Where we are and where we want to go

Goal Health

July 9, 2014

Since my recent scare I have had hundreds of cards, endless texts and very worried people. It’s genuinely impossible to tell anyone how you are. CF and swine flu were physical diseases that could be treated with medications/antibiotics, and they either worked or not. Endless physio sessions, and countless IV antibiotics were part of life, but there was always one question……………How long have these lungs got???? We know we have a chronic disease but we are afraid to admit it. People ask me how do you do it but its simple. You can only deal with what you got. In my favour, were the people around me. I surround myself with positive people and nothing else. My family have broken phones, had huge rows with doctors over my behaviour and the frustration of the condition I had and still have. Yes people, I still have CF but have new lungs that will see my life prolonged.

Currently I am physically at the end stages of recovery. Cognitively I still have long term memory loss and am on a waiting list to get a bed in the National Rehab Hospital in Dublin. I have come a long way from the 3rd of May, 2014. I was moments away from brain surgery in Beaumont. And my family were informed that I was in a Life/Death situation, and even if I would recover, it would be highly likely that I could be left disabled, and fully dependant. This was the second time they had heard this and the 3rd time for Martina. Poor Martina was with me when I had my transplant and was told during the wait by a Dr Gerry Metri that if the lungs didn’t match , I had a few days left to live……………my lungs had finally given in. When I got Swine flu , this was the only time I felt like giving up. I felt as if I was being suffocated, or drowning. I am forever grateful to my CF nurse Lorna O’Connor, and physio Sara English for keeping me alive until I was ventilated! My NEW lungs were full with fluid, and family were called, and again told to prepare for the worst! But a plethora of antibiotics and medication stopped this. I came through after spending 8 days on life support.

The Brain Haemorrhage was tougher because it fucks with you mentally. With everything else it’s physical and you can always see a way around it. The brain is so complicated and delicate, and there is no way of knowing how it is going to recover. That famous saying………………The Fear of the unknown!!! I can’t drive for 6 months work or drink. None of this bothers me as I have time to do all three. At the moment I am forcing 5000 calories a day into me, through protein shakes eggs and 2 dinners. It’s not easy but I have never been so focused or determined. I have proved medicine and doctors wrong so many times, they think I am made of steel . My body is not made of steel. I am stubborn and will not give up. Everything happens for a reason and I firmly believe I am here for some divine reason. What that is, Fuck knows but time will tell.