About me

Get to know Billy

My name is Billy O’ Toole. I live in Mayo, Ireland. Let’s shock you with my past. Having suffered Cystic Fibrosis for 24 years, in October 2010, I received a double lung transplant. In January 2011, disaster struck and I got swine flu. I spent 9 days on life support, with very little hope of coming through. After 3 months of intense physio and hard work I came through. Most recently on the day of my birthday I fell and banged my head which caused a massive brain haemorrhage. I am extremely lucky to be mobile and alive. The reason I started this blog is to show what can be done if you have gratitude and a positive mind, as well as help CF patients with day to day life.

I was released from the Mater hospital on the 9th of June, 2014 at 50kg. My target is to hit 70kg (which would be a massive achievement for me).  My biggest concern was my lung function which dropped by 6%. Recently I have started a 6 week programme with Paula O Neill in Ballinrobe to build up muscle and bring this back to what it was. Weight gain was a huge issue all my life. In CF you constantly receive infections which make your body weak and you have no appetite. In the end I got a peg tube. For those that don’t know a peg tube is a tube that goes straight into your stomach and special high calorie food is pumped directly in. This tube, which I never wanted, practically saved my life, and got me to a weight that enabled me to receive a transplant. It was removed after transplant. It’s safe to say that CF patients and dieticians never see eye to eye.

My assets

70 kg
Weight Target
80 %
Lung Function
90 %
Lung Function Target

Years ago I met with a guy who was interested in putting my story into a book. The man was lovely and we had our first meeting on St Stephens green. Little did i realise when i was brought to the penguin offices how money grabbing some publishers can be. All i really wanted was to get people knowing what my life entailed and help if only one person on there journey. Now that might sound crazy but never have i been interested in the money aspect as i have begun to respect life and my sister Martina has a saying money is the least of our worries. I spent 24 years with CF 4 years post transplant with a dose of swine flu and a brain hemorrhage.  All together approximately 16 days lying in a induced coma. So I’m a typical example of where my health is my wealth. What i have learnt in the past week.  As well as being a helpful blog to others . I needed to test my brain. I needed to see how bad my memory loss is. Turns out it’s not so bad.  In the past week i continue to grow stronger and it’s heart warming to hear people acknowledge what i wrote and enjoy it. I had message from some people I forgot about and have talked to some close friends that are going through difficult times. My main issue was also my family, they needed to hear what goes on in their little brothers, sons, step sons mind. I feel this is vital as for years I spent lying helplessly with no where to go. They have been so good to me. They have all enjoyed it and once again showed me terrific support and thank all of you my friends for sharing and supporting it. What i would like to say after all the deliberation i will not be writing a book as i have found the power of the Internet is more accessible and not as greedy. It’s not the last you have heard of me. Thanks again friends.

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