Molly's CF Medical Fund

I was diagnosed with cystic fibrosis at the age of three. This is a chronic, life threatening illness that has affected my pancreas, spleen, liver, lungs and digestive tract among other things. Only 70,000 people worldwide have cystic fibrosis (CF), 30,000 in the United States. There are roughly 1,500 different mutations. My exact gene mutation is F508del, which affects 50% of CFers. This mutation is one of the more severe mutations of CF. At the age of 34, I have reached a critical stage in in my life where the damage to my lungs and liver is so severe that doctors can do little to nothing to treat them. I am only able to use 35% of my lungs capacity, but with the possibility of getting back up to 40%-45%. The remaining percentage can never be used again, due to scar tissue, ultimately resulting in the need for a double lung and liver transplant in the future. I am currently doing all 3 days of testing and prep work that is needed for these procedures. This is not surprising since the predicted median age for a person with CF is mid 30's to early 40's. However, I will not stop fighting despite my circumstances.

Through the years I have prided myself on taking the best possible care with the everyday duties that having cystic fibrosis entails. My daily duties range from taking over 40 pills a day, checking my blood sugars 10x a day and administering insulin with each meal and in the morning and night. I must also do nebulizing lung treatments up to 3x a day, which can last about an hour each time, and do physical activity to keep my lungs healthy.  My body works twice as hard as a normal person and unfortunately at 34 years old, my body can no longer handle the heavy effect CF has done to my body.

The end of August and middle of September this year has been especially tough on me. I have been admitted twice to the Hospital University of Pennsylvania (HUP), the first time was for a “tune-up.” CFers use this term when they are admitted into the hospital for a week or longer, put on IV antibiotics and do lung treatments 4x a day along with meetings with dieticians, physical therapists and other doctors to talk about the best way to keep me healthy outside the hospital. The 2nd hospital trip was more intense, I unfortunately got to experience my first ride in an ambulance because I was unable to breath on my own. I was rushed from the ER to the ICU and was constantly monitored and put on 5 liters of oxygen. Before the troubles I had in August, I was put on 2 liters of oxygen at bedtime because when I slept I was not getting enough oxygen that my body desperately needed. So as of today, I am on 3 liters of oxygen constantly. My life has been completely altered needing to be on oxygen 24/7. I can no longer leave the house for more than 3 hours at a time because that is all the portable oxygen that my insurance carrier supplied me with. While at home, oxygen is not an issue but to do something as minor as going to the grocery store, has become a hassle because I have to change oxygen canisters every hour and then worry about running late and then running out of oxygen. I’m hoping that as each day goes by my lungs will get back to where it was prior to my last hospital stay and I’ll only need oxygen at night.

So, now you know my story and why I have created this page. This is why I am asking for so much in the donation box. With your help I would like to purchase a portable oxygen machine that I can take anywhere and not be limited to just 3 hours. I also might be able to even travel and see my family and friends throughout the country. These machines cost over $5,000, which I do not have and insurance will not pay for. My loving family and friends have supported my long journey battling CF, which I can never properly thank them enough for. Your donations will help me purchase a portable oxygen machine, and any extra will go to the rising cost of my medical care and possible transplant costs in the future. Thank you from the bottom of my heart for your support.