Mar 9, 2015
A Man’s Journey with Cystic Fibrosis
And the transplant that saved his life
The call that saved his life
Thirty-three-year-old Frank Gritzmacher’s life changed with one simple phone call while watching director Luke Greenfield’s Let’s be Cops comedy one December night. At 8:30 p.m. of December 16, 2014 Gritzmacher received a call from an unknown number where the caller, a woman, was speaking in a heavy Asian accent making it hard for him to make out what she was saying. Thinking that the call was only a telemarketer scam, Gritzmacher was getting ready to hang up when the word “lungs” caught his attention. Pure shock and relief ran over him as the woman on the other end of the phone told Gritzmacher that a pair of lungs were available for him and that he should come to the New York Presbyterian University Hospital of Columbia in New York City immediately. At that moment Gritzmacher’s life would forever be changed.
“It’s something that is looming over you.” Gritzmacher said. “I was making as many phone calls as I could while I was packing to leave so I could tell everyone the good news, but to also say goodbye and tell them that I loved them. It’s one of those things that if something goes wrong then that could be the end. There is no waking up.”
Receiving the short end since birth
On October 23, 1981 at 6:43 p.m. at St. Mary’s Hospital in Buffalo New York, parents Albert and Bronwen “Brownie” Gritzmacher greeted their second baby boy into the world.
Not too shortly after his birth Francis “Frank” Gritzmacher was taken for a sweat test where they tested the pH balance of his sweat to determine whether or not he too, like his six year older brother Albert Jr., had Cystic Fibrosis — a life threatening genetic disease that primarily affects the lungs and digestive system.
Hope streamed through his parents as they waited at home for the results of the sweat test that would determine Frank’s outlook of life. Knowing that both parents were carriers of the gene due to the diagnosis of Albert Jr. a few days after being born the chances of Francis not receiving the gene was slim to none. Nevertheless, his parents held out hope that at least one of their children wouldn't have to go through life with this life altering disease that could ultimately end their lives sooner than they would have liked.
A few days after his birth, Albert and Bronwen were lying on their queen sized bed with Francis when they received the call from the Cystic Fibrosis Department at St. Mary’s Hospital. The two lied there coddling their child as tears wet their faces after hearing the devastating news that Francis too had inherited the genetic disease.
“As a parent, you cannot imagine that feeling [knowing your child has this life altering disease]. It was one of the lowest days of my life.” Father Albert Gritzmacher said.
Life had thrown Francis a curve ball that day that would ultimately shape his life. Luckily for him though, his case wasn't as severe right away because of the fact that the doctors now had knowledge of CF genes running in the family due to Francis’ brother, Albert Jr., who was born with an intestinal blockage called Meconium Ileus which occurs in Cystic Fibrosis patients. A doctor recognized the signs of CF in Albert Jr.’s case and quickly did testing to determine the diagnosis and get the proper medications for him. Following Albert Jr’s diagnosis, parents Albert and “Brownie” were tested and found that they were both carriers for the CF gene creating a 25% chance of their children being diagnosed with Cystic Fibrosis.
The Facts of Cystic Fibrosis
Cystic Fibrosis is a life-threatening genetic disease that primarily affects the lungs and digestive system and can only be diagnosed if both parents are carriers of the gene.
An estimated 30,000 children and adults in the United States and 70,000 worldwide have Cystic Fibrosis. This defective gene and its protein product cause the body to produce unusually thick, sticky mucus that not only clogs the lungs leading to life-threatening infections but also obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients.
Cystic Fibrosis has been studied since the 1950's when few children with the disease lived to elementary school. However progress has been made in research that has lead to dramatic improvements in the length of life and the quality of life for those diagnosed projecting life expectancy to be into their 30's and 40's and even beyond.
Some treatments that CF patients use throughout their life besides the pancreatic enzyme supplements to help patients improve their absorption of vital nutrients that they need to survive are a few techniques that help patients get airway clearance to help loosen and clear thick mucus that can build up in the lungs.
Two additional treatments that Gritzmacher was able to use throughout his life in order to help clear thick mucus in the lungs and bring it up where the flutter, the vest and the acapella.
