PHOTOS BY JAKE LEVIN (CAPTIVATE MEDIA)
Sometimes, you just can’t judge a book by the cover. On the outside, Jenna is beautiful, sweet and looks like she has it all, but her story is much more than that. She is amazing! Her struggle was a real one. She shares her story with Rochester Woman to be an inspiration to others.
She hopes to give hope to someone who might just be on the edge of giving up. She knows the feeling and she wants to tell you, “You can make it. There’s hope when you think there isn’t. Just never give up!” At 29, she was given a second chance at life and became a recipient of a new pair of lungs! This was just 6 months ago.
Jenna was like every other child. She had a brother, Anthony. Her family loved her. The Simonetti’s were a happy family. Her father Anthony worked in construction as an entrepreneur. LeeAnn was a stay-at-home mom. The family grew up Catholic. They did what families do. They lived in Greece. Jenna’s best friend is Jen.
It was when she was only six -years-old, when her whole world changed. Jenna’s parents noticed she was coughing a lot and experienced some trouble breathing. She was diagnosed with Cystic Fibrosis (CF). This is a disease where a defective gene causes a thick, sticky buildup of mucus in the lungs and other organs.
Jenna shares:“Basically, your lungs deteriorate if you have CF. You don’t make it. You either get a lung transplant or you just die. There’s only two ways out. I think before the transplant, I had about a year to live. Now with it, I could be around 20 more years!”
Although treatment has come a long way since 1962, when the life expectancy of someone with CF was just 10-years-old, life expectancy is still only 37.5-years-old (2).life expectancy is still only 37.5-years-old (2). CF is a progressive disease, which worsens through life, and the increased mucus production can cause permanent damage to organs (1). When the mucus builds up in the lungs, it causes secondary issues such as inflammation or infection making it difficult to breathe (1). When this happens, there is permanent damage which slowly decreases the lung functioning (1). This permanent damage sometimes will occur prior to a patient receiving a diagnosis (1).
At first, Jenna did not really know the difference, she was suffering from a progressive condition. She said, “Before anything, I was the happiest active kid who ever lived! I played sports and ran around. Nothing about my illness affected my family because no matter what, we were all happy”.
Jenna says she didn’t feel different. At one time, she was one of the best soccer players in Monroe County. She felt she was a normal kid. She loved to be outdoors. The family home backed up to the canal. She enjoyed riding her horse daily. The family drove around in a golf cart. She loved boating and jet skiing. Jenna loved to swim.
She reminisced saying, “I think I was part mermaid! Friends were always welcomed in our home. I guess it wasn’t a completely normal childhood. But I had it pretty good, better than most. I loved my life. I had all my pets. In the winter, I skied and snowboarded. I also played travel soccer”.Jenna has a genuine love for animals. She has a little Yorkie named Jayden, two bunnies (Echo and Speedy), a bearded dragon named Dexter and her horse Marcus. One of the most difficult parts of her life, is not being able to ride Marcus. Jenna hopes one day she will be well enough to do that. She speaks of the importance of Marcus through this journey: “I love that horse so much! I felt life wasn’t fair when I learned I was too sick to ride him”.
Jenna visits her horse regularly. All of Jenna’s pets, helped her make it through. They became her friends when she was home and all her friends were at school.As Jenna got older, things got a bit more complicated. Jenna grew up in Greece but went to school in Spencerport. She needed accommodations by the time she entered high school, as her disease progressed. Jenna needed to have access to online schooling. She watched class from a computer screen. Life was not normal. But Jenna adapted.
Cystic Fibrosis treatment often entails chest physiotherapy to clean out the mucus from the person’s lungs to prevent infections (2).
Jenna underwent physical cupping and the vest treatments. Her case was unique in that she did not experience digestive issues where she needed additional nutrition or enzymes. Her treatments were enough where as stated, it prevented her from attending high school at times. Jenna was the Homecoming queen in her freshman year. She was unable to attend her senior ball due to her illness.
Jenna is eternally thankful to her parents, her family including her cousins and step-mom, her best friend and her support system through her church, Calvary Chapel West Side. Jenna believes without the support of her parents, she wouldn’t be here.
Jenna said, “My parents are both such wonderful supporters. My whole family stood by my side throughout.”
Jenna thinks she also gained inspiration from other people.
She tells us: “Unless you go through this, it may be hard to understand. People who are fighting their own battles or fighting to stay alive, inspire me and they keep me fighting. No matter how bad you think you have it, there is always someone who has it way worst!”
After completing high school, Jenna now was faced with the dilemma of what she was going to do with her life like any other young adult. She was also diagnosed with Fibromyalgia which is a condition where patients experience chronic pain. Jenna remembers some days she could barely get out of bed. Jenna needed a lung transplant.
This is a major procedure. First, a donor must be found. This usually means someone who died donated their organs. When you are a young woman waiting and your clock is ticking, this is a very uncertain time in your life. There is always the thought of, what if they don’t find a donor what happens to me?
A patient must undergo a lengthy evaluation process to determine if they are a viable candidate for lung transplantation (3). Jenna was referred to Pittsburgh, PA for her regional transplant center and was airlifted there. This began a series of inquiries by doctors, psychologists, social workers asking all kinds of questions to determine whether Jenna qualified. The team examines the medical condition, other diagnosis the patient has, their support system, their financial condition and whether they are an overall viable candidate (3). This is a very stressful process and it is draining on families. The family must arrange travel plans to attend these appointments often not close to home.
