Hello. I am Jenna. I am 28 years old. I need new lungs because Cystic Fibrosis has destroyed mine. There are two gene mutations in my DNA causing this disease, one rare and one very rare. Neither of my gene mutations will respond to the new drug Trikafta. This drug has greatly helped 90% of Cystic Fibrosis patients to improve to the point where lung transplant is not needed, and they can actively participate in their work, family and social lives. I was not as fortunate. Those who were helped had different gene mutations from mine. 

My first hospitalization was at six months for failure to thrive. My digestive system was not able to absorb the nutrients in my food due to the thick mucus blocking enzymes from getting to my stomach to do the digesting. I also had repeated ear infections and nasal congestion with that same thick mucus, which eventually caused me to be unable to suck and swallow my milk from my bottle as I would cough and cough and couldn’t breathe and suck at the same time. I was in Strong Memorial Hospital for five weeks and was diagnosed with Cystic Fibrosis.

My family took such good care of me as a child, that I didn’t know I was sick. They had to percuss my chest and back in different sections, by hand, three times a day. It took at least an hour each time. Strangely enough I usually slept through it. When I was five, I got a percussive vest which I also usually slept through!! This and digestive enzyme capsules, which were opened and the beads mixed with applesauce, kept me alive and I resumed growing and caught up with my milestones. I wanted to keep up with my fraternal twin sister Krissy who, fortunately, did not have Cystic Fibrosis. Good motivation!! I have seen through videos and pictures and have heard from friends and family that we were so very cute together and mischievous. We are still very close. 

We both went off to kindergarten on the school bus with our backpacks and my enzymes. We both started to play softball when we were seven. I continued to play on a travel team and on Jr. and Sr. varsity teams through high school. I also ran several miles each day. My next hospitalization wasn’t until I was twelve and in 8th grade. I needed a two-week round of IV antibiotics called a “tune-up”. Had another tune-up in high school. Both times my friends and family filled my hospital room with so many balloons of all different shapes and sizes that there was barely room for me!!! Either my Dad or Aunt Lauren stayed with me at night and slept on one of those chair-to-bed conversion things. Someone was aways there with me and the balloons. My third admission for tune-up was during my first semester at Monroe Community College in 2013. I then transferred to Finger Lakes Community College and from there to St. John Fisher College in Rochester, NY, where I lived. I graduated with a BS in Business Management/Accounting, but before I did, I began having trouble keeping food down. A diagnosis of appendicitis was not determined until I had lost 30 pounds and with that, my lungs plummeted in function. Removal of my appendix helped with the immediate problem, but I have not been able to gain back much weight or lung function.

Through high school and college, I managed to work. My first job was at TOPS Market from 2012 to 2019 where I rose to front end manager. During that time, I also had a second job at Reeds Jewelers while at Finger Lakes CC from 2014-2015 and a different second job at Elsevier while I was finishing up St. John Fisher. Then in May 2019 I got my first full time job with Enterprise Rent A Car. I was promoted to a position in Human Resources there. My health continued to deteriorate, and I had to take a long-term disability leave to work on gaining weight which would help my lung function to improve. In 2022 I was still not able to return to work and was terminated.

Since the appendicitis issue, both my digestive and respiratory health has spiraled down to where I use a wheelchair to leave my home, need full-time oxygen, need help with all daily activities and have had multiple medical complications.

​-I have had 4-5 hospitalizations a year for tune-ups and other major issues
-I am on my second gastrointestinal tube in my stomach for tube feeding with which I have a lot of difficulty. I throw it up easily.
-I’ve had six pneumothoraxes (partial lung collapses)
-Multiple chest tubes
-Multiple PICC lines
-A port IVAD
-Multiple nebulizers for different treatments
-TPN (total parental nutrition) 
-Liver failure
-Rheumatoid arthritis
-Non-functioning gall bladder

This is but a thumbnail sketch of my life since I had to stop working. It is difficult to communicate the stress, depression and anxiety that has increased to the point where I am medicated for that, too! I have a super supportive family, friends, a wonderful care-taker and an emotional support dog, named Bailey Blu, who all work hard to help me stay afloat. Unfortunately, what I need now is a double lung transplant. My family cannot afford all of the expenses associated with this surgery and my hospital bills, so we’ve partnered with COTA for assistance. I have been working with a Transplant team at NY Presbyterian Hospital in NYC and am in the process for finalizing a date to go there for my first in-person visit. 

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.