The flutter is also known as an oscillating PEP and looks like a fat pipe. inside the pipe is a plastic cone cradling a steel ball sealed with a perforated cover. Its aim is to improve ventilation and mucus production.
The vest is a vest that would inflate with air. The pressure of the air against the lungs would cause the lungs to vibrate further more causing mucus to detach.
The acapella combines two different types of therapy into one: a high frequency oscillation and positive expiratory pressure. a lever with a magnet on the end is inside the acapella which helps to intermittently interrupt the air flow across the lever which causes a vibration in the lungs. a dial adjusts the amount of resistance and when the air is blown out of the lungs through the acapella valve the air moves the lever back and forth.
Gritzmacher grew up having to watch what he ate, take enzyme tablets, and has had to schedule his life around these treatments which he does 3 times a day for a half hour.
Luckily for Gritzmacher he was able to know the right and wrong things to do throughout his life growing up with Cystic Fibrosis, because his older brother also inherited the disease.
“I shadowed Al.” Gritzmacher said. “Seeing the mistakes he made helped me prevent those mistakes.”
Al received a transplant in 2008 around the same age as Frank is now. Frank’s father, Albert Gritzmacher remembers how Al was wheezing as he was walking up the hill to the hospital and having to take breaks.
However, after the surgery it was as if Al had been a new man. He was able to run up and down the hill and jump around without a care in the world.
Although Al was able to get the transplant that didn’t stop him from getting sick a few years later with what started out as a chest cold.
Because of the transplant Al had no immune system in order for his body to not reject the new lungs inside of him. So when he got sick he had to take antibiotics as well as his pills so his body would not reject the lungs. It was a vicious cycle that soon ended with his passing.
Before his passing though, Al asked his brother, Frank, if there was anything he wanted to ask him about the lung transplant or Cystic Fibrosis and Frank had asked “was it worth it?”
“He said, ‘Absolutely. What I’m feeling now, you need to feel.’ He encouraged me to not give up — to fight my hardest for one (a lung transplant).” Gritzmacher said.
Growing up as “Frank” not “The kid with Cystic Fibrosis”
Although Frank had been born with a looming grey cloud following him around day in and day out, he never let the disease get the best of him. For him, Cystic Fibrosis wasn't some huge obstacle in his life it was only an issue that sat in the back of his mind as he continued on living his adolescent life. As a kid, Frank was able to do everything any other kid without the disease was able to do.
He spent the majority of his life playing sports with neighborhood kids including his best friend, Paul Weller, who he has known for over 25 years.
“I didn’t want to be the kid with Cystic Fibrosis.” Gritzmacher said. “I just wanted to be ‘Francis’.”
When Frank was young his respiratory system was very good considering his genetic make-up. He was able to play backyard baseball and football with ease with friends from his neighborhood. He spent the majority of his childhood doing crazy things that today one would look back upon and think ‘what in the world was I thinking’ with his best friend Paul.
Gritzmacher first met Paul when he was eight years old. Frank was first friends with Paul’s younger brother, but as they grew older they began to grow apart and Frank began to find he had more things in common with Paul. The two grew close and soon began to create havoc when hanging out as any two teenage boys possibly could.
The two spent the majority of their free time with each other whether that had been spent putting Frank’s dog in Paul’s homemade mailbox, hitting golf balls with baseball bats in the “secret” field behind the Ray Lee League baseball fields in Lockport, New York or playing two hand touch football in the street in their childhood neighborhood.
For the pair nothing deterred them from doing what any regular teenage boy would do from sitting inside playing video games, getting into fist fights to going outside and playing sports. To them Cystic Fibrosis wasn't something to be fearful of or to stop living their lives it was just something that was there and they worked around it.
“It was something that I realized over time. One day he was coughing like a lot and I just asked him if he was okay and he told me.” Weller said about Frank’s Cystic Fibrosis. “I kind of felt bad for him, but it didn’t change anything. He was still Frank.”
As Frank reached his senior year of High School though, his respiratory system began to become an issue as breathing and doing more physical activities became a more difficult task.
“As a teenager I didn’t wan’t to do the treatments like the vest, I wanted to go out and have fun with my friends.” Frank said. “And as a teen you don’t grasp the gravity of things and because of that I suffered later on.”
