost website, which the volunteers and family would be given for fundraising and sharing Chris’ journey. This group of volunteers quickly started raising funds for COTA in honor of Chris to help with mounting transplant-related expenses.
According to Chris, “From day one COTA proved to be an invaluable resource to me and my family. COTA’s team of specialists assisted us with establishing a fundraising goal and providing information on how to raise funds. They also gave us a website, at no charge, for our fundraising effort.”
On August 1, 2020 Chris posted this blog on the COTA-provided website:
Quick transplant-related update. So something I did not really initially share with too many people is that considering everything going on with COVID, I made the tough decision to go inactive on the list back the beginning of April. My hopes were to go inactive for a bit, let things calm down, give the hospital time to relax its visitation rules, then go active again. Well, with the resurgence of cases both in my area as well as around the country, it is not looking like this scenario will play out anytime soon. So today, I had to make the even more difficult decision of going back to active despite the current state of COVID. You are allowed one visitor during daytime hours only so Kate can be there a bit, but everyone else who has been by my side for my entire life will be stuck on the outside. I am honestly not sure how I will be able to do this but I don’t really have an option at this point … On a happier note, we have UNBELIEVABLY raised over $28,000 for COTA in my honor. I seriously cannot believe that we made it over half way to our goal. I expect my wait this time to be pretty short. So hopefully my next update is to let you all know that I have some new lungs and can finally start my life again.”
During August 2020, COVID-19 restrictions were all fully in place and Chris had become increasingly ill. He was admitted to the hospital because he was coughing up large amounts of blood and was requiring much more supplemental oxygen. He was reactivated on the transplant list on August 25th. And again, Kate was there for all of it. The very next day Chris found out his transplant team was on the way to examine a pair of lungs that could possibly be a good match. That evening, August 26th, Chris was heading to the operating room.
On August 26, 2020 Chris’ sister, Brittani, posted this blog:
Today Chris finally got the call for new lungs. He has been waiting for a while as he suffered, and this will completely change his life. He is currently in the operating room undergoing his double lung transplant as I write this post. Prior to this transplant, he spent the last 10 days in the hospital with severe lung infections. Thank you to everyone who has supported us. You mean more to us than you will ever know, and Chris will forever honor and respect the life of his selfless donor who is giving him a second chance at life. Chris is the most selfless and strong human being and I know he will never take this chance at life for granted. This is going to be a long, difficult journey and we appreciate your support.
Chris summarizes the next part of his transplant journey this way, “My case was fairly complex and the transplant surgery took almost 18 hours. But all things considered, it went very well. My recovery was fairly uneventful — outside of being the most difficult thing I have ever done. After five days post-op, I was transferred from the ICU at University of Pittsburgh Medical Center to the step-down unit where I spent the next three weeks. Four weeks post transplant, I was discharged to home with a new set of lungs, no oxygen and a completely renewed outlook on life.” Kate was there for all of it.
The volunteers for the COTA campaign in honor of Chris, a team of dedicated family members and friends, promoted online giving and virtual fundraising opportunities with $47,000 of the $50,000 goal being raised for transplant-related expenses.
“COTA has proved to be an invaluable resource for myself and my family throughout my transplant journey to date,” Chris said. “I am fortunate to live very close to my transplant center which meant I did not have to relocate. But my family members had to incur significant expenses to come help my wife care for me during my recovery. COTA funds can be used to help with travel and lodging for caregivers, which was an incredible gift for us. We also needed to access COTA funds to help with copays for the transplant surgery itself and for the extended hospital stay post transplant.” According to several sources, the typical cost of a lung transplant is $500,000 – $800,000 depending on whether the procedure involves one or both lungs.
“While many people understand the actual transplant itself is going to be expensive, I believe the cost of a lifetime of transplant-related expenses is often overlooked,” Chris explained. “This is where COTA’s lifetime of support commitment is a tremendous asset.”
He continued, “Many of the medications I am required to take post transplant are very expensive with multiple prescriptions costing up to $500 out of
pocket each month. These are all COTA-approved expenses. The stress that financial burdens place on you can take a significant toll both physically and mentally.”
Chris and Kate are excited to be in the early stages of home buying, which is one of their big post-transplant dreams. In addition, Chris was able to return to work in the same hospital where he received his lung transplant. He has a renewed passion for his career and is very grateful to have the opportunity to help other patients who find themselves in similar situations. Chris was also able to get back on the golf course this past summer and has been working on his endurance to hopefully be able to run again.
“COTA has provided me and my family a tremendous amount of hope throughout my transplant journey. If we were not working with COTA, this entire transplant journey to date would have depleted our savings and set us back for years,” Chris said. “Prior to my transplant my outlook on the future was quite bleak. Any plans we tried to make seemed abstract to me considering I did not even know if I would be living much longer.”
Chris explained, “Now with a new set of lungs, and with COTA’s support and assistance, the future Kate and I envisioned together can actually become a reality. COTA allows me to focus on my recovery and my health … and will continue to do so for a lifetime.”
Chris said there is no one he would rather experience his ‘new’ future with than Kate. According to Chris, “It is interesting to think that Kate and I may never have met if we both were not huge nerds looking for extra work to do.”
Happy National Pharmacists Day, Chris Raybuck, PharmD and Kate Wendekier-Raybuck, PharmD from your COTA Family!
January is designated as National Volunteer Blood Donor Month by The American Red Cross. During this month, blood donations typically drop off due to holiday breaks from schools, inclement weather and winter illnesses. However, January is a month of great need for blood donations partially due to holiday-postponed elective surgeries and holiday schedules that preclude donors from giving blood. Throughout January COTA families nationwide are forever grateful to the blood donors whose blood is used for life-saving transplants.
