It's time...

Firstly I must apologies for my writings are far from exotic. I am having trouble concentrating for long periods of time, that being 5 minutes or longer and I am so exhausted it seems even typing is a challenge. But I still manage to ramble.

Most of you who read my blog are friends who would know by now I have very recently decided to go and live with my Brother and Sister-in-Law till transplant. My Wonderful family have up rooted themselves and relocated from Manly QLD to come live in Beaumaris Victoria. I cannot relay the relief I am feeling knowing that I no longer have to struggle just to make baked beans on toast. We have a lovely home, a home by the beach. It will be a place of relaxation and healing.

My most recent clinic appointment last Thursday did not go exactly to plan. Guess over the past year I have become a little complacent. I rely on the knowledge that when my lungs get tired and sore I can check myself into club med for treatment. This treatment is very aggressive and consists of such extremely high dosages of Hydrocortisone that the Doc’s are poisoning my body. But as tough as it is, I always come out feeling just that little bit better. This will get me through to transplant, I will keep going on this treatment. Or so I thought. But this is not always the case. The lungs just get to a point where the function is so limited treatment alone will no longer help them function, along with this the gas builds up in the blood and poisons us. At this point respiratory arrest is imminent.So I went to clinic thinking it will be the same as any other visit. They listen to my lungs, take bloods, weigh me and tell me “keep your phone close by”. Then after a quick, friendly chat with the nurses and co-ordinators, I drag my sorry ass out of there.

But this time was different.

I look at my lovely Irish consultants face and know. He asks me over and over, "what are you doing"? I don't understand what he means. I shower which takes forever, I get about the house slowly and do a bit of housework. Apart from that I can’t do much at all. My lovely Irish consultant listens to my chest and listens intently. “Where are you living”? “As of this weekend I will be residing with my Brother and Sister-in-Law. My Boy’s living together in their own house” I say. He listens to my lungs again. “What other arrangements have you made”? “What other arrangements do you mean”? “Do you want me to check you into hospital so you can stay with us, or do you want to go home”? “I don’t want to come in for treatment unless it’s necessary, how long would I be in for”? “As long as it takes”. I am enlightened. I feel sick to the stomach. Too frightened to ask, I don’t want to hear it.

He takes my hands and with tears in his eyes he looks directly through me, in a very soft yet reassuring voice he says:

”It’s time”.

His words echo, ringing in my head and even though I know exactly what he means I question myself. What does this mean? What does he mean? What does it’s time mean? I can’t ask him, too weak. So I pop a smile on my face and in my happiest go lucky voice I say: “So what’s happening”? “Your lung volume is 15%, you have totally fixed obstruction, I am sorry, and it’s time”. There it is again.

My lovely Irish consultant, my savior, with elbows on his knees he firmly plants his face in his hands. He looks so defeated. So sad. I want to console him. He pulls himself together takes a deep breath and looks up, but this time he does not make eye contact. His face bright red. He weighs me and books me in for my next appointment. I have bloods taken. The coordinator taking my bloods say’s:“it’s ok you don’t have to say anything we know”. God, all these riddles are driving me insane. I look up to see my lovely Irish consultant being consoled by a nurse. I am out of my body looking on, like a voyeur secretly listening on a conversation that I am not supposed to hear. The nurse standing behind my lovely Irish consultant circling her hand on his back saying: “It never gets any easier”.

I scream inside my head. Don’t give up on me. Please don’t give up on me.

I leave clinic and pass through the waiting room. I see a little girl, a little girl about my size. A little girl in need of lungs. I cry for the drive home.

It's too soon, I don't want to go. Please God, please pass me by.