I was diagnosed with CF when I was only a few days old. I was born with a meconium ileus that required surgical intervention. I was a bit sickly in my first two years of life, but then remained hospital free until the age of 17.
That was when I first learned I had pseudomonas aeruginosa.
After that, I had very infrequent hospitalizations and/or IV antibiotics. When I was 24, I contracted burkholderia cepacia. At that time, my pulmonologist only had 5 other patients with this bacterium, and 3 of them had to be listed for lung transplant. Needless to say, I was scared. Somehow after six weeks of various IV antibiotic therapies, it was gone. Around age 32—I contracted macobacterium avium complex. I started to have a slow decline in lung function since that time. I was treated for the MAC and began to be sputum culture negative for a long time. I have dealt with hemoptysis off and on for a few years—nothing major…. mostly just blood in my sputum. Then, in 2015, I began having a lot of hemoptysis. So much so that I had to have several blood transfusions. It was starting to take over my life.
I had approximately five or six bronchial artery embolization’s to try and control the bleeding, but it continued. With declining lung functions and repeated hemoptysis, I was referred for lung transplant evaluation. I was listed for lung transplant at the University of Alabama in Birmingham on November 15, 2016. I have had one “dry run,” but no match. I have an enormous amount of antibodies due to all of the blood transfusions I’ve had. So, finding a donor whose antibody profile closely matches mine is like trying to find a unicorn. My transplant team has consulted other transplant centers, but they’ve all declined. However, I remain hopeful.
One thing I’ve learned from having CF is that you never know from one day to the next how your health will be. I’ve learned to take advantage of the “good” days and squeeze all of the life out of them that I possibly can. I have been lucky enough to get married, have children of my own, go to college, and have a career. Although I am now on disability, I still consider myself very lucky to have lived as long as I have. CF has taught me to appreciate the little things: stars, sunsets, sunrises, flowers, the love of family and friends. But if not for CF, I might not be as appreciative of these things. I might take them for granted.
I am thankful for the good days and I fight through the bad days.
I have, like so many other CF patients—been on death’s door before. I’ll never forget that or the near death experience I had at that time. Because of nearly dying, I have slowed down. I have become more patient and thoughtful. I am more sympathetic and empathetic.
I won’t say I’m thankful for having CF, but I am thankful for the wisdom and insight I’ve gained because of having it. I am thankful for those who support me and love me. I am thankful to have been born to parents who fought for and continue to fight for and support me. I am thankful for medical advances and medications. I am thankful to have my CF doctors. They are all selfless, innovative researchers who tirelessly work to find better treatments for CF.
I am so thankful for the things that I have sought out to improve my life that I otherwise may have never sought out.
This disease if a fickle one and you never know when your next deep plunge into the depths of extreme illness will happen. In the meantime, as I breathe, I live.
Hello! My name is Regina Pruitt. I am 43 years old and I have Cystic Fibrosis. I live in Birmingham, AL. I am married, have two sons, ages 23 and 19. I am also a Physician Assistant. I am homozygous D508F.