Worst meeting of my entire life

Health Transplant

July 27, 2014

My lung function was down in it’s 30s. My BMI was around 16. These things I knew and dealt with but then as the week went on I had developed ‘diet’ controlled diabetes WTF as if I was trying to watch what I eat and then the big one osteoporosis. I’m only 19 f&&kers. Another tablet an hour before breakfast once a week oh and throw in a few calcium tablets too. Sure ya won’t notice them. That’s cause I wont take them doc. Did you see the size of them. They are huge and you want me to swallow them. No Billy there chewable. The hint is in the name. Calcichew. Oh right doctor that’s grand. Ha. And more results started to come in and none of it was good. The bronc said I had moderate scarring In my lungs, that’ll explain the blood after a night in the GPO. and me thinking it was my liver phew. All my vitamin levels were low and my walking test was terrible (the physio did say that I was stubborn and won’t give up, she was wise beyond her years)… After the week prof mcelveanny didn’t reli comment on my whole well being.. He never said if I was good bad or indifferent. He just said we have to deal with this and by god they did.

In a meeting 3 months before my 21st birthday I was in clinic in Beaumont. My well being at the time was terrible. My lung function continued to drop, my weight had plummeted close to 6 1/2 stone. I was getting out of breath walking up stairs and my social life was none existent which might be wrong but that affected me more than my lungs getting more damaged and moving closer to the pearly gates. But that’s the way it was, my priories were up my own ass and behind it all I was probably scared. Partying drinking but never smoked fricken hate the things.. Anyway my sister Martina came with me. We both knew I was sick but we always even up to the transplant kind of made me out to be ‘fine’ it was like the elephant in the room. I was laid back as always walking in to see mcelvaney. He started by asking me how I feel and what was going on with me. Why are you in hospital so often?? Why is your weight being maintained?? Your lung function hasn’t been above 30 in a considerable amount of time. These were all questions that are very hard to answer and when quizzed by doctors like that you feel like your under pressure to give the right answer. Like a teacher but the difference is I have a lot of respect for doctors who talk to you on your own level.. I told him I was doing the moderate amount of exercise which stretched the truth a little. As I said before if I didn’t have CF I’d be fat obese and lazy. I wasn’t eating enough because I coughed all the calories up again. I was really just sick of it all. And while I was telling prof this it occurred to me that cf had taken over my life. I wasn’t controlling the cf, the cf was controlling me.

What happened next was and will always be the most shocking 5 minutes of my life. The first thing was a peg tube, this is something I never wanted. A tube permanently hanging from your stomach??? Really?? I was told it was a temporary measure and could be removed after 2 years. This never happened and the peg has got me in many sticky situation with the opposite sex. But without that peg feed I wouldn’t be alive today. I sometimes forget most people mean well and are not just doing it to get up my nose. After that was discussed and I was signed in for the most painful op I ever had he hit me with the timeline. Now the timeline to me was how many years I could get from these airbags. He firstly told me that he would like me to consider prof Egan in the mater for assessment. Martina was stunned. She didn’t think things had come to this so soon and it sent the biggest shiver down my spine ever. I felt sick and on one of the rare occasions I felt like I wanted burst out crying. I didn’t I just sat there while he went through all of my symptoms in the last two years. The main concern was the scarring and two collapsed lungs. After he summed it all up he could see that shock and sheer horror in our faces. In my head I was thinking what a bastard, surely im not that sick. I’m not on oxygen yet. This is crazy. When I regained my composure I asked him two vital questions in my own mind. The first was how long will my own lungs last before giving in. I never liked the word dying. He answered saying 2 years. The second one was what are the risks. Now I know most ppl think it’s death but I just never thought that way.

It’s not that I was one of these positive energy raikki healers it’s just that I thought I was like everyone else and whatever happens to you is meant to be. He basically said Billy you have two years left with your lungs if things keep going as they are and with a new set you will at least get 7 to 8. He wasn’t wrong things were bad but the fight never left me. The car journey on the way home was the longest journey ever. We never spoke. Not because we were mad but basically because I had two years to live. When Caroline was told she threw the phone across the room. Out of rage or sadness or just frustration i dont no but its what we all felt at the time. All that was going through my mind was that I was going to make the most of every moment and never fear. That’s life. I don’t no what went through the others mind and I think I might have been afraid to ask. Dealing with it myself is different. As I said before I was my own worst enemy and I have no doubt that is hard to watch. I have had the talks and the ‘ your killing yourself ‘ and it was out of sheer frustration and love and there wasn’t a better group of people I could have asked to be there for me. Be it stuck in Chicago with no money or spending a night In Sligo general during rag week for a split open head.

They are the best in the world.