As Frank grew older he found that doing daily tasks such as vacuuming the living room, taking out the garbage or even emptying the dishwasher were becoming more difficult to do. It wasn't because he was weak but it was because he found himself unable to walk too far or even talk as much as he normally would without feeling short of breath or having a coughing fit.
“It was hard staying on him with the various therapies for him to do.” Father Albert Gritzmacher said. “Even getting him to remember to take the enzymes was a task. He would have to leave bottles of them at friend’s houses when he ate over because he would forget to bring them with him.”
Even Frank’s parents didn’t want to treat Frank as this fragile child who had a life-threatening disease. They continued to discipline both Frank and Al as any parent would their kid, teaching them right from wrong, allowing them to spend time with friends and even punishing them when the situation called for it.
“We didn’t actively do something in order to make [our kids] feel “normal”, but we just tried not to let CF be the focus.” Albert said.
The birth of COTA: Team Frank G.
Gritzmacher has had a strong support system with him throughout his life. It is that support system that banded together with the Children’s Organ Transplant Association in order to raise funds for the Frank Gritzmacher foundation.
Close friend Kristina Chenault stumbled upon the COTA organization and brought it to the attention of Frank and his family. COTA is a national charity dedicated to organizing and guiding communities in raising funds for transplant-related expenses including travel and living expenses.
It was founded in Indiana in 1986 and has helped more than 2,200 children and adults and has raised more than $75 million. COTA funds are available for a patient’s lifetime for almost any transplant-related expense. For Frank Gritzmacher that would be his double lung transplant due to his diagnosis of Cystic Fibrosis.
A team of Frank’s close friends including Kristina Chenault, Max Scherer (spear-header of the COTA Frank G campaign), Paul Weller, Patrick Doty, Denyel Koury and his father Albert all teamed together in creating fundraisers to raise money to put towards Frank’s transplant needs through COTA.
COTA allows groups such as this one in order to put aside the money raised without the charity effecting social security or taxes therefore making the complete total of money that is raised at the events go directly into a personal account through COTA untouched by the government. Then when the money is needed there are no tax fees being subtracted from the account.
COTA has estimated a total amount of $30,000 needed to be raised in order to help cover the expenses of transplant, travel, living expenses near the hospital and recovery. Although they had not raised the complete estimated total, they had raised enough to cover the travel expenses to New York every two weeks and the medical bills Frank and his family are now faced with. The payment pricing has gone down dramatically since he no longer has to worry about paying to live in New York City during recovery since the doctors told him he was in well enough shape where he could commute every few weeks for his check ups.
“COTA has helped out a lot during this stage of Frank’s [journey].” Albert Gritzmacher said. “If I were [paying this] out of pocket Id probably be bankrupt by now.”
A bleak outlook and the call that changed everything
As Frank’s condition continued to get worse he found himself having to use an oxygen tank as well as finding himself unable to walk far distances or talking for long amounts of time without having to stop for a coughing fit or to just catch his breath.
“The problem was that I was getting more and more scaring on my lungs making daily life difficult for me.” Frank said. “I was doing well until March (2014) and from there I was on the fast track down.”
Frank’s family and friend stood by as they watched him slowly spiral downward with nothing for them do to help. He was in desperate need of a transplant at this time and it was his only hope for survival.
“I wouldn't have made it to March or April.” Frank said. “It was a very glum time and there was nothing I could do to change it [at that point].”
“[Frank] was gradually getting more sick. A lot of issues he was having throughout his life were becoming everyday issues.” Paul Weller said. “I was never afraid [about his disease] until then when one of my greatest fears of [Cystic Fibrosis] taking his life was becoming real.”
At this time Cystic Fibrosis wasn't something that was taking a back seat any longer. It wanted to come out and play and be noticed and it was doing just that as Frank was holding out hope for a new set of lungs.
“It was a waiting game.” Albert Gritzmacher said. “He was given a double edged sword because of his rare AB blood type. There weren't as many recipients which moved him higher on the donor list, but there weren't as many donors either.”
As he waited the grey cloud looming over him became darker as he spent the majority of his time now holed up in his room barely doing anything due to the severity of his worsening condition. But while watching director Luke Greenfield’s Let’s be Cops comedy one December night that cloud became a little bit lighter as Frank was informed a set of lungs were available for him.
