It’s been 2 months since my last blog post and there have been a lot of up’s and downs with my health in this time.
As per usual I have been running around like a mad lady. I’d been frantically finishing school assignments, teaching year 10 and 11 photography during my secondary placement, running my business and trying to keep up with my busy social life.
Mid August came around and I could tell that something wasn’t right. I was feeling fine in myself; still plenty of energy but my cough began to get worse. I noticed that I had began coughing up small steaks of blood but I ignored it for a few days as this has happened to me before and it just passed by its self. I woke up on the Saturday and I noticed I was coughing up quite a lot of blood (this was NOT normal for me) so I decided to take myself off to emergency at Monash Medical Centre. I waited for 5 hours in the waiting room and oh what a joy that was!! I contemplated going home about 3 hours in because I had stopped coughing up blood but my intuition told me to stay. At around 6pm a doctor finally saw me and decided to admit me. As a C.F patient admitted on a weekend I found that none of doctors wanted to make any decisions without consulting my usual C.F team, so I spent the entire night in emergency! During most of the weekend I was stable and I was moved to MediHotel within the hospital but on late Sunday night I started coughing up quite a lot of blood. I was moved to the ward to keep a closer on eye on the hemoptysis. It was frightening as this had not really happened to me and I was very worried. The doctors predicted that I must have had an underlying lung infection causing the bleeding however it couldn’t be sure as my lung x-rays looked unchanged. The doctors took me off Kalydeco for 2 weeks as a precaution and to allow the mucus in my body to thicken up again to allow the bleeding to stop. My doctor suspected that Kalydeco was thinning my mucus to the extent that the bleeding part of my lung could not heal due to the fact that mucus was constantly moving around easily within my body. I stayed on IV antibiotics for a week but due to the blood thickening medication they were giving me my PICC line became blocked and I elected to go home on oral antibiotics once the bleeding had stopped.
I definitely felt the difference being off Kalydeco within the first 2 days! I went back to coughing significantly in the night and especially in the mornings. My lung function dropped 15% in 1 week and I generally felt crappy!!
I’m back on Kalydeco now though and finally getting back to my energetic self. One thing I have noticed is that I have began to actually sweat!!! Before Kalydeco I would sweat but it would pretty much be dry salt on my skin straight away but NOW I have started sweating like a normal person!! Gross but interesting fact!
I am booked into have my POST Kalydeco sweat test for the 10th of October so I will post the results ASAP.