Julie s New Lungs
This is our dear friend Julie. She's been battling cystic fibrosis her entire life and is now awaiting to be listed for a double lung transplant. Because her health has been deteriorating so much in the last few years she's been unable to work. In order to prepare for the anticipated surgery she must relocate four hours away from her home. A month prior to surgery and minimum 3 month stay afterwards. We are praying that people will help us raise the funds for her to be able to stay that long and for her family to be able to come back and forth to see her. Researching the cost of staying in Toronto has left us to believe that right now she will need at least $5,000 prior to and much more after. . Her lung capacity and other health issues have brought the doctors to believe its time to list her. So now we wait for the call as we try to prepare for this anticipated day.
Julie is an amazing person who deserves to have this second chance of life. She has beat so many odds already please help us help her. She is such a strong girl and has fundraise for Cystic Fibrosis along the way . Now its our turn to be strong for her
Take a deep breath in.... this is something that we take for granted. This is not something Julie can not do on a daily basis without struggling or coughing. I've asked her to write down something to explain to people what she's been through during her lifespan with cystic fibrosis.
I was diagnosed with Cystic Fibrosis at the age of two months due to failure to thrive, I had only gained two ounces in my first two months of life. Think about a two month old baby being 5 pounds, something wasn't right. Since that diagnosis, I had a relatively ok childhood, I still had health issues and required a lot of medications such as large dose vitamins, breathing treatments, and physio therapy done on my lungs everyday to maintain that health.
My first hospital admission for IV antibiotics came when I was 18, and with that admission I had lost most of my lung function bringing me down to 39%. I did bring that back up to about 45% but at the age of 20 I suffered a tension pneumothorax, or a fully collapsed left lung that was laying on my heart, due to a hole that ruptured in scar tissue in my lung during a coughin fit. That required two different sized chest tubes to re-inflate, ultimately my lung was unable to repair itself because of where they hole was so I had a procedure called a pleurodesis done. In short my lung was chemically and permanently burned sealing it to my chestwall to keep it up. While it is an extreme procedure that at the time in 2001 excluded me from being able to have a transplant, it was my only option at the time and it has in the end been beneifical to extending my life to more than I would have had without it. Since my early 20s I have struggled with episodes of hemoptysis, which is where the lungs spontaneously bleed. Luckily I have never had large enough amounts of blood to be life threatening but any time you experience these episodes it can snowball to being that, quickly. In 2005 at the age of 24 I was diagnosed with Cystic Fibrosis diabetes and now required two forms of insulin to maintain. I have had two sinus surgeries as a result of Cytic Fibrosis as well. Currently I take 40-50 pills a day, for Cystic Fibrosis, high blood pressure, osteopenia, I take 3 nebulized (inhaled) medications multiple times a day, two puffer inhalers multiple times a day, and still do physio therapy on my lungs with the VEST or my flutter. This means that spend the equivelant of a full time job working on maintaining my health and had to leave my job in 2008.
With all that work, I still experience frequent lung infections requiring IV antibiotics which take a toll on your lungs and your ability to bounce back each time. In 2015, I had an infection that I need antibiotics for and I ended up having a reaction to the high dose of that certain antibiotic which resulted in me becoming febrile neutrophenic, essentially I had no defenses to fight the ravaging Pseudomonas infection in my lungs. This has greatly affected my bounce back. While I've lived years, my whole adult life, with low lung function, I usually bounced back to baseline after infections, this time that had changed.... I didn't bounce back. I was then referred for a double lung transplant assessment, which was done in December of 2015. At that time it was decided while I was a good candidate and at transplant level lung function wise, I was still independent enough to hold off. So I continued being followed by the transplant team through out 2016. In September of 2016, I was told if I was struggling and felt I needed to list they were okay with listing me but I still felt I was stable enough to wait another 6 months. In January of 2017, I developed severe bacterial pneumonia from my Pseudomonas infections, this has affected my bodies tolerance, my 6 minute walk test compared from September to March has dropped significantly, which means my body has slowed to match my lung function now. I have been also using Oxygen full time since my transplant assessment in 2015.
A transplant would give me the opportunity to get back to normal life. It's by no means a cure for Cystic Fibrosis, it's trading one thing to manage to something else. But it will hopefully provide me the opportunity to get back to living without struggling with basic household chores, walk and play with my dogs, be the aunt, friend, and partner to my boyfriend of 12 years that I want to be an I currently am not. I've never really been able to breath normally, and this will give me that chance. Which makes all the work that comes with transplant, worth it.