Frank immediately called his father telling him the news and then went on to call his friends, letting them know that this was both a good thing as well as a bad thing due to the slight chance that he would not make it out alive.
Frank waited a total of six weeks for a pair of lungs after qualifying for the donor list whereas his brother Al, who passed three years after his transplant in 2008, had waited six months for a matching pair.
“It all came too soon.” Father Albert Gritzmacher said. “I just remember thinking that I’m not ready.”
Although Albert felt the process of finding a set of lungs was rushed he couldn't have been more relieved knowing that his son was going to live. He had been through the whole process with his first born Al and knew exactly what to do in order to keep Frank’s nerves calm.
“[Frank] was getting progressively worse.” Albert said. “His lungs were deteriorating.”
while packing for the trip to New York City, Albert says that Frank’s condition was so bad that he couldn't even walk from one end of the couch to the other without having to stop to catch his breath.
“I didn’t expect the lungs to come this fast, but I’m glad they did otherwise I don’t know how much more time he would have had.” Albert said.
Frank and his father were then transported to the New York Presbyterian University Hospital by wings of flight that night and were immediately admitted and where Frank was then subjected to a number of blood tests and soon after prepped for surgery.
At 7 a.m. on December 17, 2014 Frank’s fate was sealed as he was taken into the surgery room and put under anesthesia.
With nothing left to do but wait, Frank’s father Albert spent the eight hour long surgery waiting in the waiting lounge keeping family and friends back home updated through Facebook.
Recovery
When Frank opened his eyes slowly to the invading lights of the overhead fluorescents and became victim to the discomfort of a breathing tube in his mouth his first thought wasn't the normal panic or the thought of his discomfort but rather that he had made it.
“There was this looming cloud over [me]even after getting that call, because if something goes wrong then that’s it. It’s over. There is no waking up.” Frank said. “That’s why when I woke up I was relieved, because I had made it.”
Two days after his transplant Frank found himself sitting up in bed and making a phone call to his best friend Paul. Paul sat in his car in the Amberley Retirement parking lot after getting out of work bewildered that his best friend of 25 years was already calling him so soon after the transplant.
“I couldn't believe it.” Paul said. “This kid just got a lung transplant where they opened his chest and everything. I didn’t think he would be awake and calling me. It was a great surprise.”
The two talked on the phone about the surgery and how Frank was feeling until Frank became tired and couldn't talk anymore. Paul couldn't believe the difference in Frank’s breathing while they talked saying that even two days after having surgery he still sounded better than he did before the transplant.
Frank found the whole experience completely surreal. He had been living his whole life with short breaths that he found himself having to relearn how to just breath. He spent up to four weeks in the hospital and during this recovery time he made a concious effort to relearn how to breath, laugh, cough and even sneeze normally.
His initial “Ah-ha” moment when the reality of getting the transplant that altered his entire state of living first hit him when he was walking down the hospital hallway with his physical therapist. The two began talking about football and as Frank reached the end of the hallway he suddenly realized he was able to walk and talk without being out of breath or coughing or even wheezing. The quick turn around was unbelievable to him.
Although Frank is back home living with Paul (per doctor’s orders) he is not in the clear just yet. Frank must take a variety of different pills, keep an eye on his blood pressure and commute to New York every two weeks for check ups to make sure nothing is going wrong and that his body is not rejecting the lungs.
Even though the underlying fear of his body rejecting the lungs is there, Frank and his family remain optimistic that he received a great pair of lungs.
“[The doctors] aren't allowed to tell you, but from just watching the positive reactions, and even the surgeon’s excitement about the particular pair of lungs and the use of words such as great and good I think I got a really great pair.” Frank said.
Even Frank’s father is agreement with him saying that he thinks that the lungs came from a patient you was brain dead and left on life support therefore giving the lungs more time to last.
Once he gets the clearance to start going back to school, Frank hopes to enroll at Niagara Community College where he can get a degree in computer programming. Aside from beginning a college career and eventually a job in the computer programming where he would make his own video games he plans to be able to live a normal life once again.
“I got these lungs to live.” Frank said. “I’m not going to not do things because there is a chance that I am going to get sick. Sure, I’m going to be smart about what I do, but I’m not going to stop living my life.”