A series of medical tests are scheduled which often include a pulmonary function test, stress tests, coronary artery catherization, bone mineral density tests, chest x-rays, CT scans of the chest, blood tests (checking kidney function, liver function and CBC) and blood typing (3). After all this is completed, the team determines if the candidate is viable and if they are they are placed on the lung transplant list (3). This is a national list and the place the person gets on the list depends on their lung allocation score (3). This is based on two predictions; how long they are expected to live without a transplant? ; and what their expectancy is after a transplant? (3).
Here’s the hard part, because it cannot be pre-planned when someone who is an organ donor will die, there is no time-frame put on when the transplant will be scheduled (3). This means basically you can live your life, but at any given moment the call can come saying we have a set of lungs (3). This requires immediately getting in the car and going if you are not hospitalized waiting. A member of the team goes to the place the lungs are and evaluates them (3).have a set of lungs (3). This requires immediately getting in the car and going if you are not hospitalized waiting. A member of the team goes to the place the lungs are and evaluates them (3).
Jenna was on the list for only three weeks. Jenna’s family experienced this ordeal two times before her actual transplant surgery took place. Recovery is lengthy after this kind of surgical procedure, as there is a risk the patient’s body will reject the organ and or they are at a risk an infection can also affect the success of the transplant (3). The patient then must comply with a stringent after-care plan including physical therapy and rehabilitation exercises, education regarding the life-long medication plan, doctor visits and continued medical testing (3).
This surgery is expected to assist 80% of the people to enjoy life without physical restrictions if the transplant is successful (3). The lung transplant procedure is different than some other organ programs because there is the use of immune suppressing meds to try to curb rejection which often causes additional issues with diabetes, kidneys and vulnerability to get an infection (3).
To obtain a lung transplant, you need a full-time caretaker. Jenna’s father took on this role. Jenna recalls he stayed by her side the entire time in Pittsburgh. Her mother, along with the whole family including her best friend Jen were a source of support and this made the process easier. Jenna was 27, when her condition worsened to the point she was oxygen dependent.In October 2017, Jenna became so ill when her CO2 levels sky rocketed. She was found by Jen in a state of confusion. She called the ambulance and they began to head toward the hospital Jenna usually went for treatment.
Due to unforeseen circumstances (a tree fell in the road), the ambulance rerouted to Unity Health. It was here a doctor suggested she was now in need of a transplant.Jenna shares what happened:“We never really talked about a transplant. October 1, I became so ill it was out of my hands. It was then I decided to take the advice of my doctors. They recommended a transfer to the University of Pittsburgh Medical Center where I was listed for a transplant. I was airlifted there. I remained in ICU being prepped for the transplant, when waiting for a donor.” The waiting began. Jenna was only on the list for three weeks before a donor was located! They went through two dry runs of getting a call and then having the lungs not be a fit. On Thanksgiving morning of all days, the third call came, they had a pair of lungs for Jenna. Jenna recalls:“Like they say, the stars have to align just right, and they did. Of all the holidays, I would never say that one was my favorite before, especially Thanksgiving, because it was all about food. Now Thanksgiving has a whole new meaning for me”.
The family rented an apartment by the hospital. Jenna was in the hospital for a month after the procedure. She and her father stayed in the apartment for the following 6 months, so she was nearby Jenna reports life is good! She can work out taking Yoga and Pilates. She is now 29. Her breathing is better than she can remember. She gained 25 pounds, which is a good thing. She weighed only 83 pounds when she went in. She did have to make some lifestyle changes including wearing a mask when she is exposed to many people. This is done to curb her susceptibility to infection. The entire first year is critical after having a transplant.Jenna reports life is good! She can work out taking Yoga and Pilates. She is now 29. Her breathing is better than she can remember. She gained 25 pounds, which is a good thing. She weighed only 83 pounds when she went in. She did have to make some lifestyle changes including wearing a mask when she is exposed to many people. This is done to curb her susceptibility to infection. The entire first year is critical after having a transplant.
Jenna talks about her life now:“Just walking is great. I drive places and park far away and am so happy I can walk all the way into a store and not feel winded. A normal person doesn’t think twice. When I left the hospital, I could not even walk up a flight of stairs, Today I can walk three miles on a treadmill and although I am thankful to Facetime to be able to keep up with my family, I look forward to spending catch up time with my nieces and nephews. I am extremely grateful I have a job that supports me and that I can work from home. I also started a jewelry business called Anchored Soul by J. (www.anchoredsoulbyj.com).
My life is full. I attend church on Wednesday and Sunday when I am able at Calvary Chapel West Side. The congregation has also been very supportive. Now that I am home, I am enjoying spending time with my mom and love that I am able to rides bikes with her and do the things I couldn’t for so long”.
Jenna was a part of the commencement of the Cystic Fibrosis Christmas Ball which in 2013, evolved into The Just Breathe Foundation. This organization assists with local individuals and their families to ease the financial burden associated with CF. Anthony, Jenna’s brother founded the organization and is the president.
Jenna shares with us the importance organ donors: “Sign up to donate your organs. There are 8 organs which can be donated; the liver, the heart, the kidneys, the pancreas, and the small intestine. One person can save 8 different people’s lives. You can’t take them with you to heaven!”
Jenna Simonetti is definitely a woman who inspires.
Resources(1). Cystic Fibrosis (2018). CF Source, Retrieved May 22, 2018 from https://www.cfsource.com
(2). Henderson W. (2018). Social Clips. Cystic Fibrosis Today, retrieved May 22, 2018 from www.cysticfibrosisnewstoday.com
(3). WebMd (2017). Lung Transplants, retrieved May 23, 2018 from www.webmd.com/lungtransplant