Leisa’s Epilepsy Journey

Hi my name is Leisa. Firstly, I have added a photo that was taken sometime ago (when all three of my babies were still little) as I can’t find a more recent one of the four of us together! Asking for help has never been one of my ‘strong’ points. However, after some encouraging words from friends, I decided to be brave enough to ask for a little assistance with my upcoming medical costs to investigate further what is happening in my brain and with my heart. I fully understand the cost of living in Australia currently, and the devastating impact it is having on so many families including mine. Any amount would be greatly appreciated and I will be sure to pay it forward. Any extra money that is left over, I will be donating to the Epilepsy Foundation, and if possible, The Heart Foundation also. Two weeks ago, on a Sunday morning I was having coffee out the back with my incredible, soon to be 20 year old son and his two younger siblings, aged 8 and 11. My eldest has been a pillar of strength for me and, for his younger brother and sister in recent times, due to some medical problems I have been dealing with for some time now. He works very hard and long hours, and is the only reason we have been able to keep going. On that Sunday around 11:00 am, I was feeling ‘off’ is the best way to describe it. I told my son I needed to lay down as I wasn’t feeling well and asked if he could watch his younger siblings for an or so while I rested. Within a few minutes of laying in bed, my heart rate jumped up to 160bpm (I do suffer from SVT) however, this episode was completely different. I went to sit up and do the exercises I have been shown to do from a Cardiologist years ago, but then suddenly, I lost my vision and everything went white. Terrified, I screamed out for my son who came running in and told him to call an ambulance. I told him something was very wrong but I couldn’t explain what. An ambulance was on the way and my son sat behind me, holding me and keeping me calm but before I knew it, I started to have a seizure which I have never experienced in my life. A very long story short, I ended up having in total, 11 mini seizure episodes, where according to the Ambulance and my son, after about the fourth one, I lost consciousness, bladder control stopped breathing for around 10 seconds during each subsequent seizure and, lost all sensation down my left side. My eldest son, as incredible as ever, was able to keep me calm during the lead up to the first episode (the rest, I don’t remember). I have been diagnosed with a form of Epilepsy, which type they’re still unsure of, as so far the evidence has suggested that there is some kind of issue with my heart, more serious than my SVT. Due to the immense strain on our public health system, the current wait time for all of the investigations required, is between a 3-7 month wait list. I cannot thank the amazing Neurology Team at The Royal Brisbane And Women’s Hospital enough for their dedication and compassion at this very scary time for me and my children. They have referred me to SEER MEDICAL, a company the first of its kind in Australia, who will be able to keep me out of hospital and at home with my children, where they can set me up with a device that will monitor my heart and brain activity for 7-10 days, 24 hours a day. However, it does come at a cost with Medicare only covering a portion of the cost. Following the results of that study/test, I will then be referred to a private Specialist Cardiologist at St Vincent’s Hospital in Brisbane. She is one of the best in her field however, the initial consultation fee is $800 if you don’t have private health insurance. Subsequent consultations cost $400 per appointment with a small Medicare rebate. It is likely that I will be having surgery on my heart to correct the electrical issue first then a possible procedure on the brain after that. Medication has commenced but the side effects of that are, to put it politely, pretty shi%ty! I have now been prohibited from driving, I have to have someone with me round the clock in case I have more seizures and, I am obviously now unable to work. My beautiful 19 year old son has been off of work for two weeks now and needs to return to be able to keep us afloat while I am unable to work. He works incredibly hard in the construction industry and very long hours and has recently asked his boss to work Saturdays as well to help out with my medical costs. Any amount, whether it’s $1.00 or $50.00 would make a huge difference. Thank you for taking the time to read my story.

Leisa xxx